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New Diagnosis/tasigna ?

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Hello all,

I was just diagnosed on Oct 30th, had a WBC 425,000 and very enlarged spleen. I am a 45 year old female with a fairly healthy lifestyle. I started Tasigna on Nov 16th and developed both a rash around my eyes and liver pain after 2 weeks of medicine. My dr said go off for a week. The rash is clearing up but the liver pain is still bothering me. It is not horrible pain but worrisome. My liver enzymes were good and bilirubin only slightly elevated at 1.7. Did anyone have discomfort in the liver area at the beginning?
Another question, what is a realistic timeline of getting back to feeling ‘normal’? My doctor thought by the first of the year I would be feeling much more like my pre CML self. 
Thank you for any tips, advice and suggestions. Feeling completely lost in navigating this diagnosis. 

Hi,

With a very high WBC it would not be unusual for your spleen to be enlarged and for the spleen to impose on to the stomach and create pain and discomfort as well as indigestion-I understand that the location would be in the upper left part of the abdomen under the rib cage and below.If your liver function tests are not too abnormal then it would be quite usual for you to not have too many early stage symptoms of any disorder with the liver-my gastroenterologist tells me that liver symptoms only usually emerge in the later stages of a disorder and present themselves as a dull throbbing sensation in the upper tight abdomen under the rib cage and below and possibly jaundice in advanced cases of liver damage.

If you have not had a scan of the spleen and liver then it would be possible conjecture from any medic regarding the source of your pain-a specific liver scan, a Fibroscan would identify any scarring,fatty liver tissue and any swelling.

Most of the tkis including Tasigna/nilotinib  are metabolised by the liver (as opposed to the kidneys etc) and in the early stages of treatment lead to raised LFTs or liver scores but after a while should settle-if your scores are not elevated then I would discuss with your doctor the source of your abdominal pains.The spleen now quite enlarged will take time to get back to normal size and function and in the meantime might be a source of considerable discomfort.

Have you had any scans to establish the size of your spleen and your liver and the precise source/location  of your pains and discomfort?

Regards

John

Hi John,

Thank you for your response. The pain from the enlarged spleen did last awhile but was gone after a week on Tasigna. This pain feels like it is something different from the spleen, but it is hard to read my body right now. My fear is my body is not tolerating Tasigna. I did have scans when diagnosed but not since. I think I will ask for, at the least, an ultrasound of the area. 

Thank you!

Becca