[RedPenguins]

So, I haven't seen much talk on this forum about HiCy/Revimmune... Just wondering what people think of this.

(I'm actually in contact with Johns Hopkins now and will be sending over my records on Tuesday).

~keri

[Friend2U]

Originally Posted by RedPenguins

So, I haven't seen much talk on this forum about HiCy/Revimmune... Just wondering what people think of this.

(I'm actually in contact with Johns Hopkins now and will be sending over my records on Tuesday).

~keri

[RedPenguins]

and it's a freaky treatment where they basically kill your immune system and re-boot it with the hope of the MS not returning. Okay, I'm not explaining it that well - you can read this:

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

It looks promising to me, not to mention scary! I'm very intrigued by it - as I'm planning on fighting this MS-crap with everything I can....I don't want to live this way (disabled, in pain, unknown future, etc.). I'm seriously considering this.

[RedPenguins]

of 10-17% death rate? When I spoke with hopkins, that is NOT the data they gave to me. Nor have I found that in my prelim research.

From my research, as for HiCy deaths, there has been one - and it was not in a MS patient - nor was it necessarily due to the HiCy - but rather they performed a medical procedure on someone too soon after they had the tx - and their immunity (or lack thereof) couldn't handle it.

Also, they aren't saying a "high likelihood" of MS starting over. It is a possibility - however, in an effort to thwart that, the protocol now involves beginning copaxone 30-45 days after the HiCy treatment - hoping to repair and retrain the brain. (or something like that!)

Please - take nothing I say here as fact - as my brain doesn't work the best lately. LOL

~K

[Victor H]

RP,

I will ask my neuro-team for the peer-reviewed literature regarding the mortality rate and get it to you as soon as possible.

No matter what, it is your choice and I wish you the best with whichever route you take.

-Vic

[RedPenguins]

Thanks, Victor - I look forward to reading it. I believe in being armed with as much confirmed info as possible!

As of now, they have had 9 people complete the treatment in clinical trial, 10 more do it off label, and 10 more in queue waiting to begin. Those are just the numbers for MS patients. I believe she said over 200 have completed tx for a variety of other auto-immune diseases.

Oddly (well, not oddly but...) over 18 years ago my mother underwent a similar type of tx process for cancer. She had her entire immune system wiped out with chemo before undergoing an autologous bone marrow transplant. This was when bone marrow transplants were still somewhat experimental. Anyhow, she had to live in the hospital, in isolation, for over 3 months when they shot out her immune system! (I was 13-14 years old at the time). Anyhow, maybe because I've seen someone actually go through it - and mind you, 18 yrs ago, I might not be "as scared" as I should be? Meds have come a long way in the last 18 yrs. Also, I watched my mother undergo many other experimental txs at the Natl Cancer Institute when I was a kid. Granted - the tx was NOT easy on her at all!! Downright frightening.

[Victor H]

Originally Posted by RedPenguins

Thanks, Victor - I look forward to reading it. I believe in being armed with as much confirmed info as possible!

As of now, they have had 9 people complete the treatment in clinical trial, 10 more do it off label, and 10 more in queue waiting to begin. Those are just the numbers for MS patients. I believe she said over 200 have completed tx for a variety of other auto-immune diseases.

Oddly (well, not oddly but...) over 18 years ago my mother underwent a similar type of tx process for cancer. She had her entire immune system wiped out with chemo before undergoing an autologous bone marrow transplant. This was when bone marrow transplants were still somewhat experimental. Anyhow, she had to live in the hospital, in isolation, for over 3 months when they shot out her immune system! (I was 13-14 years old at the time). Anyhow, maybe because I've seen someone actually go through it - and mind you, 18 yrs ago, I might not be "as scared" as I should be? Meds have come a long way in the last 18 yrs. Also, I watched my mother undergo many other experimental txs at the Natl Cancer Institute when I was a kid. Granted - the tx was NOT easy on her at all!! Downright frightening.

Here are some of the citations, and I will get more as soon as I can:

A. D. R. Huitema1,, M. Spaander, R. A. A. Mathôt, M. M. Tibben, M. J. Holtkamp, J. H. Beijnen, and S. Rodenhuis. (2002).
Relationship between exposure and toxicity in high-dose chemotherapy with cyclophosphamide, thiotepa and carboplatin. Annals of Oncology: 13:374-384, 2002

LJ Ayash, JE Wright, O Tretyakov, R Gonin, A Elias, C Wheeler, JP Eder, A Rosowsky, K Antman and E Frei (1992)
Cyclophosphamide pharmacokinetics: correlation with cardiac toxicity and tumor response: Journal of Clinical Oncology, Vol 10, 995-1000

NS Kolb, LA Hunsaker and DL Vander Jagt (1994)
American Society for Pharmacology and Experimental Therapeutics: Volume 45, Issue 4, pp. 797-801


A Elias and K Antman (1992). Minimising cyclophosphamide toxicity. Reactions: Volume 1, Number 383, 1992 , pp. 3-3(1)


-Vic

[weegot5kiz]

I will look into this deeper but from the brief bit that i have seen on this I must admit it scares me, I am always getting sinus and broncitis and pnuemonia and have been even before being DXed or wondering if something more was going on. like I said I will need to read more about this. If this is the answer for you may it be. like you said its a freaky or drastic, but the idea, kind of makes sense, I need to educate myself more on this. Good luck in your decision

[Victor H]

Originally Posted by RedPenguins

So, I haven't seen much talk on this forum about HiCy/Revimmune... Just wondering what people think of this.

(I'm actually in contact with Johns Hopkins now and will be sending over my records on Tuesday).

~keri

RP,

I discussed it with my neuro-team. Their response is shown in this post:
http://neurotalk.psychcentral.com/thread37891-34.html POST 340

"We did discuss medications like Revimmune. Generally, this type of medication eliminates and then restores the immune system entirely. There are two downfalls to this approach: a) potential lethality is very high (10-17%, though not necessarily with Revimmune itself), and; b) the high liklihood that even after the immune system is restored, whatever causes MS will eventually just start again, thereby making this approach just a delaying process with very high risks."

-Vic

[Snoopy]

Originally Posted by Victor H

b) the high liklihood that even after the immune system is restored, whatever causes MS will eventually just start again, thereby making this approach just a delaying process with very high risks."
-Vic

Vic, this makes perfect sense.

Even if Revimmune helps temporarily since the cause of MS is still unknown how can Revimmune help any better than current safer treatments which are also used for delaying progression.

Just my personal opinion - There has to be more understanding of MS and the cause(s) of MS before there can be any long term consistant solution.

Keri, I really know nothing about Revimmune but I do know quite a bit about MS. If you choose to go with Revimmune I really wish you well. But, the reality of MS - there is no quick fix or guarantee.