High Dose Cytoxan (Reboot): Two Year Report
 

Hi,

I know some are following my story, and I promised to give updates. Here's the latest:

Two years ago today I entered the bone marrow transplant unit for 4 rounds of high dose cytoxan, aka immune system reboot or revimmune. Five days later I went home as sick as I've ever felt, with an immune system that was dying....as planned. A week later I began growing a new immune system from the embryonic stem cells that were spared, deep in my bone marrow. The hopes were that these new cells would grow up not remembering that I have MG.

Today, things seem to have gone as planned, more or less. While my immune system didn't forget I have MG completely, it has agreed to cooperate with the meds I take, which it had never done in the past. I live life basically free of the severe symptoms that were slowly killing me (malnutrition and aspiration were real threats 24/7 and double vision was disorienting and life-limiting). I've had a few blips where I've needed to up my pred, but never more than 10 mg a day. I still take Cellcept and IVIG, but it actually WORKS.

Will this be the way I'll always be? One can hope, but the truth is, no one knows. My big goal is to see my daughter through the rest of her high school at my current level of function. She is a sophomore. Anything more than that is "gravy" and if the worst happens and things go really bad again, I would ask for the treatment again (but there are no guarantees that I would qualify for it again.)

My neuro says I remain the only person from her office who has done this treatment. Yes, it's radical, but so was the MG and so is the desire to finish raising my daughter and be the best I can be. I give thanks every single day that it was available to me and that I have had these last 2 years to really LIVE once again.

Thanks for reading. Feel free to ask any questions.

Congratulations to you. That is encouraging for me!

How did you get to receive that treatment?

Do you know how many others MG patients, anywhere, have received this?

What was timeframe from the time you went home sick until you started to feel better than you had been feeling prior to treatment.

How often do you get IVIG?

Thanks for your time and for sharing your experience.

Stephanie

Thanks for checking in with a report on your progress :)

I'm very happy for you that the treatment seems to be working reasonably well for you. Hug your daughter and I hope that you can maintain a "good" quality of life - don't forget University graduation for your daughter comes next and then maybe grandchildren (that escalated quickly didn't it? ;) )

4-eyes;
I just returned from seeing another neuro for a second opinion about Cytoxan, maybe even in pill form.

I think I knew what his opinion was going to be before I saw him. He thought at my age and the improvement I have had since the onset MG that taking Cytoxan was out of the question.

He gave me the impression that he may recommend to my neuro tweaking my currant treatment.

I want to thank you and Juanita for all the information about your situations and experience with Cytoxan and hope both of you continue to post. That could be very beneficial to members for years to come especially if there are any more success stories about Cytoxan.

On the positive side, the trip gave me a chance to visit my daughter and son in law and see their new house.

scrubbs

4-eyes, I'm glad you are doing better.

Your successful treatment makes me wonder if we couldn't all be totally cured with bone marrow transplants.

There is a study on that going on in Chicago right now. However, I heard "thru the grapevine" that one of the MG study subjects totally relapsed and was told to "go on like the transplant never happened." Pretty disheartening.

I've emailed with a woman with MS who had the transplant in Chicago about the same time I had the reboot. She had an immediate cessation of progression and some mild improvements in function, yet most of the damage previously done by the MS remained. She is VERY happy to have done it, as she has two little boys who need her.

The human body is so mysterious and as progressive as science is, it still doesn't hold a candle to Mother Nature!