[CMLHope] How are you!
How are you doing today? Hope this email finds you well? will be so glad if you can do me a favour cheersAngie Sent from my Huawei phone -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/567666013.3614086.1583246909414%40mail.yahoo.com.
Re: [CMLHope] Fun thing to do
I was a smoker. How many of us were smokers? One day at a supermarket I was in the direct line of fire when an old lady on a scooter hit a display of Javex. It splashed all over me.completely ruined my clothes...and I had to drive home on that VERY HOT summer day(two hr drive) in clothing soaked with Javex. Apparently it absorbs through the skin. I felt very ill the next day. I have always wondered.. I was cleaning calcium deposits off of seashells using CLR. It worked very well. I did not wear gloves. I have always wondered. Angie From: 'Jeanie' via CMLHope To: cmlhope@googlegroups.com Sent: Monday, February 6, 2017 6:08 PM Subject: [CMLHope] Fun thing to do Let's all make s list of all the things we were doing when we got CML. Things that we didn't normally do or that were done every day. Mine were: Exposure to pesticides Dental X-rays more than normal Donating blood Deep grief over loss of hubby Thanks group. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] 39 years with cml
Skip, I was really moved reading your story. I am Canadian and didn't know til now that you are from NS. Your story has made me ever more grateful and appreciative for my good fortune. I started Gleevec in January 2001 and was in remission by July of that year. I am now almost finished my 2nd year of treatment free remission. You sound like a brave and wise man.God bless you and keep you.Angie in Brantford, Canada. From: skipd To: CMLHope Sent: Wednesday, February 1, 2017 7:04 PM Subject: [CMLHope] 39 years with cml /just want to say hi to all you cml'ers and to let you know I am still on the green side was talking to Marty he told me to get on In case you do not know me here is a place you can see but its not finished still have about 10 years still to enter http://easyskipcacom.coffeecup.com/index.html -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Marty
Sorry to hear this, Marty. You sure have a heavy load to carry. I broke a vertebra in August and I agree...the therapist is sometimes a bit rough on me. It's supposed to make you feel better, right? I think she is doing her best for me. Maybe a little less enthusiasm is needed sometimes.Sending you all sorts of best wishes that you will gradually get better and better in your mobility. Leave the jitterbugging for the time being. Take care18'sAngie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Tuesday, November 8, 2016 10:35 PM Subject: Re: [CMLHope] Marty Hi Angie, I am still not feeling well because one of the physical therapists was a bit to aggressive and that was a few weeks ago. From then on I have been suffering from swelling and pain so I told him that he is not what I need. I just went to a wonderful physical therapist and I had my first meeting with her. I less then one hour she was able to get some swelling down, so that is a plus. I'm not able to jitterbug but I have no desire to do that. What I would want is to be able to wash my face with both of my hands or feed myself without being able to lift the spoon or fork to get them into my mouth, but I can although it hurts. Since I am left handed I usually feel more comfortable using my left hand and arm. My neck is getting better but I still have a very long time to go and my range of motion has declined and probably will not get any better. Now I am getting over with some basil skin cancer. The dermatologist did the Moes surgery in his office. The stitches will come out on this Thursday morning. You have to understand that I received total body radiation and have been on immune suppressive drugs so that is why my kidneys failed and I received a kidney transplant as well as a cataract operation. All of these can cause skin cancers and anywhere on the head or face they require moes surgery. I have a friend living in this community who had a kidney transplant and in the past sixteen years he had many moes procedures. This may be graphic but is what it looks like. At least they can usually get these things out. But you already know me and I usually don't like to complain. 18's, Marty On Tue, Nov 8, 2016 at 8:47 PM, ANGELYN ESDERS wrote: How are you doing, Marty? Feeling better?Ready to jitterbug yet?-- -- [CMLHope] A support group of http://cmlhope.com -- --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to CMLHope-unsubscribe@ googlegroups.com For more options, visit this group at http://groups.google.com/ group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscribe@ googlegroups.com. For more options, visit https://groups.google.com/d/ optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Marty
How are you doing, Marty? Feeling better?Ready to jitterbug yet? -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic
I had wicked cramps from Gleevec.15 years ago. A heavy yawn once got me cramps in my throata very unpleasant feeling!Over the years the cramps all over my body diminished and disappeared.HURRAY! From: Myvety2k via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, October 20, 2016 8:38 AM Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic Gleevec gave me and still dose give me cramps, I use a bar of Dial Gold soap and put it down along my legs. It dose help. greenie In a message dated 10/17/2016 5:21:17 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Yes I had terrible cramps on Gleevec. Even had trigger finger. Had to get up in the middle if night to walk out leg cramps. I too was put on Sprycel. And yes I would look in mirror and not recognize myself. Just keep on fighting warriors. Blessings My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 30, 2016, at 4:58 PM, lrc lrc wrote: Gleevec has a big history of muscle cramps, especially in the hands and the legs. Gleevec also has side affects that include skin that is thin, white rings around the eyes, water retention around the eyes to name just a few. I moved from Gleevec to Sprycel years ago and all the Gleevec issues disappeared. It was a wonderful change. I suggest you review it with your oncologist. I am under care of the University of Michigan Cancer Center, Dr. Talpaz. On Fri, Sep 30, 2016 at 12:42 PM, NICK WOODS wrote: We're happy to hear you're on the mend, Marty. It's been good to read other persons updates in their lives of CML and family changes, etc. Sending sympathy to those whose family members have died within the past few months. It's been so tough on each CMLer as we age or our family members are diagnosed with other types of cancers. Nick's got a Zauve's O Club number, but it's been a while since we've posted it. Does anyone have a list? Wondered if any other persons with CML on Gleevec are experiencing multiple muscle cramps? Or have large muscle wasting? Thanks, Elizabeth Woods Nick's wife On Friday, September 30, 2016 5:18 AM, "cmlhope@googlegroups.com" wrote: | cmlhope@googlegroups.com | Google Groups | | Topic digest View all topics - Angie, your card - 2 Updates Angie, your card | ANGELYN ESDERS : Sep 30 12:20AM You are most welcome.I fractured my 9th vertebra a month ago. I have had to give up almost everything I do. I understand pain.May we BOTH be dancing on tabletops by this time next year!Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, September 29, 2016 12:05 AM Subject: [CMLHope] Angie, your card Hi Angie, you were so thoughtful to send me a get well card, and I wanted to thank you for your kindness. 18's, Marty-- -- [CMLHope] A support group of http://cmlhope.com/ -- --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to CMLHope-unsubscribe@ googlegroups.com For more options, visit this group at http://groups.google.com/ group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscribe@ googlegroups.com. For more options, visit https://groups.google.com/d/ optout. | | Marty Gartenberg : Sep 29 08:45PM -0400 Angie, There is a saying in the Aramaic Hebrew language Alivay Meaning Thank you GOD for what you have done for me. Also I am not looking to dance on any tabletops because both of us would probably fall off and break something. Lets just both of us dance on the floor together. Oh Angie don't worry we will get there. 18's Marty | Back to top | You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscribe@ googlegroups.com. | -- -- [CMLHope] A support group of http://cmlhope.com -- --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to CMLHope-unsubscribe@ googlegroups.com For more options, visit this group at http://groups.google.com/ group/CMLHope --- You received this message because you are subscribed to the Googl
[CMLHope] Zavie's List
This is all I have... ZERO CLUB MEMBERS No. Name Surname City St Comment 1 Marty Gartenberg Staten Island NY BMT from sister. I now live in Florida 2 Linda Bartlett Cody WY Gleevec 3 Jeanelle Street Nederland TX 4 Vinny Carrasco 5 Rob Gebauer Roseville CA 6 Suzan McNamara Montreal QU Petition originator. 7 Cynthia Duty Arlington VA Mother is Kim 8 Dorothy Emery Denver NC Helped with album 9 Jill Jones Husband is Richard 10 Ellen Rubino New York NY Mother has CML Email doesn't work anymore 11 Bob Andrews Relapsed. Was in accellerated. 12 Margie Bovee Saline MI Sees Dr. Schiffer @ Karmanis in Detroit 13 Jane Graham Seattle WA 14 Marilyn Phillips Buckhannon WV Son Tim writes. 15 Chris Posadas Laurie? 16 Wayne Becken Niagra Falls ON Trial in Detroit. Diag. Mar 1989 23 Fran Evertsbusch Anchorage Alaska INF, now on Gleevec, name is Maiuri 33 Angelo Arizzo Goes to MD Anderson 34 Scott Read Kaysville UT 44 Cliff Layman Raleigh (from Schenectady NY) NC see Dr. Shea and Dr.Powderly in Chapel Hill. 45 Alayna Leppke OK 47 Joyce Ward Pickerington OH Early chronic, 0 at 3 mos. Heart attach, 1/20 in jun03 49 Dave Schulz Detroit MI Had a self transplant. 50 Giora Scharf Natanya ISR 0 by Dr. Hochhaus 52 Bob Aylesworth St. Petersberg FL Wife Dawn 54 Bob Stewart Granger IN Wife Pat 58 Judy Orem Portland OR 59 Pete Pabon Palm Harbour FL Moved from Bayside NY 60 Ken Allen 61 Riza Yilmabasar 62 Lorraine Rollo 64 Dave B. INF only 65 Jennifer Gangloff 66 Nancy Belcher Alameda CA Liver toxicity 67 Thea Rosen Dr. M. Shurafa, Henry Ford 69 Kristin Olson Lieberman San Marino CA 70 Diane Wiley Coronado CA mom hDaughter is Laura Civilikasas cml 71 David Cranmer Shelburne VT BMT relapse, wife is Allison 72 Abe Weintraub father in law Barry 73 Fposades Fish BMT 74 Dianne Ness Mpls MN Husband Paul, INF 75 Richard Rockefeller Falmouth ME Dr., was on peg inf, MSKCC 76 Angely Esders Brantford ON Canada...Gleevec 77 Dana Huddleston 78 Richard Schenk Harpers Ferry WV 79 David Greenberg Hobart IN 80 Sylvia Guenther Toronto ON 81 Harmony Jaursch 82 Susan Geller Chicago IL INF, daughter Jodi has CML 83 Sandra Craine London UK lives in UK 84 Victoria Bartling 85 Marajou Janse The Hague Netherlands 86 Steven Flack San Diego CA 87 Mithun Kamath New Orleans LA 15yr, dad is Burde 88 Linda Ginn age 44 89 Phylecia Wilson 90 Peter Capel Walton on Themes Surry From Elizabeth Rees - Hammersmith 91 Steve Harvey 92 Georgia Coats Dearborn MI age 28 93 Ruth Marcon Allentown PA Dr. Shuster, NY Presbyterian 94 Tracy van Houwling Leiden NL 95 Jack Plummer Aventura FL From ACOR, Dr. Talpaz 96 Bruce Weinstock Richfield MN Had a BMT. Relapsed. Gleevec 97 Terry Lowell Littleton CO 98 Doug Tan Kuala Lumpur Malaysia 99 John Rowe Oxon Hill MD Wife Marguaritte, after 12 mos on Gleevec 100 John Calderwood Vancouver BC Still waiting. 1% left. 101 Susan Carrow Buffalo NY 102 Zavie Miller Ottawa ON 103 Amy Fischer Boca Raton FL 104 Unlucky for Japanese 105 Ken Ito Japan 106 Darlene Shepherdsville KY 107 Charlie Jensen Fort Colins CO Wife is Vicky. Relapsed Mar02 108 Ladonna Lopossa Winlock WA 207 E Walnut #22 Winlock WA 98596 FISH 0 360-785-0907 109 Steve Robinson Longview WA Wife Jenifer, met at LTN 110 Syad Ansari 111 Lisa Martinez Tampa FL 112 Gale Woliver (Bacon) Dallas TX 113 Genie Boutchia Plymouth MA Dana Farber, Dr. De'Angelo 114 Chris Duce San Diego CA His mom is Paty 115 Bonnie Liebergot Chevy Chase MD harris.liebergot.nist.gov 116 Sal 117 Anna Powers 118 Doris Kentucky KY 119 Paula Sapinski dxd 5/4/2001 120 Joe Stark Grove OK Wife Mary, going off G May 2004 121 = Mulone Astoria NY Frances dx 5/22/2, Gleevec 5/25/01-10/2/01 bma-cyto 0% in 3 mos. 122 Beth Petrich From European Site 123 Shelley Orenstein Boca Raton FL 124 Max Hoefler Germany 125 Keith Sharrock 126 Sydna&Bob 127 Richard Wilday 128 Caroline MacDonald Husband, Steve 129 Keith Danby 130 Ruth Waldhauer La Honda CA 131 Eugene Leyvi Gene int then gleevec 132 Mark Frazer Australia see website 133 RoxianneBMT 134 Roberta Troyer Fallston MD From Jerry's list, showing resistence 135 Jirapon Chaimongkon Bankok Thailand 136 Lloyd Peterson Brother has CML Steve 137 Ron Vietti Bakersfield CA Pastor at Valley Bible Fellowship 138 Laura McCourt 139 Sandy Butler 140 Mary 141 Donna Dunn Tuscon AZ Cousin Avis Allen writes 142 Bob Farmer Bremmerton WA BMT 1993, Zero 1996, pH+ 1997, pH- 2000, see http://oc.itgo.com/ 143 Judy Levine PA 144 Bill Buckberry Hendersonville TN Wife Sue. 300mg Gleevec 145 Jehuda Driori Tel Aviv ISR His son Shai writes 146 JohnFrom Jerry's site 147 Al Rhodes Wife Lynda, at VA hospital 148 Bob Whitaker South Florida FL Wife Odile 149 John Wall Fayetteville AR 1 yr on STI 150 Doug Jensen Hood River OR Patient 13, found him in CBC news doc 151 April Bowers See Miles 151 Miles Bowers Jacksonville FL Daughter April Bowers Davis 152 Jamie Malizia O
Re: [CMLHope] Angie, your card
You are most welcome.I fractured my 9th vertebra a month ago. I have had to give up almost everything I do. I understand pain.May we BOTH be dancing on tabletops by this time next year!Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, September 29, 2016 12:05 AM Subject: [CMLHope] Angie, your card Hi Angie, you were so thoughtful to send me a get well card, and I wanted to thank you for your kindness. 18's, Marty-- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] All zero club members
I am # 76 From: 'Jeanie' via CMLHope To: 'Jeanie' via CMLHope Sent: Wednesday, September 28, 2016 7:30 AM Subject: [CMLHope] All zero club members Hi Florida - Sue Hurt If you haven't signed in yet and have your zero zavie club number do so as soon as possible. facebook page to reconnect to those who were Zavie Millers Zero Club Members • Zavie - CML Zero Club Members - Where are You ? Facebook Forum. I require a little about yourself with CML, I also require your Zavie Zero Club number. The Forum is vetting expressions of interest of security so that conversations can remain private This Facebook Forum is a closed site for that reason The Forum is only for those who have received a Zero Club Number https://www.facebook.com/groups/1673390782910601/ Looking forward to hearing from you - Administrator [Sue Hurt] My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: About Marty
Thanks for finding out about Marty. I'm really sorry to hear about all that he has had to endure. God bless him for keeping a positive attitude!Is there an address where he could receive greeting cards? From: 'LadyRx' via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, September 8, 2016 6:35 AM Subject: [CMLHope] Re: About Marty > On Sep 7, 2016, at 6:04 PM, LadyRx wrote: > > Because everyone has been worried about our suddenly absent friend, Marty, I > decided to look him up and call. Our dear friend is recovering from a fall in > which he broke his neck in three places and broke some bones in his shoulder. > Due to complications from surgery, he developed pneumonia and was in the > hospital. After recuperating from that and being in a rehab facility, he is > at home now. He seems to have a very positive attitude. What an amazingly > kind, warm, intelligent man he is! He sends warmest regards to all and looks > forward to reconnecting with everyone when he's able to do so. > 18's for our friend, Marty! -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Marty number
Has anyone called Marty? I am really curious to know how he is doingAngie in Canada From: 'Jeanie' via CMLHope To: Myvety2k via CMLHope Sent: Wednesday, September 7, 2016 10:02 AM Subject: [CMLHope] Marty number Here is Marty' s number. I can't hear good on phone so if someone could call great. 561_364/8998 Thanks My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] How is everyone
I'm great! Last week my doctor told me that if I am in treatment free remission for one more year, I will be considered CURED (!) of CML. I was on the original Gleevec study since 2001.These words were music to my ears~~~Angie in Canada From: 'Jeanie' via CMLHope To: 'Jeanie' via CMLHope Sent: Tuesday, August 2, 2016 1:13 PM Subject: [CMLHope] How is everyone Checking in. How is everyone I hope very good. I am worried about Marty. Has anyone heard from him? I have been sick again. Seems this flu just won't go away! Let me know how you are all doing. Blessings! My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Anyone out there. Testing
We're roasting in Canada! How hot is it? The chickens are laying hard boiled eggs. From: sherri swanson To: cmlhope@googlegroups.com Sent: Tuesday, July 12, 2016 8:06 PM Subject: Re: [CMLHope] Anyone out there. Testing Hi Jeanie, I'm out here in the heat & humidity trying to stay cool. 😋 Sherri On Tue, Jul 12, 2016 at 11:03 AM, 'Jeanie' via CMLHope wrote: My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to mailto:cmlhope%2bunsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] ...and to all the Canadians........
Happy Birthday to Canada149 years old today!Canadian, Please | gunnarolla & Julia Bentley | | | | | | | | | | | Canadian, Please | gunnarolla & Julia Bentley | | | | View on www.youtube.com | Preview by Yahoo | | | | | -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] About John Hopkins Cancer Update
One year ago I stopped Gleevec after 15 years.I felt a little nervouslike riding a bike without a helmet!!Will drunk champagne tonight to celebrate a year of treatment free remission. Feeling great and cruising in the Baltic! Life is Good.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Tuesday, June 14, 2016 1:32 PM Subject: Re: [CMLHope] About John Hopkins Cancer Update Like I just said, Jeanie your heart and mind are very powerful tools so please keep up to whatever you doing Try not to think about some of the negative things in your life but rather some of the positive things in your life. Hum, I see that you have been sporting among some other things at the end of your posts the numbers 18's It is telling you something, isn't it? Do not worry, anything that you may go through in your life you will be able to handle, just think about that. I already have when I got CML and had to go to my oncologist every week, and sometimes twice a week for blood tests. After the test was completed I was told to go back to the waiting room and would look at some of the people there and would break into a sweat just waiting there and would wonder what those other people were also feeling. Sometimes I had to wait for about a half an hour just sitting there and wait to hear the results and by the time I was called in to his office the back of my shirt was soaked with my sweat. I will never forgot that, and I am also sure that most of you if not all of you must also remember things like that. Well I was then confronted with the fact that this kind of behavior wasn't doing my any good because of all of the stress that I was going through, so I decided at that time no more anxiety that would put me in that position and I finally decided to look on the brighter side of my life, and I did. Now, I am just a mortal human being, nothing more and nothing less with feelings just as some of yours are as well, and I then decided that whatever would happen I would no longer look at most of those bad things anymore but just to go on, and so I did and still do. There were several exceptions that made me not as I would like to have been. When my father died followed by two years later then my mother then my sister eight years later who by the way was my bone marrow donor, then a few years later later my brother died then that put me in a depression that was just not me but I was also able to deal with it and after a period of grieving for each one of them. I was able to finally come back to myself, and that also made me into a much stronger person. These are some of my personal details that I usually don't discus with any other people but I felt in necessary to post it here because I want you to learn from me what went on with me at the time that I had CML. Also if you want, how many of you had this same thing happen to you concerning the waiting for the results of your blood tests? And I also know for sure that you Jeanie have some of the same feelings that I had because your worried about the outcome of your last blood tests. Please Jeanie and everyone else that may be reading this you just have to remember what I just wrote and learn that we all are the same and these feelings are just human reactions or emotions as a better word may describe, but when they continue to eat at you all that you need to do is to simply change your attitude as I once did. I prefer to live my life as best as I can, no matter what I go through because I never forget that there may be some bumps in the road but there also some very good times going along that road as well. How about you? 18's, Marty On Tue, Jun 14, 2016 at 11:29 AM, 'Jeanie' via CMLHope wrote: Hi Marty and so glad you are home and well. As you know I've been sick too but fighting it and pray it's not my leukies sneaking back in. Praying for you and all in need. Love you so very much ❤️😇 My Motto:Faith and PillsWith Love🐠18'sDx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/2015Doctor Balducci Moffitt Cancer Center On Jun 13, 2016, at 9:23 PM, Marty Gartenberg wrote: Hi Jeanie and everyone else. Just to let all of you know I had to go to the hospital for an infection on the lower part of my left leg, that I got I got last week. They had to admit me and I was started on Vankromycen IV for the last week and just got home today. Just another small bump in the road for me. I hope that everyone is doing well. 18's, Marty On Mon, Jun 13, 2016 at 6:07 PM, 'Jeanie' via CMLHope wrote: Our food today is full of junk. You would have to grow everything yourself and use no fertilizer or pesticides. You can't even buy gum or toothpaste without artificial sweetener. I was a health nut before I got cancer. Go figure. I think moderation is the key and variety. Try to get organic if possible. Blessings. My Motto:Faith and PillsWith Love🐠18
Re: [CMLHope] Cancer Update from Johns Hopkins
Cancer Update Email -- It's a Hoax! From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Thursday, June 9, 2016 9:28 PM Subject: [CMLHope] Cancer Update from Johns Hopkins | | Marty Gartenberg | | | | | | | | | Johns HopkinsUpdate AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY ('TRY', BEING THE KEY WORD) TO ELIMINATE CANCER,JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY . Cancer Update from Johns Hopkins : 1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size. 2. Cancer cells occur between 6 to more than 10 times in a person's lifetime. 3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors. 4. When a person has cancer it indicates the person has nutritional deficiencies. These could be due to genetic, but also to environmental, food and lifestyle factors. 5. To overcome the multiple nutritional deficiencies,changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system. Surgery can also cause cancer cells to spread to other sites. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply. *CANCER CELLS FEED ON: a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color. Better alternative is Bragg's aminos or sea salt. c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little other meat, like chicken. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer. d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C)..Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells. 1. No plastic containers in micro. 2. No water bottles in freezer. 3. No plastic wrap in microwave. Johns Hopkins has recently sent this out in its news letters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer.Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital , was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper The dioxin problem is one of the reasons. Please share this with your whole email list. Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked
Re: [CMLHope] To Susan Zimmerman
Hi, Marcie.I was sick last year for 5 months, in hospital 3 times...with anemia, low platelets, and finally broken ribs from passing out.I was having a bird this year about my hair loss. Unreal! It started growing in again after Christmas, after I had already bought a wig. I suspect that it was low iron and lots of unusual drugs that made me lose my hair. It's fine now. Lupus also can affect hair, but so far so good. When I gave my brother a kidney in 1979, in the months following the transplant, my hair was coming out at an alarming rate. I guess after all the drugs got out of my system it eventually all grew back.It was terrifying for me to be losing my hair.That which does not kill us only makes us stronger...Angie From: 'Marcie Goodman' via CMLHope To: cmlhope@googlegroups.com Sent: Saturday, March 26, 2016 1:26 PM Subject: Re: [CMLHope] To Susan Zimmerman Angie, what a time you have had! It must be a pleasure to be off the Gleevec. My platelets and counts were good. The red cells and everything related to them were off. Looks like I have perhaps developed severe iron deficient anemia. I'll be having more labs and tests to try and figure it out. I'm thrilled to be home and I'm from much better. Seven years of Gleevec destroyed my hair. So wigs for me and I love it. Never have a bad hair day and never have to spend a second on it! Stay well. So good to hear from you. Marcie Sent from my iPhone On Mar 24, 2016, at 8:37 PM, ANGELYN ESDERS wrote: Hi. Marcie.Did your platelets also bottom out with your red cells?A year ago April I lost almost every single platelet, and also needed 6 blood transfusions in a week. The specialists had blamed it on my lupus. I recovered and strangely lost a LOT of hairbut I have been very well since then. My hair is growing back.Have been in remission from CML since July 2001. I have been off Gleevec for 10 months now. So far so good.With a tag-team like leukemia and lupus, one never knows what to expect next.Anyway, Life is good. No complaints.Angie in Canada From: 'Marcie Goodman' via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, March 24, 2016 5:07 PM Subject: Re: [CMLHope] To Susan Zimmerman Susan, as always, I have you and Roy in my prayers. Please let us know how your test turns out. I just got out of hospital because my red cells bottomed out and I became very sick. So some transfusions and several days later, just came home. I will be undergoing more tests, might have gallbladder problem which arose after I was discharged, naturally! Ultrasound tomorrow. Never dull but always interesting! Marcie Sent from my iPhone On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope wrote: Thanks for the encouragement. I may write him but not confident he would have any different answers. Dr. Jessica Altman is completely on top of things for me. I"ve been to two other specialists at Nwestern to dig into causesnothing unusual except cavernous malformations turns up. Have checked everything at least three times over the yrs. So again off meds hopefully for a long time unless #'s go high. Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!Hope all is well with you!Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal Have a wonderful day -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group
Re: [CMLHope] To Susan Zimmerman
Hi. Marcie.Did your platelets also bottom out with your red cells?A year ago April I lost almost every single platelet, and also needed 6 blood transfusions in a week. The specialists had blamed it on my lupus. I recovered and strangely lost a LOT of hairbut I have been very well since then. My hair is growing back.Have been in remission from CML since July 2001. I have been off Gleevec for 10 months now. So far so good.With a tag-team like leukemia and lupus, one never knows what to expect next.Anyway, Life is good. No complaints.Angie in Canada From: 'Marcie Goodman' via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, March 24, 2016 5:07 PM Subject: Re: [CMLHope] To Susan Zimmerman Susan, as always, I have you and Roy in my prayers. Please let us know how your test turns out. I just got out of hospital because my red cells bottomed out and I became very sick. So some transfusions and several days later, just came home. I will be undergoing more tests, might have gallbladder problem which arose after I was discharged, naturally! Ultrasound tomorrow. Never dull but always interesting! Marcie Sent from my iPhone On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope wrote: Thanks for the encouragement. I may write him but not confident he would have any different answers. Dr. Jessica Altman is completely on top of things for me. I"ve been to two other specialists at Nwestern to dig into causesnothing unusual except cavernous malformations turns up. Have checked everything at least three times over the yrs. So again off meds hopefully for a long time unless #'s go high. Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!Hope all is well with you!Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal Have a wonderful day -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Gleevec to give away
To anyone who would like them, I have 77- 100mg Gleevec pills to give away. I don't use it anymore and they are now 6 mo. old. I don't know if they expire or not, but it would be a sorry shame to let them go to waste.Email me privately (esd...@rogers.com) and I will be happy to mail them to you. I am in Canada.Angie (dxd 2000) -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Does anyone remember Zavie and Ida Miller or Lottie?
I remember dear Zavie! We were going to Ottawa once and I asked him if he would join us for lunch. He was a guide at the art gallery in Ottawa and took us through. He was such a nice fellow. He was the first one I contacted when I went into remission. I am not sure, but I think I was #68 or 69 in the Zero list. Rest in Peace, Zavie...Angie From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Wednesday, March 2, 2016 3:46 PM Subject: [CMLHope] Does anyone remember Zavie and Ida Miller or Lottie? Well, I was looking through some of my things and ran across my Zavie Zero hat. He and Ida his wife actually came to my home in Florida and they presented me with the very first hat #1 I surely do miss my friends Zavie, Ida and as I would call her, Mommy Lottie and her husband Jimmy. Probably some of the new commers may not remember them but they were the backbones of the CML sites. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: Hey, what happened to everyone?
Thanks, Marty. I am monitored by various doctors. No one ever mentioned Purines to me. No, no gout, thank goodness.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Tuesday, March 1, 2016 8:49 PM Subject: Re: [CMLHope] Re: Hey, what happened to everyone? Hi Angie, Just dropping by to say hello and try to answer your questions. Gleevec can cause kidney failure but you also must remember so can a lot of things. In my case it was all of the Chemotherapy as well as the total body Radiation, and it took more then 20 years to say kaput to my kidneys. It starts off very slowly and in my case about 20 years, but everyone is different. Some tips: Keep yourself hydrated. I usually drink Cranberry juice but if your diabetic then try drinking it in moderation. Keep your blood glucose always in check. especially if you are diabetic. Try to stay away from what is called purines. Things like mushrooms, wine, beer, red meat, green leafy vegetables etc. You should look it up on the web to see. However you can still eat or drink them in moderation but defiantly no beer or mushrooms because they are very high in Purines. I know that your feet swell up every once in a while but if you ever got the gout then you really have to watch what you eat or drink, and you don't necessarily have to have burning unless you have a urinary infection. Actually I no longer have this problem. I don't know if you are aware that I had a kidney transplant one year and a few days ago. Since you say that you have kidney disease, you should always monitor your Creatnine levels. The normal levels should be from around one give or take a little. Now that is in a healthy person who has two good functioning kidneys. My latest level was 0.8 and that is only for one kidney. I am now 71 years old and was blessed with a 20 year old young man's kidney (just one is all that is required) Now I would like to teach you and everyone else something about organ and blood types. I was born with type 0+ blood. My bone marrow donor was B+ in a solid organ donation (heart, lung, liver etc. the blood type must match between the donor and the recipient, however in a bone marrow transplant is doesn't necessarily have to but the recipient may die through this procedure. For instance I was given 92 blood transfusions as well as many platelets infusions and many human blood products. And in my case it did work but I almost died in the process. But Angie almost doesn't count because I am still here and by the way so are you. Now I did mention that I had a kidney transplant just over one year ago, and guess what the donor was in fact B+ So what does this exactly mean? Well if My donor was not B+ then I would have waited, who knows? I am now called a Chimera meaning that in my life time I had two different blood types, and now only one. So the cause was indeed found and "Cured" but I have to now deal with a lot of other things, and I think that you already know me and I just don't give up. 18's Marty On Tue, Mar 1, 2016 at 7:05 PM, ANGELYN ESDERS wrote: I also have kidney disease. I have been on Gleevec since Jan. 2001 (300mg daily). I have occasionally had swollen legs, but no one ever indicated that it might be from Gleevec. I have never had the burning either. SO SORRY you are having this problem. I hope they find the cause soon.Wishing good things your way.Angie From: sherri swanson To: cmlhope@googlegroups.com Sent: Tuesday, March 1, 2016 9:18 AM Subject: Re: [CMLHope] Re: Hey, what happened to everyone? Hi Everyone. Sorry to have been so quite but I've been dealing with a lot of crazy health issues. I've been on Gleevec for 13 years and have had every side effect it can throw at me and have dealt with it. At the beginning of 2015 I began having some edema in my legs and I told my GP about and he said it was my Gleevec. I said okay I talk to my oncologist. I had had swelling before with the Gleevec but never in my legs and never like this. SO off to the oncologist and he said I should talk to my kidney doctor as I have Stage 3 kidney disease. Off to the kidney doctor I went and he said it was the Gleevec. I said I didn't think it was and told him about all the side effects I had in the past. Well, that was the end of all the conversations. I would see the doctors and every time they would tell me how swollen my legs and feet were but each would point to the other and then to the Gleevec. Finally in December 2015, I could no longer stand the pain and my calves were now 24 inches around so I called my GP and got in to see him right away. I was sent to a cardiologist and he told me the swelling was not caused by medications. After a bunch of very expensive tests, he told me it was the Gleevec and I had to stop it right away. I looked at him like he was nuts and called my oncologist and told him was sa
Re: [CMLHope] Re: Hey, what happened to everyone?
I also have kidney disease. I have been on Gleevec since Jan. 2001 (300mg daily). I have occasionally had swollen legs, but no one ever indicated that it might be from Gleevec. I have never had the burning either. SO SORRY you are having this problem. I hope they find the cause soon.Wishing good things your way.Angie From: sherri swanson To: cmlhope@googlegroups.com Sent: Tuesday, March 1, 2016 9:18 AM Subject: Re: [CMLHope] Re: Hey, what happened to everyone? Hi Everyone. Sorry to have been so quite but I've been dealing with a lot of crazy health issues. I've been on Gleevec for 13 years and have had every side effect it can throw at me and have dealt with it. At the beginning of 2015 I began having some edema in my legs and I told my GP about and he said it was my Gleevec. I said okay I talk to my oncologist. I had had swelling before with the Gleevec but never in my legs and never like this. SO off to the oncologist and he said I should talk to my kidney doctor as I have Stage 3 kidney disease. Off to the kidney doctor I went and he said it was the Gleevec. I said I didn't think it was and told him about all the side effects I had in the past. Well, that was the end of all the conversations. I would see the doctors and every time they would tell me how swollen my legs and feet were but each would point to the other and then to the Gleevec. Finally in December 2015, I could no longer stand the pain and my calves were now 24 inches around so I called my GP and got in to see him right away. I was sent to a cardiologist and he told me the swelling was not caused by medications. After a bunch of very expensive tests, he told me it was the Gleevec and I had to stop it right away. I looked at him like he was nuts and called my oncologist and told him was said. We agreed that I would stop the Gleevec for 2 weeks and if the swelling did not improve I would go back on it. After 2 weeks the swelling did not improve I actually got worse and the oncologist would not put me back on the Gleevec as he believed that it was now the the medication masking something that was causing the issue. He sent me to Northwestern to see Dr. Altman. After meeting with her and having a tremendous amount of blood drawn and making appointments with other specialists at Northwestern including a cardiac oncologist, I feel that I am on the road to getting this problem with my legs resolved. I am waiting to hear from Dr. Altman to find out what my BCR-ABL was as well as my WBC, as my white count was climbing since I've been off the Gleevec. I've seen so many doctors, I feel like I've met every doctor in the state of Illinois. That is way to many. I'm hopeful that I'll be able to start my Gleevec today. As for the pain and swelling in my legs, I'll just live with it until we find out what the heck it is and how to treat it. As of today, I have been off Gleevec for 2 months and the pain and swelling has not changed. The pain in my legs is like an electric shock and they feel like they are on fire. And I do mean fire. Like someone has poured gasoline on them and lit a match and tossed it on my legs. It's awful. That I know of Gleevec does not have those side effects, and Dr. Altman did think so either. Has anyone here that has taken Gleevec had any side effects like that? I hope everyone has a good week and stays well. Strength doesn't come from what you can do. It comes from overcoming the things you thought couldn't. L'chaim, Sherri On Tue, Mar 1, 2016 at 7:16 AM, Norm wrote: I am still alive and kicking but one of my kickers is giving me fits. I think it is plantar fasciitis. I haven't posted in awhile and miss Millie may she rest in peace. Jeanie is my cruise mentor and my wife and I along with a few other friends just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, and Cozumel. We were busy with one of my cousin staying here quite often while he was being treated for stage 4 Melanoma, he passed and is walking with Jesus now. Way too young and such a very good person. My beloved dachshund, Hans, turned 12 yesterday. About a month ago we were given the devastating news that he has lymphoma. I never knew it would be so difficult to have to deal with the knowledge that one day, much sooner than expected, I would have to ease his way to a comfortable ending. I dread this as he was my buddy and comfort while I was recovering from my relapse of CML. He is being spoiled even more than ever now and will be until that time comes. Millie would understand. April 1st will mark 13 years since my diagnosis and the start of Gleevec. As some know, I relapsed and Gleevec no longer worked. I was fortunate enough to get in the clinical trial for AMN107 during the phase 1 study. As you can tell, it worked but not before I entered blast and was one very sick puppy. I believe that one night the angel of death came for me and for some reason le
Re: [CMLHope] Hey, what happened to everyone?
I'm alive and kicking...8 months off Gleevec and feeling fine so far. According to the dr. I have a 50/50 chance of either having the CML recur, or never hearing from it again. I prefer to be optimistic.Angie in Canada diag. 2000. From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Monday, February 29, 2016 10:00 AM Subject: [CMLHope] Hey, what happened to everyone? Why the silence? I miss everyone. 18's, Marty-- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: stroke
HUGS! From: 'Susan Zimmerman' via CMLHope To: cmlhope@googlegroups.com Sent: Saturday, January 2, 2016 7:24 PM Subject: Re: [CMLHope] Re: stroke Dear Angie, Hooray for 6 mos free of gleevec! I'm so hopeful I can stay off bosulif until I turn 65 next September without my numbers going crazy. I know you are thrilled to get your body back, lol! Thanks and you are right, what a way to end 2015! So glad I got out of hospital on the 31st, which made insurance so much easier for the change in years. All you blood buddies out there, best wishes to you all and I lift you in my prayers whenever I hear about problems. Anybody heard from Marty lately?It's been ages. 18's,Susan Z-- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Fwd: Fw: Fwd: Fw: THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY.......
HILARIOUS!! From: Myvety2k via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, December 31, 2015 3:17 PM Subject: [CMLHope] Fwd: Fw: Fwd: Fw: THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY... O. K. this is the last one I can't help myself from putting a smile on all of your faces. greenie#yiv8847378831 -- .yiv8847378831hmmessage P{margin:0px;padding:0px;}#yiv8847378831 body.yiv8847378831hmmessage{font-size:12pt;font-family:Calibri;}#yiv8847378831 | | | THE MORNING AFTER THE ZOO'S NEW YEAR PARTY. | | | > > > > > > > > > > > > | | | Good Party! | | | | | | | #yiv8847378831 -- .yiv8847378831hmmessage P{margin:0px;padding:0px;}#yiv8847378831 body.yiv8847378831hmmessage{font-size:12pt;font-family:Calibri;}#yiv8847378831 | | | THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY | | | > > > > > > > > > > > > | | | Good Party! | | | | | | | #yiv8847378831 --.yiv8847378831hmmessage P{margin:0px;padding:0px;}#yiv8847378831 body.yiv8847378831hmmessage{font-size:12pt;font-family:Calibri;}#yiv8847378831 | | | THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY | | | > > > > > > > > > > > > | | | Good Party! | | | | | | | -Original Message- Date: Wed, 30 Dec 2015 16:06:43 -0500 From: "William Toth" Subject: Fw: THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY... To: | | | THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY | | | > > > > > > > > > > > > | | | Good Party! | | | | | | | -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: stroke
Best wishes, Susan. What a way to end the year!Wishing you all the best of health in 2016...May love increase, and troubles cease! I am so far off Gleevec for 6 months and no sign of trouble.Knock on woodAngie From: 'Susan Zimmerman' via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, December 31, 2015 12:49 AM Subject: Re: [CMLHope] Re: stroke Dear all,Just a note to say I'm in my local hospital. It did turn out to be a small stroke which started last Sat. In morning I will learn if 2nd cat svan showed the bleeding stopped. Prayers are appreciated. I am agitated w myself for agreeing to up the bosulif when my numbers increased just a little. If I had followed the doc's suggestion of an even higher dose I would be dead now. After 10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for several months...dont need another one! God is in charge...Jeannie, without pills this time lol. You all mean so much to me. I'm feeling fine now. God bless and stay safe on new year's eve! Thanks for yr. prayers.18's and love, Sz Sent from my Sprint phone -- Original message--From: Myvety2k via CMLHope Date: Wed, Dec 30, 2015 3:34 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Fwd: Fw: Fwd: Bet You Did Not Know this
Thanks! Interesting...I did NOT ever hear of this before. From: Myvety2k via CMLHope To: cmlhope@googlegroups.com Sent: Monday, December 7, 2015 7:53 AM Subject: [CMLHope] Fwd: Fw: Fwd: Bet You Did Not Know this Hi my CML friends and care givers. A friend of mine sent me this email so I'm passing it on to all of you. greenie Subject: Fwd: Bet You Did Not Know this You Did Not Know this BET YOU DIDN'T KNOW THIS. I SURE DIDN’T. Comleted in 2009 for $2 million, it sits on 5 acres of hillside, 20 miles from the center of Jerusalem. The memorial is a 30-foot, bronze American flag. That forms the shape of a flame to commemoratethe flames of the Twin Towers. The base of the monument is made of melted steel from the wreckage of the World Trade Center. And includes this engraving in Hebrew and English. This metal remnant was taken from the remains of the Twin Towers, that imploded on September 11th disaster. It was sent over to Israel by the City of New York to beincorporated in this memorial. This metal piece, like the entire monument, is a manifestation of the special relationship between New York and Jerusalem.â Surrounding the monument are plaque with the names of the victims of 9/11. It is the only memorial outside the U.S. that includesthe names of all who perished in the terrorist attacks. Including 5 Israeli citizens. The site solemnly overlooks Jerusalemâs largest cemetery, Har HaMenuchot. The monument is often used for memorial and commemoration services. A powerful memorial from a powerful ally. = -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Three months
That's a cheering thought, Susan! I have 4 other chronic conditions that can take me down...Thank GOD Life is good and I don't have time to worry about it! Have a great weekend! Angie From: 'Susan Zimmerman' via CMLHope To: cmlhope@googlegroups.com Sent: Thursday, October 1, 2015 8:42 PM Subject: Re: [CMLHope] Three months Angie, So very very happy for you! This will show you that even if you begin climbing again, (and we don't believe that), you will never get bad with CML and you will happily go to the great beyond because of something else!!! 18's and blessings, Susan Zimmerman -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Sep 29, 2015 10:38 pm Subject: Re: [CMLHope] Three months Angie, So I see that your finally good to go \uD83D\uDC4C That's great! 18's, Marty On Tue, Sep 29, 2015 at 8:18 PM, ANGELYN ESDERS wrote: After 14+ years, I have been off Gleevec for 3 months. So far, so good... All blood counts are A-OK.I am starting to feel a little braver about it now...Angie in Canada-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Three months
So happy to hear of your son's success. I was on 4 per day only for the first 2-3 years, and afterwards was on 3 per day.I wish him a college life of success and good health!Æ From: Parichart N. To: Mitri Nademahakul ; cmlhope@googlegroups.com Sent: Tuesday, September 29, 2015 8:39 PM Subject: Re: [CMLHope] Three months Congratulations!!! So excited to learn about this. My son was on Gleevec since he was 9, now he's 18 - starting his new life in College, blood count are good and all clear since he was 10 until now. Our doctor never recommended to decrease the dose (4/day) or off. Hope to see lots and lots more people be able to live life free of it. All the best to you, Angie. Pari On Wed, Sep 30, 2558 at 7:21 AM ANGELYN ESDERS wrote: After 14+ years, I have been off Gleevec for 3 months. So far, so good... All blood counts are A-OK.I am starting to feel a little braver about it now...Angie in Canada-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Three months
Thanks, Marcie!Sorry to disappoint, but I have felt no changes at ALL! After the first few months, Gleevec had no negative impact on me. I just feel fine, lots of energy, no muscle cramping.Long may this continue Æ From: 'Marcie Goodman' via CMLHope To: "cmlhope@googlegroups.com" Sent: Tuesday, September 29, 2015 8:55 PM Subject: Re: [CMLHope] Three months Angie, wow, this is great news! I imagine you feel very different. Can you share some of the changes being off Gleevec? Keep up the good work! Marcie Sent from my iPhone On Sep 29, 2015, at 8:18 PM, ANGELYN ESDERS wrote: After 14+ years, I have been off Gleevec for 3 months. So far, so good... All blood counts are A-OK.I am starting to feel a little braver about it now...Angie in Canada-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Three months
After 14+ years, I have been off Gleevec for 3 months. So far, so good... All blood counts are A-OK.I am starting to feel a little braver about it now...Angie in Canada -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] happy Holidays!!
Heartfelt condolences, Jim. Very sorry for your loss.Angie From: Nadia Noles To: cmlhope@googlegroups.com Sent: Friday, September 18, 2015 2:53 PM Subject: RE: [CMLHope] happy Holidays!! This is from Mr. Noles, the husband of Nadia Noles, a member ofCMLHope. Nadia passed away yesterday, at 2:45 PM. Seven days ago she wasworking in her garden, and today she is gone. She had CML for seven years, and Gleevec was the wonderdrug that kept her alive. All the other drugs, such as Sprycel, caused her terrible side-effects, butshe tolerated Gleevec. However, seven days ago she became weak and disoriented, and I took her to her PC physician,and she immediately admitted her; but within the hour, after checking her white cells, which stoodat 116,000, she was that evening transported to The Cancer Care Unit in Moffitt Cancer Center. She was thendiagnosed by her oncologist with now having Acute Myeloid Leukemia, and we were both told she was terminalwith only a few weeks to live. We both wanted her to die at home, but it was suggested that she firststabilize in Hospice for two days. However, when she arrived at Hospice she was already in a semi-coma state,and then died the following afternoon. Her passing was relatively painless. Thank you all for the support you gave her in the past years. Ican tell you that she often talked about how much your support meant to her. Now life is for the living… sokeep the faith while you go through your own struggles. Jim Noles -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. Whatever will be, will be, and everything is a learning experience. It just feels strange after 14+ years. In other news, Monday a new platelet dr. decided to do a BMB. You won't believe this: It took him FOUR tries to get a viable sample. Never had this happen before. Four crunching entries. Sort of like having four BMB's at the same time. Afterwards I was almost in a state of shock and could not stand, nauseous, very stressed. (In Canada we do not get sedation or morphine for this procedure.) It took me 90 minutes to de-stress and had to drive myself home because he had not warned me that he intended to do this and to bring a driver along. There's one doctor who will NOT be doing another BMB on me!! I think he needs a few more lessons in how to do it. Anyway, I am finestill low platelets. Life goes on.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Wednesday, June 17, 2015 7:29 AM Subject: Re: [CMLHope] Stopping Gleevec Hi Angie, You are not thee only one that has stopped your TKI and felt that way. sometimes something that we take as far as any TKI's ends up being a crutch for us and we always seem to worry if this or that will come back to haunt us. It is a normal human response and we worry about it. Angie, since your really feeling better without the Gleevec then you should learn to live your life in the best way that you can. I have seen this many times before. A man that both Zavie and I knew was on Alpha Interferon and suffered immensely from it's horrible side effects. He suffered for many years and when he was finally PCRU everyone told him to stop using it anymore but he still continued still suffering because it had become a crutch for him. He had the same feelings as you now have and after a lot of coaching from everyone he finally stopped it. He has been off of it for many years and no reoccurrence of CML ever came back to him. His system finally "burned out" his CML. Remember that everything in life has a double edged soared. If you do something will it come back to haunt you or if you don't do something will it come back to haunt you?? I just can't live my life that way, and if something does come back then I will deal with it.Remember me telling everyone that Leukemia is both a disease of not only the body but it also poisons the mind. Angie, why not start writing a diary and put everything in there that you have gone through the day? I do it and it lets me reflect about what I could have done better or worse during the day. I call it my frustrations and how to deal with them, and it really works for me as I am sure it will also work for you or anyone else. By the way I see that Giora sent you his response. read it if you haven't as yet. Here is something called "expect the best" Please read it and it will also help you with yourself. One last thing. I am not a doctor but have gone through a lot of things in my life health wise as you already know. Have you ever wondered why I am still alive? I did at one time but maybe it is because I try helping others as a promise that I once made to GOD and also received help myself from others. It is a two way street, or I am the luckiest son of a bitch on this planet ???18's, Marty EXPECT THE BEST, MINDOVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS ATANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSETHEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THEBEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVE TO LEARNTO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT ANDNOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY.WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVESINTO THE AREA OF POSSIBILITY.EVERY GREAT THINGEVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFULUNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...FOCUS... 18's,Marty On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS wrote: I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day.I was in the study for 12 years.I feel like it is my safety net between wellness and reoccurrence of CML.I am almost afraid to stop it. I no longer have any side effects from it.Who has stopped Gleevec, and what have you experienced as a result of doing so?Thanking you all for your input...Angie in Canada-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to th
Re: [CMLHope] Stopping Gleevec
Thank you for your kind letter, Giora. I remember you from years back. You live in Tel Aviv? I am so happy to hear that you are doing so well. I feel encouraged.Angie From: Giora Sharf To: cmlhope@googlegroups.com Sent: Wednesday, June 17, 2015 2:35 AM Subject: RE: [CMLHope] Stopping Gleevec #yiv1061552755 #yiv1061552755 -- _filtered #yiv1061552755 {panose-1:2 4 5 3 5 4 6 3 2 4;} _filtered #yiv1061552755 {font-family:Calibri;panose-1:2 15 5 2 2 2 4 3 2 4;} _filtered #yiv1061552755 {font-family:Tahoma;panose-1:2 11 6 4 3 5 4 4 2 4;} _filtered #yiv1061552755 {font-family:Garamond;panose-1:2 2 4 4 3 3 1 1 8 3;}#yiv1061552755 #yiv1061552755 p.yiv1061552755MsoNormal, #yiv1061552755 li.yiv1061552755MsoNormal, #yiv1061552755 div.yiv1061552755MsoNormal {margin:0cm;margin-bottom:.0001pt;font-size:12.0pt;}#yiv1061552755 a:link, #yiv1061552755 span.yiv1061552755MsoHyperlink {color:blue;text-decoration:underline;}#yiv1061552755 a:visited, #yiv1061552755 span.yiv1061552755MsoHyperlinkFollowed {color:purple;text-decoration:underline;}#yiv1061552755 p {margin-right:0cm;margin-left:0cm;font-size:12.0pt;}#yiv1061552755 span.yiv1061552755EmailStyle18 {color:#1F497D;}#yiv1061552755 .yiv1061552755MsoChpDefault {font-size:10.0pt;} _filtered #yiv1061552755 {margin:72.0pt 90.0pt 72.0pt 90.0pt;}#yiv1061552755 div.yiv1061552755WordSection1 {}#yiv1061552755 Hi AngieWe have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response.I fully understand your concern, I had the same issues and didn’t agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didn’t have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS)Good luck whatever you decideGiora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day.I was in the study for 12 years.I feel like it is my safety net between wellness and reoccurrence of CML.I am almost afraid to stop it. I no longer have any side effects from it.Who has stopped Gleevec, and what have you experienced as a result of doing so?Thanking you all for your input...Angie in Canada-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email
[CMLHope] Stopping Gleevec
I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day.I was in the study for 12 years.I feel like it is my safety net between wellness and reoccurrence of CML.I am almost afraid to stop it. I no longer have any side effects from it.Who has stopped Gleevec, and what have you experienced as a result of doing so?Thanking you all for your input...Angie in Canada -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Platelets
THIRTY-SEVEN years? Awesome! Congratulations, Skip. From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Sunday, June 14, 2015 11:07 AM Subject: Re: [CMLHope] Platelets Hi Skip, With all that you have been through and still going through you are the longest surviving CML patient that I know of. 37 years and counting, but who is counting, you just keep on going on. This is for you to continue on 18's dear Skip. Marty On Sun, Jun 14, 2015 at 9:05 AM, 'Skip Duffie' via CMLHope wrote: | I have had very low platelets and ANC and RBC and plus some others plus high Ferritin counts over 7000 most weeks I have critical platelets and white counts of 1.2 or up to 2.01 neut 0.20 yet with no meds I have 0.8 log reduction. I fell fine been doing this for 37 years I tell you this as I want all to know Low counts should looked but not to spoil your day Zevie was astounded when I send him on of my blood reports with 1.0 white 88 RBC 0zero platelets ANC of 0.20hooe this helpsSkip Dx 1977 Sent from Yahoo Mail on Android | From:"'Icandoallttc' via CMLHope" Date:Tue, May 19, 2015 at 9:01 AM Subject:Re: [CMLHope] Platelets I also have problems with platelets and WBC. They go way too high. Only on Tasigna did they drop too Lowe. Go figure. We are all unique in how we respond to the tkis. Moffitt tomorrow. I am hoping for good results. 5 months on ponatinib. Prayers & Blessings Jeanie 18,sDx 1/2004Started Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015 On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan wrote: I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. | | -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A s
Re: [CMLHope] Cml and Shingles vaccine
My doctor did not recommend the vaccination to me. I woke up one morning last year with blisters on my shoulder. Recognizing what it was, I was at the hospital within half an hour and received immediate medication. The patch of shingles stayed at about 2" by 3", and healed quickly. The real problems start when people think it is a rash that will go away and leave it untreated for a week or two. Recognize it and get help immediately.Angie in Canada From: Poongothai R To: "cmlhope@googlegroups.com" Sent: Friday, June 12, 2015 1:59 AM Subject: [CMLHope] Cml and Shingles vaccine Hi friends! Just want to know we cml warriors can take Shingles vaccine? Kothai -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Where is everyone?
Marty, thank you so very much! I will use this help that you have given me. I appreciate it hugely! Hugely.Most sincerely,Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Friday, June 5, 2015 8:47 PM Subject: Re: [CMLHope] Where is everyone? Brian J. Druker, MD Director, OHSU Knight Cancer InstituteJELD-WEN Chair of Leukemia ResearchInvestigator, Howard Hughes Medical InstituteAdmin Unit: The Knight Cancer InstituteEmail: drukerb@ohsu.eduPhone: 503-494-5596Lab Phone: 503-494-5599Fax: 503-494-3688Office: Biomedical Research Building 513Mail Code: L592 Dr. Moshie TalpazA - Univers Of Mich Comp Canc Ctr - 1500 E Medical Center Dr - Ann Arbor, MI 48109 - (734) 647-8901 (Office) - (734) 232-1328 (Fax) 18's Marty On Fri, Jun 5, 2015 at 5:54 PM, ANGELYN ESDERS wrote: Have you any idea how I could contact either of them? I think it could be well worth while.Thank you for the suggestion, Marty.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Friday, June 5, 2015 4:57 PM Subject: Re: [CMLHope] Where is everyone? Hi Angie, I have a suggestion for you. Why not speak to one of the CML gurus like Dr. Brian Druker or Moshie Talpaz. They are both very fine CML doctors I hope it helps you out 18's, Marty On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS wrote: I'm still sitting here anemic and with no platelets. They don't know WHAT to do with me. :(Angie in Canada - -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Where is everyone?
Have you any idea how I could contact either of them? I think it could be well worth while.Thank you for the suggestion, Marty.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Friday, June 5, 2015 4:57 PM Subject: Re: [CMLHope] Where is everyone? Hi Angie, I have a suggestion for you. Why not speak to one of the CML gurus like Dr. Brian Druker or Moshie Talpaz. They are both very fine CML doctors I hope it helps you out 18's, Marty On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS wrote: I'm still sitting here anemic and with no platelets. They don't know WHAT to do with me. :(Angie in Canada From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Friday, June 5, 2015 7:35 AM Subject: [CMLHope] Where is everyone? Is everyone alright? I haven't a post from anyone in a long time. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Where is everyone?
I'm still sitting here anemic and with no platelets. They don't know WHAT to do with me. :(Angie in Canada From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Friday, June 5, 2015 7:35 AM Subject: [CMLHope] Where is everyone? Is everyone alright? I haven't a post from anyone in a long time. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Picture of Marty and Shelly
Lovely to "meet" you bothAngie From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Monday, May 25, 2015 5:50 PM Subject: [CMLHope] Picture of Marty and Shelly Well, I have been posting here for a long time and no one knows what I or Shelly look like. I must admit that this picture was taken several years ago before my kidneys failed. We were on a cruise and since then I have shed some weight. My beautiful wife Shelly is the love of my life. Once I'm feeling better and through with all that I am now going through Shelly and I are going to take a nice cruise just like we used to do. 18's, Marty-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Today's
I am so sorry that your dog was attacked and brutalized! We love our dog like a 3rd child and hate so much to see them in pain. I am so sorry this happened to you. Hoping she will recover soon~~Angie From: bkbarney via CMLHope To: cmlhope@googlegroups.com Sent: Sunday, May 24, 2015 9:00 PM Subject: Re: [CMLHope] Today's Happy Birthday to Marty and your sweet wife.You do kick a...and you are our hero..inspiration and all around nice guy. :) Great news from Richard too!! I will do BCR abl in a couple weeks and let the group know how I am.. Rough week...Monday I was walking my dog and she got attacked by a very large dog.., picked up three feet in the air and shaken...so we have been in the dog ICU since Monday...tried to take her home, 12 hour later back in the ICU, complications, abyses, etc..drains, surgery to remove dead tissuebut she is amazing...when I brought her home..today...( tomorrow she goes in for a new drain because the old one did not work properly..) she looked at the stairs and one at a time...very slowly...she went up to her favorite place to lay down...it's like Marty doing push ups on the commode, ..and by the way 3500 .I don't know anyone who can do that number at any age Marty..so you are amazing... anyway...we are taking it one day at at time..but making progress towards healing...each and everyone of us. Love and 18's to all, Beth -Original Message- From: Richard H To: cmlhope Sent: Thu, May 21, 2015 11:01 pm Subject: Re: [CMLHope] Today's Yeah, Marty! Another challenge another kick AZZ success. Happy Birthday to you (2x) and your wife. I know you are soaking up that beautiful View from you picture window and that is charging your energy level beyond belief. Richard H. On Thursday, May 21, 2015 at 5:59:59 AM UTC-5, wa2yyx wrote: Hi Susan and everyone else. Well another hospital stay but I just got home yesterday. This time it was phenomena so I was started on an iv antibiotic which I will have with me for about two more weeks. Anyway it was my goal to celebrate my wife's birthday which was on May 20th and mine is actually today and also my second birthday of my bone marrow transplant back in May 21st 1989. So I just put my golden attitude hat on (Zavie Millers zero club number one is what he personally assigned to me in my home a very long time ago. So what happened? I got my AZZ right out of bed with my IV pole and got out of my room and started walking. I walked three times a day up and down the hallways of my ward. Once I got back to my room I rested then grabbed onto the sinks counter top and did some modified push up's. I kept on using that plastic breathing machine to suck air into my lungs so that I was able to cough up whatever was in my lungs I was finally able to make the float reach 3,500 and do it for ten consecutive times in a row. One of my doctors was standing right there and he said that he couldn't even do that himself. Well I did all of this for a week and I was finally discharged but with a picc line and a portable antibiotic pump that I am able to carry around with me. I have a home care nurse that changes the IV bag every other day or so. Today is some of my doctor appointments as well as my blood work. Man am I happy about that picc line no more needle holes all over my black and blue arms Listen folks please don't consider me to be a super hero but someone that has a kick AZZ healing attitude, and as long as I am alive it will always be with me. I told all of you this story so that you will realize that you can help yourself by having this kind of attitude. This is what I did when I used to live in that small plastic bubble (luminous Air Flow Chamber, and I will never forgot how it helped me. Not the chamber but my attitude. I beg each one of you to try and do what I did because it works for me and with a little effort it can for you. Just start very slowly and let your mind control your body. Remember what I once told you, Leukemia is a disease of not only the body but the mind as we.. 8's, Marty On Wed, May 20, 2015 at 4:28 PM, rszim0702 via CMLHope wrote: Guess you and I are kind of on the same track.both were off everything for quite some time, now my number is .01%, near 0and you are, too! Every day is a gift. We will be on vacay next week in Virginia, but I will catch up to your results sometime after Tuesday! Going to the Shenandoah Mountains for some R & R for my stressed-out husband. Best wishes! 18's, Susan F. Zimmerman -Original Message- From: Richard H < rbhuf...@gmail.com> To: cmlhope < cml...@googlegroups.com> Sent: Tue, May 19, 2015 11:59 pm Subject: Re: [CMLHope] Today's CBC Thanks! But after a 15-17 log reduction three months ago I only had a 1.795% left to go to zero.. I am expecting the best. I had a phone call from ONC's nu
Re: [CMLHope] Platelets
I have stayed in Chennaiwith its beautiful long beach. The water of the Indian Ocean was as warm as bath water! Wonderful memories~~Here in Canada, of course, we have no papaya trees, so I must order the purest product I can find from elsewhere.Angie From: 'Icandoallttc' via CMLHope To: "cmlhope@googlegroups.com" Sent: Sunday, May 24, 2015 12:29 PM Subject: Re: [CMLHope] Platelets Yes my onc stopped my meds which were Tasigna at the time and also insisted on blood transfusion. Good luck. Prayers & Blessings Jeanie 🐟🐟18,sDx 1/2004Started Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015 On May 24, 2015, at 9:24 AM, Gopalsamy Ragavan wrote: Please take care. Because low platelet counts need more self care. My counts also went low. But my oncologist stops the medicine once it reaches low and then allows to recover to restart the medicine. I didnt know organic papaya leaf tea is available readily made. I collect Papaya leaves from friends and make the powder at home. I live in Chennai, which is a metro city in south of India. Hope your platelet counts improve soon. regards, Ragavan On Sun, May 24, 2015 at 7:37 AM, ANGELYN ESDERS wrote: Thank you very much, Ragavan, for your suggestion.I immediately ordered some organic papaya leaf tea and I am awaiting its arrival.I can't wait to try it as my platelets are still so very low in number. Minimum level is 150-450.I have 9. I have red spots all over me and big, purple "bruises" from anywhere I am touched.I have traveled in India 3 times. In which part of India do you live?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Tuesday, May 19, 2015 8:15 AM Subject: Re: [CMLHope] Platelets I am in India. I have given the method below. You can prepare it very easily. Or you can drink two spoons of papaya leaf extract in the morning. Procedure: Dry papaya leaves completely. Add cumin seeds and little black pepper and powder the dried papaya leaves. Keep it safe in a container. Add water to spoon full of papaya leaf powder and boil it. Filter it and drink warm. regards, Ragavan On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: Thank you very much for your reply.I will try to find papaya leaf tea.I am in Canada...where are you?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Sunday, May 17, 2015 7:08 AM Subject: Re: [CMLHope] Platelets I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, s
Re: [CMLHope] Platelets
Dear ZavieI really don't remember my number on his list...maybe about #68. It was in July 2001. We met him in Ottawa and he guided us through the National Art Galler, and we had lunch together. .Thanks for all the information.Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Sunday, May 24, 2015 8:58 AM Subject: Re: [CMLHope] Platelets Hi Again Angie, Now it makes sense, so you are also "blessed" (yea right) with Lupus. Yes that makes things more interesting. However you are also fighting your way through it and I take my Zavies zero number one hat off to you. I hope that you know what I'm talking about. Anyway I don't necessarily recommend papaya tea extract but you already ordered it so you can start off with that, but I just sent you a site from Puritans Pride with a lot of information. Please read it. 18's, Marty Thanks, Marty. I have ordered organic papaya leaf tea and will mix it as Ragavan suggests. My excitement for this week was a "silent" heart attack. I missed it. Felt nothing at all. Felt great all week. A blood test revealed a high level of Troponins in my blood and they got all excited and kept me in hospital for 3 days doing various tests. I will learn the results this week. I see a platelet specialist tomorrow. Maybe he will have more words of wisdom. I am really happy to hear that you recommend papaya tea also and that it works. I had 9 platelets on Friday (normal level 150-450) and my hemoglobinhad dropped into the low 80's. This seems to be an ongoing battle as my lupus tries to kill my body one cell at a time.Wishing all the best to you! 18's~ Angie On Sun, May 24, 2015 at 8:43 AM, ANGELYN ESDERS wrote: Thanks, Marty. I have ordered organic papaya leaf tea and will mix it as Ragavan suggests. My excitement for this week was a "silent" heart attack. I missed it. Felt nothing at all. Felt great all week. A blood test revealed a high level of Troponins in my blood and they got all excited and kept me in hospital for 3 days doing various tests. I will learn the results this week. I see a platelet specialist tomorrow. Maybe he will have more words of wisdom. I am really happy to hear that you recommend papaya tea also and that it works. I had 9 platelets on Friday (normal level 150-450) and my hemoglobinhad dropped into the low 80's. This seems to be an ongoing battle as my lupus tries to kill my body one cell at a time.Wishing all the best to you! 18's~ Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Sunday, May 24, 2015 8:24 AM Subject: Re: [CMLHope] Platelets Hi Angie, Please read this about the effects to not only your platelet counts but also your red cell count. Ragavan gave you some valuable advice but you need to find the best supplement that contains the best form of Papya leaf extract. By the way when I had my bone marrow transplant one of my friends got me some of it and it did work. Let me do some research and get back to you. In the meantime you must be extremely careful not to injure your self. don't walk around barefoot or even use slippers. It will not offer any protection if you should stub one of your toes. I know all about that because it happened to me. OK on to some research. By the way I am slowly starting to recover from the Staff infection in my lungs. I have a picc line and wear an infusion pump 24/7 for the next few weeks. I will get back to you 18's, Marty http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757281/ On Sat, May 23, 2015 at 10:07 PM, ANGELYN ESDERS wrote: Thank you very much, Ragavan, for your suggestion.I immediately ordered some organic papaya leaf tea and I am awaiting its arrival.I can't wait to try it as my platelets are still so very low in number. Minimum level is 150-450.I have 9. I have red spots all over me and big, purple "bruises" from anywhere I am touched.I have traveled in India 3 times. In which part of India do you live?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Tuesday, May 19, 2015 8:15 AM Subject: Re: [CMLHope] Platelets I am in India. I have given the method below. You can prepare it very easily. Or you can drink two spoons of papaya leaf extract in the morning. Procedure: Dry papaya leaves completely. Add cumin seeds and little black pepper and powder the dried papaya leaves. Keep it safe in a container. Add water to spoon full of papaya leaf powder and boil it. Filter it and drink warm. regards, Ragavan On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: Thank you very much for your reply.I will try to find papaya leaf tea.I am in Canada...where are you?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Sunday, May 17, 2015 7:08 AM Subject: Re: [CMLHope] Platelets I have problems with platelet count. Diagnosed in 2012 Started
Re: [CMLHope] Platelets
Thanks, Marty. I have ordered organic papaya leaf tea and will mix it as Ragavan suggests. My excitement for this week was a "silent" heart attack. I missed it. Felt nothing at all. Felt great all week. A blood test revealed a high level of Troponins in my blood and they got all excited and kept me in hospital for 3 days doing various tests. I will learn the results this week. I see a platelet specialist tomorrow. Maybe he will have more words of wisdom. I am really happy to hear that you recommend papaya tea also and that it works. I had 9 platelets on Friday (normal level 150-450) and my hemoglobinhad dropped into the low 80's. This seems to be an ongoing battle as my lupus tries to kill my body one cell at a time.Wishing all the best to you! 18's~ Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Sunday, May 24, 2015 8:24 AM Subject: Re: [CMLHope] Platelets Hi Angie, Please read this about the effects to not only your platelet counts but also your red cell count. Ragavan gave you some valuable advice but you need to find the best supplement that contains the best form of Papya leaf extract. By the way when I had my bone marrow transplant one of my friends got me some of it and it did work. Let me do some research and get back to you. In the meantime you must be extremely careful not to injure your self. don't walk around barefoot or even use slippers. It will not offer any protection if you should stub one of your toes. I know all about that because it happened to me. OK on to some research. By the way I am slowly starting to recover from the Staff infection in my lungs. I have a picc line and wear an infusion pump 24/7 for the next few weeks. I will get back to you 18's, Marty http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757281/ On Sat, May 23, 2015 at 10:07 PM, ANGELYN ESDERS wrote: Thank you very much, Ragavan, for your suggestion.I immediately ordered some organic papaya leaf tea and I am awaiting its arrival.I can't wait to try it as my platelets are still so very low in number. Minimum level is 150-450.I have 9. I have red spots all over me and big, purple "bruises" from anywhere I am touched.I have traveled in India 3 times. In which part of India do you live?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Tuesday, May 19, 2015 8:15 AM Subject: Re: [CMLHope] Platelets I am in India. I have given the method below. You can prepare it very easily. Or you can drink two spoons of papaya leaf extract in the morning. Procedure: Dry papaya leaves completely. Add cumin seeds and little black pepper and powder the dried papaya leaves. Keep it safe in a container. Add water to spoon full of papaya leaf powder and boil it. Filter it and drink warm. regards, Ragavan On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: Thank you very much for your reply.I will try to find papaya leaf tea.I am in Canada...where are you?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Sunday, May 17, 2015 7:08 AM Subject: Re: [CMLHope] Platelets I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, v
Re: [CMLHope] Platelets
Thank you very much, Ragavan, for your suggestion.I immediately ordered some organic papaya leaf tea and I am awaiting its arrival.I can't wait to try it as my platelets are still so very low in number. Minimum level is 150-450.I have 9. I have red spots all over me and big, purple "bruises" from anywhere I am touched.I have traveled in India 3 times. In which part of India do you live?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Tuesday, May 19, 2015 8:15 AM Subject: Re: [CMLHope] Platelets I am in India. I have given the method below. You can prepare it very easily. Or you can drink two spoons of papaya leaf extract in the morning. Procedure: Dry papaya leaves completely. Add cumin seeds and little black pepper and powder the dried papaya leaves. Keep it safe in a container. Add water to spoon full of papaya leaf powder and boil it. Filter it and drink warm. regards, Ragavan On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: Thank you very much for your reply.I will try to find papaya leaf tea.I am in Canada...where are you?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Sunday, May 17, 2015 7:08 AM Subject: Re: [CMLHope] Platelets I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google
Re: [CMLHope] Platelets
Thank you very much for your reply.I will try to find papaya leaf tea.I am in Canada...where are you?Angie From: Gopalsamy Ragavan To: cmlhope@googlegroups.com Sent: Sunday, May 17, 2015 7:08 AM Subject: Re: [CMLHope] Platelets I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: Platelets
Hi, John.I live in Brantford, just the other side of Hamilton. I go to Juravinski in Hamilton as well as McMaster. I was in the Gleevec study for 12 years.I have done so well on Gleevec that no one has suggested any change in years. Hopefully they will find some way to stabilize my platelets and hemoglobin. I am feeling a little frail right nowNice to hear from you...Angie From: John Barrons To: "cmlhope@googlegroups.com" Sent: Saturday, May 16, 2015 3:33 PM Subject: Re: [CMLHope] Re: Platelets Hi Angelyn I have had cml since 1999. I wa on gleevec in 2001 and for another couple of years but had to come off it. Then I went on sprycel for anothe r couple of years. I was a couple of others and I have been on Ponatinib for the last two and a half years. It has been a good drug for me and we are still tweeting the dose. Two pills a week puts my platelets at a low value so I am on one pill a week. I go to Princess Margaret Cancer in Toronto . I noticed your email is Rogers.com. Maybe you live close to me as my email is also Rogers.com. John B Sent from my iPad On May 16, 2015, at 1:01 AM, Richard H wrote: My problem has always been hemoglobin and I had six months of 2 units of platelets every 3 weeks to try and keep the hemoglobin above 10. There are others that experienced platelet problems. I would ask what dosage of Gleevec you are taking. I started on 400 mg Gleevec in 2002 and that caused my anemia after 5 1/2 years. I finally received support to stop taking Gleevec until the counts forced me to return to Gleevec. I restarted 400 mg of Gleevec and 3 weeks later it had to be reduced to 300 mg. I relived every problem in 5 1/2 weeks instead of 5 1/2 years. I started taking a shot of Procrit to help rebuild my red blood cells. I had a setback when I was taken to the hospital the end of April. l found I had Vertigo that probably result of my near transfusion level. They re-examined my all of my medical problems and medications. The also found an artery leaking blood and sealed it. They also changed some of my medications. This past 3 weeks have been a joy. I am gaining strength daily, and while I am growing older and more forgetful I haven't experienced any Gleevec fog. The Gleevec did give me about a 15 log reduction (for those who count logs I was at 17 in December and in March it was under 2). I get the results of my next ABL-BCR on the 26th. Richard H. On Friday, May 15, 2015 at 11:02:37 PM UTC-5, Angie wrote: Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com
[CMLHope] Platelets
Does anyone have problems maintaining their platelet level?Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week.My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment.Can anyone share info on this?Angie in CanadaGleevec pioneer since 2001 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: U[PDATE FOR MARTY
BIG HUGS to you, Martyand best wishes for these pains and problems to pass.Thinking of you...Angie In Canada...but presently in New Zealand. From: bkbarney via CMLHope To: cmlhope@googlegroups.com Sent: Tuesday, March 31, 2015 11:16 AM Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY On Mar 30, 2015, at 7:54 AM, Marty Gartenberg wrote: Just to let everyone know, I do consider all of you as my extended family. When someone hurts then so do we all. We are all a very tight knit group. Please know that It has been very difficult for me to stay in touch with all of you because this procedure has kept me in and out of the hospital several times. However be assured When ever I can I will be in touch. Also sometimes the pain is so bad that I have to be medicated and just can't seem to keep an open mind. In all of this I have learned how to accept the pain but trying to keep it under control is another story. If I don't return your emails it will be taken care of as soon as I can get my strength back. Thank you for your understanding. 18's Marty On Mon, Mar 30, 2015 at 12:18 AM, Richard H wrote: Marti's has spoken. It's great to hear from you. This is just to let you know that we are all very concerned about your progress. Your CML family is worrying and praying for your recovery. I am sorry to hear you are having pain, hope they find some relief so you feel better. RicharH. On Sunday, March 29, 2015 at 7:34:42 PM UTC-5, wa2yyx wrote: Hi everyone, I did get my kidney transplant and I am trying to recover, i am in a lot of pain but when I feel better I will let you know 18's , -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Kidney Transplant
Marty, congratulations! I wish only the best for you.Yesterday marked 36 years since I gave my brother a kidney. Now I am a candidate for eventual dialysis, so every story doesn't have a good ending.I'm sure that with your indomitable spirit you will come through with flying colours.Angie in Canada From: Myvety2k via CMLHope To: cmlhope@googlegroups.com Sent: Tuesday, February 10, 2015 6:16 PM Subject: Re: [CMLHope] Kidney Transplant This my dear friend is the best news that I have received in a very long time and you do deserve it. I hoping that it is right around the corner. I am so happy for you. greenie In a message dated 2/10/2015 4:57:48 P.M. Eastern Standard Time, wa2...@gmail.com writes: First I would like to thank each and every one of you for your prayers. As I pray for all of you I know that you have been also praying for me. This web site makes all of us as one caring family and it is always of help for all of us. I was just called by my transplant coordinator to inform me that I am now in status 5. As soon as a B+ matching comes along and if is a good cross match I will be called. It could be anytime or maybe a month or longer. There is no way of knowing. At least now I know that it is almost there. Hopefully very soon. I have been looking for this for almost four years. All of my doctors have been writing letters to the Cleveland Clinic and yesterday my kidney doctor also wrote one asking for me to be elevated on the list. Again, I am really blessed by having all of you as my friends. I will keep you informed of any further news. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Facing misfortune....
A Fantastic message from your friendHave a great day, Marty!A. From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, January 15, 2015 5:18 AM Subject: Re: [CMLHope] Facing misfortune Hi Angie, Very well said. It reminds me of when I had my bone marrow transplant and had to live in a plastic bubble in the hospital for many months. A friend of mine came to see me and even though he couldn't come into the bubble he pasted this on the outside of that bubble. Any time that I had any doubts I would read it. EXPECT THEBEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVESUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECTTHE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOUEXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVETO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TOEXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OFPOSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLETHEN MOVES INTO THE AREA OF POSSIBILITY.EVERY GREATTHING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF ADOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...FOCUS... 18's, Marty On Wed, Jan 14, 2015 at 10:06 PM, ANGELYN ESDERS wrote: Truth be told, when hard times hit, and the challenges you face are great, you can either let your situation define you, let it destroy you or let it strengthen you. The choice is yours to make.-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Facing misfortune....
Truth be told, when hard times hit, and the challenges you face are great, you can either let your situation define you, let it destroy you or let it strengthen you. The choice is yours to make. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Shingles Vaccine Zostavax
I was refused the shingles vaccine. I awoke on Good Fr4iday morning with a wet hand from scratching some blisters on my shoulder. I knew it was not normal, and was at the hospital by 8:30am. By 11am I had received and taken medication. The shingles never developed beyond a patch about 4 inches by 3 inches on my left shoulder. We applied the prescribed ointment...had a bit of stabbing pain in the 1st 24 hr, and then it proceeded to heal.Get it treated IMMEDIATELY, and your results may not be too bad.Angie in Canada p.s. greetings from Zanzibar! From: 'Susan Zimmerman' via CMLHope To: cmlhope@googlegroups.com Sent: Wednesday, December 10, 2014 11:49 AM Subject: Re: [CMLHope] Shingles Vaccine Zostavax Hi Peter, Just last visit with my onc specialist named Jessica Altman who is on staff a Northwestern Univ. of Chicago, she clearly told me that CML patients should NOT have the live virus for shingles. Thank you for all the articles which basically substantiate this claim. My doc (and Greenie's) is highly respected at Moffitt Cancer Center in Florida. Since I do have a healthy immune system and am in remission, I would be a possible contender to receive it according to your articles below. But I am not in favor of most vaccines, so will definitely go by my own doc's suggestion. This is just my take on the situation, and I know many may disagree. And pray for God's protection against shingles for all of us!!! Have a wonderful holiday season. 18's, Susan F. Zimmerman -Original Message- From: Peter To: cmlhope Sent: Wed, Dec 10, 2014 11:06 am Subject: [CMLHope] Shingles Vaccine Zostavax Hi everybody. Has anyone here received the shingles vaccine Zostavax? The question is whether it is safe for CML patients. The info I have found is not 100% clear. The answers range from "should not" to "not recommended" to "may be given..". (See below) Manufacturer (Merck) http://www.merck.com/product/usa/pi_circulars/z/zostavax/zostavax_ppi.pdf You should not get ZOSTAVAX if you have a weakened immune system (for example, an immune deficiency, leukemia, lymphoma, or HIV/AIDS). Public Health Canada http://www.phac-aspc.gc.ca/publicat/cig-gci/p04-herp-zona-eng.php HZ vaccine is contraindicated in people with immunodeficiency due to acute or chronic leukemia. However, persons with leukemia in remission and who have not received immunosuppressive chemotherapy or radiation for at least 3 months and who do not have defects in T cell function can receive HZ vaccine; consultation with an immunologist may be required. Centers for Desease Control http://www.cdc.gov/vaccines/hcp/vis/vis-statements/shingles.pdf A person should not get shingles vaccine who cancer affecting the bone marrow or lymphatic system, such as leukemia or lymphoma. Mayo Clinic http://www.mayoclinic.org/diseases-conditions/shingles/expert-answers/shingles-vaccine/faq-20057859 The shingles vaccine isn't recommended if you have cancer that affects the bone marrow or lymphatic system, such as leukemia or lymphoma. National CML Society http://www.nationalcmlsociety.org/faq/immunizations Using the most current infectious disease guidelines, Zostavax (shingles vaccine) may be given to CML patients who are stable and not experiencing any evidence of relapse or progression, and who do not have other immune suppressive issues such as recent requirements for high dose corticosteroids. Individuals with CML who have restored and stable immune systems are eligible to receive the shingles vaccine if APPROVED BY THEIR CML SPECIALIST, since it contains elements of live virus. It is safe, however, for family members or those in close contact with CML patients to receive the vaccination. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this grou
[CMLHope] Blood test - hand veins
My kidney specialist has given my a blood requisition. On it is a bright lime green sticker advising the phlebotomist : ***KIDNEY PATIENT*** If possible, please use hand veins first. Do any of you know WHY this would be a recommendation? It sounds like cruel and unnatural punishment to me. The hand hurts more than any other location, and I get a big purple bruise that lasts for 3 weeks and of course everyone sees it and asks about it. How can there be a benefit to taking blood from the hand? It is only about 8-10 inches from my arm from where blood tests are usually taken. Same blood! Just wondering if this is necessary...or plain sadistic. Thanks~ Angie in Canada -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: Millie
Condolences on the loss of your mother, Chris. Wishing you peace and comfort Know that your sadness is shared with many who care. Angie in Canada From: C.M. Houtz To: cmlhope@googlegroups.com Sent: Thursday, July 3, 2014 10:09:58 PM Subject: Re: [CMLHope] Re: Millie Hospice just called. Mom has passed. Chris -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] May 21st
Happy Birthday, Marty... I hope you had a wonderful, happy day with joy and sweet surprises, and that these blessings will carry into the forthcoming year May 21st: My late brother John would have been 78 today. I gave him a kidney on Feb. 9, 1979. He died on Feb. 9, 1984. Funny how life is. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Wednesday, May 21, 2014 10:01:00 PM Subject: [CMLHope] May 21st Well, it's May 21st which is my first and second birthday. I was actually born on May 21st 1944 and had my bone marrow transplant when I was 45 years old on May 21st 1989. If you do the math I'm 70 years old today. My wife Shelly celabrated her birthday yesterday May 20th. 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: let's all write about when we were first dx with leukemia
In Dec. 2000 I was teaching full time, doing a 3 hr hike every Saturday, and generally being quite active and feeling normal. I was having hot flashes, which is exactly what a 53 yr old woman might expect. On 3 occasions I had cold flashes. With no explanation at all, I would get so freezing cold I was literally shaking. My skin would 'hurt' as though I were standing in a freezer, teeth would chatter...and it would pass after a few hours. I told my dr. about the chills and he said it was just a confused body thermometer that didn't know if it should be hot or cold...hormonal and normal. I was to undergo a gynecological procedure and a routine blood test was taken. The gynecologist phoned my school and told me that I had "a blood disorder" and I was to go for blood work on Friday at the hosp. When I got there...big delay...and I was wondering why they didn't just take a few tubes and let me go back to school. They informed me that I would have a bone marrow biopsy done. I had never even heard of that before. I said that I was just FINE. The dr. said in a mournful voice, "Oh no, Mrs. Esders, you are a very sick woman. Well, that was news to me! The biopsy was scary (and painful) as I really didn't know what to expect. I was released after the whole day in hosp. and called shortly thereafter and told to come to the dr's office with a "supportive adult".grim foreboding sets in On Dec. 11, I was informed that I had CML and would be treated at McMaster University Medical Centre in Hamilton, Ont. All I could think that day was, "HOW on EARTH could all these experts be s wrong? I am perfectly FINE!" The team at McMaster was a true blessing. I was offered a chance to be on the Gleevec study, and accepted it. I was one of the last people in the world allowed into the study. It closed a day later. Five patients at McMaster qualified. The computer randomized 4 to the traditional treatment of interferon and citarabine (sp?) I was the only one randomized to the study drug. I was quite nauseous at the beginning on 400 mg of Gleevec, but learned to eat a bowl of oatmeal first and take an antinauseant (Bonamine). It no longer bothers me. I always take it after a solid breakfast containing protein. I have been on Gleevec since Jan. 22, 2001. On July 5, 2001, I reached cytological remission, my dose was reduced to 300 mg a day...and life went on. Dr. Walker, having had 2 bone marrow biopsies done on himself, is a master at it, and I learned to chew bubblegum, listen to music on headphones, keep my hands relaxed, and sometimes even whistle through the procedure. I experienced dreadful muscle cramping at the beginning (all over my body) but that seems to have passed. In 2003 I had 2 mild heart attacks. In 2006 I was diagnosed with SLE... Lupus. Lupus has been about 100 times worse to deal with than CML!!! I gave a kidney to my brother in 1979. Sadly the remaining kidney is pretty tired out after all my drugs and oral chemo over 35 yr, and now I am having to pay close attention to my diet and take insulin in order to prolong the life of the kidney. I am still way too active, loving the blessings that life brings. I volunteer a lot, travel a lot, and sing. Who knows what will land on me next? I'll just do my best to step over it and continue... Angie In Canada. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] NY Times OHSU ad
Thanks, Ruth! Very informative and interesting What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "mar...@enter.net" To: cml2 cml2 ; CML HOPE HOPE Sent: Friday, May 16, 2014 1:43:53 AM Subject: [CMLHope] NY Times OHSU ad See the NY Times Sunday edition for May 11, 2014, for a 2-page ad placed by OHSU (Oregon Health & Science University. Druker is here.) Message: CANCER DOESN'T NEED ANOTHER RIBBON. IT NEEDS ANOTHER CURE. In case you don't find it, here is the text: At OHSU, we take a different approach to fighting cancer. We revolutionized the treatment of chronic myeloid leukemia with Gleevec. For hundreds of thousands of people, CML is no longer a death sentence. That's one cancer down. (Bold type) Cancer doesn't need more awareness. It needs more Gleevecs. We are going after cancer as aggressively as it goes after us. And because time is of the essence, Nike cofounder Phil Knight and his wife, Penny, have pledged $500 million if we can raise a matching route. Help us make cancer the victim. onedown.org Nancy Chando and I went to NYC in Jan. or Feb. to hear him speak: "The Cure for Cancer Is within Reach.) The talk was at the 92nd Street Y. We arrived, checked in at the main desk, and made our way through a couple of security guys. We were surprised that Drucker would need that. But then found out security was for Chelsea Handler. Didn't get to see her. My memory has faded regarding what he said. But talk was shaped by "Where we were, where we are, and where we're going. All is hopeful. New drugs in the pipeline and the promise of the genome to yield significant information for research. Nancy and I met a woman in the audience and sat 3 across with her. She had cml and was in remission. When it was time for questions I raised my hand and told Drucker that we were 3 people in remission from cml & that we were forever grateful and appreciative. And said we would like to shake his hand--and maybe hug and kiss him. We got resounding applause for our remission. We introduced ourselves to him after the lecture and had pictures taken with him. We didn't hug or kiss him. He was modest and unassuming, not formal or aloof. It was so satisfying to meet him. We felt lucky and privileged. My best regards to everyone. Hope you are well, or soon will be. Ruth Marcon -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Happy Passover!
This comes to me from a friend in Jerusalem... Happy Passover plus Vivaldi. לכל ידידי באשר אתם בארץ או בחו"ל איחוליי לחג שמח וכשר מהנה ובריא חג פסחשמח!!! http://www.youtube.com/watch?feature=player_embedded -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Re: Gleevec and antacids
I used to live on Gaviscon (an over-the-counter drug) for acid reflux. My dr. finally prescribed a daily pill call Pantoprazolemaybe 4 years ago. I NEVER EVER have acid reflux anymore. I take 300mg of Gleevec daily, as well as several other pills for various conditions. They are compatible. Angie in Canada >>Does any one have something that works for acid reflux? I have it for a >>while but it is getting much worse. Thanks very much and God bless each and >>everyone of you. >> >> >>Marcie >> >> >> -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Aniversary 13
Good luck to you, Marty I passed 13 years with CML this past December. I have complications in the kidney also. I gave my brother a kidney in 1979. Sadly, my remaining one, that has been working solo for those 35 years, is starting to decline. I am on a special diet of low potassium and trying hard to control my blood sugar in order to preserve the kidney. Nobody promised us that Life would be easy. We must take JOY in all that we do, concentrate on the positive and let go of the negative as well as we can. I firmly believe that if we are not happy then our meds are not working to their full capacity. 18's to you... Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, March 13, 2014 9:00:12 AM Subject: Re: [CMLHope] Aniversery 13 Hi Dawn, You are a shining example of what 18's means. You are also an example for everyone to see that no matter how it effects them they are still alive because of something that was not around when I had CML. I had no other viable choice but to have gone through a bone marrow transplant almost 24 years ago. Everyone that is reading this is a survivor and should keep that in mind. I would like to bring someone up. His name is Skip, and he has had CML for over 36 years, I believe now going on 37 years, and is currently not on any TKI's but is still alive. I know him personally and I know that his mind is what is controlling his body. This man has such a great attitude that we should all take an example from him, I know that I do. I truly love each and every one of you because you are fighters which few can understand because they don't know what we all go through and still keep on "ticking". I am proud to call you my extended family. Just one more thing to say: When I read about someone being PCRU I am over joyed because of all the advances that have been maid because of all the ways CML is now being treated. Mark my words, before to long CML will be a disease that will be no more, just like Polio was once. A simple vaccine took care of that and so it will be for CML. For those that are not PCRU, then so what, because it is only a bunch of numbers and you are all still alive. Before my bone marrow transplant I was given only a fifteen percent chance of survival. I went into this but said to myself, "hey, this is only a number" and I am still here and alive. It is like the doctor telling his patient you have only six months to live, and the doctor died shortly after. Remember what I have said many times. It is your mind that can help to control your body. Try and live by that and you will be a much happier person. I am not here to preach to any of you but simply trying to help in any way that I can. As I previously mentioned, your all part of my extended family. As most of you know, I have been going through some difficult times and I have been getting so many prayers and good wishes that I just want to return it to all of you. My mind is truly helping me through every day that I live. Now you know why I end each and every post with those two numbers 18's (the symbol for life) to all of you. Marty 18's to each and every one of you. Marty On Wed, Mar 12, 2014 at 11:02 PM, DAWN RODEGHIER wrote: 17 for me, been on Gleevec since it was approved in the US, I also go Monday to my Onc. I still get the cramps in different parts of the body but that's better than the alternative. > > > From: Richard H >To: cmlhope@googlegroups.com >Sent: Tuesday, March 11, 2014 11:13 PM >Subject: [CMLHope] Aniversery 13 > > > >I have passed my 13th year with CML. Monday I will meet with my ONC for the >results on my blood tests. My CBC was eactly where it should be so I am >praying for good results. About a month ago I noticed a spring in my steps to >coffee club and increased energy. I will report the findings after I get them. > > >I am praying for all, and so glad Marty is feeling better and able to join on >line. > > >Richard H. -- >-- >[CMLHope] >A support group of http://cmlhope.com/ >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an >email to cmlhope+unsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/d/optout. > > > >-- >-- >[CMLHope] >A support group of http://cmlhope.com/ >-
Re: [CMLHope] In memory of Ida and Zavie Miller
Very, very nice. Angie What lies behind us and what lies before us are tiny matters compared to what lies within us From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Thursday, October 31, 2013 9:15:55 PM Subject: [CMLHope] In memory of Ida and Zavie Miller I hope this comes through 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Posting for the first time in years
Hi, Shannon. I think I remember you from one of the online chat sessions that Zavie Miller used to arrange so many years ago. I have been on Gleevec for 12½ yr now. I was quickly in remission and now take 300mg a day. I was told long ago to always eat protein before taking Gleevec to avoid upset stomach. I take 2 in the morning and one in the evening. Watermelon seems to help with nausea also. All goes well, thank the powers that be! I hope these suggestions can help you~ Take care... Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Peter To: cmlhope@googlegroups.com Sent: Saturday, October 19, 2013 8:06:23 PM Subject: [CMLHope] Re: Posting for the first time in years Hi Shannon. I was on Gleevec for two years. I remember having a lot of nausea/vomiting for months, until I decided to split the dose, taking half with breakfast and the other half with dinner. No more nausea after that! My doc said, because Gleevec has a long half-life (18 hrs.), it doesn't really matter how you take it. So, you may want to give this a try. Hoping you feel better soon, Peter On Friday, October 18, 2013 6:45:10 AM UTC-4, Shannon L wrote: Hi everyone >my name is Shannon I live in Camden NSW Australia >I was dx 1998 when my son was 15 months, started interferon on high doses >then start gleevic in 2002 and have been in remission since. >I have on the past couple of years had increasing problems such as vomiting >and nausea but my levels are so constant that my spec is reluctant to change >it & I do kind of agree. >Recently my partner of 23 years decided that my cml was too difficult to cope >with, even though I still was able to look after the house my son and run a >small photography business. >It has been difficult being on my own with my son who is about to face his >last year of school which is a very important one. >I am trying to take it a day at a time and hope my health allows me to do what >I need to >Have other people on gleevic long term developed more problems -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] colonoscopy?
Ask the pharmacist. There are alternatives to that hideous and expensive gallon of fluid. There are other ways to accomplish the same. What REALLY annoys me is that the same laxative dose is given to a 5'2" woman as to a 6'6" man. It may work for a man, but for a small woman it is painful, exhausting and above all, NOT NECESSARY! It is unnecessary pain and discomfort. The pharmacist (in Canada) gave me another drug that cost about 1/4 the price of what the dr. had prescribed, and it was not necessary to drink until your eyes almost popped out of your head. That is my 2¢ worth! Æ What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "icandoall...@aol.com" To: cmlhope@googlegroups.com Sent: Sunday, October 6, 2013 11:11:11 AM Subject: [CMLHope] colonoscopy? Thanks Sherri, My doctor wants me to half it and drink half the night before and the other half early on the morning of the procedure. Anyone else have to do this? Thanks again, Jeanie<3 In a message dated 9/29/2013 7:46:16 P.M. Eastern Daylight Time, swanson.sherri...@gmail.com writes: Hi Jeanie, > >Ive, had many EDG's and never had any problems. As for the colonoscopy, I >agree with Greenie, the prep is the worst part of the procedure. Drinking >that gallon of liquid is a real downer. I start my drink at like 2 p.m. so I >can take a little longer to drink it than what the directions say. Hope that >helps and that everything goes well for you. > >Sherri > > > > > >On Sun, Sep 29, 2013 at 3:56 PM, wrote: > > >>Hi Jeanie, about the colonoscopy and the edoscopy. I had both about 4 years >>ago and the bad part is the gallon of fluid you have to drink the night >>before. I won't good into detail. That was the bad part for me put they >>put me in la la land I when they woke up I didn't feel or remember a thing >>of course everyone is different put I wouldn't worry about having it done. >> >>Hang in their, >> >>greenie >> >>In a message dated 9/29/2013 2:45:28 P.M. Eastern Daylight Time, >>icandoall...@aol.com writes: >> >>> -- >>-- >>[CMLHope] >>A support group of http://cmlhope.com >>- >> >>You received this message because you are subscribed to the Google Groups "CMLHope" group. >>To post to this group, send email to CMLHope@googlegroups.com >>To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com >>For more options, visit this group at http://groups.google.com/group/CMLHope >>--- >>You received this message because you are subscribed to the Google Groups "CMLHope" group. >>To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. >>For more options, visit https://groups.google.com/groups/opt_out. >> > -- >-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups "CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups "CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/groups/opt_out. > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+uns
[CMLHope] Re: Does any one use Apple Cider Vinegar?
Every morning of her life my mother drank a glass of warm water containing a spoonful of honey and a spoonful of apple cider vinegar. She lived to age 97. After I was born in 1947, she went 61 years without revisiting a hospital. She took no medications. (I sure wish I had inherited her iron constitution!) Angie in Canada > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi..Susan's Life
AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman To: cmlhope@googlegroups.com Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a "social service agency" within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Marty Gartenberg To: cmlhope Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: "I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else." Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz wrote: >Hi Susan, > >I'm glad that you are going to get so
[CMLHope] A good story....
http://play.simpletruths.com/movie/the-empty-pickle-jar/store/ -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Photos
My favourite! Life is given to us for celebrating. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman To: cmlhope@googlegroups.com Sent: Wednesday, July 17, 2013 5:09:14 PM Subject: Re: [CMLHope] Photos LOVE CELEBRATING MY LIFE.THAT WINS, WHO ELSE VOTES FOR THIS ONE Celebrating my Life, Susan -Original Message- From: Pat Elliott To: cmlhope Sent: Wed, Jul 17, 2013 5:05 pm Subject: RE: [CMLHope] Photos I am someone who is focused on being healthy and busy Celebrating My Life. J From:cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Susan Zimmerman Sent: Wednesday, July 17, 2013 2:02 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Photos COMPLETELY MOTIVATED LOVELIES? CARCINOGENIC MOST LIVELY? (ugh) Susan -Original Message- From: ANGELYN ESDERS To: cmlhope Sent: Fri, Jul 12, 2013 11:35 pm Subject: Re: [CMLHope] Photos I conclude that the Warriors are an amazingly attractive group of people! CML? Currently More Lovely?? What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From:"myvet...@aol.com" To: cmlhope@googlegroups.com Sent: Friday, July 12, 2013 3:45:22 PM Subject: Re: [CMLHope] Photos Hi Marcie, Here are some pictures of my Wife Grace, my Daughter Susan and my son Derek. From young to older. I hope I did this right. Greenie In a message dated 7/11/2013 8:10:30 P.M. Eastern Daylight Time, margoo...@aol.com writes: Dear Warriors: > >We've been online together for a long time. For me it's been 4 1/4 years, many >of you much longer. What does everyone think of posting a photo so we can see >one another? I'm Facebook >friends with a couple of you but I'd love to visually "meet" all of you. > >Any thoughts? > >Marcie > >Sent from my iPad > >-- >-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an >email to cmlhope+unsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/groups/opt_out. > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For mo
Re: [CMLHope] photo
Thank you, Marcie! I am just loving looking at the photos! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marcie Goodman To: "cmlhope@googlegroups.com" Cc: "cmlhope@googlegroups.com" Sent: Friday, July 12, 2013 8:54:21 PM Subject: Re: [CMLHope] photo Hi Angie! You have beautiful skin. First thing I noticed. You and Charles are a lovely couple. Can't wait to start on my photo album. Marcie Sent from my iPad On Jul 11, 2013, at 11:41 PM, ANGELYN ESDERS wrote: Angie, and my husband, Charles. > >What lies behind us and what lies before us are tiny matters compared to what >lies within us >Angie -- >-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an >email to cmlhope+unsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Photos
I conclude that the Warriors are an amazingly attractive group of people! CML? Currently More Lovely?? What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "myvet...@aol.com" To: cmlhope@googlegroups.com Sent: Friday, July 12, 2013 3:45:22 PM Subject: Re: [CMLHope] Photos Hi Marcie, Here are some pictures of my Wife Grace, my Daughter Susan and my son Derek. From young to older. I hope I did this right. Greenie In a message dated 7/11/2013 8:10:30 P.M. Eastern Daylight Time, margoo...@aol.com writes: Dear Warriors: > >We've been online together for a long time. For me it's been 4 1/4 years, many of you much longer. What does everyone think of posting a photo so we can see one another? I'm Facebook >friends with a couple of you but I'd love to visually "meet" all of you. > >Any thoughts? > >Marcie > >Sent from my iPad > >-- >-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups "CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups "CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] a picture for you
GREAT photo! Lovely kids, too~~ What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: C.M. Houtz To: tasigna-support-group-...@googlegroups.com; CMLHope@googlegroups.com Sent: Friday, July 12, 2013 6:52:53 PM Subject: [CMLHope] a picture for you This is photo of me, my husband, Dick, Colin, and in front of me is Luke and Abbie. Hope that you enjoy this. I seldom have my photo taken but this was a special day, so had to do it. MillieYou have been sent 1 picture. 055.JPG These pictures were sent with Picasa, from Google. Try it out here: http://picasa.google.com/ -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] a picture for you
Nice to meet you, Millie. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: C.M. Houtz To: CMLHope@googlegroups.com; tasigna-support-group-...@googlegroups.com Sent: Thursday, July 11, 2013 11:01:25 PM Subject: [CMLHope] a picture for you I'm sending a photo taken a couple of years ago at our guild Christmas Party. Hope this works for youGood Idea Marcie. Didn't get yours, Marty...Sometimes I have trouble getting photo's sent a certain way...but I get othersWho knowsMillieYou have been sent 1 picture. SCQG%20Party%20003.jpg These pictures were sent with Picasa, from Google. Try it out here: http://picasa.google.com/ -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Taking a break from gleevec after over 12 years
Having been in remission for 12 yr. now, I see my oncologist only twice a year. When I saw him Thursday I brought up the topic of a break from Gleevec. He did not encourage it in the least, and he gave several reasons why he thought it was not a good idea. I was a little disappointed, but...hey! I am doing great, so why meddle? I have taken 300mg of Gleevec daily for at least 8 years now. My side effects are minimal... I am grateful to feel so well and to live the life I choose. I will ask the dr. again in 6 months and see if he has changed his mind yet. Angie~in~Canada -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Taking a break from gleevec after over 12 years
I started Gleevec at McMaster University Medical Centre in Hamilton, Canada, on Jan. 22, 2001. My tests in June 2001 confirmed that I had reached cytogenic remission. I think I was #69 in Zavie's Zero Club. I am planning to discuss a holiday from Gleevec next time I see Dr. Walker, my hematologist at Juravinski in Hamilton. We shall see12 years is a long time What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Richard H To: cmlhope@googlegroups.com Cc: "CMLHope@googlegroups.com" Sent: Monday, June 3, 2013 11:25:59 PM Subject: [CMLHope] Re: Taking a break from gleevec after over 12 years That's great news. When I went off Gleevec 5 years ago. I was tested every month for a while then as I progressed with excellent results to 3 months and then 6 months. The body also responded nicely, I gained energy, lost 30 pounds and my leg edema went away. I am glad your ONC is willing to work with you. Richard H. On Monday, June 3, 2013 9:35:22 PM UTC-5, Sylvia wrote: Hello everyone >It has been many years since I have written to this group. I was diagnosed >with CML in June 1998 at 37 years old and many friends I met through this >group are no longer with us. Those were the days of interferon and ara-c, >procrit etc (all via injection). I was one of the first to start Gleevec in >Canada in April 2001. I am number 80 in Zavies Zero club! Gleevec has given >me back my life and I am very thankful for it. That being said the last few >months I have had swelling in my legs and stiff knees and I have taken myself >off the Gleevec. In 12 years I have barely missed any days, but now I am >feeling my body need a rest. I am worried about my liver and Millie's email >reinforces my feelings that I need a break from the Gleevec. I told my dr and >he wants me to come in for a PCR in a month and not wait until my 4 mos check >up in Aug. I am very interested in what everyone in this community thinks and >if they can offer me some advice. >My prayers to Millie and all those with challenges. Thanks to everyone for >their support all these years. > >Sylvia > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Cramping...
I was really bothered by cramping for some years (I have been on Gleevec for 12 years now.). I find that the best and fastest relief for cramping in the feet is standing barefoot on a COLD surface. As my bedroom is carpeted, I used to keep a large plastic covered book beside the bed to step on when the cramps attacked. It was, at least, cool to my feet. Any movement repeated a few times with effort will cramp mepeeling potatoes, polishing silver, cutting with scissors. I have even gotten a cramp in my lips while putting on lipstick. The cramp of the throat muscles while yawning is the MOST uncomfortable of all. I hate getting a foot cramp while I am driving at high speed on a freeway. I tried potassium supplements, and drinking orange juice when a cramp struck. After so many years I still get them but they are fewer and farther between. I always look around and see unfortunates whose lives are worse than mine, and I am grateful for the ability to live a pretty normal life despite CML. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Wed, May 1, 2013 2:28 pm Subject: [CMLHope] Jim and Millie and all Thanks Jim for all your support. You there Millie? Just wondering how you are? Jeanie<3 In a message dated 4/30/2013 5:51:30 P.M. Eastern Daylight Time, drodegh...@sbcglobal.net writes: Hi Peg, I also have the cramping, I'm on Gleevec since it was approved in the USA. I was dxed 4/12,1997. I've experienced many of the known side effects. Eye bleeds, cramping in the legs(upper and lower), feet insteps, forearm, hands, I inquired abut muscle relaxers and Onc. gave me some and it didn't help. The legs and hands respond to hot water, the feet don't! My Pcr test is negative that's a plus that we are so happy for. I'm 68 and the side effects aren't bad enough for me to want to venture into the unknown with a different med. that may not even work for me or the side effects are worse than what I currently have. > >18s to all my fellow warriors we must never give up research is making head >way as never before who knows what they ill come up with next. some day the >big "C' will stand for CURE. I pray every day for that AMEN. God Bless us all. >Jim Rodeghier > >--- On Mon, 4/29/13, peg wrote: > > >>From: peg >>Subject: [CMLHope] TKI Spasticity >>To: cmlhope@googlegroups.com >>Date: Monday, April 29, 2013, 10:57 AM >> >> >>Hi all, >> >> >>Sorry it takes me a while to catch up these days. Just read Beth's post on >>spasticity and wanted to share. There are many folks having muscle related >>problems with all of the CML drugs. The spectrum ranges from the seriousness >>of myopathy to simple muscles spasms, with everything in between. Gleevec >>gave me myopathy. Because I was not a good candidate for Tasigna we moved >>directly to Sprycel back in 2010...before it was front line approved. For me >>Sprycel causes such severe muscle contractions that I have developed >>contractures in several places in my body. At first we just thought it was my >>arthritis causing limited range of motion, but then several months ago >>finally realized what had happened. I am in physical therapy now to improve >>my range of motion. We have also had to radically adjust the Sprycel >>dosing...not just for the contractures, but also the crippling fatigue, mind >>numbing brain fog, bone pain and Sprycel induced depression. The only time I feel really good now is on Sprycel "holidays". >> >> >>After many dose reductions here's where I am at...in 2011 we started dropping >>the daily dosefirst 70mg then 50mg. We also tried 50mg every other day, >>then 20mg daily. All of these changes still held me at PCRU. But even at >>20mg daily it was difficult to have a normal life. There was also a concern >>from the specialist I see who helped develop Spycel. He believes that from >>what he is seeing, the way Sprycel affects the CML is more related to the >>size of each dose, rather than the frequency, so he had a concern that 20mg a >>day would not hold the PCRU. Although I have heard of cases where it is. We >>also noted that for me a "washout" of a few days off Sprycel helped me >>recover from the side effects. Without that washout, the affects would load >>up. So this was when we started experimenting last Oct with twice weekly >>dosing. Unfortunately 70mg still proved to high a single dose for me, so we >>did a brief five months at 50mg every third day. However, the side effects from each dose are still so severe, it is like sticking my finger in a light socket, everything in my body clenches. This starts two hours after each dose and lasts for almost 24 hours. Every third day dosing was just craziness, since I couldn't plan around that well...and found myself dragging myself painfully through life every third day...hating every minute of
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Great advice, Marty! Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Friday, April 19, 2013 9:30:59 AM Subject: Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon Hi Millie, You just said something that shows me what type of a person you really are. You said that you are working to make yourself feel better. Maybe not in those exact words but the same idea. I would like to send you something that was given to me when I had my bone marrow transplant. It was pasted on the outside of the plastic bubble I had to live in for many months. I read it every day and it gave me insperation to continue along my journey. Please see below... I hope that your tests come out well for you and hopefully they may find a solution to your problem. You also have something that is very precious and that is how your mind works. I always say that when you have Leukemia it is not only a disease of the body but the mind as well. You seem to be controling your disease with your mind helping you along. I'm not saying that you can cure yourself with your mind but only that you yourself make it a lot eiser to deal with it because your a very strong willled person. So, I know that this is also meant for you as well... 18's Marty EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. OUR BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... On Thu, Apr 18, 2013 at 2:02 PM, C.M. Houtz wrote: >Hi Marty.It is good to see you one line. I will keep you in my prayers and pray that you hear something about a transplant soon. You are always such an inspiration to all of us. No one keeps on top of things like you do. I've been feeling sick for months now, and now they're going to send me to a specialist and perhaps he can figure it all out. I am working hard on feeling good. We all have down times, but I don't give up. You take care. >18's to you and yours, >Millie -- >-- >[CMLHope] >A support group of http://cmlhope.com/ >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >--- >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To unsubscribe from this group and stop receiving emails from it, send an >email to mailto:cmlhope%2bunsubscr...@googlegroups.com. >For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] skin problems on tasigna
Any chance it is psoriasis? What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "patrickemailguard-g...@yahoo.com" To: cmlhope@googlegroups.com Sent: Sunday, February 24, 2013 10:15:25 PM Subject: Re: [CMLHope] skin problems on tasigna Daniel, Lots of possibilities including coincidence. Sounds like it might be fungal. Especially what you're describing behind the ear. Think of dandruff below the hair line. It's easy and pretty innocuous to check out. Try a little clotrimazole cream in one area. If that's the problem you should see substantial improvement in a day or two. For the scalp (and other areas) an anti-dandruff shampoo with selenium sulfide can be much more effective than the zinc versions. (1% OTC vesions include Head & Shoulders Intensive Care, Selsen Blue. 2% versions are prescription. Despite all the commercials about "dry scalp" dandruff is a fungal infection.) Patrick --- On Sun, 2/24/13, daniel wrote: >From: daniel >Subject: [CMLHope] skin problems on tasigna >To: cmlhope@googlegroups.com >Date: Sunday, February 24, 2013, 12:02 AM > > >hi all, >i am having a lot of small red, scaly patches popping up in several areas on >arms and behind ears. also some inflammation on one eyelid. i have had skin >problems since starting tasigna 3 years ago (itchy scalp, slight rash), but >this stuff is new and seems a bit more serious. anyone familiar with this sort >of problem? any suggestions for treating it? >thx, >daniel-- -- [CMLHope]A support group of >http://cmlhope.com/- You >received this message because you are subscribed to the Google Groups >"CMLHope" group.To post to this group, send email to >CMLHope@googlegroups.comTo unsubscribe from this group, send email to >CMLHope-unsubscribe@googlegroups.comFor more options, visit this group at >http://groups.google.com/group/CMLHope--- You received this message because >you are subscribed to the Google Groups "CMLHope" group.To unsubscribe from >this group and stop receiving emails from it, send an email to >cmlhope+unsubscr...@googlegroups.com.for more options, visit >https://groups.google.com/groups/opt_out. -- -- [CMLHope]A support group of >http://cmlhope.com/- You >received this message because you are subscribed to the Google Groups >"CMLHope" group.To post to this group, send email to CMLHope@googlegroups.comTo unsubscribe from this group, send email to CMLHope-unsubscribe@googlegroups.comFor more options, visit this group at http://groups.google.com/group/CMLHope--- You received this message because you are subscribed to the Google Groups "CMLHope" group.To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com.for more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] A girls last hope to beat Leukemia
Thanks, Marty. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Monday, December 10, 2012 5:36:44 AM Subject: Re: [CMLHope] A girls last hope to beat Leukemia Hi Angie, I like your analogy Hugs. 18's Marty On Sun, Dec 9, 2012 at 11:13 PM, ANGELYN ESDERS wrote: Simply amazing! Thanks for sharing this article. >Angie in Canada > >What lies behind us and what lies before us are tiny matters compared to what >lies within us >Angie > > From: Marty Gartenberg >To: CMLHope@googlegroups.com >Sent: Sunday, December 9, 2012 10:38:43 PM >Subject: [CMLHope] A girls last hope to beat Leukemia > > >I would like everyone to read this. > > >A girls last hope to beat Leukemia. It was actually ALL but there is also >something going on about other types of Leukemia. From what I read there is a lot of progress that may in the very near future make Leukemia a thing of the past. >http://www.nytimes.com/2012/12/10/health/a-breakthrough-against-leukemia-using-altered-t-cells.html?_r=0 > >18's >Marty >-- >[CMLHope] >A support group of http://cmlhope.com/ > >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope > > >-- >[CMLHope] >A support group of http://cmlhope.com/ >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope<<35D.gif>>
Re: [CMLHope] A girls last hope to beat Leukemia
Simply amazing! Thanks for sharing this article. Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Sunday, December 9, 2012 10:38:43 PM Subject: [CMLHope] A girls last hope to beat Leukemia I would like everyone to read this. A girls last hope to beat Leukemia. It was actually ALL but there is also something going on about other types of Leukemia. From what I read there is a lot of progress that may in the very near future make Leukemia a thing of the past. http://www.nytimes.com/2012/12/10/health/a-breakthrough-against-leukemia-using-altered-t-cells.html?_r=0 18's Marty -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Acid Reflux
I cannot remember NOT having acid reflux. My Dr. prescribed Pantoprazole and one pill a day takes care of the acid reflux. In all fairness, I cannot attribute it to Gleevec. Stress plays an important role, as well as food choices Æ in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Marcie Goodman To: cmlhope@googlegroups.com Sent: Tuesday, November 6, 2012 2:41:28 PM Subject: [CMLHope] Acid Reflux Has anyone on Gleevec experienced acid reflux as a side effect? I've been on Gleevec over 3 1/2 years but this new phenomenon started in the last two weeks and I don't know what else to attribute it to. If anyone has this, can you share what, if anything, you take. Also, does it go away like some of the other side effects or worsen. Thanks, friends, for always sharing your experiences and wisdom. MARCIE Sent from my iPad -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] update on how many years we have been fighting CML
I started the Gleevec study in January 2001, was in cytogenic remission on July 5, 2001, and continue to be so 11 years later. Thanks be to God. I have taken only Gleevec. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "dstuede...@aol.com" To: cmlhope@googlegroups.com Sent: Thursday, November 1, 2012 12:46:45 PM Subject: Re: [CMLHope] update on how many years we have been fighting CML I was on the trial starting Jan. 2nd. 2000. Been on gleevec from the beginning. Jim S. In a message dated 11/1/2012 7:40:43 A.M. Mountain Daylight Time, icandoall...@aol.com writes: Yahooo Jan will be my 9th year of my fight against CML. >5 Years on Gleevec >Few Months On Tasigna >Almost 4 Years On Sprycel >Miracles do happen. >Jeanie<3 >Would like to hear from everyone on their years on certain CML Drugs? > >In a message dated 10/27/2012 5:46:44 P.M. Eastern Daylight Time, >rszim0...@aol.com writes: >5 1/2 years free of gleevec and still in cellular remission, I AM A MIRACLE. >To God be the glory. >> >> >> >> >>Susan F. Zimmerman >>"Look among the nations and watch; be utterly astounded! For I will work a >>work in your days which you would not believe, though it were told you." >>Hab. 1:5 >> >> >>-Original Message- >>From: Marty Gartenberg >>To: cmlhope >>Sent: Sat, Oct 27, 2012 5:20 pm >>Subject: Re: [CMLHope] Why are my posts not coming through? >> >> >>Dear Susan, >> >>If you should ever need this new drug then at least you know about it. However, I hope that you can just continue to be off all drugs and do well. >> >>Susan, you are a miracle! >> >>18's >> >>Marty >> >> >>On Sat, Oct 27, 2012 at 4:35 PM, Susan Zimmerman wrote: >> >>Thank you Marty for the article on both new drugs. My oncologist told me >>bosutinib was for something else altogether and he certainly never heard of >>the newest one either. Makes me think I need to change docs. He's never >>used anything except gleevec and sprycel. I'm the one still off all meds, >>and when or if I need it I choose tasigna or one of the two new onesdue >>to unusual bleeding. We'll see! Think I'll call for my doc's e-mail on >>Monday and send your article to him. Thanks again. >>>18's to you, >>> >>> >>> >>>Susan F. Zimmerman >>>"Look among the nations and watch; be utterly astounded! For I will work a >>>work in your days which you would not believe, though it were told you." >>>Hab. 1:5 >>> >>> >>>-Original Message- >>>From: Marty Gartenberg >>>To: cmlhope >>>Sent: Sat, Oct 27, 2012 2:54 pm >>>Subject: Re: [CMLHope] Why are my posts not coming through? >>> >>> >>>Hi Millie, >>> >>>As you can see your post to me did come through. Thank you for your reply. >>> >>>I would like to answer your questions and comments so I will write in between your lines in CAPS. >>> >>> >>>On Sat, Oct 27, 2012 at 12:13 PM, C.M. Houtz wrote: >>> >>> Hi Marty.Please let me know if this post gets through to you. I received your message about the new drug that's out, and was going to write last night and thank you for sending out the information, but got tired, shut down, and went to bed. I've been in a lot of pain lately, and laying down seems to help. >>> >>>YES I KNOW ABOUT ALL OF THE PAIN YOUR HAVING, AND I AM REALLY SORRY TO HEAR THAT. I PRAY THAT IT WILL EASE UP ON YOU. I ALSO HAVE SOME TERRIBLE PAIN IN MY BACK AND JUST LIKE YOU I HAVE TO LAY DOWN IN BED TO EASE IT. I SOMETIMES USE A HEATING PAD AND IT WORKS BUT ONLY TEMPORARILY. I EVEN WENT TO A MASSAGE THERIPIST AND THAT SEEMED TO HELP BUT JUST TEMPORARILY AS WELL. I TRY NOT TO TAKE ANY PAIN MEDICATION BECAUSE OF MY KIDNEY FAILURE AND IT WOULD INTERFERE WITH MY DIALYSIS TREATMENTS >>> >>> I was using a pain patch (Lidocaine) and stopped as when I took it off a >>>couple of weeks ago, there was blood on the patch. My cardiologist said >>>that it was probably because of my thinning skin. >>> >>>MILLIE, WHY DON'T YOU TRY SOMETHING CALLED BAG BALM ON THE SKIN THAT IS BLEEDING. JUST DON'T PUT ANYTHING ON IT UNTIL IT STARTS TO HEAL. BAG BALM IS VERY GREASY SO NOTHING WILL BE ABLE TO STICK TO IT. IT'S ORIGINAL USE WAS FOR COWS UTTERS ESPECIALLY IN THE WINTER WHEN THEY ARE CHAPPED BUT IT REALLY WORKS WELL FOR ANY SKIN PROBLEMS. IT COMES IN TWO SIZES. MAKE SURE TO BUY THE SMALL SIZE BECAUSE IT WILL LAST FOREVER. JUST A DAB WILL DO YOU AS THEY SAY. IT COMES IN A GREEN SQUARE CAN AND CAN PROBABLY BE PURCHASED AT SOME OF THE LARGE DRUG CHAINS LIKE CVS OR WALGREENS. >>> >>> I didn't use them all of the time, but maybe once or twice a week. I >>>may try it again when it is all healed. Don't know yet! At any rate, >>>trying to
Re: [CMLHope] Xml
I was diagnosed on Dec. 11, 2000also 2 wks before Christmas!! Some dates just stick in your mind, huh? I started on 400mg of Gleevec daily.. reached complete cytogenic remission after 6 mo. Reduced to 300 mg daily and have been doing well for the past almost 12 years. (After 6 yr I developed lupus; however, they are sure it is unrelated to the Gleevec.) It has always been my belief that if you are not happy, then your meds are not going to be able to work as well for you. I see my onc. twice a year, still take Gleevec, and try not to let CML be my identity. Thank God, I have been very VERY lucky (never had interferon) and can live my life as I wish, traveling a lot and volunteering. When diagnosed, I started a scrapbook of things I wanted to do before I cashed in my earthly chips. I haven't been to Vanuatu yet, but last year traveled the great Silk Road of Marco Polo across central Asia. I have flown over Mount Everest and sailed around Cape Horn. Yes, I am very grateful for my health, and value every day. Dwelling on the negative implications of my health would be the most harmful thing I could do. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Skip To: cmlhope@googlegroups.com Sent: Wednesday, August 29, 2012 11:35:36 AM Subject: [CMLHope] Xml Richard and Marty, and the group Marty, I did not know about your Christmas gift I also was two weeks before Christmas,except 1977, Richard my survival had nothing to do with me I just went along for the ride I would to take some credit but I cannot. If I had any part in it, it was after I settled down, I remembered this story a priest said church, a man riding a donkey a very narrow trail in the mountains fell off and over the ledge, he managed to grab a branch, there he hung and then he heard footsteps along the path, he yelled at the top of his voice HELP ME Nothing happened the footsteps faded ,then he heard a donkey on the trail,once again.,he cried out PLEASE HELP me Nothing After a long time he was very tired and could not hold on much more He cried out in a loud voice PLEASE GOD HELP ---A voice came from on high DO REALLY MY HELP THEN LET GO That is what I did Just what I needed to I relaxed and from what my doc says about under street you need more but if can reduce the stress your body can use the meds better requiring less Please excuse errors in spelling and punctuation wife bought new tablet it seems to want to put in words for me Skips diag 1977 -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] 15th CML Anniversary Today
Huge congratulations to you, and many happy returns of the day! How precious Life is! (I just had 11 yrs in remission in July) What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Virginia Garner To: cmlhope@googlegroups.com Sent: Monday, August 6, 2012 2:32:00 PM Subject: [CMLHope] 15th CML Anniversary Today Today I am celebrating the 15th anniversary of my diagnosis of chronic myelogenous leukemia. Not bad for someone who was told she had 3 years to live. So blessed to wake up every morning and have my life - and a chance to help others. So grateful to all those who have enabled me to be here - my best friend and husband Van Garner, Dr. Brian Druker and his magic cancer bullet, Gleevec, the Leukemia & Lymphoma Society and their grants to Dr. Druker, my friends and family, and my San Gabriel Valley Team In Training team of awesome cancer fighters. I will celebrate by having a hot fudge sundae! Yeah! -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] are there creative authors in this group?
Your story sure has made the roundsI have read it many many times. They say the author is unknown. http://academictips.org/blogs/moral-tale-hospital-window/ What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Martin Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, May 17, 2012 8:02:05 AM Subject: Re: [CMLHope] are there creative authors in this group? Hi Rein, Nice to meet you here. I am a survivor and am in the process of writing a book about my life and the things I was able to do to help others. I once wrote a true story about having hope that I entitled "The Window". I would like you to read it. Any time that I end a message I say two numbers 18 both of them together symbolize life 18's to you Rein, Marty The Window This is a true story that took place more than twenty years ago. There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die. One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window. The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park. He would tell about the green grass, and the people who were having a picnic, and the dogs that were running around, as well as the ice cream truck with the man selling ice cream pops to the little children, and the hot dog vender also selling hot dogs with mustard and sour kraut. He would tell the other man that he would be able to see all of this for himself once he was healed. This went on for about two weeks, and one morning the nurse came into the room as she usually did, and presented these two men with their sponge baths. She first went over to the man who was by the window to find that he had passed away in his sleep. She then covered him up and left the room for a couple of minutes. When she returned, there was a doctor with her. This was a fairly new young doctor who would pronounce the man dead, and at that particular time, 8:40 a.m. even though he had obviously passed away some time during the night .The other man across the room with tears running down his cheeks became quite depressed at seeing his roommate wheeled out of the room, declared dead. He thought about how this man would always try to make him happy with him describing all of the nice things he was able to see outside .Later on that day the nurse returned and made up the bed in the room that was now unoccupied. The man in the other bed asked if by any chance he would be able to be put by the window. The nurse was a very kind and compassionate woman besides being a very competent nurse, and she wheeled him over .Although this man was unable to prop himself up to see the outside because he had recently had his Spleen surgically removed, he tried but finding it was just impossible. The next day came, and he again tried and although he was in a great deal of pain he managed to very slowly prop himself up and peer out of that most appealing window. He was absolutely shocked at what he was able to see, or to put it another way, what he was unable to see. There was nothing there but a brick wall! He wondered why that man would always tell him about what a beautiful world it was out there when in fact there was nothing but that brick wall. At about that time the nurse came in with his sponge bath. He immediately without any reservation asked her why the man would always tell him about what was happening outside when in fact he wasn't able to see anything. The nurse then told him that he was correct. The man who had been by that window was in fact not able to see anything because he was blind. The man then realized that the other man was trying to make him feel good, and try to become well once again. And, as it turned out that other man did in fact return to health but not until he was able to receive a Bone Marrow Transplant. There was a donor found, his sister, and although he had to live in a plastic bubble for many months without having a window in it he would also be able to see all of those wonderful things that this world has to offer. In effect the man who passed away prepared the other man so that he would be able to tolerate something that no one could ever imagine happening to anyone. I know all about this story because I was that other man, and without this blind man’s help I would have never been able to really “see” what the other man saw, even though he was totally blind. I gladly wrote this story to be able to make others understan
Re: [CMLHope] Side effects
I don't know if it is a myth or not, but I was told many years ago to make sure I had a breakfast heavy in PROTEIN before taking my Gleevec. It sure seems to work for me! I might feel sick after a breakfast of toast and jam, but never after eggs or grilled cheese or ham on toast. Also, eating some ice cold watermelon seems to help with nausea. I have been on 300 mg of Gleevec for 11 years. Good luck, and I hope you find something that works for you! Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "myvet...@aol.com" To: cmlhope@googlegroups.com Sent: Monday, March 12, 2012 7:38:45 PM Subject: Re: [CMLHope] Side effects Hi Sherri, I will be flying into Chicago to do my blood work and pick up my meds. at Northwestern Hosp. down town on May 2nd. My son and his wife will pick me up at Midway and take me their. My nausea come from no where, I can eat just about anything. Sat. I had a grilled cheese with my pills and about and hour later I got hit with the nausea and anxiety. So I stopped taking my pills Fri., Sat., and Sun. I started back up tonight to see what happens. Man, their are a lot of ups and downs with Gleevec and I've been on it for over 12 years. Will keep in touch. greenie In a message dated 3/12/2012 4:57:44 P.M. Eastern Daylight Time, swanson.sherri...@gmail.com writes: Hey Greenie, >I Have to agree that it depends on what I eat if I get nauseous or not with my Gleevec. I know I can not eat soup and take the Gleevec as that will cause me to throw up for sure. But, if I eat some bread with it I'm okay. For a while I could not eat pizza at all as I was so nauseous that I could not stand it. So, I've given up pizza. And being from Chicago, that was hard. But, it comes and goes. I find that if I eat enough food I'm okay. Hope this helps. Good luck with t he doctor and keep us posted. >Sherri > > >On Mon, Mar 12, 2012 at 11:29 AM, wrote: > > >>Thank everyone for you feed back. dg >> >>In a message dated 3/12/2012 8:02:37 A.M. Eastern Daylight Time, >>icandoall...@aol.com writes: >>Hi I found that eating a big breakfast with my Gleevec kept my nausea down. >>Never eat it with spicy foods etc. Keep the meal you take you Gleevec with >>large and mild. >>>Good luck, >>>Jeanie<3 >>> >>>In a message dated 3/12/2012 7:50:31 A.M. Eastern Daylight Time, >>>myvet...@aol.com writes: >>>Hi Marcie, We moved here for good last November. The answer to your >>>question is yes. If the guy upstairs said's it's O.K. and I hoping he >>>agrees. dg In a message dated 3/11/2012 10:36:11 P.M. Eastern Daylight Time, margoo...@aol.com writes: Hi Greenie: > > >I suffer from nausea on Gleevec only when I don't have enough food in my >stomach. I try to take 600 mg with or following dinner. Had anxiety >attacks when first diagnosed 3 years ago but they have been gone for >awhile. Severe nausea will make anyone anxious. > > >Good luck at the doctor and let us know how it turns out. By the way, my >husband and I may be in Ft Myers in May. Will you still be there? > > >Marcie >Baltimore > >Sent from my iPhone > >On Mar 11, 2012, at 1:09 PM, myvet...@aol.com wrote: > > >Thanks for the your email. dg >> >>In a message dated 3/11/2012 12:54:18 P.M. Eastern Daylight Time, >>nyc...@hotmail.com writes: >> >>>I have been on Gleevec for 10 yrs and once in a while I start feeling >>>Nausea. It comes and goes. >>> >>> >>> >>> >>> From: myvet...@aol.com >>>Date: Sun, 11 Mar 2012 11:56:04 -0400 >>>Subject: [CMLHope] Side effects >>>To: cmlhope@googlegroups.com >>> >>>Hi group, Question, for the last few days I have been getting nausea >>>which leads to and anxiety attacks. I've had this problem before back >>>in 2006 when I was living in Springfield, MO. I was putting a deck on >>>the back of our house and the heat was 98 deg. and heat index was 114. >>>I ended up with a heat exhaustion. Then anxiety along with nausea. >>>The nausea went on for over 2 years and I would complain to my Doctor >>>in Chicago and they would say you have been on Gleevec for over 5 years >>>theirs no way you can have problems with nausea now. >>> >>>Some members of our group sent me emails that the same thing happened >>>to them. One day I woke up and the nausea just stopped and never came >>>back, put I still have the anxiety problem to this day. >>> >>>Well the last few days it has hit me again for no reason. I have and >>>appointment with and Oncologist the 20nd of this month. I think I'm >>>going to take a two week vacation from Gleevec and see if
[CMLHope] Zavie Miller
In August 2007, we arranged to meet Zavie at the National Gallery in Ottawa as we were going to see the Renoir exhibition. The spring in his step and the sweetest of smiles on his face helped us to recognize him immediately. Zavie took us through the art gallery, describing everything with great enthusiasm. We had lunch together, and enjoyed his company very much. He will be missed. We send condolences to all of his family. Sincerely, sadly, Charles and Angie Esders (# 69 on the Zero List) What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Robert W Neill Jr To: cmlhope@googlegroups.com; leuke...@googlegroups.com Sent: Monday, January 9, 2012 8:23:15 PM Subject: [CMLHope] Zavie Miller This was posted a little ago on Facebook. We join in condolences for the family of Zavie Miller who passed away today. Rob CML World With sadness, we join those sending condolences to the family of Zavie Miller, CML patient and advocate from Canada who touched the lives of many people over the years though his friendship and support. Zavie's girls would like to thank all the friends and family who have been by their side throughout every step of his journey. The 74-year-old passed away on Jan. 9, 2012 with his wife, Ida, and daughters Mara and Sandy at his side. Zavie was an a devoted husband, father, brother, uncle, cousin and friend. He touched the lives of countless people through his kindness, photography, calligraphy, involvement with various organizations and his work with Zavie's Zero Club which helped support members of the CML community worldwide. His zany sense of humour, fierce love and respect for life are a legacy that will remain in many hearts forever. Arrangements will be made over the next few days. http://www.facebook.com/photo.php?fbid=198049733624198&set=a.150154748413697.31163.125794767516362&type=1 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: Fwd: [CMLHope] tingling in hands....
I have been on Gleevec for almost 11 years now, and I still get hand muscle cramps...actually, cramps anywhere and everywhere when there is sustained pressure on the muscles..e.g. drying lots of dishes, cutting with scissors, polishing silver, rolling cookie batter, walking a long time, etc and etc. You just have to shake out the muscles and get on with life. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "teepee...@aol.com" To: CMLHope@googlegroups.com Sent: Tuesday, December 6, 2011 3:32:31 PM Subject: Fwd: [CMLHope] tingling in hands From: teepee...@aol.com >To: cmlhope@googlegroups.com >Sent: 12/6/2011 3:30:48 P.M. Eastern Standard Time >Subj: Re: [CMLHope] Re: nosebleeds >I was wondering if anyone has had any problems with pins and needle feeling in >there hands. >I thought i have read in the past about hand cramping with Gleevec is that >true. >This is mostly pins and needle feeling in hands...once or twice hand cramping.. >Could any of you on the list tell me anything you know about this > Thank >You > Teepee-- > [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Re: French health service further investigating Gleevec
Interesting to read your mail. I just returned from a trip to central Asia, and while there had a short bout of "Pasha's Revenge". I took some Cipro...and had extremely sore muscles for a few days. I never had Cipro before. Wasn't sure what caused the severe muscle aches. Hm~ Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Mon, 9/19/11, LearnToBallroomDanceOnline.com wrote: From: LearnToBallroomDanceOnline.com Subject: Re: [CMLHope] Re: French health service further investigating Gleevec To: cmlhope@googlegroups.com Date: Monday, September 19, 2011, 4:51 AM Hey Beth, Just curious, have you taken the antibiotics Cipro, Levaquinn or Avelox? They are prescribed for many things but often for UTI's. I had extreme fatigue and muscle pain from them. Michele On Sun, Sep 18, 2011 at 9:07 PM, wrote: Dear Pat and Marty and all my other fellow CMLers, I am very grateful for the medicines which keep us alive. I am also aware of how often people with CML are given little or wrong information from doctors and even said "experts". I am pleased for you Pat, that you got a third expert - someone who works with CML to guide you in your treatment and decision making. Being properly educated about our meds, the potential risks, side effects and complications that can arise feels so important to me. This sight is so important to so many of us because it is a place where people can share knowledge, resources, as well as tell their stories of both challenge and hope with those who are sharing a similar journey. I am deeply grateful for all of you out there. My question for today is if anyone on sprycel...or potentially gleevec or tasigna as well...has had a rise in their CPK muscle enzymes...I was doing O.K.. enough managing my side effects from Sprycel but then got hit from behind in June with increased swelling..which I know is a known side effectwhile that has been rectified with diuretics etc.the CPK has not gone down..and I have felt truly awful, with a muscle fatigue that makes it hard to walk, let alone go up and down stairs or be able to wok.. One oncologist thinks it' a sprycel side effect that sprang up in month 8 of taking the med. Another oncologist thinks the sprycel made my body more vulnerable to another disease process and is sending me to a rheumatologist. I am an otherwise healthy 49 year old. It would help me immensely to know if anyone out there has had this issue as well as how they treated it and if it resolved or not while still taking the TKI meds. Thanks so very much, Beth in Chicago -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- mich...@learntoballroomdanceonline.com www.LearntoBallroomDanceOnline.com -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] leukemia & heredity
Hi, Ruth and Dorothy! There is no leukemia in our family...Father had 7 brothers, and Mother is 97 yr old and the last survivor of 12 children, so that is a pretty broad spectrum. Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Wed, 8/31/11, Dorothy Emery wrote: From: Dorothy Emery Subject: Re: [CMLHope] leukemia & heredity To: cmlhope@googlegroups.com Date: Wednesday, August 31, 2011, 8:34 PM Hi Ruth, I think there are still a lot of unknowns on whether or not there is some genetic component to risk for blood cancers. I talked with a researcher a few years ago that was looking at families with CLL and there is some connection with that leukemia--CLL itself does have family clusters--but he said he had not seen an association with CLL and CML in the same family. He also said he wasn't studying that so it could be possible. My father had CLL as well and my niece died of ALL. I went to an LLS board meeting this week and we had a woman guest who lost all three of her grown children to AML in a 2 year period. Her children were 36, 32, and 22 and all were diagnosed and died within a 2 year span from 2004 to 2006. It is truly a horrible story. She has not recovered and I wonder if she ever will. She still appears to be in shock. She said no one has come to her to ask for a dna sample so they could study this case--and she seemed angry that no one seemed interested enough in doing this research. I understood her anger and frustration, but I also know that funding for research is limited and most researchers are too busy looking for cures and treatments. There are a limited number of researchers and every topic can't possibly get studied immediately. I'm sure someone will eventually figure out whether or not there is some genetic marker that makes families prone to blood cancers. Hope you are doing well! Best wishes, Dorothy On Aug 30, 2011, at 11:48 PM, marcon wrote: > After I read the replies from Pat Elliott and Suzie Q I > realized I needed to clarify my reason for going to a > geneticist. It wasn't because of the family history of > leukemia, but because of breast cancer history. My sister > had breast cancer. I had the test for BRCA 1 and BRCA 2 , > and the result was negative. As I recall, the geneticist > was interested only in the medical history of my parents and > siblings. Aunts, uncles, and cousins didn't seem to matter. > I think I had this test about 3 yrs. ago. (About 4 years ago > I joined The Sister Study. The study follows the sister of a > sister who had breast cancer. It's a 10-year study, partly > government funded. The study is a questionnaire that asks > for medical history, and health, exercise, and dietary > habits. The questionnaire is updated periodically.) > > Re the interview on Patient Power, I'll be sure to watch it > myself. And I will pass it along to my brother. When 1st > diagnosed he said he didn't want to read anything about > MGUS. Whatever the dr. told him was enough. Now, about 6 > months after dx, he is receptive to new information about > MGUS and myeloma. > > So thank you, Pat, and thank you, Suzie Q, for your help and > understanding. My best to you, > > Ruth Marcon > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Norma Beidleman
Hi, Ruth...I was astounded to hear that Norma had died! I got no CML Hope message about it. Tell me what you know. Norma and I have always kept in touch...I had not heard from her lately. The worst is, I got out my pics from the Spring Fling, and everyone is in the pics except Norma! God knows why!!! Do you have a photo of her? Thanks so much, Ruth, and I trust you are doing well. Hugs, Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Sun, 6/12/11, marcon wrote: From: marcon Subject: [CMLHope] Norma Beidleman To: cmlhope@googlegroups.com, c...@yahoogroups.com Date: Sunday, June 12, 2011, 6:56 PM Dear Group--I was lucky enough to know Norma. She was a warm & friendly person, and she had a good sense of humor. I think Gina said that first. I met Norma on our "Spring Fling" to Treasure Island, FL. I believe Shelley, Lynne, Angie, Dorothy, Dawn & Capt. Bob, and Dane all attended. Hope I didn't forget anyone. It was the first time many of us had met. We were instant friends. We could talk about cml & have immediate understanding, sympathy, and compassion. One evening Dawn invited us(the women) to see a production of Beauty and the Beast. Angie and I went with Dawn. The others, including Norma, said they would go to dinner. When Angie & I got back to the apartment everyone was there. We asked what they did while we were gone. There was silence. Then they burst out laughing--and said they stayed in the apartment and talked about their problems. It was a great moment. At a later date, Dorothy & I met Norma & Gina in Chicago. Another fun and special time. Norma is someone to remember--a loyal and caring friend. Regards, Ruth Marcon -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Dosage Gleevec
I've been on 300 mg a dat for about 8 years now. Angie in Canada -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Prayers For Zavie Miller
Thanks for the good news about Zavie.It is so important for all of us to know how our friend is doing! Æ What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Fri, 6/3/11, Martin Gartenberg wrote: From: Martin Gartenberg Subject: Re: [CMLHope] Prayers For Zavie Miller To: cmlhope@googlegroups.com Date: Friday, June 3, 2011, 1:23 AM Rob, Zavie continues to get better. I just got off the phone with Ida and she told me that Zavie was able to get to his feet today and walk a little with help. He is now also able to feed himself, and his weakness on his left side has improved a bit. He is still cracking jokes (something that I taught him a very long time ago) and generally feeling a bit better. You know that with everyone praying for him and with their wonderful support he knows it, and that I believe is really helping him. Ida also told me that he is in a wonderful place with wonderful people all helping him. Take care, and may GOD bless Zavie and everyone that he cares about. Marty Gartenberg On Wed, Jun 1, 2011 at 12:04 AM, Rob wrote: Marty, That sounds encouraging. I hope Zavie will continue to make progress. Rob On Tue, May 31, 2011 at 10:16 PM, Martin Gartenberg wrote: Hi Rob and the rest of the group, I have known Zavie for many years and speak, Skype or email to either him or his wife Ida several times a week. I am actually number one on his zero list. I did speak with Ida this morning and she told me that Zavie is talking and understanding everything but has some weakness on his left side which is understandable for what he went through. He is not paralized and is still in a lot of pain from his legs but that will be dealt with later on. The main thing is that Zavie is a very strong fighter and he is still here with us. Yes Rob, it is always one breath at a time, and celabrating small victories. We all have. When I hear anything new I will post them. Marty Gartenberg On Sun, May 29, 2011 at 12:10 PM, Rob wrote: I wanted to pass along from Facebook that Zavie Miller who has been a longtime member of this group had a stroke and had emergency brain surgery and is in Intensive Care. Zavie and his family need your prayers and thoughts at this time. Sandy Miller For those who do not yet know, Zavie had a stroke as a result of a blood clot to the base of his brain. He had surgery to remove the clot and now he is in the ICU in Ottawa recovering from the surgery and the stroke. We have no idea of what the future may hold but for now we are celebrating small victories and are thankful for the love and support shown by family and friends. One breath at a time. Rob http://cmlhope.com http://www.facebook.com/pages/CMLHopeCom/294037421385 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Prayers For Zavie Miller
A few years ago when we visited Ottawa to see the Renoir exhibit at the National Gallery, we arranged to meet Zavie, who also worked as a volunteer at the gallery. What a gem of a man! He took us through the gallery and just shone with love for the art he showed us. We had lunch together, and took photos of one another, and my husband and I agreed that the visit would have been only half as enjoyable without Zavie's bright and cheerful company. Prayers go out to Zavie. He is a remarkable man, and we are deeply saddened to hear of his stroke. Best wishes for his recovery! Angie and Charles Esders What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Sun, 5/29/11, Rob wrote: From: Rob Subject: [CMLHope] Prayers For Zavie Miller To: cmlhope@googlegroups.com Date: Sunday, May 29, 2011, 4:10 PM I wanted to pass along from Facebook that Zavie Miller who has been a longtime member of this group had a stroke and had emergency brain surgery and is in Intensive Care. Zavie and his family need your prayers and thoughts at this time. Sandy Miller For those who do not yet know, Zavie had a stroke as a result of a blood clot to the base of his brain. He had surgery to remove the clot and now he is in the ICU in Ottawa recovering from the surgery and the stroke. We have no idea of what the future may hold but for now we are celebrating small victories and are thankful for the love and support shown by family and friends. One breath at a time. Rob http://cmlhope.com http://www.facebook.com/pages/CMLHopeCom/294037421385 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] FW: My Bone Marrow Cancer drug.
DONE! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Tue, 5/10/11, Zavie Miller wrote: From: Zavie Miller Subject: [CMLHope] FW: My Bone Marrow Cancer drug. To: c...@yahoogroups.com, CMLHope@googlegroups.com Date: Tuesday, May 10, 2011, 10:46 PM Dear Friend/Relative/Zero Club Member/etc, Signing this petition is very important. My CML friends in the UK are being denied treatment that is standard everywhere else. The government’s argument is that the additional dosage is too expensive. I would argue that the regular dosage is too expensive and if they came up with the money for the initial dose that they have the obligation to continue treating the patient if the dose has to be increased. Please take the time to sign this petition. Zavie Miller CML ZERO CLUB Number 102 Sorry to intrude, but I'd like a favour Below is a email I've just sent to my MP (Jim Dowd). Please would you also sign the petition to keep my cancer drug? http://www.gopetition.com/petitions/nice-i-don-t-think-so.html With Love Alan My Bone Marrow Cancer. Dear Jim, I need your help to reverse a decision that could affect my life and the lives of all CML patients now and in the future. NICE has issued an Appraisal Consultation Document reviewing the use of Dasatinib, Nilotinib and high dose Imatinib for Imatinib resistant CML. In this document it states that Dasatinib, Nilotinib and high dose Imatinib are not recommended for the treatment of CML that is resistant to standard dose Imatinib. People who are currently receiving Dasatinib, Nilotinib and high dose Imatinib may however continue. This information has appeared on the NICE website on Friday 6th May, and is open to comment from all stakeholders, including patients, their carers and friends. Link to NICE Document: http://www.nice.org.uk/newsroom/pressreleases/DasatinibImatinibAndNilotinibForCML.jsp I wrote to you in November 2009, regarding NICE's proposal to reject my cancer drug. You passed my email on to the then Heath Minister. The decision was postponed due to the election. I thought that Cameron's words about the NHS cancer treatments meant my treatment was safe. NICE's Appraisal Consultation Document states that my drug is not recommended for the treatment of CML, and this could even result in withdrawal of my current treatment. I am on a drug called Dasatinib 100mg a day. It is expensive. The drug that I would be placed back on is the one my body rejected. I suffered nasty side effects and my cancer-count kept doubling logarithmically, very frightening. Dasatinib has reduced my bone marrow cancer from 100% mutated white-blood cells to 0.084%. Achieving and keeping my cancer in Cryogenic remission. White blood cells only live in my body for hours; that is why it is important that I take the drug at the same time every day. It is vital that our case (CML sufferers) is heard. We only have a very small window 6th May 2011 to 27th May 2011 CML (Bone marrow Cancer) is a rare cancer but there are still 550 new patients a year. Please would you personally sign the petition on the website and urge others too: http://www.gopetition.com/petitions/nice-i-don-t-think-so.html Regards Alan Quarterman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Gleevec trial 106
I received this news today from the Juravinski Centre, Hamilton, Ont. Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Fri, 4/29/11, Cindy wrote: From: Cindy Subject: [CMLHope] Gleevec trial 106 To: "CMLHope@googlegroups.com" Date: Friday, April 29, 2011, 12:22 AM Anyone have info on this trial closing? I was told it was, but nobody else has been told it is clising, so I hope it is a mistake. Cyn Sent from my iPhone -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Gleevec 106 trial - ending?
It has now been confirmed for me that the study ends Jan. 2012, as promised. Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Thu, 4/28/11, dstuede...@aol.com wrote: From: dstuede...@aol.com Subject: Re: [CMLHope] Gleevec 106 trial - ending? To: cmlhope@googlegroups.com Date: Thursday, April 28, 2011, 3:54 PM This is Jim in Iowa. I,ve been on gleevec since 2000 , but thought trail ended in 2005. I,m still on studies. In a message dated 4/28/2011 7:59:54 A.M. Central Daylight Time, thea7...@aol.com writes: Hello group, Has anyone heard that the gleevec 106 trial is ending? My CT nurse said she just found out it was. I've been in it since 2000. Anyone else? Anyone know who to contact to find out? Cyn Sent from my iPhone -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Gleevec 106 trial - ending?
I am quite sure i was told that the trial would end after 12 years. Has anyone heard differently? Concerned guinea-pig in Canada, Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Thu, 4/28/11, dstuede...@aol.com wrote: From: dstuede...@aol.com Subject: Re: [CMLHope] Gleevec 106 trial - ending? To: cmlhope@googlegroups.com Date: Thursday, April 28, 2011, 3:54 PM This is Jim in Iowa. I,ve been on gleevec since 2000 , but thought trail ended in 2005. I,m still on studies. In a message dated 4/28/2011 7:59:54 A.M. Central Daylight Time, thea7...@aol.com writes: Hello group, Has anyone heard that the gleevec 106 trial is ending? My CT nurse said she just found out it was. I've been in it since 2000. Anyone else? Anyone know who to contact to find out? Cyn Sent from my iPhone -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Druker in Smithsonian Magazine
Thanks, Ruth! Angie-in-Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Tue, 4/26/11, marcon wrote: From: marcon Subject: [CMLHope] Druker in Smithsonian Magazine To: cmlhope@googlegroups.com Date: Tuesday, April 26, 2011, 1:25 PM The May 2011 issue of Smithsonian Magazine features Dr. Druker & the cml research. Named in the article are cmlers Susan McNamara, Jerry Mayfield, and Jane Graham. The magazine Web site is smithsonian.com It's a great article. Hope you get to see it. Ruth Marcon -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Kidney function
I always have a high creatinine level which is compatible with the fact that I gave my brother one of my kidneys in 1979. For this reason I was never considered for a BMT. Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Wed, 3/16/11, Victoria Reiter wrote: From: Victoria Reiter Subject: [CMLHope] Kidney function To: CMLHope@googlegroups.com Date: Wednesday, March 16, 2011, 1:37 PM Has anyone found that their creatnine levels have risen while taking Gleevec? I know this occurs when one's blood pressure goes up for any length of time but I'm talking about having normal blood pressure yet creatinine levels rising. VReiter -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope