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Advice:
Stopping Gleevec
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I have been with CML for the last 6 years, the last 2 years I have been on Remission. A few months ago I stopped Gleevec for 21 days and I felt much better, my Anemia disappeared.
Now my oncologist is planning to stop Gleevec for 2 o 3 months.
Has anybody stopped Gleevec for a long period and what has been the outcome?
Please, advice
Posted on 03/09/11, 12:32 pm
10 Replies Add Your Advice
Reminder: This is a support group for Chronic Myelogenous Leukemia (CML). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Advice:
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Reply #1 - 03/10/11  7:49am
" Do a Google search for the STIM (stop imatinib) trial. The trial was done to take people who had been on Gleevec and were CMR for over two years and stop their treatment. Most people relapsed within a few months, but some didn't and were able to hold their remission. Of the ones who did relapse, I believe all were able to restart Gleevec and regain remission. The key to this is that you must be very closely monitored. I think the protocol is PCR every month. If your PCR numbers start to go back up, you have to go back on treatment.

Good luck. Please keep us up to date how you do with this, many of us are very interested in this topic. "
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Reply #2 - 03/10/11  1:27pm
" Hello: TKIGuy:
Thank you for your reply. I will most definitely keep everybody inform as how I will be doing with stopping Gleevec.

Thank you "
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Reply #3 - 03/10/11  3:58pm
" I have been on Gleevec for 10 years, and in CMR for 7, but I do not want to try to take a vacation from my Gleevec. I admit that I still get a lot of side effects, and realize how strong Gleevec is. Unless, I am forced to stop it for some reason I will keep taking it.
I have always felt blessed that it worked for me when there was nothing else available when diagnosed in 1998. I did the Interferon and ARA-C Shots that only started to destroy my liver. I was not a candidate for a BMT, and then there was the Gleevec Trial availble. I just started year #13 Living with CML "
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Reply #4 - 03/20/11  3:11pm
" I was stopped because of struggling blood counts and i relapsed within 3 months.I know how that med makes u feel ,i tried to keep working as an ironworker,10 hr days it was impossible.After my first relapse they changed to sprycel the fatigue was less for me. "
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Reply #5 - 04/09/11  11:47am
" hello there I believe I have the answer you're looking for. I was diagnosed with cml in january 2010 I had a white count at 370,000 and was admitted to the hospital where I spent 3 weeks and was released taking gleevec.My body responded well and I was in complete remission within a month. The side affects of the meds was horrible and made me sick all the time so after 2 months of treatment I quit. At first I felt better than I had in years and started to enjoy life again but I was not stupid enough to believe there wouldn,t be a price to pay. I kept feeling good until around october 2011 and then started going down hill. In december I had my blood checked and my count was over 100,000 and gaining about 5-10,000 a week, I still refused to treat it and now I am still active but have little energy and throw up alot and can feel my body shutting down as I know my time is almost up. I,m 35 and I'm not afraid to die so the good time I had was worth it to me but you have to ask yourself if you are ready to die because if you value your life then you better quit messing around and go back to treatment because I know how great you feel now but I can assure you that it won't last and you will die. If you think of any more questions I'd be happy to answer them as I know there aren't a whole lot of people that have done what I have "
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Reply #6 - 04/14/11  6:00pm
" I had a terrible allergic reaction after 4 months on Gleevec. Yesterday my Dr. took me off and will evaluate my acute skin condition in two weeks, meanwhile he is applying for Sprycel for me to try. I really fought them taking me off Gleevec but I was told my allergic skin condition could kill me. So I'll know in two weeks if my skin improves...but of course two days off Gleevec it is much better and then try the Sprycel. I'm really worrked...what if it doesn't work? "
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Reply #7 - 04/15/11  12:56pm
" In addition to Spricel there are some other drugs for CML, therefore you can try others if Spricel doesn't work.
In my istance I stopped Gleevec because it helps my Anemia and Diarrhea, and also because several studies says that if you have been on remission for 2 yrs. it is possible.

My very best for you "
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Reply #8 - 05/02/11  10:38am
" @Hollow1

I am so sorry to hear of the way things have gone for you and I worry that you have not been treated properly or have not learned enough about CML. Perhaps you are truly ready to die and you are content with the path you have chosen, but there are things you have said that don't make sense or are incorrect and I hope somewhere along the way there was a Dr telling you this, even if you did not want to listen.

You claim that after 1 month on Gleevec you were in complete "remission", that is not possible. There is no such thing as remission with CML when you are on TKI therapy, there are various levels of response. The first level is a complete hematological response, which often occurs within first few weeks to few months of taking Gleevec. This level of response means your blood counts have gone back to normal, but it has little to do with leukemic burden. There are other tests such as FISH and PCR tests along with bone marrow biopsies that tell the real story of how we are doing while on therapy. It often takes months to a year or more to acheive a major molecular response where someone is considered to have minimal residual disease and even then they still need to take drug to keep under control. I'm sorry Gleevec made you sick but considering how long you took it, it does not sound like you gave it enough of chance (often side effects settle down over time), not to mention you do not talk about dosage adjustments that could have helped, other drugs to help with side effects like nauseau, and the fact there are a number of other drugs for treating CML besides Gleevec (Sprycel and Tasigna) that could help you and not cause the side effects you were experiencing.

If you just want to give up, that is certainly your choice, but I really hope someone explained all the options to you because from your post it sounds like you do not know much about CML and that is a shame this day in age for a patient to not understand all the options available to them. I urge you to reach out to a CML expert at a major cancer center for a consultation. It may not be too late for you and there is a chance another drug could save your life and allow you to live with an acceptable quality of life.

And just to be clear, your experience is nothing like the original poster who has been in treatment for over 6 years and has seriously knocked down the leukemia. Research shows that TKI drugs most likely don't kill the leukemic stem cell, but there is a growing school of thought that it may not be necessary to kill it if the body can learn to keep the disease in check on its own. There have been people who after years on treatment were able to stop and did not relapse. In your case, you were on treatment for a few weeks, that is completely different from cequi.

I truly hope you seek out another opinion and consider trying another treatment option.

Peace "
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Reply #9 - 05/02/11  1:30pm
" Note to TKIGuy;
You definitely got it all wrong, I DID NOT GO INTO REMISSION AFTER 2 MONTHS. I repeat I had been on Gleevec for 6 years and on Remission FOR THE LAST 2 YEARS. There are many reports that declare a good possibility of stopping Gleevec under certain circumstances and with certain people. Still is a phase under strict
control. "
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Reply #10 - 05/03/11  9:28am
" Note to cequi

Please reread my post and note that I was responding to Hollow1. Hollow1 claimed he went into remission after 2 months and then a short while later stopped treatment.

Sorry if there was confusion. "

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