hsct from a different perspective

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hsct from a different perspective

Postby shucks » Fri Aug 05, 2011 5:41 pm

I am having an exacerbation, causing some ON and pretty crappy weakness. Is short, it sucks. My neurologist at Duke is 3 hrs away, so when I have an issue, I email her nurse, who talks to her and emails me back in a couple days. She tells me that I need to go to my local hospital for 3 days of solumedrol and then ween off of them with pills. Further to get a brain mri, ever though all my lesions are in my spine. I, in turn, go see my pcp who interprets all of the medical jargon, and who tells me the best way to get whatever treatment she wants without breaking the bank, and lets me know his seasoned opinion (my neuro has been practicing 5yrs and my pcp since 1975) what it entails. He tells me not to go to the hospital due to costs, and he will figure something out that will work, even if he had to buy the machine and put it in his office. He calls me after he sets up the mri, and then he tells me my insurance will cover, and he recommends i go to a cancer infusion center for the solumedrol. I get there today, scared to death to get treatment for my first full on treated exacerbation, and my insurance reqires a dr visit and to call in an in house treatment for it to be covered. The staff Dr's are all oncologists, since CANCER CENTER is in the title, and he gives me a 10 minute exam prior to hooking me up to the machine. He's a young guy around 30, like me, and a really nice guy. While he's giving me the old push/pull here and breathe deep there, I asked him point blank about hsct treatment. He asked if it was autologous or someone elses cells, and then asked me if I thought it was the clean stem cells or the chemo that stopped it. He furthe says he knows just enough about MS to be dangerous. He tells me that he has wondered before why it wasnt a treatment, and then explained to me for 5 minutes or so why, in theory, it should work famously. He told me that he had not read about it as a treatment, but that if MS is auto immune, like they think it is, then there is no reason for it not to work.

I know you guys all know more about it than me, but I have researched everything that people have written about it as a treatment, to the point that some folks wont respond to me anymore due to the depth of my questions. I am trying to get in to Dr. burt's study in chicago, which I also talked to today, and will go further into further down. This bright eyed oncologist really made me think, in a few minutes time, about how our pharmaceutical system is screwed up, and how the right dr's might not be handling our treatments.

When I was done and suffering through the aftermaths of junk food and booze the steroids made me crave, I spoke to the folks at northwestern, who told me that they thought they could do this treatment indefinately until either approved or denied by the fda. This came as a shock to me, who thought that they would have to shut down in 2012 while the fda spent time reviewing the treatment. My resolve is steeled further, and only hope to get in to the trial in January when my 6 moths of copaxone is up. So far, the shots arent bad, but why bail the sinking boat when you can plug the hole?

Please excuse the length, but I found the day both crappy and enlightening. .
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Postby shucks » Fri Aug 05, 2011 5:44 pm

Oh,
The Dr. did say something about maybe MS reevolving in time, like it did originally.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby ApVish » Fri Aug 05, 2011 6:11 pm

Hope you feel better soon. I wish you luck in getting into the clinical trial. It absolutely makes no sense that they want a patient to suffer for 6 months with attacks and injections before they can consider a fix for the issue.

Hope the trials bring in good news the treatment gets approved within this decade.
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Re: hsct from a different perspective

Postby georgegoss » Sat Aug 06, 2011 11:16 pm

shucks wrote:I am having an exacerbation, causing some ON and pretty crappy weakness. Is short, it sucks. My neurologist at Duke is 3 hrs away, so when I have an issue, I email her nurse, who talks to her and emails me back in a couple days. She tells me that I need to go to my local hospital for 3 days of solumedrol and then ween off of them with pills. Further to get a brain mri, ever though all my lesions are in my spine. I, in turn, go see my pcp who interprets all of the medical jargon, and who tells me the best way to get whatever treatment she wants without breaking the bank, and lets me know his seasoned opinion (my neuro has been practicing 5yrs and my pcp since 1975) what it entails. He tells me not to go to the hospital due to costs, and he will figure something out that will work, even if he had to buy the machine and put it in his office. He calls me after he sets up the mri, and then he tells me my insurance will cover, and he recommends i go to a cancer infusion center for the solumedrol. I get there today, scared to death to get treatment for my first full on treated exacerbation, and my insurance reqires a dr visit and to call in an in house treatment for it to be covered. The staff Dr's are all oncologists, since CANCER CENTER is in the title, and he gives me a 10 minute exam prior to hooking me up to the machine. He's a young guy around 30, like me, and a really nice guy. While he's giving me the old push/pull here and breathe deep there, I asked him point blank about hsct treatment. He asked if it was autologous or someone elses cells, and then asked me if I thought it was the clean stem cells or the chemo that stopped it. He furthe says he knows just enough about MS to be dangerous. He tells me that he has wondered before why it wasnt a treatment, and then explained to me for 5 minutes or so why, in theory, it should work famously. He told me that he had not read about it as a treatment, but that if MS is auto immune, like they think it is, then there is no reason for it not to work.

I know you guys all know more about it than me, but I have researched everything that people have written about it as a treatment, to the point that some folks wont respond to me anymore due to the depth of my questions. I am trying to get in to Dr. burt's study in chicago, which I also talked to today, and will go further into further down. This bright eyed oncologist really made me think, in a few minutes time, about how our pharmaceutical system is screwed up, and how the right dr's might not be handling our treatments.

When I was done and suffering through the aftermaths of junk food and booze the steroids made me crave, I spoke to the folks at northwestern, who told me that they thought they could do this treatment indefinately until either approved or denied by the fda. This came as a shock to me, who thought that they would have to shut down in 2012 while the fda spent time reviewing the treatment. My resolve is steeled further, and only hope to get in to the trial in January when my 6 moths of copaxone is up. So far, the shots arent bad, but why bail the sinking boat when you can plug the hole?

Please excuse the length, but I found the day both crappy and enlightening. .


Hi Shucks,

I'm impressed that you had an opportunity to meet up with a doctor that understands the underlying theory & potential benefits of HSCT for a hematologically-rooted autoimmune disease such as MS. But admittedly, an oncologist is far more qualified to undrstand the subject as opposed to a neurologist.

BYW.... as I'm sure you already know, Solumedrol like all steroid use for MS may bring you out of a relapse faster, but will have no effect to improve the long-term progression & deficit accumulation of the disease,

And you have an excellent grasp of the concepts & issues of the treatment. Kudos to you!

My best wishes,

George
Last edited by georgegoss on Sun Aug 07, 2011 11:15 am, edited 1 time in total.
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Postby shucks » Sun Aug 07, 2011 5:23 am

It is a double edged sword. I have to have 2 exacerbations in six months treated by solumedrol while on copaxone to qualify for dr burts study. I am really hoping to get in in january to try to take charge of my condition instead of these speeches from neuros about coping with the disease. I am 1.5 months in and this is my first treated one. Part of me doesn't want to ever have any progression and another that wishes it would happen already
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Postby burg » Sun Aug 07, 2011 9:25 am

George..I sent you a PM and an email to your yahoo address..
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Postby georgegoss » Sun Aug 07, 2011 10:01 am

shucks wrote:It is a double edged sword. I have to have 2 exacerbations in six months treated by solumedrol while on copaxone to qualify for dr burts study. I am really hoping to get in in january to try to take charge of my condition instead of these speeches from neuros about coping with the disease. I am 1.5 months in and this is my first treated one. Part of me doesn't want to ever have any progression and another that wishes it would happen already


Yes, this is part of Burt's very restrictive (MIST) study inclusion/exclusion criteria. The study criteria excludes 99%+ of people trying to enter the study. People that would actually benefit from the HSCT treatment. (Clinical trials are not specifically intended to help individuals. The purpose is to prove a hypothesis in the context of a population.)

Just FYI to be mentally prepared for the possibility. . . . even if accepted to Burt's HSCT trial, becuse it is a randomized study there is a 50% random chance the accepted patient will be assigned to the control arm of the study. If so that means no HSCT and the patient will only be offered convential drug therapy which offers no hope of a cure.

Burt is also offering HSCT treatment "outside" of his study in which the onerus inclusion/exclusion criteria is not so restrictive. And if accepted for treatment then HSCT will be a certaintly because there is no randomization to contend with. The only downside of this alternate approach is that the patient must pay 100% of the treatment cost (approximately $150K), as insurance will not.

Alternatively, treatment could be sought for a more affordable price elsewhere.

http://themscure.blogspot.com/2011/06/g ... -have.html

Regardless, I sincerely am wishing that this works out the way you would like it to. It's hard to go wrong getting HSCT treatment with Burt. There is no better experienced facility.

Very best luck to you!

George
Last edited by georgegoss on Sun Aug 07, 2011 10:14 am, edited 3 times in total.
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Postby Lyon » Sun Aug 07, 2011 10:07 am

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Last edited by Lyon on Sun Nov 20, 2011 2:57 pm, edited 1 time in total.
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Postby georgegoss » Sun Aug 07, 2011 10:32 am

Lyon wrote:I haven't read the terms of study participation. Is there a commitment that eventually everyone, even those not originally treated with HSCT, will eventually be offered treatment?

georgegoss wrote:Just FYI to be mentally prepared for the possibility. . . . even if accepted to Burt's HSCT trial, becuse it is a randomized study there is a 50% random chance the accepted patient will be assigned to the control arm of the study. If so that means no HSCT and the patient will only be offered convential drug therapy.


I have heard of no such commitment. That would defeat the purpose of the study. The objective is to track people "over time" and compare those that underwent HSCT vs. those treated with conventional drugs. I'm sure they want to stretch that out over a number of years. From a scientific perspective this approach makes sense to "prove" the superiority of HSCT. It's just unfortunate knowing that there are lingering untreated patients that would have responded much more favorably if they had actually had HSCT.

There is one caveat. . . . Burt does offer a "crossover" opportunity that if a control patient substantially deteriorates then they can have HSCT. But that means further worsening to get the HSCT treatment. Another unfortunate circumstance because HSCT is better when done earlier, not later when the patient progresses to a more advanced disability.

Burt describes this randomization caveat in this video starting around 3 minutes in.

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel
Last edited by georgegoss on Sun Aug 07, 2011 4:12 pm, edited 1 time in total.
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Postby Lyon » Sun Aug 07, 2011 12:41 pm

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Postby shucks » Sun Aug 07, 2011 4:43 pm

If you increase by one point on edss score, you can switch to the active arm of the trial. I am sure that its tough with tysabri being the control arm. I am nott against germany or israel as treatment options, but if the lymphoablative treatment works just as good as the more dangerous one, and I wouldnt have to take my inoculations again, I think it should be my first option. I love all of your insight george, please keep it coming.
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Postby georgegoss » Sun Aug 07, 2011 6:59 pm

shucks wrote:If you increase by one point on edss score, you can switch to the active arm of the trial. I am sure that its tough with tysabri being the control arm. I am nott against germany or israel as treatment options, but if the lymphoablative treatment works just as good as the more dangerous one, and I wouldnt have to take my inoculations again, I think it should be my first option. I love all of your insight george, please keep it coming.


I also would be good with the non-myeloablative protocol and would be happy to receive Burt's protocol (or the equivalent protocol by Prof. Slavin at CTCI in Israel).

But first things first with Burt's clinical study in Chicago. . . . gotta be accepted to the trial which is no easy task. And then if accepted to the randomized trial there is always a 50% chance one could go right to the treatment arm and immediately get HSCT. Almost like winning the lottery.

Both (myeloablative and non-myeloablative) protocols appear to have similar (good-to-excellent) curative efficacy at nearly 8 years out. For me personally, I'd be good with either protocol even if I had no option to choose. The primary goal of both protocols is the same. So far they are both showing successful efficacy results.
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Postby Isarflimmern » Mon Aug 08, 2011 10:50 am

shucks wrote:If you increase by one point on edss score, you can switch to the active arm of the trial. I am sure that its tough with tysabri being the control arm.


I know of one patient who was randomized to the control arm and he got worse while being on Tysabri. He was just switched over to receive the transplant. Another patient also got worse on the control arm with a different medication (not Tysabri) and she also was switched over.
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Postby Isarflimmern » Mon Aug 08, 2011 11:58 am

georgegoss wrote:
It's hard to go wrong getting HSCT treatment with Burt. There is no better experienced facility.



I completely agree with George. As an MS patient who did the HSCT in November 2010 in Chicago, I would like to add that Dr. Burt and his entire team are very compassionate and caring. They will go above and beyond to make you feel as comfortable as possible.
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Postby shucks » Mon Aug 08, 2011 12:02 pm

Isar,
Have you had th types of progress that george and others have had from your treatment? Have you had any reversal of symptoms and gotten off of ms drugs?
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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