You are here

Increased Sprycel dosage

Hello all -

I trust all is wel. I just received a call from doctor/nurse practitioner that a blood test they normally don't do was done resulting in my dosage being increased from 100mg to 140mg. I've been on the 100mg since being diagnosed in December 2018. I'm bummed out because I think the 100mg is "pushing" me into menopause (I'm 49), I get winded quickly and my hair is extremely dry, brittle with a knot on each strand (I have textured African-American hair). I'm working from home and feel like going in mph room and just cry all day. I don't know what to think about this increase in dosage. I'm nervous. I left my last appointment feeling like all was well especially since the NP said the blood work results looked great. Should I be ...?

 

WendyAR, you certainly deserve to know a lot more as to why your dosage was increased to 140mg.  I wouldn't wish 140mg of Sprycel on my worst enemy, nor the extreme dosage of any TKI.  TKIs are toxic medications and the less we take over the longterm the better off we are likely to be.  The probability of side-effects from Sprycel 140mg is heightened.  The need for 140mg is suspect.  Many oncs mistakenly think that increasing dosage,after over a year of treatment,  to push through that last bit of resistance that often occurs with Sprycel at low-level CML is a good idea.  Hope that's not the case with you, but if so, there's a much better solution close at hand.

Please post a brief summary of your CML history, including dates and test results, for the benefit of myself and others who may have something to offer.

Thanks,
Buzz

Hello -

I was told that a blood test they normally don’t order was done suggested increasing dosage. The nurse practitioner called stating that this test showed cancer cells so they want to increase dosage. I sent an email today asking for the exact test and reason. 

I’m my own advocate and don’t feel I’m asking the right questions.i was diagnosed December 2018. I underwent a bone marrow biopsy that was inconclusive because I fainted and they weren’t able to get enough “sample” to test so everything is based on blood work which is done every three months. I have all of blood work results available. The side effects I experienced with the 100mg was headaches in the beginning, fatigue, shortness of breath while at motion (walking up stairs, carrying large bundles) and extremely dry hair that breaks and tangles. 

WendyAR, you test every three months and your test results include a BCR-ABL1 ratio, expressed as a percentage, normally referred to as a PCR reading.  If you aren't familiar with this, you need to be, as it is the primary indicator of your progress.  

I’ll be scheduling a video visit with my Specialist tomorrow so will definitely inquire about the PCR. I went through Test results and don’t see a test with either PCR or BCR-ABL1 ratio. I’m in the US so wonder if it’s a difference in terminology or results of that test is not sent/provided to MyChart.