Monday, April 12, 2010

Pomalidomide Side Effect?

Pomalidomide keeps my cancer stable, but has significant side effects:
  • Bradycardia (reduced heart rate). This doesn't bother me, but it does some people.
  • Blood clots. These can appear as deep vein thromboses (DVTs) or pulmonary embolisms. They are life-threatening, but I haven't had one. I do take an aspirin a day.
  • Peripheral neuropathy. The bottoms of my feet are numb in some places, and I have one thumb that tingles. From what I hear, my neuropathy may be fairly typical.
  • Neutropenia, which is a low neutrophil count. Neutrophils are a major front-line fighter in the immune system, and without them we cannot easily fight off infections.
And I have an infection. At least four weeks ago, I apparently whacked the back of my hand against something, possibly outdoors working on a tree that we removed and cut for firewood. A bruise appeared, and a red circle around a tiny puncture. In the ensuing weeks the infection spread to three knuckles and the tissue between them, now overtaking most of the back of the hand and causing enough swelling to make it quite impossible to close the hand.

We've tried three different kinds of antibiotics in those weeks, with varying results. None of them reversed the infection, but one or two may have halted or slowed its advance. The one that may have worked the best, Biaxin, was stopped because liver enzymes appeared to go up, one of the risks of Biaxin. Now my local primary care physician, Dr LL, has me on a fourth antibiotic, doxycycline. We'll see how that goes.

Neutrophils may be important here - we really don't know HOW important, because we don't yet know the type of bacteria or fungus causing the infection. People with normal immune systems also get infections, but I sure haven't had one like this before. If necessary, we can stop the pomalidomide for a week and still remain on the study. But the myeloma is stable now, and I really don't want to mess that up!

Otherwise, though, life is wonderful. We three ran another marathon last Saturday.

Kansas in April


  1. Don,
    Have you tried soaking it in salt water? That helps sometimes. I hope it begins to heal really soon. Take care, Donna

  2. Hey Don,

    I just started Metanx to try to help the PN. I'll let you know how it goes.


  3. Hi Don, some time ago I had an infection on my GP wanted me to take antibiotics to clear it up, but when I got home I decided to try something that I had read about but never done before: I put some Manuka honey on the infected area (at least 15+...mine is also organic), then a bandage. After throbbing a bit, the pain stopped, AND after a few days the infection was gone. I didn't have to take antibiotics! If I hadn't seen it with my own eyes, I wouldn't have believed it (I wrote a post about it, too)...amazing stuff. You might try that...I read that they are beginning to use it in hospitals to fight MRSA, e.g. Good luck!

  4. Hi Margaret,

    Sounds messy! But if it works ...
    What does 15+ mean? Maybe I don't know what Manuka means. We do have local organic honey here.

    Problem is that there is no open sore at all. The infection comes from a bloodless puncture, so Everything is under the skin. You think it would still work?

    It IS getting better, but oh so slowly. I can barely see progress from one week to the next, let alone one day to the next.

  5. I don't know about puncture wounds, but I think it might be worth a try. And if it doesn't work on your infection, you can take spoonfuls of this honey, which is very tasty. Here is some info on Manuka honey (manuka is the name of a bush in New Zealand), it will explain the UMF business, too:

  6. Oh, I forgot to say: it isn't that messy (unless you add curcumin to the mix, which I did try one time). You put a dab of honey in the spot where the infection is, then cover it with a bandaid. Easy peasy.

  7. Wishing you well with that hand infection Don, this is something H has, very low Neutrophils and always something to keep a very close eye on,even with shaving. Do hope you get to grips with it very soon.
    All best wishes.

  8. "Bradycardia" so now I know what its called. I will have to google to figure out how to pronounce it. I get tired of telling people I have "... that thing where doctors tell you if you feel faint or dizzy to stop activity/exercise..."

  9. HI Don
    I'm a hands on person and am always working on my mountain bike, putting up shelves, that kind of thing. I often bruise or cut myself. The cuts do last quite a while as I'm also on Pomalidomide and a person living with MM. (diagnosed in 2005). What works with with me is a thorough washing with a antibacterial everyday and keeping the cut coated in Neosporin cream and a bandaid. Cuts usually go away in a couple of weeks with little scarring. Hope that helps!

    Good luck,

    1. Thanks Herb,

      Good suggestions. How long have you been on pomalidomide?