Well, I was a touch overly optimistic in my last post. Turns out the lung clot was a symptom of the mcl returning.
So now I’m being advised to start ibrutinib along with the blood thinners etc.
I’ve read a bunch of somewhat scary info on the drug. But I’d very much like to hear what effects others on the same path have had to put up with.
Briefly I was diagnosed nearly three years ago, had six cycles of R-CHOP and have been in remission until I got what I thought was a bit of a chest infection a couple of months ago.
So here we are.
I suppose what I’d like to know is whether it’s worth stringing things out by taking the ibrutinib or whether the side effects make it a bit suspect.
Answers on a bedpan please to….
Hi seasidepeter I have a different type of Lymphoma and treatment journey but did not want to leave your posts answered……let’s look for some of the group members to pick upon your post soon.
You can search the site for ibrutinib using the search tool 
near the top and as always you can reply to any post to see if the member is still using the site.
Yes is certainly was meant to be ‘unanswered’……. it been a long day.
Back in late 2013 my days were numbered so grateful to be around doing great.
Sorry that you have not had a reply about ibrutinib, you may want to check out Lymphoma Actions……. Buddy Service where they could be able to link you up with someone who has walked the same treatment journey with the same type of NHL.
