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_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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