Paul from the MS community: So about that, maybe you can tell us a little bit more about your experience with the treatment itself, how it felt for you, how are the side effects?
Dave Bexfield, MSers Expert and founder of Active MSers: The treatment, outside the clinical trial, because the clinical trial does involve a lot more effort and time and commitment, but in general I went into the hospital for three weeks.
Before that, I’d probably need to be around the hospital for a week or two to get the stem cells out of the blood, but then they harvest the stem cells and then freeze them. I was in the hospital for about three weeks, the first week could have been, had chemotherapy every day and kind of chilling. And then you get transplanted, it smells like corn, weirdly, it smells like corn.
And then more side effects start happening. For me, yeah, I got sick, I puked a few times, but nothing crazy. I did actually pass out once. I lost all control, pretty much, of my bodily functions, unfortunately, for a few days. That was a real kind of challenge, especially when you go to the bathroom and you don’t want to, and then the nurse cleans you up and then, like then, yeah, you’re in a mess and then she’s got to clean up everything all over again. So that was a challenge. For about three days I couldn’t get out of bed, and then once I started to recover – this is about the eighth, sixth or eighth day, something in that range – I started to use my walker and going around the hospital.
It’s sobering when you’re going round the hospital, because there are other people in there going through transplants – lymphoma, this is really common – and it was sobering to see other people and I didn’t know what they were ill with. And then after the treatment then I had to stay within about – this was after three weeks – I had to be within minutes of the hospital for the next two weeks, because if an infection sets in, it can kill you really, really fast. The doctor said you’ve got to stay right nearby and if you’ve got any problems, come in, not be by yourself. So someone was with me the entire time, which made it a little challenging for grocery shopping, stuff like that.
But after that, I didn’t have many side effects, the biggest side effects from the treatment long term, there is a risk of blood transfusions in my future and I am sterile. And then I also need to take Viagra now, I am completely knocked out by this transplant. But yeah, not too bad.