The HSCT Chronicles: Was HSCT Successful? -

Wednesday was the day that all my months of waiting came to an end. I found out whether the HSCT treatment I had for my MS has been successful – my Neurologist gave me the results of the MRI with contrast that I had back in July.

The Treatment

For those that have been following my HSCT Chronicles, you will know that my treatment actually started back in November 2018. This was when I had my initial blast of chemotherapy, followed by a week of injections to stimulate my stem cells and then my stem cell harvest (when they removed them). Another 4 bouts of chemo in January to wipe my old immune system out and then the cells were transplanted back into me on the 15th. After three weeks in isolation in the hospital, I was home to recover.

When I write it all down, I almost can’t believe it was me that went through all of that. I had to deal with hair loss, chemo sickness, bone pain from the injections, D&V in the hospital and time away from friends and family. And why? I have Multiple Sclerosis. Multiple Sclerosis that is in the secondary progressive stage but with the added complication of active disease. Although I knew that HSCT would be hard, to me there was no other option but to go for it – I’m quickly losing mobility, I have given up work due to my MS symptoms and I want to limit the chance of even further damage.

Although I knew that HSCT would be hard, to me there was no other option but to go for it #MS Click To Tweet

The Results

The night before my Neuro appointment, I realised just how nervous I was of getting the result – I slept for about 4 hours in total. What if the HSCT didn’t work?

Well, I am pleased to say that, so far, it has!!

“There are no new lesions since your last MRI in January… you are stable.”

I am so, so pleased with the result. Have my symptoms improved? No. But I have reduced the chance of even further damage occurring and, for me, that is an undeniably positive result.

Would I do it again?

Undoubtedly, yes. HSCT was a hard medical procedure to get through, and apparently I now have a higher chance of getting some health problems – such as cancer and thyroid problems – but I now feel like I am doing everything that I can do to treat my MS. As Professor George Jelinek of Overcoming Multiple Sclerosis fame, says, “anything it takes.”

I have to say, that I really feel that HSCT should be a procedure that is available to more MSers. Here in the UK, it is only offered to those who have relapsing MS or progressive MS with evidence of continuing inflammatory disease, for whom Disease Modifying Drugs (DMDs) have proved unsuccessful. Only two hospitals currently offer the treatment. The cost of HSCT is expensive – apparently £30,000 – but then that is comparable to some DMDs and it has thus far proven to work much, much better. Unfortunately, though, the trials found that it didn’t work in the same way for people with SPMS without active disease.

What Now?

My plan now is to continue to focus on the Overcoming Multiple Sclerosis lifestyle – although the HSCT has worked, I still have MS. I still have crap mobility, word-finding problems and fatigue. All my reading about HSCT tells me that there are instances of lesions reoccurring after several years relapse-free. So, I’m not going to rest on my laurels – I am going to try and be kind to my body by eating well, stretching, keeping mobile and making lifestyle choices to help reduce stress.

I am going to try and be kind to my body by eating well, stretching, keeping mobile and making lifestyle choices to help reduce stress. #MS Click To Tweet

My next neurology appointment will be in January when I will have another MRI, and the nurse will talk to me about having my inoculations again- at least those ones that I may not have retained immunity to..

And for me personally? I want to look ahead and get back into doing a small amount of work, private speech and language therapy. I want to grow my hair longer and have all the chemo curls cut out by March. Why March? That’s when I am going to Australia to see my sister… and I just can’t wait. Ultimately, I just want to enjoy how I am now. My MS may still progress – I have more than 25 years worth of damage that HSCT can’t ‘fix’, after all – but I feel happy that the inflammation has subsided and that I have lessened my chance of further lesions.

Till next time