This Is MS Multiple Sclerosis Community: Knowledge & Support

Dulled awareness, that's the best denomination I have heard so far for this always present crappy feeling. Well Shucks, here's one of the direct benefits of re setting the Immune system. Just had a nap and again I woke up into this crystal clear awareness I once used to possess.

Congratulations on a new life Asher - glad to hear about your steady progress!

I have a question for you or George.... aside from the obvious risks that one takes by re-setting the immune system until blood counts come up, (infection, etc...), what are the long term effects on the body/organs, from the chemo used during this process?? Is there radiation involved as well or is it just chemo drugs?

Thanks for your answer & all the best in your journey to improved health.

Great questions, dlb. And very relevant, too!

No radiation. Very risky, not required and no added benefit. So a safer chemical-only protocol does the job of resetting the immune system for MS. (The early clinical trials used total body irradiation (TBI) and they discovered that the ionizing radiation caused far more problems than it solved. So after phase I they realized that TBI is not at all helpful.)

Long-term downside (main risks) of the procedure?

1) Probable sterility for both men and women. (Expecting this I banked my sperm.)

2) A risk (not definite) of early menopause or andropause. Not common, but sometimes happens. (It happened to me but easy to treat with HRT which is easy.)

3) Small risk of a latent cancerous malignancy due to the chemo drugs used (which are carcinogenic). The risk is approximately 1.5% chance at five years post-transplant.

Those are the main ones of consequence.

I describe some of the issues related to treatment on this page:

http://themscure.blogspot.com/2010/02/l ... s-day.html

Here's a relevant paper with some info in it in which they cover the minor long-term issues as well. . .

Long-term care after stem-cell transplantation

http://online.haematologica.org/thj/2004/6200420a.pdf

Monday morning. My GP came round to check up on me and collect blood and urine samples. I'm doing fine apart for an insatiable need for rest. The high dose chemo has nuked my immunesysteem, and with it my vitality. But I was reassured it was a matter of time before my stamina starts to pick up again. The 4 week stay at hospital has also resulted in a significant weakening of my already MS afflicted limbs. This will also take time and exercise to restore. But bottom line, with each day I'm feeling better and I'm thrilled by the thought that I am most likely MS free now. Kind of surreal.

Thanks George, for your reply to my question! Hey... it's not like there aren't risks involved with any of the disease-modifying options we have available to us, right?!?

You're absolutely right, dlb. Its all about the risk / benefit ratio (trade off). In that case it is each individual's decision to make. If left up to (neurologist) doctors, no one would ever get HSCT to stop their MS disease and instead just continue on chronic drugs for the remainder of their lives. I'm glad I took my own health into my own hands, as I'm sure Asher likely feels the same way.

I fully subscribe to this p.o.v. In fact, for me, and from speaking to George I know he feels that way too, the tradeoff is not only a medical risk assessment. The tradeoff is between a wheelchair, losing my independence and ability to parent my son and be a man for my wife, and between the pretty high probability of an MS free future. For me this prospect is worth any price, even the very small risk of not surviving this procedure. If there's anything that life has taught me, it is that there are no free lunches and no easy fixes.

Some random thoughts; Friday will be a month to my stem cell transplant. Time flies and this morning I woke up into a whole new level of well being. I still feel weak, but I feel life is flowing back into my body. Interestingly, tonight I had a dream of the future. I saw myself walking again with a very minimal impairment. I am also starting to entertain thoughts of my professional future. These are things that no longer crossed my mind for a long time now. I just didn't dare to. It may sound trivial, but this is a paradigm shift in my experience of the concept future. I have no way of predicting the future and the outcome of my HSCT procedure, but there is hope again that is solidly grounded in science. Have a lovely day, Asher

Way to go buddy. Keep us posted on your success and recovery.

_________________
"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?

Today I officially exited the most acute danger zone and I am working my way towards complete recovery. This will take a while, but every day continues to be better than the day before. Yesterday I went for a walk with my wife, a very short one, but never the less I ventured out and made a few steps. My GP called on me today and told me that my blood values are completely restored now and that my kidneys function well. As of next week I will have a physiotherapist visit me twice a week. Objective is to get the musculs that were wasted during 1 horizontal month going again.

Now I realize many of you following this thread would love to hear about concrete curative results of my procedure. I would love to oblige you with such juicy detailed, but I'm afraid it is much to early to judge. The theory goes that I am MS free now. That is to say that the 'packman' that was eating into my nervous system has been eradicated and that no disease progression will take place. Whether that is the case will start becoming apparent in the coming months. If this is the case, my primary objective has been achieved. As to the damage caused by 15 years of MS, resulting in an EDSS of 4.0, time will tell whether my body has the capacity to restore some of the damage. I expect nothing. I will live each day as it comes and make the best of it.

Having said all of this, I still need a lot of rest and sleep, but my MS hug isn't there anymore. Hopefully a promise of things to come. As time goes by, the chemo and hospital memories are stating to fade and make place for thoughts about a creative future.

.

Thanks Lyon

Keep that attitude. Attitude really is everything in any recovery. I really like to keep up with your progress, so keep the updates coming.

_________________
"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?

Are you UK based Asher?

My husband recently attended a talk for newly diagnosed ms people and was told that stem cells were about ten years off. What would you say to that?
Bear in mind that the other half suffers from progressive ms..

No Daisy3, just across the channel, I'm Dutch.