Monday, January 7, 2013

More on Velcade allopecia

Hello folks.  I don't want to keep carping on this situation, particularly as I have consistently counseled people that hair loss in Myeloma treatment is a necessary evil that you shouldn't dwell on...but my primary therapy has been over for three years, damn it, and of all the crappy genetics that I've got, the one thing I've been fortunate enough to have is a good head of hair!

Anyhow, it's worth mentioning only because the guy who has been cutting my hair for the past ten years commented that the hair is definitely different than it was even two months ago -- more frail, brittle, etc.  There is definite thinning, and it's not happening in a normal "male pattern baldness" way.  It's happening on the crown or just behind it, but according to the hair dude I would have shown thinness there when I was 18-20 if it was going to happen, and since I didn't have that, this is not natural.  Hence, Velcade.

I will certainly deal with it and I'm not going to stop Velcade therapy just to keep the hair healthy, but I will not miss this drug any more than I miss Revlimid or Dex.

I document this mostly so those who search for "can Velcade cause hair loss" can find somebody to attest that yes, it can.

Onward and upward.  Hug your hair today.

11 comments:

  1. Hi Nick,
    My husband was diagnosed with MM in 2008 Kappa Light Chain. I have posted here before and enjoy your blog. He is older than you mid 70s, but had always been in excellent health and an athlete so diagnosis came hard as it has for so many others. He did not have a stem cell and was on Velcade for awhile. Besides getting neuropathy from the Velcade, he also had the same thing happen to him with the thinning of hair at the crown. He had always had a full head of hair too no balding so we feel your "pain" just one more thing to deal with. He is currently on Rev/Dex with no further thinning just a whole new set of issues with the lowering of blood counts-the nature of the beast.
    Hang in there. You are a wealth of information and an inspiration to so many. Thank you!

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  2. zgirl, thanks so much -- I really appreciate your kind words! I hate to ask such a vain question but can you let me know if the hair returned after your husband stopped Velcade?

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  3. Yes I would say it came back some still a little thin there,but not that noticeable.He is also on other meds now a blood thinner , bp meds that may also affect this. Did you see the ehealthme website there was a survey done and it appears Velcade does have this side effect, but there are not too many comments to address your concern. A supplement with Biotin may help you, but you may want to wait till you're off treatment. It will take awhile, but I'm thinking you will see it return once you are off the Velcade. I totally understand your concern. I have that good hair gene too.
    Mary Lou

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  4. Thanks Mary Lou! :) Much appreciated! As you noted, there isn't a lot out there about this side effect. I spoke to the people in Arkansas and they said they'd not heard of it (which I find hard to believe, actually) but when I went to my local onc, he said "it can happen, sure." So I think we're doing a bit of a public service to get this out there.

    Happy New Year to you and your husband -- thanks again for your support and may 2013 bring good health to us all! :)

    Warmly,

    N

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  5. Hiya, Nick. I, too, have experienced a similar hair raising (or lack thereof) experience. My barber articulated the same message as yours: my hair is of a much finer texture than it was pre-MM and I now have a very thinly covered crown. While I'm 54, his humble medical opinion is that the chemo hastened my 'hair age'. Keep in mind, he's the same guy who asked, with a straight face, if I had tried that coconut smoothie and coffee enema thing in my cancer battle. Not sure why I still let him near me with shears. Anyhow, VRD maintenance has seemed to take it's toll on my pate. Four years after dx, my brown 80% / gray 20% ratio has completely reversed. And where my forehead once showcased a peninsula of hair, my present lock topography resembles an island, Oahu to be exact. I wonder if someone could transplant it to my crown? As always, all my best to you!

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