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CVfactor wrote:For the non-myeoblative procedure, what is the recovery like? I know that with the myeoblative it is very critical to maintain sanitary conditions since you basically have no immune system after the procedure.

If the non-myeoablative method is less risky as far as post infection, this would probably seem like a more marketable option for people in the early stages of the disease.

Perhaps this graph may help to visualize the recovery profiles (although being in a clean environment during neutropenia is important with both protocols, perhaps a little more so with the myeloablative protocol due to longer average duration of cytopenia). . . .

http://2.bp.blogspot.com/-abM0YFUDhtQ/T ... rofile.jpg

The reason the line is dotted for the non-myeloablative HSCT protocol is because the total immunoablation will differ somewhat from patient-to-patient. This is also why it is a more difficult protocol to administer as opposed to the myeloablative (BEAM) HSCT protocol that does not have substantial variation from patient-to-patient.

If recovery timeframe were the only important factor to consider, I would opt for the non-myeloablative protocol. However, if other factors like treatment cost, treatment facility selection and confidence-in-efficacy are important, then one may opt for the myeloablative protocol as I did.

Is there a difference in the time spent in the hospital? From the graph it seems like immune system recovery is slightly better with the non-myeoblative but im not sure this translates into a shorter stay.

At any rate I think I would rather stay a little longer in the hospital if it ensures a more complete immune system memory deletion. Just my thoughts, not trying to put down the non-myeoblative method.

HUD45 wrote: Hope you get relief CV.

I think it is important to remind those considering HSCT,especially if specifically interested in the BEAM protocol that showing a history of using an immunomodulator type drug can be critical if not absolutely essential in being deemed a candidate. The drug therapy should show at least some effect on the MS course or symptoms for full consideration of candidacy. Even those with PPMS and no FDA approved drug should at least try and be able to document at least minimal positive outcome for acceptance into myeloblative HSCT......HUD

Thanks HUD, I hope the Copaxone works for me. But I guess I am not your typical MS patient because I first was struck with ADEM which is very similar to EAE. Right now Im at an EDSS of 4 and I acqured this state during a months hospitalization. So the doctors believe I am transitioning to MS so my goal is to stop prigression before more damage is acquired. You are most likely right that no one would give me HSCT without first being on a DMD so this is my only course of action now.

CVfactor wrote:Is there a difference in the time spent in the hospital? From the graph it seems like immune system recovery is slightly better with the non-myeoblative but im not sure this translates into a shorter stay.

At any rate I think I would rather stay a little longer in the hospital if it ensures a more complete immune system memory deletion. Just my thoughts, not trying to put down the non-myeoblative method.

Based on an apples-to-apples treatment comparison, it is likely the non-myeloablative HSCT protocl could be completed with a shorter hospital stay. In fact, the non-myeloablative protocol can actually be completed as a pseudo-outpatient procedure in which the patient can sleep outside (but close to) the hospital but ready to come in if needed (based on regular blood and body temperatrure checks). This is how Prof. Slavin performs his non-myeloablative treatment at CTCI in Israel. A good example would be Hud's treatment in Tel Aviv in which he followed this routine. (But I also know that Dr. Burt is ultra ultra conservative with his treatment in Chicago and keeps patients in the hospital for a longer time which differs from Prof. Slavin's treatment. Probably the result of fear of malpractice lawsuits that are so common in the United States.)

However, a myeloablative HSCT protocol being a more serious procedure you wouldn't dare do such a (outpatient) thing. The patient needs to be monitored very closely and continuously in a hospital setting ready to immediately catch any/every complication, no matter how small. This is the only way to maintain safety of treatment. Likely it would require a minimum of 21 days hospital stay if everything goes normally and there are no complications, as was my case.

There's also no question that the myeloablative HSCT protocol results in complete (or nearly complete) immune memory erasure, confirmed by titer analysis which is why all myeloablative HSCT recipients need to be re-vaccinated. The non-myeloablative HSCT protocol only partially erases immune memory and thought to be "just enough" to stop MS, but not so much as to require re-vaccination.

CVfactor wrote:Is there a difference in the time spent in the hospital? From the graph it seems like immune system recovery is slightly better with the non-myeoblative but im not sure this translates into a shorter stay.

At any rate I think I would rather stay a little longer in the hospital if it ensures a more complete immune system memory deletion. Just my thoughts, not trying to put down the non-myeoblative method.

For the non- myeloblative protocol I underwent, I spent 6 nights in the hospital only because of a neutropenic fever of unknown cause. The rest of the procedure was accomplished on an outpatient basis. I have spoken with two others since my treatment and they accomplished the entire therapy without any hospital stay at all. The point here is that every case is different.

As far as cleanliness is concerned, patients who are neutropenic, no matter what the protocol must be extremely careful to avoid infection through contact with others and diet in particular.

As far as recovery. Traveling home can be done in about the same time frame for both protocols. The full physical recovery is much longer for the myeloblative protocol however, which may be a good thing due to a more thorough "reset".....HUD

HUD, did your fever lead to a mild relapse? Dr Burt told me that that was the biggest risk with the nutripenic fever.

Hey shucks...

It sounds like Dr. Burt is very thorough in his consultations. Must have been exciting to speak to him personally. Good for you.

I would not say that I had a "relapse" due to the neutropenic fever but I felt pretty lousy and definately weaker. I had to force myself to go walk around the transplant ward in order to keep muscle strength and reduce spasticity.

No doubt though that the rigors of the procedure will most likely cause a worsening of symptoms in most patients but hopefully it is just a transitory worsening that improves with recovery....HUD

Sorry I've been incommunicado for a while. My wife gave birth to our second child last week and I've been a little busy (and missing some sleep, too!). I've posted a picture of our new son at the bottom of this page just in case some people actually like to see other people's baby pictures (no offense taken if you don't):

http://themscure.blogspot.com/2011/09/next-miracle.html

Another update for those that are interested. . . . . a Facebook page has been created by several HSCT recipients that has become a defacto gathering & meeting place for MS'ers that have already recieved HSCT, and for those planning to do so. A good place to add/ask/receive info. If you have an opportunity please join, or encourage others to do so:

georgegoss wrote:Sorry I've been incommunicado for a while. My wife gave birth to our second child last week and I've been a little busy (and missing some sleep, too!).

Congratulations

Congratulations!!

...

Who would have ever thought that one could have such a good virtual family and friends?

I'm just glad we could still have a healthy child even now that I'm completely infertile following myeloablative HSCT. And now that I can raise my children without MS dragging my life down anymore is the best gift.

Sincerely thanks to everyone for the nice wishes!

Way to go George.

Congratulations George

ya! nice George! congrats to you and your wife. with a name like Kai you have to get him surfing right away!