HSCT - A proposed cure for MS

[Looking88]

If you were going to get the HSCT BEAM protocol, would you have to wait a certain amount of time so your current MS drugs cleared from your system before getting HSCT? Or could you stay on those drugs up to the point you began HSCT treatment?

Thanks.

[georgegoss]

Nice article link, Lyon. I enjoyed reading it. Thanks for that.

HiCy being one of the ealier protocols (1990's) originally used for some forms of cancer treatment that also showed an immune reboot for autoimmune diseases. At a high enough dose it definitely shows curative efficacy but as indicated in the article it seems to have a reasonably high treatment risk. I "think" that's why the current HSCT immune reset trials use evolved protocols (such as BEAM used in HALT-MS) that more slowly & gently drop the immune system so as to reduce treatment mortality risk. Good news so far is that there have been zero deaths in the phase II trials (three trials in the US and one trial in Canada), interestingly none of which use HiCy. But this info is still great to gain a better understanding of the underlying science!

[Lyon]

..

[georgegoss]

Very astute comments, Lyon. Helps to elucidate the relevant issues.

And sorry for my previous mistake. I stand corrected. . . .

Of the current phase II HSCT trials, Dr. Burt's MIST trial at Northwestern utilizes either one, of two different protocols for his treatment regimen. Both of which (may) incorporate the use of cyclophosphamide, as follows:

Fludarabine + Cyclophosphamide or Campath-1h

- or -

Cyclophosphamide + Anti-Thymocyte Globulin (rATG)

So clearly cyclophosphamide has desireable treatment properties (mainly strong lymphoablation, and at higher doses myeloablation) in the right setting and is also a very useful agent.

[Looking88]

This may sound silly, but not to cat lover: How long after HSCT treatment can you g back to holding your cat(s)?

[georgegoss]

Hi Looking88

Although I don't have any pets of my own (just one young child in daycare. . . . which may be something to be more infectiously-concerned about directly following treatment), your question doesn't sound silly to me.

I have heard of no hard-and-fast rule regarding the subject of pets. I think most oncology doctors that oversee HSCT treatment are usually more concerned about farm or wild animals as the main risk factor. The doctors do suggest to remain clear of pets for "a few months." So without any hard data, if I were in the same situation as I was previously, I would probably be more concerned about shaking hands with strangers as opposed to being around my own sequestered pet for the first couple months following the transplant. (HSCT patients need to to take Bactrim antibiotic as prophylaxis for the first six months post-transplant.) After the first couple months I personally would not worry so much about it so long as my pet were not around a lot of other un-restrained pets with exposure risk.

Bottom line. . . . I just used common sense following my transplant as my main defense against possible infectious exposure. (For me, I never had an infectious complication with my (then) compromised immune system.) I can imagine for many people a pet might be the same as a family loved-one. It wouldn't be fair to be separated for such a a long time. For me, I would go for two months post-transplant and be sure my pet had a good bath before getting back together.

[georgegoss]

BTW Looking88. . . . Sorry to miss noticing your previous post. . . . .

A 6-8 week washout period for existing MS treatment drugs should be fine. I stopped my Avonex 6 weeks prior to treatment and everything worked out fine.

[Looking88]

Thank you for both answers.

[georgegoss]

I do need to read more about the procedures for HALT-MS and Beam. BEAM I've never heard of and HALT-MS I just assumed was a variation of HiCy. I do remember a month, maybe a few months ago someone mentioning that they'd been treated and that no Cyclophosphamide was used.....actually I think someone supplied an article because I read first hand what the procedure was and it DIDN'T involve Cyclophosphamide.

Actually Cyclophosphamide was developed in 1957 and mid 60's started being used against leukemia in which the bone marrow definitely is the source of the problem so High dose cyclophosphamide was used to kill the immune system and other chemicals were used to kill the bone marrow.

When people bitch that I'm interested in dangerous MS procedures (HiCy/Campath) the truth is that my interest is in the practice of rebooting itself and not actually the practice of killing MS with a hand grenade. The point is that with time and practice we will see improvement after improvement (possibly the chemicals for Halt-MS and BEAM are improvements over cyclophosphamide) until something so specific that will ONLY eliminate the factors responsible for MS and literally wouldn't be invasive or dangerous at all.

Please keep us up to date on how you are doing and I'll spend some time familiarizing myself with BEAM.

I just wanted to share this video about HiCy that Scott Turner forwarded to me. Although still quite early in the clinical data cycle (most MS treated-patients only now a year post-treatment), the early results look very promising and positive. I sincerely support this line of work and hope that cyclophosphamide treatment in the future will show comparable results with BEAM stem cell transplantation (now nearly ten years of positive data). Time will tell. But regardless, even now HiCy looks way far ahead of CRAB drug efficacy. I'm all for that!



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[abdurrahman]

Dear George
I have come across this forum through my research for my son who has been diagnosed with MS (remitting-relapsing) two years ago. We are really interested to explore this option as we have nothing else to try. I would like to make contact with you to understand your experiences and opinion on how best to proceed. Also, how are you doing since the treatment?

Would love to hear from you.

Regards
Abdur

[reallyreally]

Dear George
I have come across this forum through my research for my son who has been diagnosed with MS (remitting-relapsing) two years ago. We are really interested to explore this option as we have nothing else to try. I would like to make contact with you to understand your experiences and opinion on how best to proceed. Also, how are you doing since the treatment?

Would love to hear from you.

Regards
Abdur

You can see George's information on his website. themscure.blogspot.com

I had a similar procedure done 5 months ago at Northwestern in Chicago under Dr. Burt as part of a phase 3 clinical trial.
http://www.stemcellresearchfacts.org/dr-richard-burt/

You will have supporters on this website; but also have many people on here that tell you that it is WRONG thing to do. So, do your own research. Not sure I will post my 6 month follow up results; don't feel like starting a HUGE debate over it. So you can private message me if you would like.

[JoycieB]

Dear George, I am the mother or a 42 year old daughter who has suffered with diabetes since she was 18, and MS was diagnosed in 2007. Just before Christmas she had a relapse, she spends each day in her bed now, and we are desperately trying to find the best place for her to go for stem cell therapy. We would be eternally grateful if you can tell us where you had your treatment.
Yours Sincerely
JoycieB. P.S. We wish you a long, happy healthy life.

[seeva]

HI George please advice me that i have SPMSlast 15 years and i am over 6o hers old will this HSCT treatment works for me
regards
seeva

[seeva]

HI GEORGE my name is seeva as per your reply Ihave send few letters to Mr. Markus Thalheimer 2 weeks back no reply from him so far. I have mention your name too. any other ways I can contact GERMAN HOSPITAL I need your help. please let me know how much it cost me.
regards
seeva

[Pesho]

I'm on my way for HSCT myeloablative. Have a bit more of paperwork and to see how much will it cost, but 90% of the job is done. One question is bothering me though, fertility after the procedure? I'm 31, don't have kids but who knows, one day. I will save some "warriors" in a sperm bank, but still, prefer the old fashioned way . And I'm in the trial for Ocrelizumab and who knows that even after 6m from the last infusion if there will be any left in my system that can cause problems later. I'm trying on local level, just laws are horrible and although there is a hospital that is doing HSCT on a daily basis for other conditions and they are willing to do it for me I still need a permission from the national transplantation board . Doctors say that the chance for regaining fertility is low and I don't have other option than myeloablative that hits hard. Other thing is that they say that I look great and why I'm risking with this and not sticking to my current treatment. And I'm not that bad on the outside, just I know how everything hurts me, legs are weak, getting muscle cramps all the time, brain fog, fatigue.