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.

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/

Hello all-thanks for the responses. Ill go 1 at a time.

Abby- Yes. This is an experimental trial. Only three people with MG have done this, all with good outcomes as of now.

Prograf only took 2 months to show an improvement (however, I am on the highest dose) and its side effect are not terrible. The only one I have constantly are tremors throughout my body, especially in the hands. Dont get me wrong, im still pretty weak at times, but it definitly is worth looking into if your immunosupressants are not working. (Also keep in mind i take prednisone, imuran, and do monthly ivig treatments.)

Mike- i agree with you there.

4-eyes- Thanks for reassuring me. The criteria to get into the trial is quite extensive, so I know that I am qualified, however, there is a difference between that and deserving it.

But, if my insurance pulls through, and everything goes well with the screening process, I will be going through with it.

Alice- I see your point, and I see it coming more from a MD's standpoint, which I cannot blame you for

This procedure has been done in three patients (I know this is small) but all three have had a major impact on their quality of life. Hopkins (where my neurologist is) is showing great promise in curing autoimmune disorders with reseting the immune system- I have asked her, however, she thinks I am too young to do it, and the procedure is different.

So there is promise out there, and if I can contribute to it, I want to.

I agree in a life threatening terminal illness this is more feasible and acceptable, but if there is a slight chance I can have that 'normal' life that I used to have...or even to a better degree, I want take it.

Im having to take breaks writing on the keyboard...so maybe that gives you an idea of how my disease fluctuates. (I know all of ours do, but mine never stays constant, I guess because im a teen and in college.)

It is an extremely tough decision, and I thank you greatly for your input. It means alot, and everything you say makes sense. But I have been waiting for something like this to pop up, and if everything falls in place I will be doing it.


Mrs. D. - I see where your coming from. I understand the risks of chemo, my moms had it various times throughout her life and Ive seen what it does to her. Im not afraid of its side effects, yet.

Honestly, the drugs im on right now that dont even mask my symptoms 70%, all have life threatening side effects, alike those of chemo..so that risk doesnt scare me either. I have come to accept that someday, sadly, I will get cancer..its a fact of life and what i have gone through with medications. I know it will happen, and Im prepared for it as well as I can. I know that sounds very cynical, but it is the reality.



Thank you all for your comments

Hey Tyson,

Sounds like you've thought it through pretty seriously. Go with your gut. You say you're prepared for the negative effects that're going to go with this reboot. If you truly are I'd say go for it.

If you're only asking because you're not sure you're worthy, you certainly are.

Brian

Tyson,

For what it's worth....it sounds like you have evaluated the pros and cons of this decision quite fully. No one has the answers. And after all the research and questions, ultimately you have to make an 'informed decision' - - which in this case may mean to 'go with your gut feeling'.

RE: worthy...what is worthiness in this case? You are certainly ill enough to quality. You are determined enough to qualify. And since there are only 3 other patients ever...I think it is bravery more than worthiness that is the criteria.

And you, Tyson, seems like a very brave young man to me!!

Good Luck with your reboot.

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.