I've been fortunate. I haven't had neuropathy issues in the five plus years since diagnosis. With treanda (bendamustine) I did experience minor neuropathy. I simply had a loss of sensation in my fingers. No pain and feeling came back as soon as I stopped the drug.
Over the past few months I been getting more aches and pains in my joints and legs and hands. It hasn't been bad and I chalked it up to age, Kilimanjaro training, and a side effect from dex. Lately though the pain has intesified, usually at night and when I wake up. I mentioned this to Berenson last week and he quickly chalked it up to arthritis, and not at all related to the myeloma. Today I saw Phan and I talked more about the aches. He ruled out arthritis immediately and said it is obviously is neuropathy. He said I am too young to have arthritis all over my body.
I thought neuropathy was mostly tingling, numbness and pain in hands and feet. "Nope" says Phan. Can also be joint and muscle pain caused by nerve damage. I have been getting velcade through my port. It's typically now given sub q...a shot in the belly. The sub q is supposed to lessen the velcade induced neuropathy. Up until today I have passed on sub q. The infusion has been working fine. But today we switched to sub q, assuming my pain is neuropathy. We shall see.
I also have the mystery bruise and soreness in my right arm. Both docs say my bones are fine and not to worry. Phan today suggested we do a bone survey to be sure they're good. It's been well over a year since the most recent survey. Phan also said we'd do some kind of liver enzyme test to determine if my muscles are breaking down. I know Pat K would discuss how dex impacted muscles.
We'll do the tests, continue with sub q velcade, throw yoga into the mix and keep working to take control of the aches.