It’s been quite a while since I’ve written a post of any sort, but I wasn’t sure what to write or where to start…
It’s now been over 2 years since my stem cell transplant and if I’m honest, the road travelled over the past year and particularly the last few months has been a little rough with a downward slope.
If you’ve followed my *ahem* MS and HSCT journey, you might remember that my 1 year MRI showed no new lesions and that there had even been some lesions reduce in size and all of my symptoms had either improved or stabilised.
My 18 month MRI also showed no new activity, but this didn’t match up with how I was feeling. My walk and gait was weakening and I knew something wasn’t right but the MRI didn’t reflect that.
Had I been ill? No, not a day since treatment. Was I over doing things? No. Rest more? Do more? Too hot? Too cold? UTI? No. Infection? Injection? No. Was it just the proverbial roller-coaster that’s touted on all the forums with a diagram? Was it something new? No. No. Nope, nothing. Nothing aligned. Nothing explained it.
I struggled, particularly over the Christmas period. It’s not my favourite time of year anyway so I became isolated. There were tears, often. There were no answers.
I knew I knew that something wasn’t right.
Then an MRI in January showed some lesion activity. Fuck it. #sorry #notsorry
While it’s not what I wanted to hear, but the reality is that HSCT will not stabilise activity or progression for about 20% of those who undergo treatment.
In much the same way chemotherapy does not always work for cancer 1st time round, there’s a always a Plan B – more chemo, surgery, radiation etc… There’s options that can be put into action or go looking for Plan C, or D, or E…. No one questions that?
So, I’m not giving in or up without seeing this HSCT thing through.
This isn’t so short is it? #soz
Right, so after consulting with Dr. Fedorenko who’d been kept in the loop since I suspected something was wrong he finally recommended I start a course of Rituximab or Mitoxantrone. Both are chemotherapy drugs that have the ability to varying extents suppress the immune system again, kill of the active cells but without the re-infusion of any stem cells. They also won’t make my hair fall out.
Note: Medical descriptions are not text-book definitions or descriptions, just my lay interpretation for explanation purposes.
I went to see my haematologist that looked after me at home immediately after transplant. You know what he said? Nothing. He’s gone and retired. What the?
So I saw his replacement, nice doctor a clinical haematologist and he knew his game and on board. Excellent. No. Don’t be daft, it couldn’t be that easy could it? He understood what was needed and has the ability to administer the recommended drug but blurring the lines of neurology and hematology as HSCT does he wasn’t prepared to captain that ship. So, back onto my neurologist who’s been supportive of my choices but not an advocate for HSCT. She’s all yep, that’s an option but prescribing those drugs isn’t in her scope… ¯\_(ツ)_/¯
So I contact THE GUY here in Australia. Dr. Colin Andrews in Canberra, ACT. He’s the shiz and HSCT advocate. He does not see the blurred lines and he agreed to see me.
Finally a break in the rain, and off to Canberra I go.
Dr Andrews is 2nd nicest medical professional after Dr. Fedorenko and my original haematologist who took himself off the list. ¯\_(ツ)_/¯
I was pretty confident he’d captain the ship and tell me and the others in my medical team what’s what and he did. #squadgoals
He was cautious and considered and wise.
It’s only my walk and gait that have really been affected by this new activity which correlates to the location of the lesion activity on my spine (all other symptoms remain stable or improved) but there’s a chance that I could be transitioning to SPMS so Mitoxantrone it is, Rituximab would be ineffective.
Mitoxantrone is pretty potent and you can only have 10 doses in a lifetime and with that comes a 1/400 chance of developing leukemia. I’m only going to have 3 doses (IV) over 3 months, and there are no leukemia stats on that. Praise be.
What will this do? It may make me ill for a day or two, but big picture wise it will kick the active MS cells back into submission and potentially get my walk back.
So that’s where I’m at. I have a plan. Yay.
With this renewed hope, I plan to get this page and making my FSJ page on Facebook active again. Not just about MS and HSCT but about stuff. Stuff I’m interested in factual or funny, pictures or posts or memes to share or just stuff that I have an opinion on and want to write about and or share.
I named this blog and the FunSizeJaney FB page purposely without MS or HSCT in the title because there’s so much more to me.
So, here goes… #standby.
Note: HSCT forum members, be your own best advocate – it’s not always the bloody rollercoaster that is so often touted. Sadly, there are few of us (more than you think) and many bunker down and put themselves first and do what they need to do without potentially feeling like they’re bringing the community down after all the success stories that are more frequently reported.
The reality is it’s not all rainbows and unicorns.
It is for many, if not most ~ but not all. HSCT is still the way to beat MS and no one I know of has any regrets.