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Non Hodgkin's Lymphoma Friends
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Mantel Cell Lymphomia - Ibrutinib

Hello, I'm new to this group and wanted to find answers to concerned questions. My partner had been diagnosed with Mantel Cell Lymphoma three years ago. He underwent Chemo and stem cell treatment. Recently after a routine blood test, the doctors said his WBC was rising rapidly it's doubled in the last two week to 80% above average. His platelet count has also started to drop. He looks and feels great, has been putting on weight and is not experiencing any symptoms he had when he was first diagnosed (sweats, fatigue, gaunt look). His doctors said they want to put him on Ibrutinib straight away before he starts to feel unwell. He had a Scan and we're waiting for the results, but the doctors that doesn't matter anyway because his platelets are dropping. Has anybody had experience with Ibrutinib and what are the side effects. I understand they are different for everybody. I just wanted to know of other people experience with Ibrutinib - good and bad!

1 Reply

Hi, I have been on ibrutinib (imbruvica) since March this year. After two months my liver count ALT started going reasonably high, 355 and should be under 45. I was told to stop the imbruvica for a month which I did and the liver returned to normal. I started again on two tablets of Imbruvica a day and not 4. I also changed my Cholesterol tablet to Pravastatin and I and doing very well on the daily dose of 2 tablets a day. (majority of people are on 4 a day). I have minor side effects, nothing to worry about. In March when I started I had a rash on my chest but nothing major. Hope this helps. Good Luck and best Regards Doug


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