Paul from the MS community: So if you had the chance to do something else instead of HSCT, would you consider that? Say, somebody at this stage having the option of HSCT and something else, would you consider something else?
Dave Bexfield, MSers Expert and founder of Active MSers: I think people need to be realistic about the treatment. And I don’t think, I think a lot of people see or hear stem cells and say, oh my god, that’s the most amazing thing ever, it’s just so perfect, this is going to be it and I would never do Tysabri or Lemtrada or Ocrevus.
And those are all really powerful treatments and they’re really effective and there is a much lower risk of mortality. I mean you’ve got a ten times higher risk with HSCT than you do with Tysabri of dying from PML, even getting PML. So I think people need to understand that this is a lifeline treatment and take it very seriously. I mean I’ve heard about this email from a friend, which is, it’s a serious email. She wrote me in, this was last year, and she told me hey, she was going to get HSCT, she was really excited about it.
And I said maybe you don’t want to do that, you’re doing okay. She’s a professor, she was actively teaching. Her MS was a problem, but not a big problem. Anyway, there’s a certain email, she said, she said Dave, you may recall, I did HSCT five months ago, well, my thoughts of victory have faded quite quickly. The treatment and high dose chemotherapy have caused more harm than good.
I’ve had four hospitalisations from complications, I now have found that I am dwindling quite quickly, my immune system has never regained working condition, I have lost cognitive function, liver function, an inability due to chemo eating away my GI tract. Please help, get the word out that HSCT is a, quote, sledgehammer approach, with significant mortality. I’m entering hospice after a long hard fight, please warn others to cautiously approach new treatments until its safety is well established.
That was the last email I ever got from her. So, people need to understand, yes, this treatment is lifesaving, but it can also take your life, and I just want people to understand that it’s a very serious full-on commitment.