I recently got an email from Northwestern Hospital in Chicago. A few months back I applied for the stem cell immunotherapy trial they are doing there under Dr. Burt.

At that time they said they did not want me for the trial because of being sero-negative... though they emailed me back wondering if I was still interested in doing the trial- which i truly am.

I just dont want them to thing i am super weak and that my MG is taking over my life right now (as it was before). Only because I feel like thats the olnly reason I should be getting this intense treatment done...or should I still do it even though I feel alrite MG wise?

The only reason I feel good MG wise is from IVIG monthly, imuran, and prednisone...and still with that i get weak at times. So i just want to verify with you all that It wouldnt be a selfish thing to do, to consider this trial...
I would love to be without medicines, and feel great. College would be an actual college experience....cool..


Id have to quit work...but i think it owuld be worth it.

Please give your input, i plan on sending my medical records very soon.

Tough, tough, tough decision. Yes, you're doing all right now, but only because of the IVIG and imuran and pred. Based on your progress, have they given you any indication of when you might be able to cut back on these drugs/treatments?

You know stem cell therapy is a big deal. You've been through alot and I'll bet this could not make you feel much worse than you have at other times before...but it is risky and it is without guarantees.

I honestly don't know what I might decide if I were you...it is such a difficult decision. I guess I would ask lots of questions, seek objective input from some of the doctors I'd met and liked along the way, and try to be honest with myself about the pros and the cons of the choice (as well as the one reject).

Whatever you decide to do, I hope that - with time - it gets you into the remission you deserve.

Tyson, This is completely your choice. I'm just going to think out loud here.

There are people with cancer who go into remission after bone marrow transplants but they always have to be followed in case the cancer reappears. It would be the same for MG. Yeah, it would be great if the stem cell treatment could "cure" MG but it doesn't. Remission would be awesome - who doesn't want that. And you may have a good chance of it. But you still could not "push" yourself if you went into remission. You would never be normal. Is that too harsh of a reality?

You really need to write down all of the pros and cons down. Are you such a big infection risk that this procedure would put you up for a sepsis risk? Maybe you should consult with an infectious disease doctor about this too or a hematologist because they deal with these risks all the time.

I'm probably not saying anything you haven't already thought of. But, please, don't be a guinea pig if the risks are too high. I know this disease stinks but there are some very real and serious risks involved here.

Good luck with making this decision.

Annie

I'd do it in a heartbeat--IF you qualify. They will not take you if you are not severe enough, which sounds like you may not be right now.

I wish I had done it instead of the reboot, but I only learned about it when I returned from the reboot. I would probably have qualified and would very possibly be living drug free instead of continuing to need some meds. With the SCT, you could live completely drug free!

The chance of reactivation is very low, definitely less than with a reboot. You will not need constant monitoring after the study is completed, and although you will have a slightly increased chance of cancer later in life due to the chemo, it's less than the chance you run with taking the immuno drugs for years and years.

Dr Burt is VERY selective on who he takes. I would trust him with my life, which is basically what you'd be doing. I've been emailing with some gals with MS who have done the SCT study, and they are doing SOOOOOOO well!

Good luck with your decision.

Thanks for all your guys' responses.

First off- Sue, yes it is a tough one:0 Thats how im thinking of it...only because of the medicines im on, am i doing ok..and its not like I am symptom free, its hard to type right now, but its because i have worked all day. I know this is a big deal, but if I have decided to atleast apply for the trial with all my medical records, and see if they even accept me.


Annie- I know, it is very extreme but at this point I know i will be on IVIG for the rest of my life or until remission. Im okay with that, but if I have the ability to change it with this trial, i am going to. Im not doing it to just be a guinea pig but hey im otherwise healthy and they could use someone like me for the trial i believe.

4eyes- I think thats what is going to happen. I am not severe enough, but that is due to IVIG- if i went off that, or pred, or imuran, i would be in a very bad state. He already amended the protocol for me, and asked the FDA to approve a change in the trial..i think he wants me to come.

Thank you very much for your support!

Problem is, you have to be severe enough even ON the meds. I was on pred, Cellcept and IVIG every 3 weeks and still a category 3B, which is pretty darn sick.

Please don't consider dropping the meds to "get bad enough" for the trial. You should just submit your records, and if/when you go for initial appt, they will ask you questions and base their decision on that.

I fully agree that if you can get off the meds, it is the best plan. I worry that insurance will deny the IVIG for me eventually, as it's already happening with some people. Insurance also has limits, and with you not even being 20 and looking at lifetime expenses...well, the decision is pretty much a no-brainer! Temporary hell for a life of relief!

I'm so jealous! Keep us posted.

One should always keep in mind that medicine changes and improves daily.

If you don't have this done now, the procedure may be improved in a short time, when you need it more.

But it is your choice now anyway, to apply. You may not get accepted yet, either. If something awful results from this study, that is not expected, and you don't do it... you would be spared.
There are always big risks with highly experimental procedures.

For example, stem cells for PD looked good at first and now seem much less so.

4eyes- I know. I was on cellcept, plasmapheresis, and prednisone for some time after my surgery and at that time I was class IVb and V. Though now I am IIIb IIb, with IVIG pred and imuran.

I really hope this goes through..my insurance must hate me Oh well, thats what they are there for.

How is the reboot working now?

Mrs. D- I have been on this medication for 10 1/2 months and Im not sure i am convinced it will work 100% without the IVIG backing it up. I do know what you mean about future medications and future possible SCT. There are big risks, but also possibilites of a great outcome..


I will apply, and take it fro there sending my medical records tomorrow.

There is one other angle you may want to investigate before making your final decision (if you are accepted for the study).

Make sure you completely understand what impact your treatment in a trial program would have on your existing medical insurance coverage. Even though you are on your parent's (Dad's?) group plan now - would treatment in an experimental program allow them to cut off your coverage ..for MG related ....or altogether?

Just one other think to take into account before making your final decision.

Yes....I agree sue. That is the second step of the consultation- and i will be contacting the person who deals with my insurance to see before I waste my time/money getting there.
I would think they would want to do so, as i cost them 60,000 a month with IVIG anyway....


Though I got another email from them today, saying from what they have seen I automatically qualify, due to my non-responsiveness of immunosuppresants/plasmapheresis, etc. I am working hard to get them all the notes they need along with lab work.


Keep your fingers crossed for me!