Quite honestly, I am an intelligent woman but without the educational background and expertise to cogently decipher these kinds of studies, and while I believe we should be actively involved in our own treatment I think it is unwise to try to take the place of our physicians.

I don’t read of stem cell therapies applicability to our MPN’s, tho some success with other, specific types of cancers.

You don’t need to reinvent the wheel here, IkeaLover, as proven, reliable courses of treatment for our MPN’s already exist.

Many here have lived reasonably well for decades, managing our MPN’s with physicians we trust, and I am currently at 23+ years.

However, at onset/diagnosis in 2001 I had blood clots in both lungs, and 6-7 years ago when I was still on blood thinners I had a small brain stem hemorrhage. Both of those could have killed me.

I am JAK2 positive and have a genetic predisposition to clotting, but we are all different, is the important thing.

I have now transformed from ET to PV and entered the land of life saving therapeutic phlebotomies.

Our MPN’s can often be managed well for long periods of time, but they can also kill us if untreated.

If you want to go off the beaten path with an alternative approach, I sincerely wish you all the best but am some concerned for your safety and well being.

It sounded awhile ago like you had found a physician you were more comfortable with, and I encourage you to talk with him about the stem cell therapy you are interested in vs his recommended course of treatment. If it were me, I would go in there with written questions, and write down the answers.

Make an informed decision about your treatment, with a doctor you feel comfortable with, and then follow it, is my suggestion, but I think it is a mistake to try to be your own physician.

My two cents, and I sincerely wish you all the best.

Please keep us posted here as to what you learn and how it works for you.

Stem cell transplant or bone marrow transplant are the only cure BUT few are willing to perform unless you meet certain criteria AND you could die. Where MPN albeit with symptoms can live a very long time, without it

I have heard of stem cell based therapy. I had an uncle who received stem cell based therapy, instead of going the regular oncology route. He paid out of pocket. Unfortunately, he passed away from a neuroendocrine cancer. I found an article that a little complicated but does include possible uses for stem cell therapy. And we must not confuse stem cell therapy with stem cell transplant. I am sorry you are struggling with your symptoms and understand that the Epstein Barr virus can cause long term problems for some. I was tested a couple years ago, for Epstein Barr, as part of a clinical trial. I am negative for it.
All my best to you.

IKEA, I was on a trial that was following patients for immunity to covid. It was not part of MPN treatment/care.The trial was stopped recently, because sars covi 2 had mutated to a mild virus. Interesting that I had covid before vaccination was available, probably the Alpha variant. I never got 'the shot'. I had my blood tested every six months while on this trial. I volunteered to be on it. First time was eleven months after having covid. I had immunity for three years.

@A myMPNteam Member Thank you.

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