7 replies to this topic

[CallMeLucky]

I wanted to get feedback from anyone has taken a break from TKI drug.  How long did it take before you noticed side effects letting up?  Did you find any issues when you restarted?  How long of a break did you take?

Thanks

[scuba]

Within 48 hours -

[Marnie]

Hi, Lucky. . .

I took a 5 day break between Gleevec and Sprycel and was disappointed to find no letting up of side effects.  My side-effects on Sprycel are far less noticable than on Gleevec, however.  Fatigue is about the only thing I deal with now.

Marnie

[Ray99]

Hi, Lucky,

   I took a three week break of Tasigna due to low plt count.  Feel bone pain for couple of days after restart.  After that not much side effect.

[ChrisC]

Hi,

After a few short breaks and dosage reductions on Gleevec way back when, I was told to take a four-week break in the hopes of resetting my side-effects response.

After four weeks with no TKI, my CBC showed WBC had gone up to 13 (high end of normal) and platelets and a few others going up. Time to restart TKI treatment.

What I did notice is that I still felt fatigued, brain-fogged, lousy, etc., while on TKI break.

However, after one week on Gleevec 400mg, one day off, and then beginning Sprycel 100mg, within just a few days there was a huge difference in one area: the Gleevec fog/blanket lifted and "I" was back )

ChrisC

[Trey]

I have been interested in this issue, so have watched the inputs from people here over the years.  Most indicate that while there may be some change within a short time, the majority have indicated that it takes a long time for any real side effects relief, as in well over a month.  I think the big exception is the "Gleevec fog" issue as Chris reports, which appears to take a week or so to subside after stopping the drug. 

I recently noted that Joel (who has stopped drug therapy, as has ChrisC) said recently "So that's three months on half dose and two without. Physically I'm returning to normal".  "Returning" is the key word, with a fairly slow resolution of the side effects over time. 

http://community.lls...art=60&tstart=0

(See page 5, Sep 1 post)

So overall, if someone wants to take a short drug vacation to feel better, it will likely be a disappointment.

[Melanie]

Hi Lucky,

I've taken several breaks from all 3 TKI's due to low counts and other side effects. Side effects like rash, gi issues, bone pain, cramps, etc, were relieved within a couple days, but those stubborn low counts of mine took weeks to months. I must say though that I felt great, less fatigued, once my numbers started returning towards normal and the longer I was on a drug break.

Blessings...Melanie

[janne]

Lucky,

I have taken drug breaks as well, a few while on Gleevec. (On Gleevec 2 years) I had side effects diminish SIGNIFICANTLY within 48 hours including brain fog and fatigue which were the most bothersome. I had no anemia etc so all symptoms were drug related and I felt great off of Gleevec. (I was not PCRU nor even MMR at the time, so still feeling effects of illness obviously, but the greater effect from the drugs was noticeably absent).  Less side effects with Tasigna, deeper response, much less annoying.  Janne