Worsened Myositis From Chemo

Good morning, @bethesdababe Could you help me out a little with your question? When you’re referring to Myositis, are you talking about muscle and joint pain, weakness, that type of symptom?

If that’s the case, yes, any type of chemo can have you feeling like you were hit by a Mac truck. What type of cancer are you dealing with?

Very debilitating muscle weakness, no pain. Receiving BR for MZL lymphoma and don’t know if I can manage a 4th cycle of chemo, as the resulting cytokine release tends to cause further systemic inflammation, leading to increased muscle weakness! Was diagnosed with cancer-associated myositis prior to starting chemo. Thanks!

Oh gosh, I’m sorry you’re having all this discomfort. Chemo can really knock a person down for the count. Especially when the blood numbers start dropping between cycles. Do you feel better at all when your white blood count starts climbing again?
How often are your treatments? Is the 4th cycle the end of treatment?

The WBC count has gone down progressively w/ each cycle. I’m interested in knowing if anyone in the group has experienced progressive muscle weakness as a direct result of their chemo (mine are every 28 days). Are you able to facilitate this? Hoping treatment can end with C4🤞

I’m curious, with your WBC dropping with each cycle, are you being given Neulasta to help boost those numbers faster? Low WBC can be part of the reason you’re feeling so weak and tired.

My hemonc doc says the chemo is the cause and when it’s done the counts should go back up.
Are you able to put me in touch with others with (preferably) MZL or NHL who are also undergoing chemo (preferably BR but not necessarily)? Thanks

Hi @bethesdababe I found several discussions within the blood cancer group with members who have Marginal Zone Lymphoma.
I’ll post the links below. The first one will introduce you to @stanleykent @cdwilm27 @reneemp @kayak4me and several other members who have SMZL. The link will most likely open with the oldest discussion first. You can change the order to see the most current first by clicking the little box at the bottom of the first discussion paragraph.

Want to connect with others with Splenic B cell Marginal Zone Lymphoma with members
https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/
There is also a support group for Blood Cancers & Disorders https://connect.mayoclinic.org/group/blood-cancers-disorders/

~~Another discussion group I think you’ll be interested in would be this one on Treatment for NHL: https://connect.mayoclinic.org/discussion/treatment-for-mzl/

An easy way to search for information if you think of something you’d like to know, just type into the search bar up on top! You can type in the medication you’re taking, MZL or NHL, etc. If there is information, the search will give you a list of discussions which contain those words. That way you don’t have to wait for me to answer.