My HSCT Six Month Follow up

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My HSCT Six Month Follow up

Postby reallyreally » Thu May 22, 2014 8:57 am

I am not posting this to start a debate on whether or not people believe this is "the right" thing to do. I am simply stating my results. I researched, discussed and agonized over this decision for a year. I did not jump in blindly, it was a very thought out, personal decision. Trust me. I know the might, should, would, and all; so please don't try and "inform" (or bash) me.

Last October, I had HSCT stem cell treatment at Northwestern as part of the MIST clinical trial under Dr. Burt. I took copaxene, ate a very healthy diet, took tons of supplements and exercised (walk 2 miles, out in the sun) everyday. And still had new lesions, on my spine and brain. I spent 16 days in the hospital; about 5 weeks off and on in Chicago total. My insurance covered the procedure.

My 6 month follow results: The newest lesion on my spine (enhancing 6 months ago) is no longer detectable, and I have no new lesions. I have gone from a 4 EDSS to a 1 EDSS. Some problems that I didn't know I had have improved, like my vision and bladder. My balance is better, my cognitive ability is better, my hand/eye coordination has improved. And, that awful dark, brain fog has lifted. I still have the numbness, that may or may not get better. I am not on MS medication, but continue with everything I was doing before (walking, supplements). I am hopeful that each year I will improve and that I have put my MS in remission. I will go back in 6 months, then again once a year for the next few years. They have told me that Burt should be publishing his paper/results soon. Hopefully, opening the door to others that might want to try this option.
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Re: My HSCT Six Month Follow up

Postby DougL » Thu May 22, 2014 11:00 am

great to hear. i wish you continued success and healing
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Re: My HSCT Six Month Follow up

Postby RCC » Fri May 23, 2014 10:43 am

Good for you that is awesome news. I've been in contact with Dr. Burt's team as well and I am looking to be included into the trial. In my opinion it is very smart for the insurance companies to be funding this research...$150K for a one-time operation is much less than $50K/year for 10-30 years.
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Re: My HSCT Six Month Follow up

Postby MSandI » Fri May 23, 2014 11:30 am

That is great news for you!! Congratulations, I wish you continued wellness.
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Re: My HSCT Six Month Follow up

Postby CaroleK » Fri Aug 15, 2014 7:59 am

Great to hear! I'm also in Dr. Burt's study. I failed on 3 DMDs. Finished mobilization and head back to Chicago in early September for the transplant. HSCT, thankfully, is getting more press lately and, for those of us with aggressive, non-responsive MS, it is by far the best option out there! Don't worry...you won't get any bashing from me!! :-D
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Re: My HSCT Six Month Follow up

Postby CureOrBust » Sat Aug 16, 2014 4:40 pm

when are you scheduled to start treatment?
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Re: My HSCT Six Month Follow up

Postby reallyreally » Mon Aug 18, 2014 5:55 pm

CureOrBust wrote:when are you scheduled to start treatment?


CureOrBust-I had my treatment last October. I qualified for Dr. Burts clinical trial and my insurance covered my treatment. My six month follow up showed no new activity and I went from a "4" EDSS to a "1" EDSS. I can never be a "0" again. I am on no medication. I would have had the treatment done by my local Dr at UTSW (University of Texas at SW). But, insurance wouldn't cover it. (He is a research Dr!!!) This is his opinion!!!!! He thinks 4 days of high dose chemo should be first line treatment. (And they do it there, if you ask). Followed by 1 yr of copaxene. I am quoting him. I know a lot of people here do not agree with this treatment. But, I would absolutely do it again. I feel a great weight has been lifted.
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Re: My HSCT Six Month Follow up

Postby reallyreally » Tue Aug 19, 2014 3:26 am

CaroleK wrote:Great to hear! I'm also in Dr. Burt's study. I failed on 3 DMDs. Finished mobilization and head back to Chicago in early September for the transplant. HSCT, thankfully, is getting more press lately and, for those of us with aggressive, non-responsive MS, it is by far the best option out there! Don't worry...you won't get any bashing from me!! :-D


Awesome! Great hospital and great staff. My room overlooked a park and Lake Michigan. Literally, a million dollar view! If you want some practically tips, private message me.
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Re: My HSCT Six Month Follow up

Postby CureOrBust » Tue Aug 19, 2014 5:52 am

reallyreally wrote:CureOrBust-I had my treatment last October.
:oops: sorry, I meant to ask CaroleK, from memory she is in the trial and would therefore be stuck to their schedule, and when I read the trial info it had the results not being available for a number of years. yet you have already been treated. :?

reallyreally wrote:I would have had the treatment done by my local Dr at UTSW (University of Texas at SW). But, insurance wouldn't cover it. (He is a research Dr!!!) This is his opinion!!!!! He thinks 4 days of high dose chemo should be first line treatment. (And they do it there, if you ask). Followed by 1 yr of copaxene. I am quoting him. I know a lot of people here do not agree with this treatment. But, I would absolutely do it again. I feel a great weight has been.
If I understand this right, the doctor you wanted to do it would of recommended 1yr of copaxane, while Dr Burt has no long term medications after the treatment?

Can I ask you how much they charge for the treatment if undertaken privately? (PM would be OK if you see it as inappropriate)
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Re: My HSCT Six Month Follow up

Postby reallyreally » Tue Aug 19, 2014 7:32 am

CureOrBust--Reporting the results are different than treating the patients. They treat the patients over many years. Than compile the resulting information, then report the long term results.

Yes, the treatment at UT is a little different than Burts. They don't, for example. do the stem cell aspect of it. But, there is not a lot of the qualifying criteria for them to perform the procedure. You are given the high dose medication for 4 days in the hospital; and then outpatient follow up care.
They feel the copaxene for a year afterwards makes about a 5-7 % difference overall. They have been doing this procedure for years and perform it regularly.

Straight up, without complications, I was quoted $28,000. I had insurance coverage, so I opted for Northwestern. I think it is important for people to know that it is available. IF they think it is a treatment option they would like to pursue. Again, I know it is not for everyone :)
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Re: My HSCT Six Month Follow up

Postby CureOrBust » Wed Aug 20, 2014 3:38 am

reallyreally wrote:Yes, the treatment at UT is a little different than Burts. They don't, for example. do the stem cell aspect of it.
If they do not do the "stem cell" treatment after the chemo, that would tell me the medications they are using do not kill off the bone marrow; as also from my understanding, the purpose for stem cells in HSCT is to reinstate the bone marrow, to regenerate the immune system. Do you know if they are using HiCy at UT?it sounds very similar with the copaxane.

reallyreally wrote:But, there is not a lot of the qualifying criteria for them to perform the procedure.
I would guess a lot of the qualifying criteria was there at Burts because you were entering a trial.

reallyreally wrote:Again, I know it is not for everyone
I am interested in knowing of HSCT options from countries with a high Human Development Index, and by HSCT, I mean:

    Collection of Bone Marrow stem cells (from peripheral blood after medication)
    Chemo
    Stem cell injection
    Re-immunisation
And, because i would expect the Chemo to have completely wiped out my immune system, I would also expect to have to be re-immunised. If there is no need for re-immunisation, it sounds to me the immune system would still have a "memory" of all its previous "foreign invaders", which may include myelin.
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Re: My HSCT Six Month Follow up

Postby reallyreally » Wed Aug 20, 2014 8:45 am

"if they do not do the "stem cell" treatment after the chemo, that would tell me the medications they are using do not kill off the bone marrow; as also from my understanding, the purpose for stem cells in HSCT is to reinstate the bone marrow, to regenerate the immune system."

I am not a medical professional, but go by what I have read and learned through my year, or so, of looking into this treatment, and the different options.
The HSCT that Dr. Burt performs is NOT myeloablative ( does not totally ablate the bone marrow). You would absolutely still recover without the stem cell infusion. In fact, that is what baffles them at UTSW why do the stem cell aspect at all? You still recover and it significantly reduces treatment, cost and time; and achieves (in their opinion) the same results. The chemo regime wipes out T- and B-lymphocytes in the body so the body makes new naive, hopefully non-reactive cells.
I believe in Germany they do the myeloablative regime at Heidelberg and a few other centers around the world.

"Do you know if they are using HiCy at UT?it sounds very similar with the copaxane.""
Yes, it is HiCy.

I have also been fascinated by the fasting for 3 days which I have already done once, and will do every 3-4 months: Can't hurt, and I felt great afterwards:

"The researchers say fasting "flips a regenerative switch" which prompts stem cells to create brand new white blood cells, essentially regenerating the entire immune system.
"It gives the 'OK' for stem cells to go ahead and begin proliferating and rebuild the entire system," said Prof Valter Longo, Professor of Gerontology and the Biological Sciences at the University of California.
"And the good news is that the body got rid of the parts of the system that might be damaged or old, the inefficient parts, during the fasting.
“Now, if you start with a system heavily damaged by chemotherapy or ageing, fasting cycles can generate, literally, a new immune system."
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