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So let the ride begin?

So I was on Spyrcel 100 mg for one month. Due to low hemoglobin and WBCs hematologist stopped it for 3 days and then started 80 mg. Been on 80 mg for a week and hemoglobin much better but WBC down to 2.3 and neutrophils below 1000. So she told me to stop it again and recheck blood in a week. Does this sound ok? Still heavy night sweats, rapid heart rate at times with over exertion. Any advise appreciated. Thx Dawn...... I tried to erase this cause I just read a post from Scuba on previous question. Sorry, brain fog!

Keep your head high and never give up. Maybe try Gleevec . I've tried Gleevec , Sprycel and Tasigna and Gleevec has less side effects for me. It might work for you too. Ask your Oncologist his opinion first though. 

Thanks Phillip . I so appreciate your reply. 

Dawn,

Actually - I have a suspicion that Sprycel is going to work excellent for you. But you need to start back with a much lower dose. I was on / off/ on Sprycel until my blood counts stabilized. It took a few months for that to happen, but it did happen.

Discuss with your doctor re-starting Sprycel at 20 mg once your blood counts recover. Your blood system is very responsive to Sprycel and data shows that those who experience myelosuppression (low blood counts) due to Sprycel (like you, I was one of them) have a deeper long term remission and than those who don't experience any myelosuppression.

The key here is to modify dose very low and work up if necessary not the other way around. 80 mg is way too high a dose for a patient who experiences myelosuppression.

Talk with your oncologist and relay my story to him. Let him know that a patient of Dr. Cortes (me) had me stop Sprycel until my blood counts recovered and then re-started me on 20 mg. His research and interpretation of results suggested that starting at low dose at the start works better in patients who experience myelosuppression. Further, after I re-started on only 20 mg, my PCR continued to drop even faster to where I am "undetected" today. I still have some myelosuppression - that's how powerful Sprcyel can be for those who are 'sensitive' to it - as you are. But it is minor and I don't feel it.

(make sure to add magnesium to your night time program (250-300 mg) so you sleep well and calms your system. Lowering your dose should alleviate your side effects. I don't feel any on 20 mg.)

 

I can’t thank you enough Scuba. I am learning quickly. I am gonna tell the hemotogist about you and Dr Cortes and see what she says. I am ready to do the 20 mg. I may need a second opinion if she is not agreeable. Thank you again so much!