Limited options

There are two styles of HSCT. Mylo-ablative, and non mylo-ablative. The difference comes in how extreme the chemotherapy is.

The mylo-ablative style is more extreme. It kills the bone marrow in addition to the immune system. It basically is the same system that is used to treat leukemia. Which is how it was discovered. There was a patient that had both leukemia, and MS. After she went in for the treatment for her leukemia, they found that her MS seemed to go into remission. Even before they had discovered stem cells, leukemia was treated this way. The stem cells simply gives your body a step up on the recovery process. Most HSCT in the US, and around the world, is this older style.

Then there is non mylo-ablative. It DOESN’T kill the bone marrow, and the recovery is easier. But, critically, the effectiveness of this style is the same. There was one clinic in the US that performed this style: Dr Burt’s clinic at Northwestern. Most notably, they recently performed the procedure for Selma Blair.

I, however, was turned down from Chicago. Which is unfortunate, but truth be told, they were charging twice as much as other countries for the same procedure. They also garnered some undesired attention because they were performing a study, and charging people to be treated at the same time. Then most recently, the program got suddenly shut down.

So if you don’t want the harsher version of the treatment, you must look outside the United States for treatment options.

They are performing this procedure in many different countries. But to get the non mylo-ablative procedure, and being an international patient, and having a disability score as high as mine is, your options are limited. Largely, I had to choose between Puebla, Mexico, and Moscow, Russia,.

Why HSCT?

Hematopoietic Stem Cell Transplant is a method by which a person’s immune system is ablated (destroyed, vaporized) and then rebuilt using their own blood (hematopoietic) stem cells.

It’s not a magic bullet. Only about 90-95% of RRMS (Relapsing-Remitting Multiple Sclerosis) patients, and 70-75% of SPMS (Secondary Progressive Multiple Sclerosis) patients respond to treatment. And the mortality rate, which is often overstated, is only about 0.3%.

So the statistics are certainly in my favor.

I have been through my share of DMDs (Disease Modifying Drugs). And while I’d say that some were better than others, it seems clear that I have been progressing in my disability.

My latest MRI report stated “no new or active lesions”, which the doctors say is good. I just know that I am still deteriorating. There are some theories that say our MRIs are not telling the whole story. Others say the MRIs we have are not high enough resolution to tell the whole story. I have been here before. Where the progression of my disease is outstripping medical theory.

Mainly, where I am now, is that I really don’t have much hope for recovery even with the treatment. But I know I need to do everything I can to keep from slipping more. Even if it’s not for my sake. my job right now is taking care of my 5-year-old daughter (6 in October). A job I adore. If my disability slips any further, I risk not being able to take care of myself, and much less her.

THAT’S why this NEEDS to happen

Hello

I have created this space to talk about my journey to and through the HSCT procedure, which I’m hoping will have the ability to stop my MS in its tracks.