Greenie: Glad that only the car got hurt! Our 25 year old daughter just moved back in because she has two broken ankles from SKYDIVING. I think there is something wrong with the picture - mom with CML and dad with heart problems, both working full time, taking care of the non weight bearing adventurer! She's a solo diver and in the next year a group is diving for dollars for LLS.
Stay well and careful driving. MARCIE Sent from my iPad On Nov 9, 2012, at 4:14 PM, myvet...@aol.com wrote: > The bottom line is what works for some folks does not mean it's going to work > for others. I'm only glad that all of you that stopped the meds. things are > working out for you. I stopped Gleevec for 26 days back in 2010 and my blood > work showed that the cells were popping up again. Guess I'll be on it until > I take my ride in my Corvette up into the sky to Corvette heaven. A few > weeks ago I was sitting at a stop light with a truck in front of me with a > BIG TRAILER HITCH BALL ON THE BACK. He takes of then stops dead, of course I > didn't. $6330.00 damage to the front in. Then he takes off. I don't think > he was from this Country that's why he left. I just picked up it up a few > hours ago. Looks o.k. the paint matches. Silver is a hard color to match, I > used to paint Corvettes, I think that's where I got my CML from painting > cars.. > > You all take care, > > greenie > > In a message dated 11/9/2012 10:03:52 A.M. Eastern Standard Time, > rszim0...@aol.com writes: > Along with Richard, I had problems with gleevec. I was diagnosed on February > 14, 2005. Went on gleevec after two weeks of hydroxyrea. Was on gleevec for > 2 1/2 years before having a brain bleed, so on my own decided to refuse all > medication. I had been in complete remission for 2 years at that time. > Never missed a dose of gleevec, took it religiously in spite of all side > affects. My docs did not agree with me going off this, but went along. I > get checked every 3 months for my counts, still in cellular remission. I had > a few bcr/abl tests since coming off the medicine. They showed slowly coming > out of remission. I've had two more brain bleeds since then, and a final > full-blown stroke in March of 2009. Thank goodness I have recovered from the > stroke with minimal damage to my left side. Still weak but moveable. I will > go back on medication if I come out of cellular remission, but am enjoying > every day without it. That is 5 1/2 years without gleevec and counting. > Thank you, God! > > 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: Richard H <richard1huff...@comcast.net> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Thu, Nov 8, 2012 11:17 pm > Subject: [CMLHope] Re: update on how many years we have been fighting CML > > The reason my ONC agreed to let me go without a CML medication is because I > was having problems with Gleevec. When we discussed our options in 2008. He > and I agreed to see how long it would be before my PCR indicated that I > should be on medication. That was 4 years ago and my counts remain at a low > level. I have included my history. > > > Richard H. > dxd 2/2003 > 400mg Gleevec 3/2003 > Undetectable 11/03 > RT-PCR negative 11/04 > QT-PCR .003 11/05 > RBC 8. > Gleevec Vacation 11/06-6/07 > Iron infusion 11/06 > Transfusions 12/06-5/07 > QT-PCR .7 1/08 > Gleevec 1/08 -5/08 > Procrit 8/08-11/08 > Gleevec Vacation 7/08-Pressent > QT-PCR .3 4/09 > QT-PCR .15 6/09 > QT-PCR .21 9/09 > QT-PCR .28 1/10 > QT-PCR .1+ 4/10 > QT-PCR .468 10/10 > QT-PCR .468 2/11 > QT-PCR .323 8/011 > QT-PCR .261 2//2012 > QT-PCR .241 8/12 > Next QT-PCR 4/2013 > > On Thursday, November 8, 2012 5:08:28 AM UTC-6, Draz wrote: >> Congrats on the 9th year >> >> I myself only got diagnosed last year July so 1.5 years almost. I have been >> using Glivec for 4 days and then got switched to Tasigna, normal levels of >> white cells within 2 weeks (309 starting value), spleen back to normal in 3 >> months and complete molecular response was reached last february. >> I have no idea how long I'll have to take the medication but I'm not >> experiencing any side effects at all (at start some itchiness but a good >> scrub and skinpeeling session with doctor fish cleared that up for good) so >> I have no problem taking them. At the moment I'm enrolled at several extra >> research options in the hospital and countrywide, which basically means for >> the next 2 years I'll be doing bonemarrow sampling every third month and >> bloodwork once per month. My body can handle the damage and if it helps >> someone else go for it. >> >> I have accepted the fact it might be for life (testing/medication/all that >> jazz) and accepted the fact getting kids will be difficult but I heard that >> after a period people stop with the medication and try without... is this >> even advised? >> >> - Draz >> >> On Thursday, November 1, 2012 2:40:42 PM UTC+1, Jeanie wrote: >>> >>> Yahooooooooooooooooooooooo Jan will be my 9th year of my fight against CML. >>> 5 Years on Gleevec >>> Few Months On Tasigna >>> Almost 4 Years On Sprycel >>> Miracles do happen. >>> Jeanie<3 >>> Would like to hear from everyone on their years on certain CML Drugs? >>> >>> In a message dated 10/27/2012 5:46:44 P.M. Eastern Daylight Time, >>> rszi...@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 <cml...@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 <rszi...@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 >>>> ones....due 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 <cml...@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 once or twice a day. >>>>> >>>>> I hope that this finds you doing okay. I know that you go through a >>>>> lot and that you are a very strong person. >>>> >>>> ACTUALLY MILLIE, ANYONE THAT HAS TO GO THROUGH ANYTHING LIKE YOU OR ME IS >>>> AUTOMATICALLY A STRONG PERSON. WE DIDN'T ASK TO BE SICK BUT NOW THAT WE >>>> ARE WE JUST HAVE TO FIND WAYS TO BE ABLE TO DEAL WITH IT. >>>> >>>>> I think of you when I'm hurting and know it's nothing compared to what >>>>> you have to deal with. You are always here for all of us, and I know you >>>>> are appreciated by all. >>>> >>>> MILLIE, I AM NO DIFFERENT FROM YOU OR ANYONE ELSE. WE JUST HAVE TO DO >>>> WHATEVER WE CAN TO JUST KEEP ON GOING. AGAIN I AM VERY SORRY TO HEAR ABOUT >>>> YOUR PAIN. I HOPE THAT IT WILL GET BETTER REAL SOON. >>>>> >>>>> We have a bad storm headed out way, and it looks like the whole state of >>>>> PA will be involved. I'm only hoping that it won't last to long and not >>>>> cause a lot of damage. I worry about the trees coming down >>>>> on the house, but there's nothing I can do about that either. My middle >>>>> son always tells me that worry doesn't help anything....or stop anything >>>>> from happening. I know that he's right. Actually, he and his family >>>>> live in New Jersey and will get more of the storm then we will. >>>> >>>> IT SOUNDS LIKE YOUR MIDDLE SON IS A BRIGHT PERSON. YOU MIGHT WANT TO TAKE >>>> SOME ADVICE FROM HIM BECAUSE WORRYING CAN DO NOTHING FOR YOU BUT TO JUST >>>> MAKE YOU UPSET. I ALSO HAVE A HOME IN PA AS YOU ALREADY KNOW AND IF >>>> SOMETHING HAPPENS TO IT WELL AT LEAST I'M NOT IN IT AND NITHER ARE MY >>>> FAMILY. INSURANCE IS WHAT IS NEEDED AND I HAVE IT SO I JUST CAN'T WORRY >>>> ABOUT IT. >>>>> >>>>> You take care, and let me know how you're doing. I do keep you in my >>>>> prayers and think of you often. Were you able to get to PA this year? >>>> >>>> THANK YOU FOR YOUR PRAYERS. YES WE DID GO UP TO PA THIS PAST SUMMER. IT >>>> WAS A LITTLE DIFFICULT BECAUSE WE MUST DRIVE ALL THE WAY UP THERE. WE >>>> SPEND TWO NIGHTS OUT AT MOTELS BECAUSE I RAISE CANARIES AND HAVE ABOUT TEN >>>> OF THEM RIGHT NOW. I HAD MORE THEN FIFTY SEVERAL YEARS AGO BUT IT WAS TO >>>> DIFFICULT TO MANAGE ALL OF THEM. I HAVE A LOT OF FRIENDS THAT ARE ALSO >>>> INTO CANARIES SO I WAS ABLE TO FINF THEM VERY GOOD HOMES. I ALSO HAVE A >>>> BEAUTIFUL DOG THAT I RESCUED FROM A KILL SHELTER FIVE YEARS AGO. >>>> >>>> I ALSO HAD TO MAKE ARRAINGMENTS FOR MY DIALYSIS TREATMENTS, AND THERE IS A >>>> DIALYSIS CLINIC IN A TOWN CALLED HONESDALE PA ABOUT TWENTY FIVE MILES FROM >>>> WHERE I LIVE. >>>>> >>>>> 18's to you, >>>>> Millie >>>> >>>> AND 18'S TO YOU AS WELL. >>>> >>>> Marty >>>>> -- >>>>> [CMLHope] >>>>> A support group of http://cmlhope.com >>>>> ------------------------------------------------- >>>>> >>>>> You received this message because you are subscribed to the Google Groups >>>>> "CMLHope" group. >>>>> To post to this group, send email to cml...@googlegroups.com >>>>> To unsubscribe from this group, send email to >>>>> cmlhope-u...@googlegroups.com >>>>> For more options, visit this group at >>>>> http://groups.google.com/group/CMLHope >>>> >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com >>>> ------------------------------------------------- >>>> >>>> You received this message because you are subscribed to the Google Groups >>>> "CMLHope" group. >>>> To post to this group, send email to cml...@googlegroups.com >>>> To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com >>>> For more options, visit this group at >>>> http://groups.google.com/group/CMLHope >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com >>>> ------------------------------------------------- >>>> >>>> You received this message because you are subscribed to the Google Groups >>>> "CMLHope" group. >>>> To post to this group, send email to cml...@googlegroups.com >>>> To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com >>>> For more options, visit this group at >>>> http://groups.google.com/group/CMLHope >>> >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To post to this group, send email to cml...@googlegroups.com >>> To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com >>> For more options, visit this group at http://groups.google.com/group/CMLHope >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To post to this group, send email to cml...@googlegroups.com >>> To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com >>> For more options, visit this group at http://groups.google.com/group/CMLHope > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
