Sam

[Sam-1]

I am 81 yo man live in Southern California. I have a rare type of nh lymphoma , called lymphoplasmocytic lymphoma, w/o macroglobulinemia. Two weeks ago I started ibrutinib capsules but after 4 days i quit taking it after having violent side effects including disorientation, constipation, herd. Gases and crippling severe calf spasm. FDA have approved ibrutinib for CLL, she, and lymphoplsmocytic lymphomas lymphoma . I have never been Tx before. I appreciate any feed back from those folks that been have problems with ibrutinib, for cll or other kinds of NHL lymphoma.

[wroxham-gb]

Welcome to the forum Sam. I can see that this is your first post.

Sorry, butI cannot help with the problems you have had, I just hope that you went back and explained to your doctors who treat you what was happening.Somehow your rpost slipped down the list

ButI'm sure now lots of people will reply who take

Imburvica with lots of advice.

Best wishes.

Sue

[MsLockYourPosts Passed Volunteer]

Sam - I am also in Southern California. Where are you being seen? In your position I would want a doctor very familiar with CLL and ibrutinib.

[MsLockYourPosts Passed Volunteer in reply to MsLockYourPosts]

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