[CMLHope] How are you!

[ANGELYN ESDERS]

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

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Re: [CMLHope] Fun thing to do

[ANGELYN ESDERS]

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 

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Re: [CMLHope] 39 years with cml

[ANGELYN ESDERS]

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
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Re: [CMLHope] Marty

[ANGELYN ESDERS]

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 <wa2...@gmail.com>
 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 <esd...@rogers.com> wrote:

How are you doing, Marty? Feeling  better?Ready to jitterbug yet?-- 
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[CMLHope] Marty

[ANGELYN ESDERS]

How are you doing, Marty? Feeling  better?Ready to jitterbug yet?

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic

[ANGELYN ESDERS]

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 <cmlhope@googlegroups.com>
 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 <kneesrb...@gmail.com> 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 <ksnwo...@prodigy.net> 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" 
<cmlhope@googlegroups.com> wrote:


 
| cmlhope@googlegroups.com  | Google Groups  |   |

  Topic digest 
View all topics  
   - Angie, your card - 2 Updates 
 Angie, your card  
| ANGELYN ESDERS <esd...@rogers.com>: 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 <wa2...@gmail.com>
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-- 
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| Marty Gartenberg <wa2...@gmail.com>: 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
 
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[CMLHope] Zavie's List

[ANGELYN ESDERS]

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
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 

Re: [CMLHope] Angie, your card

[ANGELYN ESDERS]

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-- 
-- 
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Re: [CMLHope] All zero club members

[ANGELYN ESDERS]

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 

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Re: [CMLHope] Re: About Marty

[ANGELYN ESDERS]

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!

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Re: [CMLHope] Marty number

[ANGELYN ESDERS]

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 

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Re: [CMLHope] How is everyone

[ANGELYN ESDERS]

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 

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Re: [CMLHope] Anyone out there. Testing

[ANGELYN ESDERS]

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

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[CMLHope] ...and to all the Canadians........

[ANGELYN ESDERS]

 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 |
|  |
|   |


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Re: [CMLHope] Cancer Update from Johns Hopkins

[ANGELYN ESDERS]

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 

Re: [CMLHope] To Susan Zimmerman

[ANGELYN ESDERS]

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 <cmlhope@googlegroups.com>
 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 <esd...@rogers.com> 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 <cmlhope@googlegroups.com>
 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 
<cmlhope@googlegroups.com> 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 
<cmlhope@googlegroups.com> 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

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Re: [CMLHope] To Susan Zimmerman

[ANGELYN ESDERS]

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

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[CMLHope] Gleevec to give away

[ANGELYN ESDERS]

 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)

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Re: [CMLHope] Does anyone remember Zavie and Ida Miller or Lottie?

[ANGELYN ESDERS]

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
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Re: [CMLHope] Re: Hey, what happened to everyone?

[ANGELYN ESDERS]

Thanks, Marty. I am monitored by  various doctors. No one ever mentioned 
Purines to me. No, no gout, thank goodness.Angie

  From: Marty Gartenberg <wa2...@gmail.com>
 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 <esd...@rogers.com> 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 <swanson.sherri...@gmail.com>
 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 
calle

Re: [CMLHope] Hey, what happened to everyone?

[ANGELYN ESDERS]

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-- 
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Re: [CMLHope] Re: stroke

[ANGELYN ESDERS]

 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-- 
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Re: [CMLHope] Re: stroke

[ANGELYN ESDERS]

 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
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Re: [CMLHope] Fwd: Fw: Fwd: Fw: THE MORNING AFTER THE ZOO'S CHRISTMAS PARTY.......

[ANGELYN ESDERS]

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 
    
   
|
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 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  
      
   
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 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  
   
   
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 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!                     |

              |
|  
|  |  |

 |

    



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Re: [CMLHope] Fwd: Fw: Fwd: Bet You Did Not Know this

[ANGELYN ESDERS]

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.       
   








=





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Re: [CMLHope] Three months

[ANGELYN ESDERS]

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 <cmlhope@googlegroups.com>
 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 <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
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 <esd...@rogers.com> 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-- 
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[CMLHope] Three months

[ANGELYN ESDERS]

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

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Re: [CMLHope] Three months

[ANGELYN ESDERS]

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. <paricha...@gmail.com>
 To: Mitri Nademahakul <mit...@gmail.com>; 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 <esd...@rogers.com> 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-- 
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Re: [CMLHope] Three months

[ANGELYN ESDERS]

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 <cmlhope@googlegroups.com>
 To: "cmlhope@googlegroups.com" <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 <esd...@rogers.com> 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-- 
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Re: [CMLHope] happy Holidays!!

[ANGELYN ESDERS]

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 -- 
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Re: [CMLHope] Stopping Gleevec and BMB X4 !

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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 esd...@rogers.com 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-- 
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Re: [CMLHope] Cml and Shingles vaccine

[ANGELYN ESDERS]

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 poongotha...@hotmail.com
 To: cmlhope@googlegroups.com cmlhope@googlegroups.com 
 Sent: Friday, June 12, 2015 1:59 AM
 Subject: [CMLHope] Cml and Shingles vaccine
   
!--#yiv6604837613 .yiv6604837613hmmessage 
P{margin:0px;padding:0px;}#yiv6604837613 
body.yiv6604837613hmmessage{font-size:12pt;font-family:Calibri;}--


Hi  friends! Just want to know we cml warriors can take Shingles vaccine?

Kothai
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Re: [CMLHope] Where is everyone?

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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
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Re: [CMLHope] Where is everyone?

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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 esd...@rogers.com 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 wa2...@gmail.com
 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
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Re: [CMLHope] Where is everyone?

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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 esd...@rogers.com 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 wa2...@gmail.com
 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 esd...@rogers.com wrote:

I'm still sitting here anemic and with no platelets. They don't know WHAT to do 
with me. :(Angie in Canada
  
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Re: [CMLHope] Picture of Marty and Shelly

[ANGELYN ESDERS]

Lovely to meet you bothAngie
   From: Marty Gartenberg wa2...@gmail.com
 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-- 
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Re: [CMLHope] Platelets

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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 esd...@rogers.com 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 wa2...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 To: cmlhope@googlegroups.com 
 Sent: Sunday, May 17, 2015 7:08 AM
 Subject: Re: [CMLHope] Platelets
   
I have problems with platelet count. Diagnosed

Re: [CMLHope] Platelets

[ANGELYN ESDERS]

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 wa2...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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
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Re: [CMLHope] Platelets

[ANGELYN ESDERS]

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 cmlhope@googlegroups.com
 To: cmlhope@googlegroups.com 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 graga...@gmail.com 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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
-
 
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Re: [CMLHope] Today's

[ANGELYN ESDERS]

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 cmlhope@googlegroups.com
 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 rbhuffm...@gmail.com
To: cmlhope cmlhope@googlegroups.com
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 
cml...@googlegroups.com 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 

Re: [CMLHope] Platelets

[ANGELYN ESDERS]

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 graga...@gmail.com
 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 esd...@rogers.com 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 graga...@gmail.com
 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 esd...@rogers.com 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
-
 
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You received

Re: [CMLHope] Re: Platelets

[ANGELYN ESDERS]

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 jl...@rogers.com
 To: cmlhope@googlegroups.com 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 rbhuffm...@gmail.com 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.
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Re: [CMLHope] Platelets

[ANGELYN ESDERS]

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 graga...@gmail.com
 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 esd...@rogers.com 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-- 
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Re: [CMLHope] Re: U[PDATE FOR MARTY

[ANGELYN ESDERS]

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 cmlhope@googlegroups.com
 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 rbhuffm...@gmail.com 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   
   
     


 

















 
   , 




  

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Re: [CMLHope] Kidney Transplant

[ANGELYN ESDERS]

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 cmlhope@googlegroups.com
 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 
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Re: [CMLHope] Facing misfortune....

[ANGELYN ESDERS]

A Fantastic message from your friendHave a great day, Marty!A.
   From: Marty Gartenberg wa2...@gmail.com
 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 esd...@rogers.com 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.-- 
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[CMLHope] Facing misfortune....

[ANGELYN ESDERS]

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.

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Re: [CMLHope] May 21st

[ANGELYN ESDERS]

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 wa2...@gmail.com
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

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Re: [CMLHope] NY Times OHSU ad

[ANGELYN ESDERS]

 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 mar...@enter.net
To: cml2 cml2 c...@yahoogroups.com; CML HOPE HOPE cmlhope@googlegroups.com 
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

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[CMLHope] Happy Passover!

[ANGELYN ESDERS]

 

 



 This comes to me from a friend in Jerusalem...







Happy Passover plus Vivaldi.
 

לכל ידידי באשר אתם בארץ או בחול איחוליי לחג שמח וכשר מהנה ובריא 

חג פסחשמח!!!
 
http://www.youtube.com/watch?feature=player_embedded    

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[CMLHope] Re: Gleevec and antacids

[ANGELYN ESDERS]

 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


  

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Re: [CMLHope] Aniversary 13

[ANGELYN ESDERS]

 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 wa2...@gmail.com
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 drodegh...@sbcglobal.net 
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 richard1huff...@comcast.net
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.   
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Re: [CMLHope] In memory of Ida and Zavie Miller

[ANGELYN ESDERS]

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 wa2...@gmail.com
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

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Re: [CMLHope] Re: Posting for the first time in years

[ANGELYN ESDERS]

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 pksch...@gmail.com
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 
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Re: [CMLHope] colonoscopy?

[ANGELYN ESDERS]

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 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, 
Jeanie3 

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, myvet...@aol.com 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: 
 

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[CMLHope] Re: Does any one use Apple Cider Vinegar?

[ANGELYN ESDERS]

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



 

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Re: [CMLHope] Re: Hi..Susan's Life

[ANGELYN ESDERS]

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 rszim0...@aol.com
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 wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
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 ho...@ptd.net 

[CMLHope] A good story....

[ANGELYN ESDERS]

 http://play.simpletruths.com/movie/the-empty-pickle-jar/store/  

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Re: [CMLHope] Photos

[ANGELYN ESDERS]

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 rszim0...@aol.com
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 pfemail...@gmail.com
To: cmlhope cmlhope@googlegroups.com
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 esd...@rogers.com
To: cmlhope cmlhope@googlegroups.com
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 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

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Re: [CMLHope] a picture for you

[ANGELYN ESDERS]

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 ho...@ptd.net
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/
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Re: [CMLHope] Photos

[ANGELYN ESDERS]

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 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

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Re: [CMLHope] a picture for you

[ANGELYN ESDERS]

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 ho...@ptd.net
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/
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Re: [CMLHope] Taking a break from gleevec after over 12 years

[ANGELYN ESDERS]

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

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Re: [CMLHope] Re: Taking a break from gleevec after over 12 years

[ANGELYN ESDERS]

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 richard1huff...@comcast.net
To: cmlhope@googlegroups.com 
Cc: CMLHope@googlegroups.com 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 


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[CMLHope] Cramping...

[ANGELYN ESDERS]

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 icandoall...@aol.com
To: cmlhope cmlhope@googlegroups.com
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?
Jeanie3
 
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 peg@live.com wrote:


From: peg peg@live.com
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 it.  We 

Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon

[ANGELYN ESDERS]

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 wa2...@gmail.com
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 ho...@ptd.net 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
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Re: [CMLHope] skin problems on tasigna

[ANGELYN ESDERS]

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 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 danieleadk...@gmail.comwrote: 

From: daniel danieleadk...@gmail.com
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 
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Re: [CMLHope] A girls last hope to beat Leukemia

[ANGELYN ESDERS]

Thanks, Marty.

What lies behind us and what lies before us are tiny matters compared to what 
lies within us
Angie
 


 From: Marty Gartenberg wa2...@gmail.com
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 esd...@rogers.com 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 wa2...@gmail.com
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
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Re: [CMLHope] A girls last hope to beat Leukemia

[ANGELYN ESDERS]

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 wa2...@gmail.com
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

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Re: [CMLHope] Acid Reflux

[ANGELYN ESDERS]

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 margoo...@aol.com
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

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Re: [CMLHope] update on how many years we have been fighting CML

[ANGELYN ESDERS]

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 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. 
Jeanie3 
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 wa2...@gmail.com
To: 
cmlhope cmlhope@googlegroups.com
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 rszim0...@aol.com 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 wa2...@gmail.com
To: cmlhope 
  cmlhope@googlegroups.com
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 ho...@ptd.net 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 control the pain is difficult and I don't like to  take a lot of 
the Vicoden, so limit myself to 

Re: [CMLHope] Xml

[ANGELYN ESDERS]

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 skipd_2...@yahoo.com
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



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Re: [CMLHope] 15th CML Anniversary Today

[ANGELYN ESDERS]

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 vgar...@doglover.com
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/
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Re: [CMLHope] are there creative authors in this group?

[ANGELYN ESDERS]

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 wa2...@gmail.com
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 

Re: [CMLHope] Side effects

[ANGELYN ESDERS]

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 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, myvet...@aol.com 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,
Jeanie3
 
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 things 
improve.
 
If anyone else has had this problem before  please let me know.
 
Thanks,
 
greenie 

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A support group of http://cmlhope.com
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  received this message because you are subscribed to the Google 
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To post to this 

[CMLHope] Zavie Miller

[ANGELYN ESDERS]

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 r...@rwneill.com
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=198049733624198set=a.150154748413697.31163.125794767516362type=1
 
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Re: Fwd: [CMLHope] tingling in hands....

[ANGELYN ESDERS]

 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 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]
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Re: [CMLHope] Re: French health service further investigating Gleevec

[ANGELYN ESDERS]

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 ballroom...@gmail.com 
wrote:


From: LearnToBallroomDanceOnline.com ballroom...@gmail.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, bkbar...@aol.com 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
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mich...@learntoballroomdanceonline.com
www.LearntoBallroomDanceOnline.com

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Re: [CMLHope] leukemia heredity

[ANGELYN ESDERS]

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 doem...@charter.net wrote:


From: Dorothy Emery doem...@charter.net
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 
 
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Re: [CMLHope] Norma Beidleman

[ANGELYN ESDERS]

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 mar...@enter.net wrote:


From: marcon mar...@enter.net
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

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Re: [CMLHope] Dosage Gleevec

[ANGELYN ESDERS]

I've been on 300 mg a dat for about 8 years now.
Angie in Canada

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Re: [CMLHope] Prayers For Zavie Miller

[ANGELYN ESDERS]

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 wa2...@gmail.com wrote:


From: Martin Gartenberg wa2...@gmail.com
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 r...@rwneill.com 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 wa2...@gmail.com 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 r...@rwneill.com 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


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Re: [CMLHope] Prayers For Zavie Miller

[ANGELYN ESDERS]

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 r...@rwneill.com wrote:


From: Rob r...@rwneill.com
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


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Re: [CMLHope] FW: My Bone Marrow Cancer drug.

[ANGELYN ESDERS]

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 zmil...@sympatico.ca wrote:


From: Zavie Miller zmil...@sympatico.ca
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

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Re: [CMLHope] Gleevec 106 trial - ending?

[ANGELYN ESDERS]

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 dstuede...@aol.com wrote:


From: dstuede...@aol.com 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

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Re: [CMLHope] Gleevec 106 trial - ending?

[ANGELYN ESDERS]

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 dstuede...@aol.com wrote:


From: dstuede...@aol.com 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

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Re: [CMLHope] Gleevec trial 106

[ANGELYN ESDERS]

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 thea7...@aol.com wrote:


From: Cindy thea7...@aol.com
Subject: [CMLHope] Gleevec trial 106
To: CMLHope@googlegroups.com 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

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Re: [CMLHope] Druker in Smithsonian Magazine

[ANGELYN ESDERS]

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 mar...@enter.net wrote:


From: marcon mar...@enter.net
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

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Re: [CMLHope] Re: CHILLLLLLS~~~~~

[ANGELYN ESDERS]

Your mention of deep freeze chills really caught my eye.
I had 3 episodes of that before my diagnosis (I was diagnosed with CML in 
2000). I would shake with cold, and my skin HURT as though I was trapped in a 
deep freeze. Neither hot tea, nor blankets could get me warm.
I told my family doctor and he considered my age (52-53) and said it was the 
reverse of hot flashes! Sometimes I would get steaming hot, and sometimes 
freezing cold. I sure wonder where he dreamed up THAT theory from! A few months 
later I was diagnosed with CML. Funny, I have not heard anyone mention those 
deep painful chills before. I haven't had such an episode in 8 years now.
Angie in Canada

What lies behind us and what lies before us are tiny matters compared to what 
lies within us
Angie

--- On Sat, 3/5/11, Suzieq sheila.a.wat...@gmail.com wrote:




Hi Jeanie:

Good to hear from you. Ya, I notice that the symptoms come and go.
Thank the Lord for that.  I remember how that in the beginning, I had
those deep freeze type chills...not any more.  That was probably
during the first six to eight months. 

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[CMLHope] Tenth Anniversary

[ANGELYN ESDERS]

Dec. 11 marked 10 years since the doctor informed me that I had a blood 
disorder I had never even heard of beforeCML.
I have been on Gleevec all these years and doing quite well, having reached 
remission in July of 2001. 
This year, I made a trip alone to the brilliant little country of Nepal, north 
of India. On Dec. 11, to celebrate my wellness and hope, I took a flight over 
the Himalayas on a bright clear morning. The jagged, snowy peaks sparkled in 
the sunlight and Mount Everest was very clear.
The world is a magnificent place!
Here's to ANOTHER 10 years!
Angie in Canada

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Re: [CMLHope] Tenth Anniversary

[ANGELYN ESDERS]

Thanks, Greenie! All the best to YOU! Æ

--- On Sun, 12/26/10, myvet...@aol.com myvet...@aol.com wrote:


From: myvet...@aol.com myvet...@aol.com
Subject: Re: [CMLHope] Tenth Anniversary
To: cmlhope@googlegroups.com
Date: Sunday, December 26, 2010, 12:39 PM



Good for you Angie.  I'll drink to that.  I started Gleevec Feburary 5th, 2000 
and I feel the same way.  Best of everything to do.  
 
Greenie in Fort Myers, FL. 
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Re: [CMLHope] Remission....Finally....

[ANGELYN ESDERS]

CONGRATULATIONS, MILLIE! What  great  news! How will you celebrate?
Angie in Canada



Hi all,
 
Just came back from my Oncologist and the news is that I'm in complete 
remission.  I don't know who was happier, him or me.  It's been a long journey, 
but I finally made it.  I still have to remain on the Tasigna, full dose, 
because he's afraid to lower it at this point.  I will still see him every two 
months for another problem, but that is nothing to worry about.  He found that 
I had Polymyalgia and is treating me for that.  I also lost a few lbs, so that 
was good too.  Right now, I couldn't be happier and needed to let you all 
know.  Thanks for being there for me.Blessings to all of you...Millie
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Re: [CMLHope] Re: Question For The Ladies

[ANGELYN ESDERS]

My hairdresser has been doing my hair for about 12 years. She laughs to see my 
poker straight hair getting curlier every year, and she knows I have not had a 
perm. Same thing: My hair frizzes up in dampness.
I have found the product by John Frieda, Frizz-Ease, to be very effective in 
working with my hair.
Angie-in-Canada

--- On Fri, 9/17/10, Suzieq sheila.a.wat...@gmail.com wrote:


From: Suzieq sheila.a.wat...@gmail.com
Subject: [CMLHope] Re: Question For The Ladies
To: CMLHope cmlhope@googlegroups.com
Date: Friday, September 17, 2010, 2:34 AM


Pat:

I had to smile at this post from you because I am just the opposite
here.  Since being on Gleevec since 2/'04,  I now have naturally curly
hair and friz when it is high humidity or rainy.  I've had people ask
me if I had a perm. LOL!!!   The last time I had a perm was April in
2003 and it caused awful damage to my hair, I decided no more perms
for me.  My hair was always stick straight.  Maybe a little natural
body, but that was it.  Not any more.  It took about a year or two on
Gleevec,  then the curly look happened. LOL!!!   I just wash, put in
some of the friz product to help with that  let it dry naturally.
Pretty much it.  I do have color put on about every six weeks  have
trims,  that's pretty much it.  I think of all the money I spent in
the past on perms to get what I have today. just smile  say
Thanks Gleevec

Suzieq

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Re: [CMLHope] EYE BLEEDS

[ANGELYN ESDERS]

I've been on  300 mg Gleevec since Jan. 2001 and have never yet had an eye 
bleed. 
Knocking on wood
Angie in Canada

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Re: [CMLHope] Emailing: DSC_0174, DSC_0198, DSC_0240, 01 - Tour of Novartis Gleevec Plant - Ringaskiddy, IrelandDSC_0357, 02 - Joe Shrieves and Maeve Devlin - DSC_0284, 03 - Susanne - DSC_0303, 16

[ANGELYN ESDERS]

Hey, Zavie! Thanks for the photos. That was a surprise to see where they were 
made. I wish you had put more captions with the pictures!
Thanks, hon...and hope you are doing welll
Angie

--- On Tue, 8/3/10, Zavie Miller zmil...@sympatico.ca wrote:


From: Zavie Miller zmil...@sympatico.ca
Subject: [CMLHope] Emailing: DSC_0174, DSC_0198, DSC_0240, 01 - Tour of 
Novartis Gleevec Plant - Ringaskiddy, IrelandDSC_0357, 02 - Joe Shrieves and 
Maeve Devlin - DSC_0284, 03 - Susanne - DSC_0303, 16 - DSC_0299, 18 - DSC_0300, 
20 - Zavie DSC_0304, 22 - DSC_0356, 38 - DSC
To: CMLHope@googlegroups.com, c...@yahoogroups.com
Date: Tuesday, August 3, 2010, 11:56 PM




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Re: [CMLHope] Post some photos

[ANGELYN ESDERS]

Ted, Thank you for the wonderful photos!
Angie (CANADA)

--- On Fri, 7/23/10, Ted fanruif...@gmail.com wrote:


From: Ted fanruif...@gmail.com
Subject: [CMLHope] Post some photos
To: cmlhope@googlegroups.com
Date: Friday, July 23, 2010, 3:17 AM


Hi everyone ,this is Ted, 19 years old from China,i was diagnosed with CML 
since Feb ,2010,with the bcr/abl of 0.55.
I started to take Gleevec since Feb 21,2010. 
The effect is awesome , this May I checked the bone marrow again, I have 
reached the CCR, and the bcr/abl is 0.02.


These photos were taken by myself in Chengdu Research Base of Giant Panda 
Breeding
Camera is Canon Pro1,lol 
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Re: [CMLHope] Re: Gleevec and Prednisone

[ANGELYN ESDERS]

I was dx'd with CML in 2000 and went straight into a drug study for Gleevec, 
and never had any other treatment. I reached complete remission in July of 
2001, and have remained there, taking 300 mg per day ever since. I am still 
monitored by the study.
From  2004 I suffered terrible skin lesions and pain as from rheumatoid 
arthritis until I was finally diagnosed in 2006 with lupus (SLE). The 
treatment for lupus is Plaquenil and Prednisone. I have only stopped the 
Prednisone 6 months ago. Prednisone stopped my pain and skin lesions almost 
immediately!
The interesting thing is that in the whole worldwide drug study, I am 
apparently the ONLY patient who developed lupus. I find that hard to 
believe...but this is what they tell me from the documentation.
Hearing of others with skin problems and muscle and joint pain makes me wonder 
if you
are also developing lupus. Has your doctor had you undergo the ANA (antibody) 
test for lupus? It took 2 painful years, with two skin biopsies for that test 
to come back positive. I had every sign of lupus (Even my dentist told me she 
thought I had it!) but it could not be confirmed by the standard ANA test for 
lupus. Look up the symptoms of lupus and see if you have any of them. I cannot 
tell you what pain I suffered in my joints and muscles. My fingers swelled up 
and I could not even cut carrots with a knife because it hurt too much. I could 
not pull up my blankets at night. I had a rheumatoid Factor in the thousands! 
Lupus is called The Disease of a Thousand Faces because it will find 1000 
different ways to make itself felt. Prednisone is like magic for me, but it is 
hard not to gain weight when taking it. I am now without pain and lead a very 
active life. The high rheumatoid factor vanished with Prednisone. Two years ago 
I had a blood disorder
 where all my platelets vanished. Thrombocytopenia. A high dose of prednisone 
fixed that immediately.
I sure HOPE you don't have lupus, but it would be very interesting (from the 
point of view of a drug study) to know if others on Gleevec have developed it 
also.
Please keep in touch...
Angie in Canada

--- On Thu, 4/22/10, ssil...@waldentesting.com ssil...@waldentesting.com 
wrote:


From: ssil...@waldentesting.com ssil...@waldentesting.com
Subject: Re: [CMLHope] Re: Gleevec and Prednisone
To: CMLHope@googlegroups.com
Date: Thursday, April 22, 2010, 9:57 AM


Hello,

Diagnosed with CML in 1989. Ten years of daily high dose interferon with 
enormous side effects put me into complete remission for another ten years. 
Then it came back with a vengeance to accelerated mode. After six months of 
Gleevec (600 mg daily) again in complete molecular remission. Zero bad cells 
with repeated PCR's.

Now the muscle and joint pains are crippling. Will be starting 20 mg daily 
prednisone for short term.

Anyone have experiences with this scenario?
-- franklin wrote : 

Honey, I live on Gleevec and Prednisone The Gleevec made my liver
enzymes sky rocket. After a year they are back to normal. I have been off
the prednisone 2 months, but had to restart a low dose because of a skin
flare up. You will be fine. The prednisone will help the aches you sometimes
get from gleevec. Lynn Franklin
- Original Message -
From: rjpa...@symp...
To: cmlh...@goog...
Sent: Friday, March 18, 2005 11:25 AM
Subject: [CMLHope] Gleevec and Prednisone



 I am 33 and was diagnosed with CML 7.5 years ago and was on Interferon
 until this past September.  It actually worked for me with little side
 effects for most of the time.  In September I began having problems
 with my liver and had to be taken off the interferon.  I'm now on
 Prednisone and will be starting Gleevec today.  Has anyone been on
 Gleevec and Prednisone at the same time?  The steroids have terrible
 side effects so I'm not looking forward to starting a new drug but its
 time.  I haven't been on anything for my CML since September and I'm
 still in remission.

 Also, has anyone had any weight gain on Gleevec other than from water
 retention?



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Re: [CMLHope] Brittle Bones

[ANGELYN ESDERS]

I have been on Gleevec for 9+ years now. I had a stress fracture in my left 
foot in the last year. I could not recall injuring the footit just started 
being painful and an xray revealed the cause of the pain.
I have also been on prednisone because of lupus for the last 4 years. I take 
calcium supplements to counteract the effects of the steroid.
Angie in Canada

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Re: [CMLHope] Nausea and exercise

[ANGELYN ESDERS]

At the beginning, in 2001, I felt nausea each time I took my 400mg of Gleevec. 
I worked around it by getting up early enough to take  half a Bonamine (motion 
sickness pill). After it had time to get working, I would eat a big bowl of 
oatmeal. Then I took the Gleevec. It seemed to me that the Gleevec was kinda 
buried in the oatmeal and didn't bother me so much. I also found that getting 
outside for a litle walk in the fresh air distracted me from the nausea for 
long enough to let it pass.
Some people claim that taking  a serving of protein for breakfast will prevent 
nausea.
Watermelon has always helped me with nausea.
After some months I stopped ever having that problem.
Good luck! 
Angie in Canada

--- On Thu, 11/19/09, Joan lilak...@gmail.com wrote:


From: Joan lilak...@gmail.com
Subject: [CMLHope] Nausea and exercise
To: CMLHope cmlhope@googlegroups.com
Date: Thursday, November 19, 2009, 12:51 PM


I've been having mild nausea whenever I take my Gleevec (400 mg) for a
long time but it wasn't a big problem as long as I avoided citrus,
taking other pills at the same time or moving too fast afterward.
Recently I started taking YOGA in the evenings. Although I wait at
least half an hour and sometimes more afterwards to take my Gleevec, I
have been having trouble with more severe nausea and vomiting.  I've
tried taking the Gleevec at other times but it seems like it
interferes even more with my life. I was diagnosed in 2004 and have
been very close to zero. Unfortunately, my last PCR indicated an
increase. My oncologist wants to up my dose but I talked him into
waiting a few months. Does anyone have any ideas on decreasing my
nausea?

Joan

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Re: [CMLHope] H1N1 flu vaccine

[ANGELYN ESDERS]

I had it a few weeks ago on my oncologist's suggestion.
My arm was a bit sore for a few days. That's ALL.
Angie in Canada

--- On Mon, 11/16/09, Émile Fichault fi...@videotron.ca wrote:


From: Émile Fichault fi...@videotron.ca
Subject: [CMLHope] H1N1 flu vaccine
To: CMLHope@googlegroups.com, c...@yahoogroups.com
Date: Monday, November 16, 2009, 8:40 PM





What do you think about having the H1N1 flu vaccine ? 
Any of you already taken it ?
What about side effects ?
 
Emile
# 527 Zavie's Club
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