Stem cell debate

[Torn]

Ive noticed a lot of people discussing pros and cons about the stem cell trials going on.
I just started tecfidera but was also accepted into a stem cell transplant trial in Texas. I live in ca and have four young kids. Because of prior low lymph count being on tecfidera may be temporary for me. I was told by the trial doctor that my window for having a true successful transplant is closing due to how quickly my disease is progressing and my edss score.
The thought about going through this procedure scares me, but the thought of missing this opportunity s areas me too! If I wait too long long and tecfidera doesn't work, I have no other options.
I'm still waiting to do the final consult with labs, MRI, ect. Which might eliminate me anyways, but I really don't know what to do.
I'm dealing with so many decisions right now, and I'm scared to make any at all! Please give me your opinion. I'm scared.

[Willow63]

Ive noticed a lot of people discussing pros and cons about the stem cell trials going on.
I just started tecfidera but was also accepted into a stem cell transplant trial in Texas. I live in ca and have four young kids. Because of prior low lymph count being on tecfidera may be temporary for me. I was told by the trial doctor that my window for having a true successful transplant is closing due to how quickly my disease is progressing and my edss score.
The thought about going through this procedure scares me, but the thought of missing this opportunity s areas me too! If I wait too long long and tecfidera doesn't work, I have no other options.
I'm still waiting to do the final consult with labs, MRI, ect. Which might eliminate me anyways, but I really don't know what to do.
I'm dealing with so many decisions right now, and I'm scared to make any at all! Please give me your opinion. I'm scared.

I was thought to have MS in very late 1980's. But no definitive DX. Dismissed for over two decades. Now on Tecfidera after copaxone. I think a pro/con what is the worst that can happen sheet is in order of course. But also, I hope that you can decide how your MS is going (mild? etc) and discuss risk with your doc. I have a "mild" case. Took kids to middle and high school before major issues arrived. Even now - OK, relatively speaking...

What will you be giving up? How is your support system?
How well have DMDs helped you in past?

Whatever you decide - KUDOS! for your contribution to the world - whatever it is ( wonderfuls kids or drug trials or both ).

[mlissa67]

Torn

My email address is in my profile...I am also in contact with the group in Amarillo. It scares me also, but on the other hand if it works...lucky us

[JerryD]

I am sorry. I am a bit behind your arguments. Who is doing this stem cell study? Is it stem cell replacement including chemo ? I don't see this on the clinical trials site. Please explain with more details.

[mlissa67]

Amarillo Research

Here is the link to the trial.

http://clinicaltrials.gov/ct2/show/N...illo+TX&rank=3

Yes it involves high dose chemo with stem cell transplant.

[Katje]

Looks a lot like Dr. Burts study, but with less restrictions.

[jersey4ever]

I would go in a second...

If I could get into one of the trials I would go in a second! I have tried to call Northwestern - but have not heard back...I don't qualify for the Texas one because so far I have only failed 1 treatment and they require 2 - about to switch to a new treatment - don't know which yet - meeting with Neuro to discuss...

Actually planning to go Israel next spring for treatment unless something changes dramatically. Already talked to them and just putting together the funding ($94,000 for treatment + travel+staying in israel)

[JerryD]

Hey jersey,
I am very interested in your quest to get HSCT in Israel. Please keep us posted. If it is Prof. Slavin's clinic, I believe he worked alongside Dr. Burt at Northwestern. Good luck

[LilStep]

I have also been contacted about the HSCT study in Texas.

I am very uncertain if I should participate. I am scared, but at the same time scared to miss out on an opportunity.

Currently they are just gathering info from me, so I'll just take it one day at a time.

[Katje]

I have also been contacted about the HSCT study in Texas.

I am very uncertain if I should participate. I am scared, but at the same time scared to miss out on an opportunity.

Currently they are just gathering info from me, so I'll just take it one day at a time.

I feel the exact same way about Chicago. I have found many people are taking the chemo lighhtly, but then again I do not know their level of disability so to them maybe the Chemo is not a big deal. But it is for someone like me with 2 young children and 1.0 EDSS after 20 years. However I am sril considered RRMS and afraid to miss out if I pass this up.

[LilStep]

Kateje, yes the chemo scares the blankity blank out of me too.

I don't have much physical disability but more cognitive. I'm afraid of what the future holds for me if I continue to progress further.

I have tried 3 other therapies and am currently on Tecfidera. It seems to be working, but for how long. I will be 50 next year so I really don't have years to wait for a cure.

I kinda figure if I'm still young enough and healthy enough to go through the intense chemo, maybe I should try the study while I still can.

Then on the other hand, the what its pop in my head about the risk involved with the high dose
chemo.


So confused.

[Katje]

I got into a heated debate last night with George Goss. He kept referring to HSCT as a cure for MS. As I told him , I agree it has helped some people but not everyone and too soon to know how long it will last. He is only a couple years out and touts this as a cure to people inquiring about the procedure.

Good luck with whatever you decide lilstep. I am having the same dilemma as you... what to do what to do.

[JerryD]

Katje,
I think the decision is entirely up to you. If you talked to George Goss, you have heard the words 'straight from the horses mouth', so to speak. If you have spoken to Dr. Burt, and he thinks you are a good candidate, you can't be in better hands. I wish you the best of luck, whatever your decision.

[Katje]

Katje,
I think the decision is entirely up to you. If you talked to George Goss, you have heard the words 'straight from the horses mouth', so to speak. If you have spoken to Dr. Burt, and he thinks you are a good candidate, you can't be in better hands. I wish you the best of luck, whatever your decision.

Dr. Burt said I was an unusual case because I had MS for over 25 years and no disability. I had a bad relapse and now I am fine as if nothing happened. I am not sure I am ready to blast myself with high doses of chemo, risk infection and who knows what else! Part of me thinks I should do it now, another part of me thinks I should wait for another attack.

[Katje]

Katje,
I think the decision is entirely up to you. If you talked to George Goss, you have heard the words 'straight from the horses mouth', so to speak. If you have spoken to Dr. Burt, and he thinks you are a good candidate, you can't be in better hands. I wish you the best of luck, whatever your decision.

I believe in the treatment and the words from Dr. Burt, I do not believe in the words from George Goss.