15 replies to this topic

[vctking]

I am considering , or  asking my onc, if I could just try stopping the Gleevec for a 2 or 3 months, see if the CML comes back or not, and then start it again if it does. Am I crazy?  I have hade the CML for 3 years, my tests have always been excellent. I am just tired of taking this drug. I have read that there have been studies in Europe that show that after a few months of stopping Gleevec , 20 or 30 percent of the trial had a recurrence, then after starting back on the Gleevec,100% went back into remission. What's the harm?   There were also a certain percentage of people who went on with no re-occurrence. I don't have any idea how they are now, but if I could just have 2-3 months away, I think it would be great. Anybody out there have any thoughts on this? Thanks.

[Susan61]

Hi:  A lot of people disagree with me, and think I should have stopped my Gleevec awhile back.  Personally, I have not thought of stopping it because I still feel that there is too much unknown regarding TKI's.  We know that a BMT is considered the only cure, which I do not agree with either as I have seen people have a relapse after a BMT also.

My favorite expression is:  IF IT AIN'T BROKEN THEN DON'T FIX IT!!.  I look at my past 13 years of Living With CML.

I do not like a lot of the side effects of Gleevec, but I also feel if it has gotten me to this point then why play around with it.  Until I see a definite cure for this disease I will just keep doing what I am doing, and I pray to God to keep me at PCRU which I have been at since 2003.

     I am sure you will get a lot of different responses, but in the end you have to do what you want to do.

    Good Luck if you take the break.  Just being tired of the drug would not make me take the chance.

[ChrisC]

Perhaps there is something in this discussion that might be of some use to you:

                 Re: Milestone #1: 6-months post TKI, still PCRU            

[jjg]

Hi vct, Well I stopped a week ago but not to give my body a break. However, a week later it is a huge difference and I really like the new/old me. Mind you I was getting smashed by 800 gleevec so I suspect just going down to 400 would also have made me happy. It seems most people would like a minimum of 2 years PCRU before stopping treatment. I only had 5 weeks and they do expect to see it coming back in months at a molecular level and maybe 6 months at a hematological level. I think it all depends on your risk profile and what you stand to gain from taking the risk. We are hoping for a pregnancy and although they say we only have a 50% chance of becoming pregnant we are prepared to take the risk of trying. Other people such as Susan don't see a big enough gain to off set the risk. I suspect there is an aspect of wanting to get control back in your life? As long as you really are accepting of the risks, and those around you accept you taking the risk then is a strong argument for living life a little closer to the edge. The other point of view is that you should look long and hard at exploring ways to accept and enjoy the life that gleevec, or possibly the other TKIs give you. I noticed that Sussan put a capital L in "Living with CML". Neither option was in my perfect life plan either.

[Trey]

Of those who stop TKI drugs, more relapse than not.  You do not say if you are PCRU (undetectable by PCR) and for how long.  If not, then yes, you are crazy.  If PCRU for less than 2 years, then yes, you are crazy.  If PCRU for over 2 years, then maybe you are not crazy, but still possible.  If PCRU for over 2 - 3 years, then dose reduction may be a good option.  After 3 years PCRU I reduced Gleevec dosage to 200mg, where I have remained for nearly 3 years now (still PCRU).  Feeling fine on reduced dosage.

[threedprof]

I agree with Trey, here.  I am on the road to stopping my TKI, barring the increase in monitoring doesn't reveal any presence of CML.  Some details of my situation can be found here: http://community.lls...e/115720#115720.  Most of these studies are conducted with patients that are PCRU for at least two years.  If you are in PCRU for a minimum of two years then discuss it with your oncologist and bring those studies with you to support your plan.

It's a tough choice either way you slice it but we are here as a support system, for you.

[Pin]

vctking - as others have pointed out, I would want to be ideally at PCRU before trying something like this. If it's not completely necessary to stop the drug as per what jjg is doing, then I would also consider dose reduction as a first test.

Speaking of which, Josie - this is incredible news! I would love to hear updates on how you are doing/feeling etc if you are up to it? I understand if not - but I just wanted to show you some support Wonderful news!

Cheers,

Pin xxx.

[Judy2]

I think another thing to consider in regards to stopping our TKIs after reaching and then maintaining MMR for a number of years is the long term toxicity of these meds. I know Susan has done well but our meds have not been around for a long time, especially Tasigna and Sprycel, and I do worry about the long term effects on our bodies.

Judy

[CMLguy]

CMl guy here,Been on Gleevec 400 mg for seven years now,and doing ok. I agree with Susan 61 100 %.Sure there are side effects but for me I have learned to live with them.I would not stop taking Gleevec ! But everyone has to make their own choices.

[janne]

I agree with Judy that the data is insufficient concerning long term effects of these drugs just as it is concerning cessation of TKI therapy altogether. The studies are very limited, however I do not think it warrants calling anyone crazy for thinking ahead. I personally do not think anyone is crazy for whatever their chosen  approach is, whether ultra conservative or borderline risky.  We all have varying responses to these drugs in regard to side effects, whether we have myelosuppression, or whether we are in danger of losing our jobs because we are on a certain drug or dose that makes us miserable. It is only through VERY few formal studies(re: TKI cessation)  and the experimenting of a few individual patients that we know that there are different approaches to tackling these very unique and difficult situations. Whether one chooses to stay on their TKI at a low dose, a high dose, or attempt a trial off is a very individual matter.

[Trey]

For the record, he asked us "Am I crazy?"  I seem to be the only one polite enough to have answered the actual question that was asked.  Just sayin'

[ChrisC]

" . . . Well of cous' not! I jus' done said that now, didn't I?. . . The bear started to get up, but B'rer Fox shoved him back down. "N-now listen here B'rer Bear, jest stop that right now, jus' stop! See that's how all the trouble gets stirred up in th' first place, now jus' watch 'im!" the fox scolded, then proceeded to put a large pot of water on the fire, slicing up vegetables to go into the pot. . . . You just watch an' make sure that ol' rabbit don't get out that hole now, y'hear? A-and don' be listenin' to any crazy tales he done tell you, either! Rememba' he done made a fool out ya twice befo'?"

From Superstition Ain't the Way, by Joel Chandler Harris

[vctking]

Susan . Thanks for your response. I really appreciate it.

[vctking]

Thanks for the response jjg. Every bit of info from all of the CML patients on this site is so helpful to me. I greatly appreciate it from all who have responded.

[vctking]

Thanks for the response Trey. Every bit of info from all of the CML patients on this site is so helpful to me. I greatly appreciate it from all who have responded. I am meeting with my onc in two weeks and I now have quite a bit of things to discuss with him. Thanks again and I do like your ideas of drug reduction. That could be a start.