My CtrlAltDel - Status

georgegoss · Post by **georgegoss** » Fri Aug 26, 2011 2:58 pm

CVfactor wrote:Hi Asher,

I believe you are well on your way to stopping the progression of MS and I think both you and George have a lot of courage in undertaking this procedure.

But I was wondering why other people who have had HSCT do not post here on this website? It seems there should have been many patients with MS who underwent this during the many trials.

It would be good to here their experiences also. It may be that they were turned off because of the many fanatics who are on here, but I think this part of the forum is a safe haven for people who actually believe in truth.

CVfactor. . . reading your words is reassuring and lets me know that you have a very good grasp & understanding of the issues. Kudos to you!

You're very kind with your words for Asher and I. As for me I think it was not so much courage that attracted me to HSCT for my MS, but was more a matter of determination. I was determined to beat my disease using the big guns of science instead of going down the path of ignorance & irrational belief in unproven treatments (i.e. CCSVI). But anyway, thank you for your words. Often dogma in the general population is wrong when people follow the herd mentality. HSCT is obviously not yet followed by the herd.

As to why there are not more MS'ers that had HSCT posting here. . . good question. I think the population of such people are somewhat disperate (not 'desperate') and likely are not all linked into a central location of communication on this subject. I was actually thinking of creating something akin to a "HSCT Club" for MS'ers so that there might somewhere be created a central respository of patient information that could be shared by those wishing to do so. I might try to link up both with Dave Bexfield and Scott & Carmel Turner to kick-start such an effort. After all, in just another (approximately) ten years, HSCT will inevitably become an FDA-approved curative treatment for MS. Just a matter of time now.

HUD45 · Post by **HUD45** » Fri Aug 26, 2011 10:55 pm

Hi Brad, this is my third attempt at answering your questions about Dr. Slavin and HSCT.

I am 45 years old and am in Tel Aviv right now, yes Dr. Slavin does do HSCT. I'm at day +3 and feeling pretty wiped out. I will remain here until my blood count gets back up and it is safe to travel back home.

My treatment consisted of a Neupogen mobilization, followed by Campath, Bone Marrow Harvest, then cyclophosphamide to further reduce the immune system and finally the transplant.

Dr. Slavin's team is great and I feel like I am in good hands. They are caring, compasionate and cautious. I think that Dr. Slavin determines protocol on an individual basis using EDSS scores, age and physical fitness.

I also know that Dr. Slavin offers the Mesenchymal stem cell treatment and that one does require two trips, although much shorter trips, the second one is in Switzerland not Israel.

Sorry I'm a little late in posting a reply to you.

CVfactor · Post by **CVfactor** » Sat Aug 27, 2011 8:45 am

georgegoss wrote: I was determined to beat my disease using the big guns of science instead of going down the path of ignorance & irrational beleif in unproven treatments (i.e. CCSVI). But anyway, thank you for your words. Often dogma in the general population is wrong when people follow the herd mentality. HSCT is obviously not yet followed by the herd.

As to why there are not more MS'ers that had HSCT posting here. . . good question. I think the population of such people are somewhat disperate (not 'desperate') and likely are not all linked into a central location of communication on this subject. I was actually thinking of creating something akin to a "HSCT Club" for MS'ers so that there might somewhere be created a central respository of patient information that could be shared by those wishing to do so. I might try to link up both with Dave Bexfield and Scott & Carmel Turner to kick-start such an effort. After all, in just another (approximately) ten years, HSCT will inevitably become an FDA-approved curative treatment for MS. Just a matter of time now.

George, I think it would be great to have a website that is based more on the reality of the science instead of peoples misguided interpretations of what they believe to be science.

Unfortunately this is really the only website I have found where anything can be discussed openly. I guess you have to take the good with the bad in this type of setting and it always seems the bad voices are louder than the good due to mob mentality.

But I think truth and science is coming for these people and their misguided endeavors on this site so in the end they lose as they have done throughout history.

Sorry, I didn't mean to detract from Ashers progress post.

Asher · Post by **Asher** » Sat Aug 27, 2011 11:15 am

On the contrary CVfactor, I'm happy with your contribution and your thoughts echo those of most of the frequent visitors of this forum which is an island of sanity and rational and rigorous thinking. Thank you and have a lovely weekend. Asher

bspotts1 · Post by **bspotts1** » Mon Aug 29, 2011 10:57 am

hi HUD,

wow...i had no idea you were on the verge of starting HSCT when i first discovered your postings. a belated Happy Birthday to you!!! may your progress be as fabulous as Asher and George...congratulations!

Asher...sorry you're feeling a little puny...however, it sounds in-line with George's experience so i'm sure it will pass soon and you'll continue to make progress. hang in there!!!

brad

Asher · Post by **Asher** » Mon Aug 29, 2011 11:02 am

Thanks Brad. It seems like HSCT is starting to gain traction. Exciting!

HUD45 · Post by **HUD45** » Tue Aug 30, 2011 1:48 am

Glad to hear you got the message Brad. I am glad to help out with the knowledge of my Tel Aviv experience. Keep digging for answers and do not hesitate to ask in the future. I am at day +6 now and will see new blood work tomorrow. I hope my leukocytes are on the comeback trail now as they were at "0" 2 days ago. No more nausea and never had a fever so far....so good.

Dr. Slavin had me speak with 2 young girls yesterday..1 with ms about the procedure I just went through( she is recommended for the same protocol as I had) I think this further shows his confidance and honesty as well as being upfront with prospective patients.. I think I am in wonderful hands of care here!

HUD45

Asher · Post by **Asher** » Tue Aug 30, 2011 2:59 am

HUD, great to hear you are in competent hands. Lucky you, day +6 with no fever is very good news indeed! Good to read your updates. Have you lost your hair by now

Take care, Asher

HUD45 · Post by **HUD45** » Tue Aug 30, 2011 4:23 am

Not that I had a lot of hair in the first place, but what I started with is still there for now. I was actually able to go outside today and sit in a little park by the medical center. How fast I miss the outdoors of Minnesota this time of year. Hope things go well and I will get back there soon. Thanks for the support Asher and wishing you the best....HUD45

Vikingquest · Post by **Vikingquest** » Wed Aug 31, 2011 4:31 am

Hi guys, I was wondering if someone could answer my query regarding the death-rate of HSCT. Perhaps George, if you would be so kind!?

I have read that it's a little under 1% of people, so what accounts for this? Is that one percent comprised of those who were unusually weak when undertaking the procedure, too old or too young, had a negative allergic reaction to the treatment? Or is it just random? Could a relatively strong man just die as easily as someone who was much weaker? I guess I'm trying to understand that 1% and the "truth" behind the statistic.

Thank you

V

Asher · Post by **Asher** » Wed Aug 31, 2011 5:30 am

Vikingquest, the Heidelberg (Germany) figure is 0.84%. This figure is for the total population of patients that undergo an autologous transplantation. Bare in mind this includes patients of all ages and sexes, strong, weak and cancer patients too. Given this, the probability that an otherwise healthy patient would die from the procedure is extremely remote.

Vikingquest · Post by **Vikingquest** » Wed Aug 31, 2011 8:24 am

Thanks for your answer Asher. A lot of people are saying that HSCT is really only a last option kinda-thing, whereas I think that it should be available for everyone, even those newly diagnosed and with no significant developments yet.

Also, people have been saying that it's not as effective in those newly diagnosed, is this true?

Asher · Post by **Asher** » Wed Aug 31, 2011 8:49 am

A lot of people are saying that HSCT is really only a last option kinda-thing, whereas I think that it should be available for everyone, even those newly diagnosed and with no significant developments yet.

Also, people have been saying that it's not as effective in those newly diagnosed, is this true?

Excellent points you are raising! It is a matter of time before the med. orthodoxy will see HSCT as a first line treatment. Probably after phase III trials are completed and get FDA approval.

As to newly diagnosed, personally I'm not sure about it. Some newly diagnosed turn out to be a clinical isolated syndrome or benign MS. But there should be no reason on earth to wait until irreversible disability accumulaes. in fact, HSCT has proven to be most effective for relatively early RRMS cases with 100% symptom and disability reversal.

georgegoss · Post by **georgegoss** » Wed Aug 31, 2011 9:16 am

Vikingquest wrote:Hi guys, I was wondering if someone could answer my query regarding the death-rate of HSCT. Perhaps George, if you would be so kind!?

I have read that it's a little under 1% of people, so what accounts for this? Is that one percent comprised of those who were unusually weak when undertaking the procedure, too old or too young, had a negative allergic reaction to the treatment? Or is it just random? Could a relatively strong man just die as easily as someone who was much weaker? I guess I'm trying to understand that 1% and the "truth" behind the statistic.

Thank you

V

Sorry for my tardy comments. Just a few. . . .

Although there were some early deaths during the long-ago HSCT phase I clinical trials in which they needlessly used risky total body irradiation (TBI), today's HSCT procedures do not use TBI, nor is it required to stop MS. So far (from phase II clinical trial work, onward) not a single MS patient has died as a result of HSCT treatment.

This is actually a better safety profile than what CCSVI and/or stem cell "infusion" therapy can offer (people have died as a direct result of these other ineffective procedures) So from a global-treatment perspective, HSCT for MS is stacking up as a pretty safe procedure (although admittedly it is rather uncomfortable to go through).

With that said I will add the most important issue in recieving HSCT. . . . the "facility" location turns out to be more important than the "protocol" of the procedure as for the safety profile. HSCT could be a very dangerous procedure done at the wrong facility. So long as the (hospital) facility is experienced in administering the protocol and knows what they are doing, HSCT is not a wildly dangerous procedure. Asher is correct in his numbers that the death rate where we were treated (Heidelberg) with the myeloablative (BEAM) protocol is around 1%, or less. But this also includes many elderly and sick people with serious comorbidity issues (mainly cancer). So if a person with MS is otherwise healthy (even if disabled), the risk is even less compared to the whole treatment population. Probably a big metric relative to this topic is how many patients does the specific facility treat? Heidelberg, for example, does several hundred HSCT procedures every year. So they know what they're doing. I would be more concerned with a facility that performs only a few transplantations a year where the staff isn't as experienced.

For the non-myeloablative HSCT protocols (such as with Prof. Slavin in Israel and Dr. Burt in Chicago), the mortality risk is even less (probably less than half of the myeloablative protocol). But again, these are very good & experienced facilities.

It's interesting that there are a lot of people (and even most neurologists) that say HSCT for MS is a "last resort" option. The people saying this are ignorant of the facts and clinical data. Especially neurologists because they have no education, training, background or treatment experience in stem cell transplantation. For me, the last doctor to ask about HSCT for MS is a neurologist. And in fact, exactly the "opposite" is true. HSCT works better when performed ealier in the MS disease course, not later when it gets so bad that it responds less favorably to the treatment. I created an interpolated graph from the clinical trial data that clearly shows the benefit to performing HSCT earlier, instead of later.

http://2.bp.blogspot.com/-PvejGH-NIG4/T ... al%2B2.jpg

georgegoss · Post by **georgegoss** » Wed Aug 31, 2011 9:38 am

Asher wrote:
As to newly diagnosed, personally I'm not sure about it. Some newly diagnosed turn out to be a clinical isolated syndrome or benign MS. But there should be no reason on earth to wait until irreversible disability accumulaes. in fact, HSCT has proven to be most effective for relatively early RRMS cases with 100% symptom and disability reversal.

This is another important point of nuance that Asher brings up. It is true that if someone were to contract a form of disabling MS, it would be best to hit it with HSCT immediately upon diagnosis.

But how to know if it is not a clinically-isolated event or a very benign form of MS? The only way to know for sure is to wait a little longer following diagnosis that the disease is going to progress. If it were me, probably I would wait a little more time past the initial precipitating diagnosis event to see what happens (or at least see the MRI lesion activity). If my disease had remained completely benign without adding to my disability (admittedly an uncommon case, but some rare few do fall into this category), then I likely would not seek an HSCT procedure.

However, I would start immunomodulator drug therapy immediately upon diagnosis and then if my disease proved to worsen over some interval of time, then definitely I wouldn't want to wait any longer to get HSCT and would do it as soon as practical.