3 year (1/2) HSCT checkup.

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3 year (1/2) HSCT checkup.

Postby reallyreally » Fri Feb 17, 2017 8:05 pm

Had HSCT done at Northwrstern Oct 2013 as part of the clinical trial. Just got my MRI and check up. My MS is still in remission. I am on no MS medications and have no new lesions. A couple previous lesions are almost undetectable now Still feel better than I did pre transplant. And would go through it all over again-no regrets.
I think the trial is over, but he is still taking new patients on a compassionate basis if anyone is interested.
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Re: 3 year (1/2) HSCT checkup.

Postby notasperfectasyou » Sun Feb 19, 2017 8:06 pm

Congratulations ReallyReally. Was this with Dr. Burt? What was your EDSS before and what is it now? What was their screening process like to get in? Thanks for posting, Ken
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Re: 3 year (1/2) HSCT checkup.

Postby reallyreally » Tue Feb 21, 2017 8:29 pm

1) Yes this was with Dr. Burt at Northwestern.

2) What was your EDSS before and what is it now
I started at a 5.5 and am now a 1.5.

3) What was their screening process like to get in?

I was in the clinical trial. I had to enhancing lesions within a short time when I was first evaluated. I was accepted into the trial; but received the control group. which meant, no HSCT. But, had to continue on with my drug...Copaxene. And, hope to have another attack, lesion, and have my EDSS increase. It was not an easy decision for me to stay in trial. Especially, since a local hospital would do what they considered, a comparable treatment. They did/do the 4 days of immune system ablation, just no stem cell recovery. They say similar outcomes, for about 30K.

I did get worse; and had new brain lesions 8 months later. I was switched over and received treatment. Luckily, my treatment was covered by my insurance.
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Re: 3 year (1/2) HSCT checkup.

Postby Stolzk » Sun Feb 26, 2017 3:06 pm

Congratulations! I am excited for you! Couple questions though. I am not following your course of treatment. You ended up being randomized to receive no stem cells??? During follow up you developed enhancing lesions so you were able to switch over and receive stem cells??? Did you receive chemo???
What is this ablation treatment you mentioned??? What facility had a similar treatment and what was it???
Sorry for the questions but I've been researching stem cells and have actually been accepted to go to stemgenex. This is getting stem cells from you own fat and reintroducing into your body. This doesn't "reset" your immune system though and all the red flags go up when you look into their company. They are huge salesman, they don't follow their patients for more than a year and they only give you patient testimonies. The testimonies on the fb reviews are mostly positive though and makes me want to give it a go. The chemo route scares me so I was just wondering what your course of treatment involved.
Thanks
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Re: 3 year (1/2) HSCT checkup.

Postby reallyreally » Thu Mar 02, 2017 9:56 am

"You ended up being randomized to receive no stem cells??? During follow up you developed enhancing lesions so you were able to switch over and receive stem cells??? Did you receive chemo???"

For Dr. Burt's clinical trial at Northwestern in Chicago. Once you were accepted into the trial....you were randomized to either receive HCST; or you stay on an FDA approved treatment. I was randomized to receive standard treatment-Copaxone, in my case. Once I got worse on Copaxone (enhancing lesions and physically declined). I was switched over to receive HSCT. Treatment is stem cell harvesting, chemo, then my own stem cells were infused back into my system.
If you are researching, I would take any "red flags go up" to heart. Through my own research, I personally believe that the immune system reboot is the key, more so than the stem cells.
Good luck with your research!
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Re: 3 year (1/2) HSCT checkup.

Postby Pesho » Thu Mar 16, 2017 2:22 pm

reallyreally, from 5.5 to 1.5 sounds incredible. Can you please tell us what issues you had 5.5 and what got improved and how much? I'm 2.0 and no one besides me can tell that something is wrong with me. I have some pain in the back and slight bowel problems. I've been stable for the last 5 years on Ocrelizumab but it will be over at some point and has certain limitations.
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Re: 3 year (1/2) HSCT checkup.

Postby reallyreally » Wed Apr 26, 2017 2:02 pm

Pesho wrote:reallyreally, from 5.5 to 1.5 sounds incredible. Can you please tell us what issues you had 5.5 and what got improved and how much?
.


I think the EDSS can be subjective. I was affected over many areas, so no single issue was debilitating.

Before and after HCST

1) Tightness in chest (didn't realize I had)-- Gone
2) Balance problems-had been getting worse-- Still some slight balance (when I close my eyes, and stand one one foot), but mostly gone
3) Brain fog (didn't really realize i had)-- My scores have improved on testing, and almost immediately (while still in hospital) my "scramble
with friends" score improved dramatically-haha
4) Numbness in leg and trunk-- Still there
5) Difficultly swallowing & choking at times-- Gone
6) Bladder urgency-- Improved, but not gone (am I just getting old?)
7) Vision-- Improved.

Fatigue never really affected me. Hope this answers your questions. I feel some of my symptoms come back when I get stressed or really tired, which the Dr explained is normal.
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Re: 3 year (1/2) HSCT checkup.

Postby Algis » Fri Apr 28, 2017 7:18 am

Way to go reallyreally! Glad to hear all the good news.

Be well;

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