Story on a patient's experience with chemotherapy

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Story on a patient's experience with chemotherapy

Postby Apuman » Fri Apr 02, 2010 2:43 pm

Long, long ago (about a year actually), before the discovery of CCSVI, this seemed like it was the most hopeful thing on the horizon for sufferers of MS.

<shortened url>

This was one of the first things I had looked at after my dx. I had personally decided not to persue being part of these trials, as killing off my entire immune system seemed like a fairly extreme mesure for someone in the early stages of MS. On the other hand, for someone like this woman, being severely disabled, it may offer a great opportunity to regain what's been lost.

Studies such as this also seem to offer good evidence that there is something out of whack with the immune system. If wiping it out and letting start from scratch can stop MS dead in it's tracks, then it would stand well to reason that the immune system is attacking the nervous system at least in part because there is something wrong with it's "programming."
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Postby mose » Fri Apr 02, 2010 5:36 pm

what concerns me about the whole chemo treatment angle is the possibility that the inflammatory response being knocked out is actually 'proper' immune response to damage. That would lead me to believe that the neurodegenerative element of MS would continue in absence of inflammation and would again manifest itself in the future.

I guess time, and patient follow-up, will tell.
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Postby Apuman » Sat Apr 03, 2010 10:21 am

I can't say I'm without reservations myself, for instance: Wiping out the immune system would effectivly wipe out any immunities developed during one's life. You're basicaly deleting everything on the hard drive and starting from scratch. Without a doubt, there would be unforseen consequences from this type of treatment.

What makes me think that it's not a proper immune response, is that after a "reset", the immune system no longer seem to be attacking the nerve tissue. It's possible that the immune system may take time to develope a proper response, but just as you say, time will tell.
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Immune Ablation

Postby tashenoir » Sat Apr 03, 2010 1:22 pm

Immune Ablation is what they call it at RUSH University Medical Center. I will be having it done sometime in May. I've already started protocol and have started all the inclusion testing.

Yes, I will lose my entire immune system, but the one I have now is telling some of my white blood cells to attack me. Once I'm "rebooted" all the mature white blood cells will be gone....my system wont know it's okay to have the MS white blood cells in it and it wont be producing them. I will take Copaxone for 6 months after the chemo, because it has been found that Copaxone has stopped the immune system from excepting MS in the white blood cells in the future. Will it? We are still in research study phase, bit I do know I am one attack away from a wheelchair, or one attack away from blindness, or one attack away from bed ridden.

We don't know what the next attack will do, or what it will take away from us. I am mobile now. I walk unassisted. I can't run and have spasticity in my legs. I have no vision problems, but my hands tremor and I have an over active bladder.

I have had 6 MS attacks since 2006 and have been on Avonex, IVIG, and Tysabri. I choose to try this study after researching and talking to several patients that have had it. I followed the last one all the way through it. Her name is Michelle Colledge and she was discharged just before Christmas. She's doing great and is one of my inspirations. I have a list of 10 others.

I want the chance to stop it...not slow it down and wonder what my next attack will do. Stop it!!! I am going in with a positive attitude and hoping this research helps others further along. It seems to offer the most before you reach SPMS. I am blogging it all, if you're interested, http://rebootingsteph.blogspot.com

There have to be those of us willing to put ourselves out there for the research to continue and the monster to be defeated. If I only have 5 years of freedom from MS...it will have been worth it to me. I hope it's worth more to the doctors that are figuring this all out for the rest of the MS patients.
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Postby tashenoir » Sat Apr 03, 2010 1:27 pm

:D Just realized Apuman's URL is Michelle's story...LOL. That's awesome! She has a blog too. You can also google rebooting Kathy , also HiCy for amanda. I have more if you want them. :)
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Postby LR1234 » Sat Apr 03, 2010 1:45 pm

I fancy the idea of revimmune but I won't do it until I've had children as there is a risk it could cause infertility.
I think CCSVI and Revimmune combo plus lowering already stored iron is the way to defeat MS for sure:)
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Postby tashenoir » Sat Apr 03, 2010 5:02 pm

I fancy the idea of revimmune but I won't do it until I've had children as there is a risk it could cause infertility.

100% agree....can cause early menopause too!
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Postby Apuman » Sun Apr 04, 2010 9:50 am

tashenoir, I hope the treatment gives you positive results too. I may go and take a looksie into your and Michelle's blogs. Thanks!
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