22 replies to this topic

[TammyT]

I was diagnosed with CML a month ago.  I happened to find it on a fluke.  My stomach was protruding and I looked pregnant but was not.  My husband is a radiologist so he felt my stomach and it was hard and he didn't like that so he set me up for an ultrasound.  My spleen was enlarged so he had me do blood tests.  The next day I was admitted to the hospital with a WBC of 181,000. If he had he not asked me to do an ultrasound I would still be walking around getting worse.  The first week was horrible and scary.  When I was in the hospital they required my family to wears masks and my youngest who is eight years old was afraid to come near me.  When they left I cried because he was scared of me.  My two older children are 15 and 14, they seem to be more positive about the whole situation and understand mommy has to take medicine to feel better.  After I had my bone marrow biopsy I unfortunately had a huge hematoma on my above my hip form.  It was so painful I could barely walk and could only lay down on one side.  I had to take pain medication, so I laid around half asleep the whole week and my children were really worried.  After I got the final test results 1 1/2 later I could start my treatment.  When they did my biopsy they were unable to obtain bone marrow and turns out I have severe fibrosis, but I am in the chronic stage.  That was a little disconcerting, but my oncologist has always been very positive and upbeat with my treatment so I have been fortunate there.  I started on Tasigna and within one week my levels dropped to 30,000 and the next week 13,000, almost normal, my uric acid levels are normal as well as my liver and kidney levels.  So I am doing so much better in just a month!  The only issue I have is fatigue in the afternoon and evening and bumps all over my body.  I was wondering if anyone knows or has experienced those symptoms, and if so do they go away after a while?  I am feeling so much better since my numbers have come down and I hope your husband will too after his numbers come down.  My spleen is back to normal size too.  Once I was getting around and doing more my eight year old has become better.  He still asks me questions and worries if I'm hot that I am sick.  I just try to tell him that mommy is feeling better and getting better every day.

[GerryL]

Hi Tammy,

Welcome to the board.

Fatigue seems to be an issue with the TKIs and skin issues to a lesser degree depending on the individual.

I'm on Gleevec, so won't comment on Tasigna, but I'm sure there are a few people around who have experienced something similar on Tasigna, who will chime in.

[Trey]

The TKI drugs cause many to feel tired, and often cause muscle, joint and bone pain.  Skin issues are also a common complaint.  These can subside over time but may not go away entirely for everyone.