1 year and still cured of MS

[georgegoss]

Some people might have some negative or opposition comment, but I'm still happy to be cured of MS. No one can take that away from me (or the many others that have endured the same procedure) that cured MS.

http://themscure.blogspot.com/2010/12/1 ... tatus.html

[scorpion]

Some people might have some negative or opposition comment, but I'm still happy to be cured of MS. No one can take that away from me (or the many others that have endured the same procedure) that cured MS.

http://themscure.blogspot.com/2010/12/1 ... tatus.html

I am glad you are feeling better georgegoss.

[Looking88]

Congratulations on your treatment George.

Post treatment monitoring seems to be an important aspect for the trial participants.

I studied your blog and saw that your recovery was managed by an oncologist.
Could you tell me how you got that set up?
Did you just need to tell your primary care physician that you were getting this treatment and they set you up with an oncologist?
Did you get weekly blood tests to ensure prompt treatment of any bad outcomes?
Did insurance cover post treatment care?

Hopefully this is not too personal. Just trying to work out the logistics.

Thanks.

[Looking88]

I think I figured this out (studied the blog more): You need one heck of a primary care physician to manage recovery.

Any additional advice is still appreciated.

[georgegoss]

Congratulations on your treatment George.

Post treatment monitoring seems to be an important aspect for the trial participants.

I studied your blog and saw that your recovery was managed by an oncologist.
Could you tell me how you got that set up?
Did you just need to tell your primary care physician that you were getting this treatment and they set you up with an oncologist?
Did you get weekly blood tests to ensure prompt treatment of any bad outcomes?
Did insurance cover post treatment care?

Hopefully this is not too personal. Just trying to work out the logistics.

Thanks.

Hi Looking 88,

I'll just say it up front. . . . post HSCT transplant monitoring by a good doctor is CRITICAL.

And you are exactly correct. I didn't ask my doctors for permission to do HSCT to cure my MS. I told them I was going to get HSCT, regardless. And they were good enough to accept that I would need careful monitoring follow-up care following my return from treatment and assigned an oncologist/hematologist to me (this doctor specialty commonly has the most experience with HSCT treatment in the mainstream world for cancer) so that I could be properly monitored for recovery & potential complications following my treatment. And although they have not acknowleged it, my medical provider (Kaiser Permanente) actually saves a ton of money on me having had the HSCT procedure. I no longer take any medication of any kind to treat my MS following my HSCT since it has completely stopped (and reversed/improved) all progression of my MS. I used to take expensive interferon and now take nothing. In the end it was much more economical for Kaiser to use an oncologist/hematologist to test my blood for a year (weekly, and then later monthly) as opposed to paying for my expensive medication for the rest of my life.

Amazingly this is a win/win situation for everyone. Kaiser saves money and I'm cured of MS!

[Looking88]

Thank you George.

[Looking88]

New question George: After HSCT you are supposed to avoid crowded places.

How did you get from Germany to California without being exposed to germs?

Thanks.

[georgegoss]

New question George: After HSCT you are supposed to avoid crowded places.

How did you get from Germany to California without being exposed to germs?

Thanks.

At the airport and on the airplane I wore a P-100 rated filter face mask like this one. It was actually comfortable to wear.

http://www.professionalequipment.com/3m ... ust-masks/

The N-100 version will also work fine.

http://www.airgas.com/browse/productDet ... ct=3MR8233

Then I didn't touch other people, didn't eat the food (brought some of my own power bars & pre-packaged processed snacks) and only drank bottled beverages (water & juices). I also carried a bottle of gel-based alcohol hand sanitizer and used it often. (You can bring up to 100ml through airport security, which is plenty for the trip.)

I made it home without any infections. But I was always paranoid of being exposed to something. Maybe that's what helped to ensure I behaved in a safe manner.

[Looking88]

Thanks and a new question: If you were newly diagnosed and wanted bridge treatment until HSCT, could you use Tysabri as the bridge?
I think I heard it takes 6 months to get Tysabri out of your system, so maybe Copoxane would be a better bridge?

I ask about Tysabri because some people have such great results with it.

[georgegoss]

From the literature I have read it appears that Tysabri is the most eficacious of the injectable/infused immunomodulators. Oral Fingolimod also looks quite effective.

I don't have direct experience with anything except Avonex, so I can't make any suggestions on what to take as a bridge medication. But if you want to go for Tysabri, I think you should go for it. I have discussed this specific (drug discontinuation) subject with a patient participant in the HALT trial (had substantially the same procedure as me) and he told me that several of the transplantation study participants were taking Tysabri just prior to their procedure. He told me that everyone had a 6-8 week washout period from whatever drugs they were taking and everyone did just fine. So "if it were me," (just my personal opinion), I'd discontinue Tysabri 8 weeks prior to the mobilization phase of the HSCT treatment. (I discontinued Avonex 6 weeks prior.) A few weeks is unlikely to make much of a difference in the final outcome post-transplantation.

Sorry that I can't add much more than this.

The good news is that you will most likely never again have to take any immunomodulator drugs following the stem cell transplant. After 15 years of use I haven't taken Avonex (or any other MS drug) following my transplant procedure and my disease is not only stopped, it's also reversing. I love no longer injecting medication! A major contribution to the enjoyment of my daily life.

Feel free to ask questions as you think of them. I'm happy to share my experience. Please don't answer if you don't want to. . . . may I ask which protocol are you planning to have and when?

[Looking88]

To be honest it is not for me and we do not have a diagnosis yet. I am just scared and looking for the best solution.

Please nobody take my opinion on anything here.

I found this document: http://jama.ama-assn.org/content/299/8/ ... l.pdf+html
Clinical Applications of Blood-Derived
and Marrow-Derived Stem Cells for
Nonmalignant Diseases
It is from 2008

It does not break the types of MS down very much or show EDSS scores. It seems to not show a correlation between myoablative and lymphoablative efficacy.

The fact that it is not possible to get the MIST protocol makes the BEAM protocol look like the only valid option. Revimmune has had mixed success.

I did see a video showing one of Doctor Freedman's patients progressing (it is in the video showing his star success story). I do not know how far along she was before she got the treatment.

I would welcome any studies or data showing the superiority of the BEAM protocol.

Thank you.

[Looking88]

It does not break the types of MS down very much or show EDSS scores. It seems to not show a correlation between myoablative and lymphoablative efficacy.

I meant to say it does not seem to show a difference between protocols.

[Looking88]

I think I should add George that I hope and pray you are correct about the HSCT. I hope it works for you and for the 23 people in the HALT trial.

If it was me, and I had to choose right now, I would be on a plane to Germany.

I also appreciate your blog and all of the detailed information you have provided.

I just wish we had more data on long term HiCy, Lymphoablative, and Myeoablative results.

I do know that the longest term success stories I know about (Craig, Sandi Selvi, that hockey coach) were all HSCT (I am pretty sure).

Okay, best of luck, and I will shut up now.

[georgegoss]

Thank you for your kind words, Looking88.

Going for HSCT as a treatment for MS is of course a personal decision. For me, it was the right one. Today I feel better and have fewer symptomatic clinical manifestations from my MS than I've had in over ten years, together with continuous improvement. I think its just a matter of time until the treatment success results will be borne out by the clinical trial long-term data. If everything remains on course, extrapolating from here I'm looking forward to HSCT becoming FDA approved therapy. I think it is an inevitable eventuality.

I sincerely wish the best for your absolute positive health in this New Year and going forward!

[elliberato]

Was your procedure similar to what Burt is doing at Northwestern?