It’s been about a month and a half since Kevin started his new chemotherapy treatment for his leukemia, Tasigna (Nilotinib). This treatment is kicking his butt, BIG TIME! But hopefully that means that it’s working and working hard destroying the leukemia.

He is TIRED… OH SO TIRED. He has “NEVER felt this tired before” in his entire life. He sleeps and sleeps and sleeps when he is not struggling to keep it together and stay awake. He also has a rash that he scratches until he bleeds and lots of body/bone/muscle pain. He manages his pain with other drugs and the doctor finally gave him some cream to hopefully help with the rash and itching. We asked for a med to help with the fatigue because he doesn’t want to sleep his life away, but the doctors want to see if the treatment is in fact working before they give him anything else. We are also hopeful that the severity of these side effects will minimize with time, as they have for many other patients on the same treatment.

His CBC’s (routine blood work) numbers were okay… The Tasigna is taking all the numbers down significantly compared to the last treatment. His WBC is lower than “normal” now… Which isn’t really a good thing, but nothing to panic about yet. We will just need to really try hard to make sure he isn’t exposed to any illnesses.

His hemoglobin is lower too. Still nothing to panic about yet, but he takes ridiculous amounts of iron supplements, so it does concern me. His platelets, that were REALLY high before this treatment, are now at the bottom of the normal range. Something else that needs to be monitored closely to make sure they don’t go too low. Some other numbers are below, but still relatively close to normal.

The doctors are hoping that perhaps the Tasigna (Nilotinib) is working TOO WELL and they will just need to adjust his dose to a lower amount. The results we receive in about 2 weeks from his PCR/Molecular testing will tell us if he is FINALLY responding to treatment. ANYTHING will be better than “Diagnostic Levels”!! Even a decrease of 5%!! Until then, everything stays as is and we just need to keep on keeping on and making the best of the side effects. He still tries to be physically active as much as possible, but he struggles and pretty much anything he does wipes him out. He survived the WEDDING, which is awesome… and now he can relax a little bit and try not to stress (HA!) while we wait. 

whatever doesn't kill me loverman

Thanks for stopping by! I hope to be shouting awesome news from the rooftops in approximately 2 WEEKS!!!