I'm curious

[JerryD]

I have been watching these posts for several years. I wonder where the post HSCT patients are? I mean .. if there have been several successes ( as has been suggested ) and I know that Dr. Burt has treated several hundred MS patients over the last 10 years, where are they NOW ? Why haven't I read an account from post HSCT patients on this message board ? I am the curious type.
One can check the clinicaltrials.org site and see that Dr. Burt is gearing up for another trial using HSCT. There are several sites around the world that are starting to perform these types of trials. Where are the post HSCT patients ?
Anyone have any ideas ?

[NYJenn]

Pray, tell: what is HSCT?

[bree2013]

From Wikipedia...

Pray, tell: what is HSCT?

Hi Jenn,

"Hematopoietic stem cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. It is a medical procedure in the fields of hematology, most often performed for patients with certain cancers of the blood or bone marrow, such as multiple myeloma or leukemia. In these cases, the recipient's immune system is usually destroyed with radiation or chemotherapy before the transplantation. Infection and graft-versus-host disease is a major complication of allogenic HSCT.

Hematopoietic stem cell transplantation remains a dangerous procedure with many possible complications; it is reserved for patients with life-threatening diseases. As the survival of the procedure increases, its use has expanded beyond cancer, such as autoimmune diseases."

I know someone with Chronic Lymphocytic Leukemia (CLL) and they may have to consider this in the future or a "less invasive" form of a stem cell transplant.

Anyway, that's the definition of HSCT.

Bree

[bree2013]

I have been watching these posts for several years. I wonder where the post HSCT patients are? I mean .. if there have been several successes ( as has been suggested ) and I know that Dr. Burt has treated several hundred MS patients over the last 10 years, where are they NOW ? Why haven't I read an account from post HSCT patients on this message board ? I am the curious type.
One can check the clinicaltrials.org site and see that Dr. Burt is gearing up for another trial using HSCT. There are several sites around the world that are starting to perform these types of trials. Where are the post HSCT patients ?
Anyone have any ideas ?

Good question Jerry. I know HSCT is very serious. I read a bit about it a while ago and if I remember correctly, because of the the graft-vs-host, etc. if a patient makes it past the 5 year mark -- that's a big deal. And "make it" doesn't mean they aren't dealing with a slew of physical problems. It's very risky, but the payoff can be big.

And you're right -- where are the success stories? Are they busy trying to deal with the after effects of this procedure and posting on boards just isn't a high priority?

If would be nice to hear from a few and hear how they're doing.

Bree