18 month post-HSCT and still going strong

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18 month post-HSCT and still going strong

Postby georgegoss » Mon Jul 04, 2011 12:28 pm

Its likely Asher will experience a similar magnitude of curative improvement:

http://themscure.blogspot.com/2011/06/1 ... tatus.html
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Postby Asher » Mon Jul 04, 2011 1:22 pm

Impressive George, you're vision and courage have yielded great results.
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Postby Daisy3 » Mon Jul 04, 2011 1:33 pm

Did you have RRMS? Does stem cells do the same for people with progressive ms?
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Postby georgegoss » Mon Jul 04, 2011 2:26 pm

Daisy3 wrote:Did you have RRMS? Does stem cells do the same for people with progressive ms?


My MS started out as RRMS and continued that way for 11 years until I went SPMS for the last 4 years of my disease progression at the time of my HSCT.

Bottom line, HSCT works on the majority of all types of MS (including progressive cases), but works more favorably on early RRMS cases. I explain all about it here:

http://themscure.blogspot.com/2010/06/s ... rence.html
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hsct

Postby Vikingquest » Tue Jul 05, 2011 9:55 am

Hi George,

I am in the early stages of RRMS, I am an otherwise healthy guy of 28 years of age. I am very early in the disease, only just diagnosed, and have no major disabilities and I guess my EDSS score would be 0.

My question is, would HSCT be a good option for me to have right away, before any of the major disabilities even started setting it? I have the money to have it done in Germany. Would they take me? Would having HSCT this early in the disease have as curative an effect as someone who has lived with it for years?

Any advice would be greatly appreciated!!
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Post transplant

Postby Alexandra » Tue Jul 05, 2011 11:17 am

Hi George,

You are an example for all of us.

I am also in the initial stages of RRMS with 4 brain lessions and 3 spinal ones and a zero EDSS score.

I contacted Heidelberg and plan to visit them soon as mentioned before. Can you tell me if you recommend me to the procedure now or wait?

Wish you lots of help
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Postby georgegoss » Tue Jul 05, 2011 12:31 pm

Vikingquest
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Posted: Wed Jul 06, 2011 2:55 am Post subject: hsct

Hi George,

I am in the early stages of RRMS, I am an otherwise healthy guy of 28 years of age. I am very early in the disease, only just diagnosed, and have no major disabilities and I guess my EDSS score would be 0.

My question is, would HSCT be a good option for me to have right away, before any of the major disabilities even started setting it? I have the money to have it done in Germany. Would they take me? Would having HSCT this early in the disease have as curative an effect as someone who has lived with it for years?

Any advice would be greatly appreciated!!

----------------------------------------------------------------------------

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Posted: Wed Jul 06, 2011 4:17 am Post subject: Post transplant

Hi George,

You are an example for all of us.

I am also in the initial stages of RRMS with 4 brain lessions and 3 spinal ones and a zero EDSS score.

I contacted Heidelberg and plan to visit them soon as mentioned before. Can you tell me if you recommend me to the procedure now or wait?

Wish you lots of help


Hi Vikingquest and Alexandra,

Although not advice, I will share my thoughts with both of you since each of the topics you bring up are quite similar.

HSCT is a procedure that has shown the most favorable curative efficacy on early RRMS cases such as your own. I think the general statement of "HSCT treatment earlier in the disease cycle is better than later" is generally true as shown by the clinical trial data. However, HSCT is a serious procedure and if I were in the same situation as you describe, for myself I might want to wait a little while to see how the disease begins to unfold & evolve (although I would not delay the initiation of immunomodulaor drug therapy since all indications point to better results when started immediately following diagnosis). There is a small subset of the MS population that has a realatively benign form of MS that does not present a significant impact to a person's life. If I were such a person I might be fine living with it instead of jumping directly into an uncomfortable, involved and expensive procedure such as HSCT. However, if it turns out that the MS disease activity is progressing forward (as is the case with most MS'ers), then for myself I would definitely want to seriously consider HSCT treatment (since as of today it is the only scientifically-verified procedure to stop the underlying MS disease activity & progression for the majoity of treated patients).

Regarding your other questions. . . . I met with the head of Neurology (Prof Michael Platten) at Heidelberg several weeks ago and discussed with him what his criteria is for accepting MS patients for HSCT treatment. He said before accepting any MS'ers for HSCT they want to see that the patient has "tried and failed" standard [FDA-approved] immunomodulaor therapy (as measured by advancing EDSS) before they will approve an individual for HSCT treatment. Since both of you have an EDSS that is essentially zero, I would expect that Heidelberg would not currently accept you for treatment until such a time that your EDSS advances despite the use of an immunomodulaor (which applies to nearly all MS cases since immunomodulators cannot stop the underlying MS disease activity, they just slow it down). This seems like a simple and rational inclusion criteria and I am not stressed out in hearing this requirement.

I write about the locations & criteria (only the ones I am aware of) that will perform HSCT for MS patients on this page:

http://themscure.blogspot.com/2011/06/g ... -have.html
Last edited by georgegoss on Wed Jul 06, 2011 8:23 am, edited 1 time in total.
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Postby Vikingquest » Tue Jul 05, 2011 1:08 pm

Hi George, thanks for your speedy response! It sucks that they require you to have advancement in the EDSS score before they will commit to the procedure, as MS sufferers are (pretty much) bound to go down this path, so why wait and go through the (almost certain) pain and discomfort of relapses and advancing disability when you can go through a singular painful experience very early on, and then go through the rest of your life as if you never had MS in the first place?!

One would think that if you had the money and wanted the treatment, that you could have it, but it seems this is not the case...

I was wondering what your opinions are regarding the phase III trials currently underway in Northwestern with Dr. Burt. Do you think that after they are completed that this treatment will become the standard for MS? It seems like this amazing cure is almost unknown in the wide world, is this because there is no money to be made by pharmaceutical companies who all want you to stay on the drugs that have little effect, rather than being cured?

The FDA website says that the phase III trial is due to end in 2012, but you have stated that the end is actually 2020, is this correct or am I misunderstanding it?

By the way, thank you so much for your blog, you have no idea how many people you have educated (and probably helped/will help save their lives and quality of life). If it wasn't for you or Carmel Turner, I would never have heard of this amazing way to get out of MS, to even think that there is a procedure which could give people their lives back from a disease which has confounded medicine for so many years is amazing. You are a pioneer and a beacon for this particular treatment which deserves to be shouted from the rooftops, helping give people hope.
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Postby Daisy3 » Tue Jul 05, 2011 1:37 pm

georgegoss wrote:
Daisy3 wrote:Did you have RRMS? Does stem cells do the same for people with progressive ms?


My MS started out as RRMS and continued that way for 11 years until I went SPMS for the last 4 years of my disease progression at the time of my HSCT.

Bottom line, HSCT works on the majority of all types of MS (including progressive cases), but works more favorably on early RRMS cases. I explain all about it here:

http://themscure.blogspot.com/2010/06/s ... rence.html


Thanks Georgegoss,

something to think about is always good..
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Postby georgegoss » Tue Jul 05, 2011 2:37 pm

Vikingquest wrote:Hi George, thanks for your speedy response! It sucks that they require you to have advancement in the EDSS score before they will commit to the procedure, as MS sufferers are (pretty much) bound to go down this path, so why wait and go through the (almost certain) pain and discomfort of relapses and advancing disability when you can go through a singular painful experience very early on, and then go through the rest of your life as if you never had MS in the first place?!

One would think that if you had the money and wanted the treatment, that you could have it, but it seems this is not the case...

I was wondering what your opinions are regarding the phase III trials currently underway in Northwestern with Dr. Burt. Do you think that after they are completed that this treatment will become the standard for MS? It seems like this amazing cure is almost unknown in the wide world, is this because there is no money to be made by pharmaceutical companies who all want you to stay on the drugs that have little effect, rather than being cured?

The FDA website says that the phase III trial is due to end in 2012, but you have stated that the end is actually 2020, is this correct or am I misunderstanding it?

By the way, thank you so much for your blog, you have no idea how many people you have educated (and probably helped/will help save their lives and quality of life). If it wasn't for you or Carmel Turner, I would never have heard of this amazing way to get out of MS, to even think that there is a procedure which could give people their lives back from a disease which has confounded medicine for so many years is amazing. You are a pioneer and a beacon for this particular treatment which deserves to be shouted from the rooftops, helping give people hope.


Hi Vikingquest,

Thanks for your kind words (for Carmel, too!), and also for your well-informed and educated viewpoint. You touch on some good topics so I'll throw in a couple more comments of my own (sorry, I don't mean to hog the spotlight):

It sucks that they require you to have advancement in the EDSS score before they will commit to the procedure, as MS sufferers are (pretty much) bound to go down this path, so why wait and go through the (almost certain) pain and discomfort of relapses and advancing disability when you can go through a singular painful experience very early on, and then go through the rest of your life as if you never had MS in the first place?!

Indeed. However, I have the impression that Prof Slavin in Israel will perform HSCT for MS'ers that are newly-diagnosed. I don't know this for certain, but you could always contact him at CTCI (info on my blog page) to inquire with him. I bet he'd likely do it so long as you have a positive diagnosis for MS.

I was wondering what your opinions are regarding the phase III trials currently underway in Northwestern with Dr. Burt. Do you think that after they are completed that this treatment will become the standard for MS?

I am extremely confident that HSCT will eventually become FDA-approved curative treatment for MS. In fact, it's impossible for me to imagine how it would not eventually become approved standard treatment. The data are so overwhelmingly positive and, (importantly) consistent. The curative effects of HSCT is no longer a mystery for hematologically-rooted autoimmune disorders (such as MS) like it was 20 years ago.

It seems like this amazing cure is almost unknown in the wide world, is this because there is no money to be made by pharmaceutical companies who all want you to stay on the drugs that have little effect, rather than being cured?

You bring up a good point, and I too was very perplexed as to why more people don't recognize HSCT for the successful treatment that it is as opposed to jumping on the bandwagons of completely unproven treatments that totally lack any repeatable postive in-vivo data like CCSVI and stem cell injections/infusions. But after thinking about it for a long time I have finally come to the conclusion that it is (primarily) about the money. HSCT must be paid by most individuals receving treatment and when combined with the intransigence of the neurorolgy medical establishment, for the time being HSCT is facing some tough obstacles for wider acceptance. Sorry to add additional controversial statements, but this is relevant. . . I don't think there is a conspiracy by the drug companies holding back HSCT (or any other specific MS treatment for that matter). But on the other hand you're right that they don't & won't support HSCT because they have no way to make money from it. So they have no motive to support HSCT and most MS'ers (like the population at large) has difficulty paying cash for such an expensive treatment.

The FDA website says that the phase III trial is due to end in 2012, but you have stated that the end is actually 2020, is this correct or am I misunderstanding it?

All the study-participant patients in the (MIST) phase III trial will complete their HSCT procedures by the end of 2012. Following that the lengthy & hard work begins in which the researchers have to do the follow-up with patients over time, in-depth data analysis and then preparation & submission of the final report. Then that will have to go through the beauracracy of the FDA for peer review and comitee hearings, etc. So I bet around (or just after) 2020 HSCT will then become approved & standard treatment. The good news is at that time everyone will stop incorrectly saying that HSCT is totally experimental (it is not!), and then medical insurance companies will start paying for the procedure so a larger population of MS patients will be able to receive treatment.

(and probably helped/will help save their lives and quality of life)

This is why I'm so down on the majority of neurologists around the world. HSCT can often offer a substantially-improved "quality" of life for many people that might otherwise be handed a life with a poor (MS) health status. Most (but not all) neurologists don't weight this factor strongly enough. I have heard neurologists say "why perform a risky procedure if you're not going to die from your disease?" My answer. . . "Because what the hell is the point of my living if I can't take care of my family and be a part of other people's lives that are important to me, damnit?!" Most neurologists are oblivious to this most important factor. Until they get MS themselves. Then they start singing a different tune.

BTW. . . with the current HSCT treatment protocol used starting/since the phase II trials, not a single MS'er has died from the procedure. So as is the case with all medical procedures there is some risk. But since currently zero people have died from HSCT for MS (with the current protocol) so far, this is NOT a wildly dangerous procedure. Interestingly, people have died as a direct result of CCSVI treatment and died as a direct result of bogus stem cell infusions. So far (based on mortality rates) its looking like HSCT is safer than CCSVI or stem cell injection treatments.

No matter what. . . I sincerely wish you the very best of health & happiness.

Regards,

George
Last edited by georgegoss on Wed Jul 06, 2011 8:37 am, edited 1 time in total.
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Postby Vikingquest » Wed Jul 06, 2011 7:13 am

Thank you very much, George. I really appreciate the help!
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Postby civickiller » Wed Jul 06, 2011 1:39 pm

since you are still young and open minded. if you have the money to spare, i would try Upper Cervical Care $2k, ccsvi surgery $15k, then hsct because i hate the maybe no kids thing. i just turned 29 and i want kids so maybe im alittle bias in my thoughts. i wish i found ucc and ccsvi before my disabilities started

but to get tested if you could benefit from ucc, testing only cost a few hundred

sorry i know this is the stem cell forum but i would want him to know all the options
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Postby georgegoss » Mon Aug 08, 2011 9:58 am

Interesting subject regarding fertility & HSCT. I can definitely see how it would be of concern for some people (including me). I banked my sperm prior to the procedure and my wife and I just completed an IVF procedure in an attempt to have a second child. The blood test in two weeks will let us know if we are succesful.

Definitely easier for a man. However, following HSCT a woman can still have a totally normal pregnancy. But it almost certainly would require an IVF procedure with banked eggs, banked embryo or an egg doner to make it happen.




OK a little bit I'm going to go out on a limb here. My wife would kill me if she knew I was posting this. Luckily for me she doesn't read this forum so I think I should be OK so long as no one tells her what I've done. . .

She wants to wait a full three months before announcing, but my wife is now 10 weeks pregnant. So even though I am sterile today (from the myeloablative BEAM HSCT protocol), I banked my sperm prior to my procedure knowing that this was a likely possibility and we have so far been successful in our IVF attemp. Second child is on the way which shows that HSCT side effects are not impossible to overcome (actually I have no side effects that I have not been happy to accept for eradicating MS disease activity & progression from my body).

Remember. . . mums the word!
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Postby Isarflimmern » Mon Aug 08, 2011 11:39 am

georgegoss wrote:OK a little bit I'm going to go out on a limb here. My wife would kill me if she knew I was posting this. Luckily for me she doesn't read this forum so I think I should be OK so long as no one tells her what I've done. . .

She wants to wait a full three months before announcing, but my wife is now 10 weeks pregnant.


Congratulations George, what great news!! Best wishes for you and your wife. Very happy for you :-)
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Postby ApVish » Mon Aug 08, 2011 1:53 pm

Congratulations!!!! Thats such a nice news!

Wishing you and your wife happy time ahead!
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