Jennie's MS Journey

A few people have asked what HCST is and what it entails. OK, don’t hold me to this because I am not a medical professional but I can give the overview that I was given the best I can. I attached the more scientific info below.

I will go to Chicago in Feb and I will be admitted to Northwestern and will receive chemo. After 1-2 days I will go and stay in a hotel for about 2 weeks. There I will be avoiding germs and any sick people and will give myself shots in my stomach (like a growth hormone). This may cause some bone pain but it can be moderately controlled with medication which is provided. These are intended to multiply stem cells. This is referred to as the harvesting phase. I will be outpatient going back and forth for bloodwork etc. for this part as far as I understand. Then when I have the number of million of stem cells required, they will extract those from my blood typically through the neck (yes i know, gross).

After the mobilization phase there is about a one week break. I may go home if I feel ok or to avoid the germs on the plane my family may come to me during that time.

The second part of this is a little more tricky. I will be admitted to the hospital for the rest of my time in Chicago. I will receive 4-5 days of higher doses of chemo. This is done to ablate the immune system, essentially offering my body a re-boot. Once my system is at a certain point, I believe this is called day 0. Now my own stem cells will be re-implanted back in my body to help me rejuvenate a healthy new immune system that no longer recognizes MS in a sense. This part is about 17 days give or take depending on safe blood levels. They call this your new birthday which I think is funny. They even have the stem cells blessed before going back in. I better get a gluten free cake that doesn’t taste terrible for my new “bday” after all this:)

The most important thing is to not get an infection while your system cannot fight it and this is the risk. Many people have had similar treatments for certain types of cancer and the fatality rate a pretty low for non-myleblative protocols. Lets just say I will be washing my hands and staying in isolation. You also will likely need blood transfusions as platelets take a nose dive. Also some risk to that.

At the end of the day, I will be bald and probably pretty sick for a few months recovering but I likely will no longer take medication for many years and maybe never. It doesn’t work for every single person but the stats are good and i’m more than hopeful to be in the “had ms” category or at least no further progression. It would also be cool if my vision, numbness and fatigue improved buy hey I won’t be greedy. If i stay just as I am today I’ll be totally satisfied!

HSCT = Hematopoietic Stem Cell Transplant 

Hematopoietic Stem Cell Transplantation (HSCT)  – All HSCT protocols for the treatment of autoimmune disorders, and MS specifically, ablate self-intolerant autoreactive lymphocytes in the body that are responsible for the underlying nerve damage / destruction. HSCT protocols run a spectrum from complete in-vivo lympocyte ablation (the myeloablative protocols) to partial in-vivo lymphoablation (non-myeloablative protocols also sometime referred to as “Reduced Intensity Conditioning” (RIC) regimens).

Autologous = Using your own stem cells, not a donor’s or embryonic stem cells.

Allogenic = Uses a donor’s stem cells (preferably a relative). Only for RA & Crohn’s.

Non-Myeloablative is the protocol Dr. Burt uses. (In plain English, non-myeloablative means they do not totally wipe out your entire immune system…almost but not completely).

•  Non-Myeloablative (or RIC) HSCT

DR. RICHARD BURT USES THIS PROTOCOL – The non-myeloablative protocols vary in administration schedule (based upon doctor discretion) and strongly links the mobilization and conditioning phases (they are time-dependent to each other whereas for the myeloablative protocol they are not max-time-linked).  Most non-myeloablative protocols utilize a chemical subset of Cyclophosphamide, Carmustine, Fludarabine, Alemtuzemaub and Anti-Thymocyte Globulin (ATG)). Because the non-myeloablative HSCT protocols are preferentially lymphoablative (and incompletely myeloablative), the in-vivo plasma auto-reactive lymphocyte population is not entirely eliminated but instead “diminished” to a threshold level below which autoimmune-mediated damage occurs. The bone marrow is not completely ablated which creates a greater treatment safety margin and allows the patient to more promptly recover from the chemotherapy following conditioning. Although a “gentler” chemotherapy and lower Treatment Related Mortality (TRM) as compared to the myeloablative HSCT protocol, there is unfortunately a small percentage of non-myeloablative-treated-patients (20%) that results in an insufficient diminishment of autoreactive lymphocytes that necessitates post-transplantation cyclophosphamide infusion re-treatments to bring a treated MS patient into remission.