7 replies to this topic

[CMLinATL]

So I been on the down low since my breast cancer dx in May of 2010.  I have been on Gleevec 400mg since Feb 2006 hit PCR 0.001 within six months.  I went off Gleevec in August because I was having cronic hives and it was affecting my quality of life.  I went off Gleevec with the consent of my Oncologist.  I was hoping that it would not come back.  I just got my PCR results and I am now 0.100.  Should I panic?  Is it possible that it won't go up or is just wishful thinking?  Any thoughts suggestions or miracles would be wonderful.

thanks in advance.

[Marnie]

I would guess that if you continue to stay off of TKIs your PCR numbers will continue to rise, but that if you start taking them again, you'll get back to PCRU.  Personally, I'd want to get back on Gleevec (or T or S) pretty quickly.  Just my 2 cents.

Marnie

[GerryL]

Interesting that the hives showed up so long after starting Gleevec - side effects can be tricky things.

I would get back on a TKI, if you restart with Gleevec and get back to 0.001, you could talk to your doctor about trying 300mg Gleevec to maintain 0.001.

Current info of people stopping their TKI shows that if it is going to return, it will usually be within the first six months of stopping - this happened to at least 60% of the people in the trial, Unfortunately you appear to be in that group. All of this group have restarted their TKI and returned to PCRU or MMR.

[CMLinATL]

Does this mean the CML is coming back?  I have been miserable on gleevec for 6 1/2 years.  Horrible weight gain, water retention, fatigue and cronic hives.

[Marnie]

It means that the CML never "went away," but was simply below the detection level, and now it has risen above the detection level again.

If you had a hard time on Gleevec, then you might want to talk with your oncologist about trying a different TKI.  I feel a lot better on Sprycel than I did on Gleevec, although when you switch TKIs, you often end up just switching side effects.

Good luck,

Marnie

[GerryL]

My doc is keen on Tasigna and has switched a number of his patients to it due to side effect issues with Gleevec.

I'm on 300mg Gleevec but still retain some of the side effects I had at 400mg. Trey and a friend of mine are on 200mg Gleevec, apparently minimal side effects, and for my friend the 200mg is holding her at MMR, Trey has continued to keep his PCRU.

[Trey]

You have very good inputs from the others here.  It is not a matter of panicking, but rather understanding that without the TKI drugs the CML will regain momentum.  It did not go away, it was just controlled.  The answer is to re-start a drug at some dosage you can tolerate.  Maybe ask your Onc about starting on half dosage of Tasigna.

[CMLinATL]

Thank you everybody for your quick responses.  I knew that it could come back wasn't expecting it so soon. Good news is Gleevec works.  I now have so many options that maybe I can find the best for me.  It never ceases to amaze what a wonderful support group we have on this site.  Thank you so much.