Hi FSJ Friends,
Since I last wrote a proper blog post I’ve been #busy #notbusy working part time, having weekly appointments (PT + OT) + 3 x infusions of Mitoxane and my first proper holiday abroad in 3 years.
I’ve also been struggling with my gait, increased weakness in my hands and overall greater disability. Doing *normal* stuff is hard.
Having the pulses of Mitoxantrone recommended by Dr Fedorenko and Dr Andrews to get me back on track and put my MS back into remission has unfortunately not been effective.
Another visit to Dr Andrews in Canberra this past Monday confirmed it.
So what doe that mean?
My initial diagnosis of RRMS has essentially transitioned to SPMS and it’s proving to be resistant and the disease is progressing. Choosing to take conventional DMDs (with their own inherent side effects and risks) would have little if any effect and I would continue to deteriorate.
We asked what that would mean exactly? Ability to walk would continue to decline, hand function and then cognitive abilities would probably deteriorate next. Geezus.
Pre-empting this situation I spoke with Dr. Fedorenko in Moscow some weeks ago and he was open to performing HSCT again with the same method but different and more aggressive protocol* (chemotherapy).
Dr Andrews’ recommendation to head to Moscow for HSCT again was clear.
“It’s your best shot at stopping this disease, and Dr Fedorenko is the best in the world.”
At the airport, even before leaving Canberra I emailed Anastasia (Dr Fedorenko’s Assistant / Patient Liaison) and called the visa agency.
Less than 36 hours later, I was allocated a place in Moscow. In November. SIX WEEKS.
So, with that I’m off again. Moscow 2.0.
It’ll be the same, but different and it’s going to work.
I trust Dr Fedorenko and the process.
You ask, why didn’t it work? Just like chemo for cancer doesn’t work first time around for everyone, neither does HSCT. +/-15% of people who undergo HSCT will not respond or only respond for a limited period of time, and MS will continue it’s unpredictable course.
With the support of my family, I’m back on track to be the best daughter, sister, aunt and friend I can be without (active) MS.
*I will share details of the adjusted protocol in a future post.
ps: I apologise for being sweary, and please don’t be offended; I think it’s warranted.