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Lots of folks have asked me why I opted to enter a risky stem cell transplant trial. There are a number of reasons, some of which are perfectly rational, others throw caution to wind.
1) Disease aggressiveness. A relapse in May 2009 started a rapid increase in disability. I was a 2.5 on the EDSS scale (see separate post in this forum). By August, when I applied to HALT-MS, I was a 4.0. In October I was a 5.5. By January, after a third relapse with little remitting, I was a 6.5, meaning I needed a walker and could not walk 100 meters even with a cane. It takes the typical MSer years (or decades) to jump that far in disability and not remit. After my last January relapse, I eventually remitted to a 5.5, able to walk 100 meters without aid, the maximum EDSS score allowed by the study.
2) Fitness status. Throughout this time I was and still am exercising--and exercising hard--daily. But since I stopped driving in September 2009, getting to the gym is more challenging. I knew my fitness level would not be this good a year or two in the future.
3) Failure of Copaxone and interferons. While Copaxone was great for the first three years, I switched to Rebif after the May relapse (after failing to get into a trial for Alemtuzumab). Rebif didn't slow down the disease at all for me, and I had my one and only Tysabri infusion in December. My FDA-approved options were evaporating
4) In relapse-remitting phase. Research has continued to show that MS is most treatable in the relapse-remitting phase. Secondary progressive is far more resistant to current medications. If I was going to go aggressive, the time was now while I was still RRMS.
5) A chance to change the future of MS. I've been involved in clinical trials since I was diagnosed in March of 2006. If I can make a difference in your future and the future of others with this disease, bring it on!
6) Fate. On about the same day I applied to the study, the study closed to new participants. My neuro was out of town, so I couldn't get his opinion. While on hold with an airline that same day, I heard the song "Brand New Day" with the refrain "For the first time in a long time I know I'm going to be okay."
7) No regrets. I've lived a pretty crazy life on the philosophy of no regrets. I don't put off something to tomorrow if there is some way to make it happen today. My basic "bucket list" was checked long ago (still need to kiss Laura on a moon-lit night in Paris, though). If I opted not to do the study and I got dramatically worse, I would wonder forever "what if." It would eat me up. ... Now God forbid I die in this study, but I won't regret it, because, well, I'll be dead.
So those are my reasons... and I have no regrets.
1) Disease aggressiveness. A relapse in May 2009 started a rapid increase in disability. I was a 2.5 on the EDSS scale (see separate post in this forum). By August, when I applied to HALT-MS, I was a 4.0. In October I was a 5.5. By January, after a third relapse with little remitting, I was a 6.5, meaning I needed a walker and could not walk 100 meters even with a cane. It takes the typical MSer years (or decades) to jump that far in disability and not remit. After my last January relapse, I eventually remitted to a 5.5, able to walk 100 meters without aid, the maximum EDSS score allowed by the study.
2) Fitness status. Throughout this time I was and still am exercising--and exercising hard--daily. But since I stopped driving in September 2009, getting to the gym is more challenging. I knew my fitness level would not be this good a year or two in the future.
3) Failure of Copaxone and interferons. While Copaxone was great for the first three years, I switched to Rebif after the May relapse (after failing to get into a trial for Alemtuzumab). Rebif didn't slow down the disease at all for me, and I had my one and only Tysabri infusion in December. My FDA-approved options were evaporating
4) In relapse-remitting phase. Research has continued to show that MS is most treatable in the relapse-remitting phase. Secondary progressive is far more resistant to current medications. If I was going to go aggressive, the time was now while I was still RRMS.
5) A chance to change the future of MS. I've been involved in clinical trials since I was diagnosed in March of 2006. If I can make a difference in your future and the future of others with this disease, bring it on!
6) Fate. On about the same day I applied to the study, the study closed to new participants. My neuro was out of town, so I couldn't get his opinion. While on hold with an airline that same day, I heard the song "Brand New Day" with the refrain "For the first time in a long time I know I'm going to be okay."
7) No regrets. I've lived a pretty crazy life on the philosophy of no regrets. I don't put off something to tomorrow if there is some way to make it happen today. My basic "bucket list" was checked long ago (still need to kiss Laura on a moon-lit night in Paris, though). If I opted not to do the study and I got dramatically worse, I would wonder forever "what if." It would eat me up. ... Now God forbid I die in this study, but I won't regret it, because, well, I'll be dead.
So those are my reasons... and I have no regrets.
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