Hi guys..
sorry have been absent for a while, been trying to keep up in school.


I am actually doing pretty well, considering. Still on the plethera of meds, cant exersize, but hey im alive and breathing.

Im coming to ask for a little advice, which I know some of you have already helped with.

I was emailed friday by the SCT coordinator @ Northwestern saying that they have been approved by the FDA, and she is sending the authorization to my insurance on Monday. It sounds like they really want me to do this, and I want do to this as well, however, im not sure i "deserve" it. Right now I am able to walk, talk, breathe, swallow... and I feel as though they should use the limited amount of procedures they do on someone else who needs it more badly than I.

I realize that I went off my medications and the monthly IVIG, i would more than likely be in that position. But, right now Im not, and i hope some of you can understand the questioning that is going through my head..


OBVIOUSLY i want this more than anything in the world, and I hope endlessly that it works out to do so. I deserve, i know, but I feel like there is always someone more deserving.

Anyway- I guess Im just venting and looking for reassurance on the topic of disparity.

I hope this finds you all well, and If people are looking for treatments, I highly recommend prograf.

Wait, isn't this an experimental treatment? In other words, your experience will be used directly to increase medical knowledge about how to treat, maybe cure, myasthenia gravis? If so, you're doing all of us a big favor.

Tell us more about the prograf.

Abby

I agree with Abby. You will be helping us all. Go for it.
Mike

That study is taking unlimited participants, as long as they qualify. There isn't exactly a glut of people signing up for the agony (and the subsequent ecstacy!) If you feel this is the best path for you, then go for it. We are all behind you!

When I did the reboot, I had to go off all meds as well. I was almost in a crisis after only after a few days, so was glad to be in a hospital!

You qualified. Dr Burt would not have approved you if you didn't.

Brennon- Thank you for the response. I have thought it through pretty thoroughly and i think i am prepared for the side effecst of chemo and the reboot itself.


Sue- I realize no one has the answers and it is solely up to me to decide, ive done my research and come to my final conclusion. If all pulls through with insurance, i will surely be doing it.

Hope your feeling well.

Hello,Tyson!
I am glad that your condition now is so much better,than it was,that you can even consider yourself "not deserving" this treatment. But,looking back,you certainly are.
I wish you the very best of luck,if you do that.You are not only deserve the treatment,you deserve a VERY best outcome.Hope,it will be that way.

One question: your monthly IVIG - is it 5 infusions each month,or it varies?
Do you feel better after each course ,or it's different every time?
Again,best of luck.
Marina.

I personally think that every patient deserves to receive the best possible care.

What this care is depends many times on his/her preferences, as many situations in medicine are not "black and white" and do not have one right answer.

Tyson, I don't know about anyone else here on this forum, but I'm just "old" enough that whenever I hear about someone as young as you who has this disease I am hopeful that doctors will find something that will allow them to live a full and rich life, free of the shackles of this illness.

If anyone is "deserving", it is someone like you - someone who has their whole life ahead of them.

I'm "only" 51 (and Lord knows, I certainly don't think of myself as "old" ), but I've had the opportunity to do all of the things that you haven't. I'm willing to bet that a lot of other folks on this forum feel the same way.

What you are talking about is risky, and there are no guarantees that it will make you better. But it sounds like there is HOPE for a better life, and when a person is younger, the benefits can many times outweigh the risks.

Ultimately, it is going to be your decision, and I know that everyone on here will support whatever decision you make. You're going to have to take a leap of faith, one way or another - that's always a scary proposition.

You are a fine young man; don't sell yourself short. It's not as if someone else is NOT going to get this treatment if you take it, right? So you're not denying someone else the same opportunity.

What you are experiencing, though, is actually quite common in people who receive a life-saving organ transplant (someone else has to die for them to live). Your situation obviously isn't quite as drastic, but I would imagine you are feeling some of the same things that those patients do. You may find it helpful to read about their experiences.

Regardless, we are all here to support you, no matter what your decision may be.

This is my personal opinion, which you don't have to agree with, but as you seem to have concerns about going forward with this, I will tell you what I think.

Take into account that stem cell transplant involves high dose chemotherapy with all its short, intermediate and long-term risks.
Also, to the best of my knowledge, up till now SCT has not been shown as a cure for any autoimmune disease (although some do achieve fairly long remissions), which means that you will quite likely still require other treatments after it.
In fact "transplant" is a bit of a misnomer, because you are getting back your own hematopoietic cells with the hope that the drastic change in your immune system (due to the high doses of chemotherapy and possibly other immune modulating agents that would not be tolerated without this rescue) will lead to cure or at least a very long remission.
In my opinion it is justified in a life-threatening or severely disabling illness for which there is no alternative treatment.
The way you describe your condition now,doesn't sound to me like this is the situation.

I am not familiar with the specific protocol they are using in this trial, so possibly they have ways to increase the benefits and decrease the risks, as compared to the standard SCT protocols, but I think that this is something you have to check.

I know this is a tough decision and it is very tempting to think that there is some "magic cure" that will enable you to be just like you were before.

I wish you the best with what you decide,

alice

Since I have worked with drugs all my adult life, I tend to think about the drugs used to suppress your bone marrow.

These chemo agents damage DNA in the whole body. And it is now known, they affect the brain (chem brain) and over time the incidence of cancer is greatly increased. Some people who survive one cancer have been known to develop another because of the chemotherapy.

So while you are young, Tyson and look like a strong physical candidate, I'd research now, the incidence of cancer from the strong drugs you will be given. In older patients, with a shorter life expectancy left, this is less of an issue. But in a patient very young, I think it is something to think about.

So here is a medical blog that explains this well:
http://thechart.blogs.cnn.com/2010/1...nd-malignancy/