Waldenstroms: Can severe neck and shoulder pain be due to meds?

When I was under the diagnosis for Waldenstrom I had similar issues. It was extremely painful to even lay on my right side. It was a brilliant PT who helped by teaching me the Vagus Nerve release. My diagnosis has changed but I still use that nerve hold/ cross reach when tense. Ironically I also found simply chewing gum could ease the pain.

Thanks so much for the response…. So many strange and frustrating issues. I am starting to think I am imagining some. Your reply gave me hope.

@amazon13, what is your current diagnosis? What test result indicated that you didn't have Waldenström macroglobulinemia? How are you doing now?

In December I was diagnosed with T-LGLL after extensive labs. It was a bit of a shock since my sister had Non Hodgkin and my brother MM. It is very rare and very different from any of the cancers 7 members of my family have had.

I wish I had a good answer for how I’m doing. Oral chemo is difficult and the folic acid just as bad. No sun, no sushi and no alcohol presents a challenging life when you live in Hawaii.

My diagnosis is still Waldenstrom’s. Going for 4 infusion and still on oral meds.hair falling out symptoms not much better, family trip in mid April. Doc says it’s ok. But not sure. Only thingivebern looking forward to 🇰🇾, meds give me bad fish tea so that will be an issue

Bad diarrhea not fish tea.. chemo fingers 😏

I’ve had four infusions and I still have a fair amount of neuropathy and have been traveling and have a couple trips planned in the near future as well. As long as you feel well enough take advantage of your ability to get out. Hope you do well with your treatments.

Thank you so much. Just needed that bit of reinsurance. The trip means so much . My daughter a cancer survivor and I have had it planned for over a year.

@zeedee1 I am curious if Z was ever considered. That's what I am on. In my case, it's because I have SMZL, WM and CLL. My doc thought it might work on all 3 - so far so good.

Recently, he has suggested adding a CD20 antibody (obinutuzumab)... I know nothing about it.