I've been pretty fortunate that in 6 years I haven't had much of an issue with neuropathy. Berenson has me taking 600 mg of Alpha Lipoic Acid every day that is supposed to combat the nerve issue. Seems to be working. Only when I was on Treanda (Bendamustine) did I have some neuropathy. It wasn't painful, instead I had a loss of feeling in my fingers tips. It made it hard to hold things and I definitely couldn't feel textures. It was an odd sensation, but all feeling came back as soon as I went off of treanda.
Since November 2016 I've been on darzalex (daratumamab) and pomalyst (wow, a year, time sure does fly by). In the past couple of months, I've gotten an occasional stabbed by a needle feeling in my ankles or feet. It's very quick and is not an issue. But in the past few days, I've begun experiencing sharp pain in my pinky fingers when they are exposed to cold water. It stops when my fingers warm up, but when it hits, it is pretty noticeable. This morning, and despite the absurd heat wave we're having, it was cool while I walked Gracie and I felt some pain in my pinkies simply from the weather. Sounds like neuropathy to me. If it stays like this, no problem, but if it increases then I'll be a little frustrated. We shall see.
Today is my quarterly dermatologist visit. My skin is rather vulnerable given my lowered immune system. Hence old damage or viral things that were able to remain dormant, now have a chance flourish. I've had 3 MOHs surgeries for skin cancers on my forehead. I've had two other surgeries in the past 3 years for skin issues. Recently I was able to clear up warts on my finger tips, but now they are back like crazy. So we'll see what the dermo says in terms of potential new tactics to fighting them.
Tomorrow I have a bone density test. My bones have been good since diagnosis (kidneys are another story). But, per Dr Phan, years of uninterrupted steroid use can weaken the bones. I don't think I have bone issues, but I can say that recently when I shake a person's hand, I feel like my right hand is being crushed. The bones feel tender and fragile.
The good news is my myeloma numbers remain awesome. Darzalex is doing the trick.
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