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Neuropathy?

Neuropathy?

Has anyone been on the RVD cocktail for multiple cycles and *not* develop neuropathy? Right now that scares me the most because although my numbers look bad, I am really not having any symptoms that are impacting my life. (I do have anemia and lytic lesions in my skull, so I really do need to start treatment, but it's hard to think about when right now I'm feeling good. )

edited, originally posted 2 months ago
A MyMyelomaTeam Member said:

Christine, I have terrible neuropathy. I’m using oxycodone to get through the day.

Reading your post it sounds as you haven’t started treatment yet. Look into the possibility of Darzalex FasPro (Darz) being added to you initial RVD regime.

When I went to Johns Hopkins (JH) for a second opinion, he said to add Darz - it would result in a faster and deeper remission. I had normal Labs in 6 weeks and I’m MRD Negative without a SCT.

JH stated to me they’re seeing 20% getting similar results on the same regime.

posted about 1 month ago
A MyMyelomaTeam Member said:

After about 1 year on revlimid and no real problems except some stomach issue (nausea sometimes). The treatment has helped me with bone issues and control of the disease but everyone different. What I have heard is that if you develop reactions to the medication there are treatments and other medications so lots of options.

posted 2 months ago
A MyMyelomaTeam Member said:

Christine, the medications they have for myeloma are much, much better than the ones they had a few years ago. The benefits for sure outweigh the risks. Love Donna 💗

posted 2 months ago
A MyMyelomaTeam Member said:

We are all different. I have some neuropathy on the bottom of my feet. It isn't bad. My doctor has me taking alpha Lipoic acid and B Complex. It seems to help. 💜

posted 2 months ago
A MyMyelomaTeam Member said:

Sorry about the neuropathy. Guess I am fortunate as I didn't experience it and hopefully never do.

posted 2 months ago
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