8 replies to this topic

[canrad]

I been following this forum for nearly three years now. In January 15th 2010. On my 47th birthday I was diagnosed with CML.

After doing Gleevec for one year I could not bear the side effects and was switched to Sprycel. On my, June BCR ,I was declared undetected.

Now I am considering stopping my treatment, to see how it goes. As most of you I had to live with all the side effects of these drugs and they are not pretty.

My oncologist advised me that he would not do it for himself, but it was up to me.

I think is worth a try. If all fails I can always go back to Sprycel.

I will let you know how it goes.

Alex

[Susan61]

Congratulations on your PCRU.  I do agree with your Oncologist.  You only got to PCRU now, and I would wait a little longer before stopping treatment.  Again, this is just me speaking.  You will get other responses from people who are on Sprycel, and want to try to go off treatment.  I myself have only done Gleevec.  I have been PCRU now for 9 yrs, but I still take my Gleevec 400 mg a day.  My oncologist does not even want me to cut back on my dose, but thats up for debate also with me.  I wish you the best in whatever you decide to do.

Susan

[ChrisC]

Hi Alex,

Congrats on reaching PCRU!

It sounds like you have had one PCRU test result, four months ago in June, right? Despite this great achievement, one that many with CML do not achieve at all yet still their CML is managed fine, doesn't it seem a bit early to stop Sprycel and ask your body to take over maintaining being PCRU without any help? Whew!

The published research studies on the web re working with folks going off their medication, at least from what I've read, had two main requirements for participants in their studies (since the researchers wanted to start finding what works, it looks like they wanted to first study those who they felt had the best chance of success when being off their TKIs):

1) a swift and deep response to their TKI (in your case, it seems to have taken you from Jan. 2011 to June 2012 to reach PCRU — well done, yet perhaps a questionable speed and depth of response as far as being in the study?), and

2) to have maintained their PCRU status for at least two years, without losing their full "undetectable" response (you haven't indicated whether you have had a second PCR test result since May 2012 — might it not be wise to wait for a long string of PCRU test results before stopping Sprycel, just to be on the safe side?)

Whatever you decide, we wish you well. Please keep us informed of your progress.

ChrisC

[TeddyB]

First off, congratulations for reaching pcru!!!!

I would have waited a bit if i were you, being pcru for at least a year or two before i tried stopping, but thats just me.

If side effects are harsh then maybe ask onc for a dose reduction to start with, like Billie suggested?

70mg or 50mg perhaps?

Good luck, and keep us updated what ever you decide to do

[CallMeLucky]

Certainly your choice, but in my opinion you are not ready to go off TKI and will likely relapse.  You have been on therapy for 2.5 years and only now achieved your first PCRU, that is great, but it is not super fast and it is not been shown to be consistent.  There is a reasonable chance your next PCR will be low level detectable.  Right now you are probably just below the detectable limit of the test.  You would want to be PCRU for at least 1-2 years, consistently, before considering cessation.  If side effects are that bad then look at reducing dosage a bit or consider switching to Tasigna (realizing of course that every TKI will have some side effect).  If you do stop taking the drug, get PCR every month so if/when it goes detectable you can go back on therapy right away.

Good luck.

[Tedsey]

PCRU, that's awesome!  I always err on the side of being conservative.  I would want to hold PCRU for a few years before I decided to stop the TKI (if I were to stop).  I believe my body goes through withdrawl right before I am due to take my next dose.  It is like my body craves it.  For many reasons (basically fear) and I feel my body tells me when to take the Sprycel), I would see if a lower dose would keep me PCRU before I decided to quit the drug.

But best results to you with whatever you decided.

All the best,

Tedsey 

[Happycat]

Congrats to you!  I'm too chicken to get off the TKIs, but I also don't have many side effects.  If I DID have bad side effects... hmm, I don't know what I'd do.  I guess all you can do is go with what seems right for you. 

Traci

[Teresabourgeois]

Alex, just  reading back and found this post. I'm now wondering if you stopped your meds and how are you doing?  Being its July 2013