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ActiveMSers 01-22-2015 03:18 PM

Gains from my transplant are slipping; begrudgingly weighing Plan F
I'll get right to the point. Gains from my 2010 stem cell transplant to halt my aggressive multiple sclerosis are slipping. Walking endurance has waned and numbness has lurched back into my limbs like unwelcome zombies (not that zombies are ever welcome). For those of you who read between the blurry lines over the past months and wrote to check in on me, I deeply appreciate those offers of a shoulder.

I entered the HALT-MS clinical trial with eyes wide open. It might work. It might not. And if it did work, there were zero guarantees as to how long it would last. It didn't matter. At the time I didn't have much of a choice. After relapsing on three MS drugs including Tysabri in a span of eight months--forcing me to suddenly mothball my new cane for a walker and wheelchair just 3.5 years after diagnosis--options were vanishing faster than those guys who sang the Macarena. The progression had turned relentless and I was essentially out of options.

The transplant saved my life--I was, and still am, beyond fortunate. For four years it helped me feel almost normal again. And I purposefully took every advantage, living life with my right foot firmly on the accelerator, figuratively and literally. It allowed me to drive again, travel the world again, and even snowboard again. But I knew that I might have to write this post one day.

As evidenced by the just released 3-year update of HALT-MS in JAMA Neurology, the success rate of the trial has been unprecedented in MS, with nearly 80% of patients showing no evidence of disease activity after three years, and with some patients seeing a marked reversal in disability, myself included (2.5 EDSS points!). Unfortunately, it appears that with time the treatment's durability is tested, as early numbers suggest fewer than 70% exhibit zero disease activity (relapse, new lesions or EDSS increase) at year four, a figure that drops below 60% at year five. Still powerful results, but far from across-the-board remission.

There are no regrets. Even though today I am walking noticeably slower than I was a year ago, I am still walking. Even though my numbness has increased, I can still feel. Indeed, I'm still far above baseline, when I had to sit to brush my teeth, could barely pick up a bottle of beer, and had to ask Laura to clip my nails and button my shirt and drive me everywhere.

I urge you not to be disappointed. The transplant was a success for me: no relapses, no new or enhancing lesions, and a reversal of some disability. If I go back on treatment (I've been medication-free for 5 years, astounding considering the aggressiveness of my disease), so be it. A stumble in medical science is never a step backward, it is a stubborn shuffle forward. It gets usa little closer to finding that maddeningly elusive cure for our shared disease. Indeed, the future is squinty bright in MS research. When I was diagnosed in 2006 (the same year I started ActiveMSers), I basically had the choice of daily glatiramer acetate shots or interferon injectables. Today the available FDA-approved medications are approaching a dozen and there is a pipeline of future treatments bursting with incredible promise.

I am committed to keep dreaming big dreams and reaching for those stars. Please join me. And I don't want to hear any guff about how stars are just massive, luminous spheres of plasma held together by their own gravity and can have temperatures exceeding 50,000 degrees Kelvin, which would be rather detrimental because of MS heat sensitivity and all. Bah, turn on the AC or put on a cooling vest and get on with it. We have to keep reaching. We'll get there. I am certain of it.

For me, it's time to research and potentially prepare for a Plan F--or more specifically, attempt number six--to slow down this disease. I don't yet know what route I'll take--or if I'll hold to the status quo for the time being--but I do know that quitting is not an option. I'll exhaust the alphabet if I have to.

Life will forever throw challenges our way, testing our mettle, our fortitude, our resoluteness to persevere. That's just life... life with or without MS. It is how we absorb those challenges--not just physically, but mentally--that reroute our destinies. Never forget, hope still reigns.

pushingForward 01-22-2015 03:47 PM

Keep fighting
Dave, if there is one thing we have all learned about you over the past few years, it is that you are a fighter - MS, insurance companies, whoever - bring it on. Know that we are all with you and thank you for sharing your experiences and helping us stay motivated to endure this battle. Your impact to our community is massive and we know you will continue to fight the only way you know how: FULL BORE!

birdkit 01-22-2015 03:55 PM

you are awesome
The world is lucky to have not only a fighter, but one who can tell the story so well.

teena marie 01-22-2015 03:57 PM

Big hugs, Dave. This doesn't seem right. You will be in my universal prayers when I go to bed tonight.

Teena Marie

Marinadca 01-22-2015 03:58 PM


I am sorry to hear that your gains are slipping. I know that your spirit is so strong there is no way you will let this stupid disease best you.

I am glad to hear you're not giving up and remain hopeful. Best of luck with whatever you decide to do.

Fit Paul 01-22-2015 04:01 PM

Stay strong Dave. If you need anything just say the word.

milesandtrials 01-22-2015 05:17 PM

Thank you for sharing what you have been going through. I wish you did not have this going on, however, as you know all too well, the journey is filled with ups and downs. Keep up the good fight and please know that you are in my prayers.

fightback 01-22-2015 05:55 PM

If this was easy, anybody could do it. Keep up the good fight and please keep us informed as to your plan F or G or wherever it goes. Your sense of humor and stubbornness has made my fight against MS easier to maintain. Together we will get through this whatever obstacles get thrown in our way.

migsma 01-22-2015 07:36 PM

Miriam gomez
Dave you're an inspiration. Thank you for everything you do. Not giving up even though my numbness is awful. Know how you feel. New research with glial cells. Wonder how we can all find out who gets to be on the research.
Stay strong. We'll beat it.

AMFADVENTURES 01-22-2015 08:50 PM

Dave, thank you for letting us know, although regrettably it is not better news, to the extent the HSCT programs help medical science unravel the mysteries of this disease it will have been a tremendous success. As people with MS, we will be forever in debt to those who stepped up to test this treatment.

I am personally grateful that you started this site which has collected so many courageous and persistent individuals. It is a huge benefit to face these challenges with like-minded MSers. We are in this together.

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