A little background:
Diagnosed in April 2014 with WBC over 500,000. Responded to Gleevec 400mg quickly and PCR fell to 6.8 in six months. After 9 months, stopped responding to Gleevec when PCR rose to 46.
Started Sprycel 100mg 02/15 and all of my blood counts tanked, but PCR fell again to 9.8. After five months of low blood counts, numerous transfusions, and rbc stimulating shots, Onc lowered dosage to 50mg Sprycel. PCR went up to 21 in 6 weeks time. So back to 100mg of Sprycel. Continued low blood counts, continued transfusions. PCR fell almost immediately back to 8.4...until November 2015 when PCR again rose to 18.
I started Tasigna 800mg at the end of November 2015. Blood counts still trending down, with WBC lower than it has been - it dipped into the 1's, but is now pretty steady at 2.5 and platelets between 20 and 35. (HGB continues to be low as well.) PCR as of December 31, 2015 up to 21.8. Onc said lets give it a few more weeks. Is that at all reasonable? I feel like I'm taking medication that is not working. I'm super stressed out, I've had constant runny nose on Tasigna, and now I have a cold sore. Not a good start to the new year.
I've had one mutation test which revealed a 35 neucleotide insertion between exons 8 and 9, but according to most of the literature that I've been able to find - while it possibly may indicate a resistance to Gleevec - it should not prevent me responding to Sprycel or Tasigna.
At this point, I have no idea what to do. I had a total of 8 RBC blood transfusions in 2015, and will need another next week. ( I can usually go until HGB is in the high 6's to low 7's.) Platelets have not been above 50 in 8 months, and ANC has been between 1000-500 as well. I have not had any drug breaks, and PCR continues to rise. Should I demand to be immediately switched to Bosulif or Pontinib? (Onc wants to run another mutation test, and stick with Tasigna for a couple more weeks.) I'm missing work every week for dr appointments, I've gained a bunch of weight as I've been unable to do any consistent exercise with my HGB so low (I get extremely out of breath, and it feels like my heart is going to beat out of my chest), and I'm just so sick of feeling sick that I'm beyond frustrated.
What is my next logical step? Bosulif? Pontinib? I'm feeling so discouraged.