share experiences?

[Lisasberry]

The cost for non-meylo in Moscow is $40,000. But with the current exchange rate, my cost was $38,000. That is total hospitalization - Dr. Fedorenko takes chances with his patients - a very cautious and caring man. I came alone as there is really no reason to have a companion.

You are in a hospital room for one week of testing in which you are allowed to leave the grounds and explore the local area, but my legs only allowed a few 3 block excursions, but it was fun. After that, you are moved to the 3rd floor isolation unit, and visits become scarce until isolation, then none for close to 2 weeks.

Perhaps someone could travel to help upon discharge and stay in a hotel a few days to rest, sight see a bit, and then travel home. That would be my suggestion. Otherwise you are paying food and hotel for 6 weeks for a companion!

So cost is: HSCT, airfare, one night in a hotel before hospital admission, a 2-3 day stay (only if you choose) in Moscow to rest a bit and see some sights before heading home. You could flip this and have your companion fly over for check in, but I strongly feel it should be on the tail end of treatment.

I, however, am flying back alone. You get full service curb to ticket counter to gate to express customs lane in a wheelchair, so it will be pretty easy, Lisa - Protocol will follow in next post

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[JerryD]

Thanks, Lisa. Your account of your treatment makes it a lot easier to understand 'how to' get involved with the HSCT procedure. Keep the posts coming.

[KatieAgain]

JerryD

I personally met someone just a few weeks ago who had a stem cell transplant in Panama about 3 years ago. The transplant was done by Johns Hopkins Doctors. Apparently they were doing them off-shore since they could not get approval to do them in the US.

She was very straight up about it. She said it did not make any improvement to current damage that had been done, but it did stop progression, and continues to do so.

She said she would go through it again in a heartbeat, if progression starts up. But the Bottomline for her was it is not a total cure.

After discussion with her though, the future for new MSers is bright. I personally think that stopping progression at any point sounds pMessage
romising. But she is the only one I have personally met.

One would think everyone would share their experiences.

[JerryD]

I would hope that MSer's, from everywhere, would realize that sharing their experiences with any stem cell treatments means a lot to the rest of us. This stem cell topic seems to be the most 'promising' of all treatment options, so far. Good luck

[MSer102]

One would think everyone would share their experiences.

I think some of the people who didn't get any benefit might be too sad or embarrassed to talk about it.

[onlyairfare]

While it is a laborious process, and requires some understanding of medical terminology and the medical research process, one can go to PubMed at the National Center for Biotechnology Information website and look up the medical literature being published on this (or almost any other) topic. Most of the time, the abstract (summary) of the actual journal article there will tell you most of what you want to know.

I did a "quick and dirty" look at a summary that said basically "We need larger controlled trials to evaluate the risk benefit of stem cell transplant for treatment of MS." I think we already figured that out.

That said, a recent review article (2011) said the progression-free survival among SPMS patients at median follow-up of 39 months was 79%.

[JerryD]

'... a recent review article...' That says it was written in (2011), 2 years ago. How recent is that ? If it was NASA or the DoD this would be studied to 'death'. Nothing happens in MS research unless the 'tortoise' is pulling it. I am sick of waiting for stem cell research to become to the promising treatment that it seems to be. There was something happening at the Cleveland Clinic and then it got real quiet. I hope someone out there divulges the MSC results from the Cleveland Clinic. Good luck to all.

[onlyairfare]

The references I looked at pertaining to stem cell transplant in MS dated from 2004 - 2012. The two articles from 2012 were an open label Phase 2 study report, and a multi-center study from Italy (small study with significant limitations). This particular report in UpToDate had just been revised to incorporate "the latest" on July 24, two days ago.

The "review article" I cited from 2011 was a meta-analysis of 14 prior studies. That tells me that either there is 1) not a whole lot of work being done in this area, or 2) the results overall have not been very good, and hence have not led to a lot of publications.

The pace of progress in MS therapy is glacial. If you look at the weekly and monthly "Neuro News" type publications, there will be brief preliminary reports of something that "looks promising," often based on some recent professional neurology conference lecture. If that is not followed in the next 6 - 12 months by a major journal article on the topic, that usually means the results are not so promising after all.

Have you looked around the internet for the Cleveland Clinic MSC results? I don't recall seeing any major positive news. Face it, we'd all like a cure yesterday, but it's just not happening. Yet.

[JerryD]

I guess my stem cell curiosity comes from the fact that Dr. Burt at Northwestern and Dr. Slavin in Israel have been involved with this modality since around 2000 or earlier. There are several other clinics around the world that have been involved with stem cell treatments, also. I feel that this treatment holds the 'best' chance to stop MS.

[onlyairfare]

Your question spurred my curiosity so I did review the medical literature a bit more and I found a lot of reports from the 1990's on, so you are correct, it's not a new concept. Many of the studies involve diseases other than MS, and are usually done on small patient groups. Because there are high costs and sometimes serious complications (including death), the groups are small and the studies have a lot of limitations.

There are debates about the type of stem cells to use, how to get them, if or what type of ablative chemo to use and in what doses, whether the stem cells can be infused IV (where they will hopefully migrate to where they are needed and grow there) or should be injected directly into the area of concern (the brain and spinal cord in the case of MS) to work more effectively.

Until there are a substantial number of small studies demonstrating the "right way" to do stem cell transplants safely, with definitively good results, there won't be large studies done to confirm good results. And until there are good results with large studies, the FDA will not approve stem cell transplants as a standard therapy. FDA approval is usually required for insurance coverage

I'm no expert in immunology or cell biology, but it does look like stem cells are promising MS treatment, or even a "cure ." However, the scientific knowledge in this area is moving slowly.

[JerryD]

Thanks for your response, onlyairfare. There are, of course, lots of questions left to be answered. And while these are being answered, MSer's are getting stem cell treatment from Heidelberg or Moscow, etc.
There are several medical facilities in the US that can do this and have done it, but because of policies and procedures, it seems like it will be a long time coming. Keep posting. Good luck

[onlyairfare]

Thanks for your response, onlyairfare. There are, of course, lots of questions left to be answered. And while these are being answered, MSer's are getting stem cell treatment from Heidelberg or Moscow, etc.
There are several medical facilities in the US that can do this and have done it, but because of policies and procedures, it seems like it will be a long time coming. Keep posting. Good luck

You're welcome!

Usage of stem cell transplants in treatment of MS is an interesting topic. It reminds me of the saying attributed to the English poet John Donne. "As the islands of knowledge expand, so do the shorelines of ignorance." We ask some scientific questions, get some answers, and those answers then generate lots more questions.

As you can tell from this forum and your other reading, you may be able to undergo stem cell transplant in the US if you qualify for a clinical trial (not easy) or you are able to pay cash (also not easy). You'd need to do a lot of research to find the right place and program, and then be prepared to travel a lot unless you already live in Houston or Chicago or some other appropriate research center.

Otherwise yes, you travel internationally for stem cell transplant or wait here in the US for however long it takes.