This is what Doxil does to my hands. They recover some during my time off. Sometimes there’s bleeding, and it usually hurts (but just when I bend my fingers). Someone recommended that I try New Skin Liquid Bandage, which I have. I must say, it’s smelly! Plus, when I paint it on, it stings.
In addition to the HFS (hand-foot syndrome), I also have some stomatitis. It’s not too bad, and doesn’t last very long (4 days per cycle, maybe). However, a few days ago, my tongue was actually bleeding. On the worst days, I sort of want to just keep on eating ice cream at a steady rate. I tried toast for breakfast one day, and it felt like I was chewing on razor blades. That’s an exaggeration, yes.
Here’s a link to the Doxil site’s list of possible side effects for your reading enjoyment.
No matter what this stuff does to me, it’s still better than dex!
I’ve been on Velcade & Doxil since January now, so it’s time for another update. There have been a few cycles during which I missed a dose because of a rash, shingles and a trip to Mayo.
I’ve tolerated Velcade & Doxil quite well, with the exception of the skin problems. I also have a problem with the skin on my hands, which we think comes from the Doxil (HFS). Last Friday when I had treatment, I tried a suggestion from on of my doctors. During the infusion, I held an ice pack in each hand. They call this regional cooling, and more information can be found here:
What happens to me is that the skin on my hands splits open and the result is soreness and ever-present bandaids.
During my treatment, I receive some IV dex and benadryl to help lessen the hives (rash) that appeared after my second cycle. Since I started having the premeds, the hives have been practically non-existent.
I also have Anzemet, an anti-nausea drug. I’m not really sure that I need it, but I don’t want to find out. I think the Anzemet may be responsible for a headache I get the night of treatment. When there are so many things being pumped into your vein, there’s no way to be sure.
So far, the drug combo has worked for me. My IgA and m-spikes are still not in the normal range, but my bone marrow biopsy indicates that the % of plasma cells is down to 6.2%, and it was 30% last fall after Rev/dex (20% BEFORE Rev/dex).
I plan on staying with this regimen while I think about SCT and other things, and hope that it continues to work (even slowly) while I ponder.
Here’s some advice I got about Velcade/Doxil from one of the researchers involved in early trials. I thought I’d pass it on.
With the Velcade and Doxil, have they started you on oral Vit B6? When we used to run the Phase I study of that combination, we have recommended pyridoxine (Vit B6) 200 mg by mouth daily. I think this is even over the counter but you can definitely let your local doctor be aware that you are taking this. This drug is to prevent the hand-foot syndrome which is a potential side-effect of the Doxil.
There is also the risk of neuropathy with Velcade. A patient once told me that the Velcade neuropathy (which is more of pain) is different than the Thalidomide/Revlimid neuropathy (which is more of the numbness and tingling sensation). As of this time, there is no approved treatment for neuropathy or formal studies comparing all the drugs that are being used to alleviate neuropathy. We have been using either Neurontin or Lidocaine patch.