Anyone else have Waldenström’s with a lot of bloating and pain around

Posted by pamla @pamla, Jul 4 10:10pm

I have Waldenström‘s macroglobulinemia and have been taking oral chemotherapy since last fall. I’ve slowly been having more trouble with going to the bathroom and now bloating, mostly in my abdomen, but also sharp pain and discomfort in my abdominal area as well as hands feet and my back is starting to hurt so badly that I can’t stand up straight. Recently found out that my spine is starting to have a lot of degeneration and wondered if anyone else is having anything similar to this happened to them.

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michaelah | @michaelah | Jul 7 4:06pm

Are you taking zanubrutinab (Brukinsa)? I have been on it for 15 months or so and yes, the bowels aren't doing too well. Serious back pain as well, bad bruising in my left arm, nausea, tired all the time and can't do much physical activity, but on the plus side my neuropathy is getting much better. So, for me it's an overall positive that I can hardly wait to get off of. I hope you find a positive to your meds which may be longer or shorter term. Good luck.

zeedee1 | @zeedee1 | Jul 8 10:46am

My Brukinsa is plying havoc with my tummy. Constant diarrhea . I didn’t know if was the omigam
Or Ruxience but stopped on my own Brukinsa and better after a few days. Will start up again but very hesitant. Is the cure worse than the disease?

zeedee1 | @zeedee1 | Jul 9 9:50am

In reply to @zeedee1 "My Brukinsa is plying havoc with my tummy. Constant diarrhea . I didn’t know if was..." + (show)

Nice to know we are not alone or crazy

pamla | @pamla | Jul 10 4:11pm

In reply to Michaela’s: yes I am taking bukinsa and the abdominal pain and trouble started a while after I started taking it. Haven’t had constipation this bad ever before but now taking stool softeners daily and psyllium capsules every day, which helps some. Other symptoms similar to yours but the back pain has been a bit better while muscle aches and joint pain is worse. Good news is my IgM continues to go down but at this point very slowly. Still good news though. Leg cramps are better with magnesium supplements but cold a lot and also tired easily. I guess I can tolerate most of it as long as it continues to work on the Cancer. Longing for the day when I can quit though and get back to normal hopefully. Good luck to you and hang in there. We can beat this.

tiger1 | @tiger1 | Jul 11 8:47am

In reply to @pamla "In reply to Michaela’s: yes I am taking bukinsa and the abdominal pain and trouble started..." + (show)

I have been on Brukinsa for 31 months….I have diarrhea every morning for about 2hours….I have no appetite…..fatigue is always with me…..back pain and abdominal pain are always there, joint pain too….other then that…oh I forgot I’m going to do radiation for five days because my spleen hasn’t gotten smaller….other then that….

murray3 | @murray3 | Jul 14 2:31am

I have been on Zanubrutinib for 20 months and fortunately have not had to experience any diarrhea, bloating or pain in my abdomen area. I do get periodic bouts of constipation though and when I do, I take a couple of prunes. Works like a charm!