2 replies to this topic

[Marcy14]

Had a BMB at my one year mark in May of this year. Those results showed the following:

 

No mutations were detected within the analyzed region of the BCR-ABL1 kinase domain

 

BCR/ABL1 gene fusion were observed in 0/200 interphase nuclei scored

 

Blasts 1%

 

My last blood test from around that time in may 2014 showed 0.17%, today my blood results showed 0.15%--just cant seem to hit MMR.

 

My oncologist was a little concered as i am fast approaching my 18 month mark and have not been under .1%  Also, my hemoglobin has been low (between 10 an 11). She suggested i start ferrous gluconate--she said anemia could mean my leukemia isnt as "under control" as we think?

 

She suggested a change in meds, but i have asked that if my results in November do not show .1% or less if i could try inreasing gleevec to 600mg from 400mg since i tolerate it pretty well.

 

They will be doing another BMB before swithing dosage or meds-anyone have any suggestions on what i can do to raise my hemoglobin besides the supplement. Are their certain foods that make it harder for gleevec to absorb into your system that maybe i should avoid? i take it after dinner. Also, anyone on here that raised their gleevec dosage that had success in getting to MMR?

 

Thanks!

 

 

 

 

[Lucas]

Hi, marcy. how are you?

 

First of all, i think yours results are good. you're 15 months into treatment and your PCR is moving in the right direction and you're in CCyR. The low HB is pretty common in cmlers and your anemia is just mild. MMR is expected, with gleevec, between 12-18 months, so you can reach this on time. I think there's no reason to think your cml isn't under control by the information you gave us. it's a cliche but remember: steady wins the race.   

[Trey]

Marcy,

 

You achived the most important milestone, which is CCyR (zero FISH) at one year.  That is very good, so you are doing fine.  Your Onc has unrealistic expectations.  MMR will very likely come along soon, and although you could try to help it along by increased dosage to 600mg Gleevec it often makes the anemia worse, so I would not recommend it.  That could require drug breaks and you could be worse off than before.  And the Onc is wrong about anemia showing the CML may not be under control.  Most of us have or had anemia for the first several years even though MMR.  The anemia issue is a mixture of your body changing over from leukemic cells to good ones, and that can take a while.  The iron may or may not help. 

 

If it were me, I would wait to see if MMR is reached in the next 6 months or so.  If not, maybe a drug change could be reconsidered.