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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMyelomaTeam Member asked a question ๐Ÿ’ญ
Blountville, TN

My enzymes got out of wack in October and I was also sick and off treatment. Number went up .5 point maybe they will come back down

November 18, 2023
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A MyMyelomaTeam Member

Velcade is notorious for causing neuropathy. It works great on myeloma, but the neuropathy can be debilitating. Let your doctor know ๐Ÿ’•

November 19, 2023
A MyMyelomaTeam Member

I have terrible neuropathy in both feet and slightly in hands. It was a side effect of velcade. I can happily say that I'm now in total remission after chemo followed by SCT but now living with severe neuropathy is a nightmare. If u r experiencing this while on velcade ur Dr should adjust the dosage. Good luck and prayers for you.

November 18, 2023
A MyMyelomaTeam Member

I took Valcade for two months. I had horrible nerve pain in both legs after the first month. I told my doctor after two months that it was not worth what I was going through. Came off of it. And three months later started Pomalyst and darzalax. Had no problems with either and went into remission. Had a SCT transplant and do far am still in remission. The neurophy got much better after about 2 years. Still have some numbness but is very tolerable. Some people tolerate Valcade very well and some don't.

November 18, 2023
A MyMyelomaTeam Member

Exercise helps my neuropathy. I usually get up in the middle of the night a couple of times and walk around for about 10 minutes. It seems to relieve it enough to go back to bed.

November 26, 2023
A MyMyelomaTeam Member

B Complex and Alpha Lipoic acid is supposed to help. Exercise is also supposed to help. Let your doctor know.

November 25, 2023

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A MyMyelomaTeam Member asked a question ๐Ÿ’ญ
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what