7 replies to this topic

[Mschmidli]

Hi everyone! Want to get some good advice on what I should do. Diagnosed in April 2013. Have been on gleevec 400mg ever since. In May 2014 they confirmed Ccyr with bmb and my pcr was .17% IS. At the end of August 2014 pcr was .15% IS. My oncologist wants me to have yet another bmb to see if there are any issues as to why I am not mmr yet. I had another pcr a couple weeks ago and will get the results when I see her Monday. My response has slowed down in the past year (was quick to hit less than 10% in first couple of months of treatment). But if my pcr result Monday is steady or hopefully lower than before isn't a bmb at this time kind of pointless? The one in May the lab said they showed a trace in marrow and recommended pcr for more accurate results. My onc seems to want to be very aggressive and raise me to 600 mg and do this bmb. The fatigue is pretty bad on 400mg and so is the eye swelling. What would you do? I am thinking about telling her I want to stay right where I am for now unless this pcr shows a significant increase. Thanks

[JPD]

If you are still trending downward, whats the rush?  And .15% is very low and I imagine inside the margin of error for the test.  Id feel pretty damn good if I ever get that low.

[chrissy778]

Hello, I was diagnosed with CML in August 2013. When I came up to my one year mark my doctor told me if my PCR went down from .155 to .1 I would not need another bone marrow. Luckily I made it. I hope this helps.

[chrissy778]

I am also on Gleevec 400 I find if I eat dinner and take my pill right after dinner with a full glass of water I do not have the swelling around my eyes. I also have fatigue and a lot of muscle joint pain but I worry that the medicine is not working when I feel this. I would take the 600 if my Dr thought it would put me closer to Complete response. But that is my thought about myself.....

[chrissy778]

I meant undetectable.....

[Trey]

Practically speaking, a BMB will not show "if there are any issues as to why I am not mmr yet" as your Onc said.  A BMB only does a couple simple things, such as looking at the leukemic cells (specifically, specialized leukemic progenitor cells which are at a precise state of dividing), but after CCyR that is not possible since such cells have become too rare to locate at that point.  So your Onc is on a quest for something that isn't there.  Below CCyR the BMB is not very useful at all unless there were marrow issues noted previously such as fibrosis or something similar.  And although many Oncs would like to see every patient MMR by 18 months, that is just not practical.  If everyone achieved that, then Oncs would want even faster results for their own patient.

 

Many patients experience a plateau in drug response at the 1 - 2 year point, so that is not unusual.  The reason is the drug is trying to kill off the higher order leukemic progenitor cells, and that can take a while. 

 

With your side effects, increasing dosage could do more harm than good.  You might end up requiring drug breaks, which can be less effective than steady state lower dosage.

[CallMeLucky]

I would stay the course or switch to Tasigna. If 400 is challenging 600 will be tougher. Agree with others that bmb would seem kind of pointless unless numbers were going up. Down or flat would not warrant a bmb at that level.

[Mschmidli]

Thanks everyone. I didn't think it made sense. Hopefully I will be lucky enough to be under .1 this time. But if not and I'm still plugging along I'm going to stay the course for a while longer.