My CtrlAltDel - Status

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Re: My CtrlAltDel - Status

Postby shucks » Mon Dec 12, 2011 9:03 am

Thanks for the further explanation. Exactly what I wanted to know.
"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

Who is John Galt?
User avatar
shucks
Family Elder
 
Posts: 187
Joined: Fri May 06, 2011 3:00 pm

Advertisement

Re: My CtrlAltDel - Status

Postby HUD45 » Mon Dec 12, 2011 9:09 am

Asher, very eloquently put. Excellent descriptions of your recovery process. I look foreward to your future assesments on your recovery. It sure seems like you are doing all you can to facilitate as much physical and mental recovery as possible. An important part of the recovery is having patience and blocking out the frustration of leftover disability. I sincerely wish you the best possible future recovery...HUD
User avatar
HUD45
Family Member
 
Posts: 30
Joined: Mon May 30, 2011 3:00 pm

Re: My CtrlAltDel - Status

Postby Asher » Mon Dec 12, 2011 9:45 am

Same here Hud :-D
User avatar
Asher
Family Elder
 
Posts: 337
Joined: Sun Jan 31, 2010 4:00 pm

Re: My CtrlAltDel - Status

Postby merlin26 » Mon Dec 12, 2011 4:03 pm

I'm curious isn't revimmune pretty much the same thing as this protocol? Only difference being they dont remove your stem cells in revimmune. They just stimulate them with iv drugs to help rebuild your immune system, right? Why would one protocol be more curative than the other? Don't they pretty much give a similar outcome/benefit? I was leaning more towards revimmune due to it being the safer protocol but if HSCT has better results than id rather risk that. Could anyone perhaps help convince me which one they think would give me more of a chance to be cured of this retched disease?
User avatar
merlin26
Family Member
 
Posts: 55
Joined: Thu Dec 09, 2004 4:00 pm

Re: My CtrlAltDel - Status

Postby Asher » Tue Dec 13, 2011 1:19 am

This is what was written about Revimune vs HSCT in the stem cell part of the forum:

stem-cells-f25/topic16439.html
User avatar
Asher
Family Elder
 
Posts: 337
Joined: Sun Jan 31, 2010 4:00 pm

Re: My CtrlAltDel - Status

Postby georgegoss » Tue Dec 13, 2011 5:02 pm

merlin26 wrote:I'm curious isn't revimmune pretty much the same thing as this protocol? Only difference being they dont remove your stem cells in revimmune. They just stimulate them with iv drugs to help rebuild your immune system, right? Why would one protocol be more curative than the other? Don't they pretty much give a similar outcome/benefit? I was leaning more towards revimmune due to it being the safer protocol but if HSCT has better results than id rather risk that. Could anyone perhaps help convince me which one they think would give me more of a chance to be cured of this retched disease?


Just finished writing about this topic on this other page. . . . .

stem-cells-f25/topic18527.html
User avatar
georgegoss
Family Elder
 
Posts: 283
Joined: Sat Oct 30, 2010 3:00 pm
Location: California

.

Postby Lyon » Tue Dec 13, 2011 7:50 pm

.
Last edited by Lyon on Thu Dec 22, 2011 6:42 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Re: My CtrlAltDel - Status

Postby georgegoss » Tue Dec 13, 2011 8:46 pm

Lyon wrote:Hi Liberation. While this article is specific to Revimmune because it's centered on the Revimmune researchers, I've always found it an interesting read https://docs.google.com/open?id=0B3me8Y ... ZlZGIwOWNm


Good article, Lyon. Provides a good explantation and background.

I'm not bad-mouthing Revimmune (Cyclophosphamide). It's a good drug and can be very effective in many settings. But I think it also important that it be clearly disclosed that the Hopkins researchers that developed this drug application for MS have also filed for patent protection. So if HiCy is ever used as a mainstream treatment for MS, then the profits will go to these doctors. For this reason it's no wonder they would be promoting it over HSCT (which is not patentable).

BTW. . . the same article you posted as displayed on a webpage (which might be easier for some to read). . . .

http://www.hopkinsmedicine.org/hmn/w08/feature1.cfm
User avatar
georgegoss
Family Elder
 
Posts: 283
Joined: Sat Oct 30, 2010 3:00 pm
Location: California

Re: My CtrlAltDel - Status

Postby Asher » Wed Dec 14, 2011 12:03 pm

I am in the habit of reporting conservatively. Before reporting any improvement, I want to make absolutely sure that it is a sustained improvement. This is now the case: For nearly 4 weeks, and for the first time since 3 years, I can walk without any walking aides. Specifically, no walking stick and no orthopedic walking aid. It’s not like I can do a catwalk, I limp and my walking is limited to a few hundred meters, but I can walk unaided without falling flat on my face. I expect my next report will be by end February, after I have had the results of my first post HSCT MRI. Wish you all a Marry Christmas and a happy new year. Asher
User avatar
Asher
Family Elder
 
Posts: 337
Joined: Sun Jan 31, 2010 4:00 pm

.

Postby Lyon » Wed Dec 14, 2011 12:09 pm

.
Last edited by Lyon on Thu Dec 22, 2011 6:42 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Re: My CtrlAltDel - Status

Postby CVfactor » Wed Dec 14, 2011 5:19 pm

Im curious about the facility in Germany that George and Asher had HSCT. It seems that they have a well established protocol and seems they do this on many people with MS. So does this mean that it is a recignizes treatment in Germany or are they mostly catering to people who have the wealth to have this performed?

It seems that the donor cell type of HSCT is viable for some types of leukemia treatment. If this is the case are there any facilities in the US that do this and if so why wouldnt they perform the autologus type for people who have the funds?
User avatar
CVfactor
Family Elder
 
Posts: 247
Joined: Sun Jan 16, 2011 4:00 pm

Re: My CtrlAltDel - Status

Postby shucks » Wed Dec 14, 2011 5:51 pm

I would think that with this disease the donor type would be way too risky. You risk graft vs host disease and loads of other things that would be way worse than taking your own cells, saving them, and giving them back. I met with my PCP yesterday, who has been the most supportive guy in the world, and he told me he would recommend the non myleablative, but not the one that george and asher got, as he has had a fair amount of patients, and his best friend, die from secondary infections for other diseases. This probably isnt a topic for this thread, but if you start a new thread, I'm sure you will get a fair amount of responses.
"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

Who is John Galt?
User avatar
shucks
Family Elder
 
Posts: 187
Joined: Fri May 06, 2011 3:00 pm

Re: My CtrlAltDel - Status

Postby georgegoss » Wed Dec 14, 2011 6:36 pm

CVfactor wrote:Im curious about the facility in Germany that George and Asher had HSCT. It seems that they have a well established protocol and seems they do this on many people with MS. So does this mean that it is a recignizes treatment in Germany or are they mostly catering to people who have the wealth to have this performed?


The (BEAM) HSCT protocol in Germany is well-established because they do it very often for cancer patients and are very familiar with administering it in a safe manner. However, they haven't specifically treated that many MS patients (but the number is slowly growing), but it doesn't really matter because the HSCT treatment protocol for MS is nearly identical to that of cancer.

Yes, they perform HSCT for MS for profit for patients from overseas that can pay cash for the procedure (approximately 50,000 Euros).

I understand that the German health care system is likely to pay for the procedure only for those people that are enrolled & insured in the German health care system. Very fortunate for them.

CVfactor wrote:It seems that the donor cell type of HSCT is viable for some types of leukemia treatment. If this is the case are there any facilities in the US that do this and if so why wouldnt they perform the autologus type for people who have the funds?


Shucks is correct. Although an allogeneic (doner stem cell) transplantation procedure will also cure MS, it is a very dangerous (approximately a 1/3 death rate) procedure and is only used for specific types of (untreated) terminal cancer that cannot be cured with an autologous (own stem cells) procedure. But also, an allogeneic transplantation procedure is not necessary for MS since an autologous HSCT procedure works well to cure MS.

There are hundreds of hospital facilities in the United States that can and do perform HSCT procedures all the time for cancer. But none (except Dr. Burt at NWU Chicago) will perform HSCT for an autoimmune disease such as MS because it is not yet considered "mainstream treatment" for MS and they are scared to perform the procedure out of fear of being sued and losing a ton of money in an out-of-control court judgement. That will change when HSCT becomes FDA-approved for MS in approximately ten years. Germany doesn't have this problem because they have enacted legal tort limits that strictly limits malpractice payouts. So the Germans are not scared to perform HSCT for MS today.

So you can pay to have it done in Chicago if you meet their inclusion criteria. Or you can have it done at a reputable medical facility overseas. You can read about treatment facilities here:

http://themscure.blogspot.com/2011/06/g ... -have.html
User avatar
georgegoss
Family Elder
 
Posts: 283
Joined: Sat Oct 30, 2010 3:00 pm
Location: California

Re: My CtrlAltDel - Status

Postby CVfactor » Wed Dec 14, 2011 7:16 pm

Sorry I didnt mean to imply that the donor cell type HSCT would be necessary for MS just that if there are facilities in the US that do this it seems they should also be able to perform the HSCT type with the patients own stem cells.

Its too bad they couldnt have some sort of legal waiver to start doing this in the states.
User avatar
CVfactor
Family Elder
 
Posts: 247
Joined: Sun Jan 16, 2011 4:00 pm

Re: My CtrlAltDel - Status

Postby merlin26 » Wed Dec 14, 2011 7:28 pm

Wow that sucks for me then. I dont have 50,000 euros and I dont think ill ever be in the financial position to be able to pay the 50k euros. Once again people with money win out over those of us that dont as of yet have any. If I sound bitter its because I am. I was diagnosed at 25 the youngest patient my neuro says he'd ever seen and now im 33 and on SSDI. So in summary I can wait until im 43 and have this procedure done and covered by Medicare or come up with 50k euros. Either way ive lost out on my youth, fantastic.
User avatar
merlin26
Family Member
 
Posts: 55
Joined: Thu Dec 09, 2004 4:00 pm

PreviousNext

Return to Stem Cells

Who is online

Users browsing this forum: No registered users