With MS......Always keep your options open.

With Me…………

It was a little different….After 17 years…..I slowly find myself running out of options……I’ve tried the other therapies offered for MS….failed some of the treatments….and Stem Cell was basically a no brainer.  One of the last resorts for hanging on to the little mobility that I had left. 

The “Hail Mary”…so to speak. 

Don’t get me wrong…..I’m very excited for the guy in Australia.  I hope we learn a ton from him.  But………did he take some things off the table with the “conditioning” (chemo)? 

Hmmmm……..time will tell. 

******************************************************************************** 

My Buddy: “Gardener” at PLM… has a little different take on things. I seek input from her on many things.  She is a very smart lady and has done a ton of research for me.  She wrote something in regards to the procedure in Australia the other day at PLM I’d like to share: 

Gardner writes: 

       “Hey, Smallie. I’m back.

I read the article, and have a few observations. The conditioning the patient underwent is the same procedure that’s been used for MS for a few years now, but it’s usually reserved for patients failing standard DMDs. First, a drug is given to the patient to increase their stem cell levels, then those cells are extracted. I’m a little confused on one part, because when hematopoietic stem cells are extracted here (in the US), they’re taken from peripheral sources (blood) and not from the bone marrow. Mesenchymal (like you did) still have to be extracted from bone marrow. I recall you writing that:…that was the best part of the procedure.Tongue out

My confusion is in the conditioning, which involves using chemo to wipe out the immune system, then re injecting the stem cells. When hematopoietic cells are used, the immune is wiped out (mostly), and when mesenchymal are used, the immune system is left alone. I don’t know if it’s bad science reporting, or a really unconventional procedure that’s not commonly used, but the details seem wrong. 

The bit about the patient being in a wheelchair, and losing his vision? That happens a lot, especially in the early stages when MS is frequently at its most active. The patient mentioned was diagnosed last year. Chances are, nearly anything would have had him out of a wheelchair and restored his vision. That’s just how MS works. Lots of people have severe relapses that leave them immobile and nearly blind, and most of them recover. At least early on.  

Early on in MS, nearly everything works, and the biggest factor in recovery from a relapse is time. I am curious why the patient’s doctor decided to treat someone with stem cells as a first treatment. I can see the value to researchers, but the patient doesn’t seem to stand to benefit nearly as much as they do. Considering when the man was diagnosed, he would have been considered a “naive” patient. That doesn’t refer to personality, just to patients that haven’t had any MS treatments. Those patients are quite valuable to researchers; there are fewer and fewer of them as the MS drugs become more widely used early on in disease treatment. 

Using chemo so early also may preclude the patient from some upcoming treatments. There is growing evidence that use of chemo agents may make monoclonal antibody treatments (like Tysabri) less safe in the future for that patient.  

To be honest, the story makes me a little queasy. I don’t know why a doctor would use that kind of treatment on someone so early in their MS. The doctor skipped around some rules, and traveled to a less regulated area to do the procedure. I’m not sure if the patient was given other options, or if he was part of a study, although I would guess not. 

I’ve been following your progress, it sounds like things are going well. I hope for New Year’s Eve, you and your wife are able to go dancing.  

“Gardener” 

************************************************************************** 

“Gardener” is a very smart cookie and on this one……..I must agree…… 

Be Well,

Todd

Advertisements