Wednesday, August 17, 2016

Autoimmune Patients And The HSCT

I have received an influx lately of questions regarding my current treatment plan to receiving an Autologous Hematopoietic Stem Cell Transplant (HSCT), also known as a Bone Marrow Transplant. Obviously, this is a less traveled rout for autoimmune patients, although it is becoming a more recognized treatment within the community. I thought it would be helpful to my family, and readers, if I took a post to explain the reasoning behind this decision, and what the process will look like if I am accepted into the HSCT trial.
What is an HSCT?
First I will start off by explaining what the name means: autologous means the transplant will be preformed with my own cells, and a hematopoietic stem cell is a cell derived from the blood or bone marrow that creates blood and immune cells. The name literally means my own stem cells will be transplanted to myself. The entire point of a transplant is having the ability to give an incredibly dangerous amount of chemotherapy to a patient without causing death. The dose will obliterate all their bone marrow and immune/blood producing cells; the stem cell reintroduction is simply to save the patient from the brink of death. These new cells start regenerating blood/immune cells the body cannot on its own. It can be compared to wiping a hard drive. Everything is deleted, and then you must hit the reset button. The stem cells will reset the body by creating new immune cells that are hopefully disease free. This is a widely used practice in many cancers and blood disorders. The high dose of chemo successfully eradicated all the diseased cells -- leaving a clean slate. You can see how this process would highly benefit someone with autoimmune disease, as our primary malfunction is overproducing immune cells.

Who receives it?
Now that you know a the purpose behind the transplant, you're probably wondering why they are not a more widely used treatment? The truth is this treatment is extremely dangerous, and does carry a heavy mortality rate. The human body is not meant to withstand that overwhelming dose of poison, and a variety of patients are unable to survive the process.
The use of HSCTs in autoimmune patients is fairly recent, only coming into play withing the last fifteen years. This process is solely preformed on severe, therapy-refractory autoimmune patients with poor prognosis' that lack any form of alternative treatments -- It is more considered a rescue strategy than an actual treatment in the eyes of medical science. Studies have shown that Systemic Sclerosis patients seem to have the most difficult time with treatment due to the existing heart, kidney, and lung issues. Our already fragile organs give us less chance of success when compared to other autoimmune, or cancer patients who may not have internal organ damage. The process is currently being studied in severe Multiple Sclerosis, Lupus, Systemic Sclerosis, Myasthenia Gravis, ITP, CIDP, and a growing list of others. While patients may have much to gain form this treatment, it is only considered if all other options have been exhausted due to the evident possibility of serious side effects, including death. Currently the HSCT for autoimmune patients is a clinical trial, and is still considered "experimental" by the US. In order to receive treatment you must be accepted into detailed criteria placed by the researching physician. Very few centers around the country take part in these trials, and only accept a limited number of patients.

What is the process?
Once accepted into the trial by the completion of detailed evaluations, the patient will undergo "harvest." The patient will receive a weeks worth of medication that forces the stem cells to overproduce, as well as move out of the bone marrow into the blood stream. You can imagine what a very uncomfortable and painful process that would be; it has actually been compared to child birth. Once the stem cells have migrated to the blood stream a central access catheter is placed and the cells are harvested through an apharesis machine. The stem cells are then frozen and stored for the patient. Next comes the chemotherapy conditioning. Patients are given anywhere from 15 - 30 grams of a cytotoxic (cell-killing) agent called Cytoxan over a four  - five day period. (For reference I only had one gram a month when I received it earlier this year.) This powerful drug will obliterate any cell left in the blood or bone marrow. The stem cells are then reintroduced to the patient which will save them from their now desolated body. Slowly, the stem cells will graft and the patients blood and immune cells will start to reproduce; this process can take weeks, or months. The patient must take heavy precaution from any possible infection risk during this time; fresh flowers, fruit, vegetables, plants, and human contact could cause infection the patient would never recover from -- Isolation is a standard precaution. Once the patient leaves the hospital the recovery is far from over. The body will continue to adjust to its new immune system over a period of about two years, through the first hundred days poses the most risk for the patients recovery. There is a long lists of "do's and dont's" the patient must carefully follow once returned home.

Lingering Questions?
Q: What is the difference between this, and a Bone Marrow transplant?
A: They are the same procedure. In recent years the phase Stem Cell Transplant gained popularity since the hematopoietic stem cells are now more often harvested peripherally. Saving the term BMTs for hematopoietic cells harvested directly through bone marrow aspiration. However most treatment centers still chose to use the overarching Bone Marrow Transplant terminology for both extraction methods. So HSCT/BMT are interchangeable - unless you want to get specific with extraction methods.

Q: Is there a difference between using a donors cells vs your own cells?
A: Yes! Autologous is using ones own stem cells, and allogeneic is using a donors cells. The allogeneic transplant poses a much higher risk of mortality due to the possibility of Graft vs Host Disease. Both have actually been preformed in autoimmune patients, although there is almost no data published regarding the allogeneic transplants since it has only been preformed a handful of times. In theory donor cells would be a better option as they would not be previously diseased, however; medical journals that can be found regarding allogeneic transplants state, "clinical evidence in favor of allografting is sparse and the risks are considerable."

Q: Are you killing babies?! (I have actually been asked that..)
A: No. Stem cells are found many places besides umbilical cords.

Q: How long does all of this actually take?
A: If I am accepted into the trial I will live in Chicago roughly two months if everything goes smoothly. However the process could be longer, or shorter.

Q: Does insurance cover this treatment?
A: No. HSCTs for autoimmune diseases are considered experimental by the FDA and therefor are not covered by insurance. While often, the researching physician can persuade your insurance company to pay for the procedure, many patients are stuck with a 125,000 dollar bill if they want this treatment -- and that doesn't include travel expenses. To donate to my HSCT fund please visit

Q: Is it considered a cure?
A: No. The HSCT doesn't not cure autoimmune patients. While some patients may find themselves in a blissful remission of disease, they are not without the effects of their disease previous to the transplant. While this is a successful treatment for many, some do relapse after treatment as a consequence of their own stem cells being diseased beyond repair, or the donor cells not grafting properly.

Q: Why would you do it then?
A: As stated before, this is more of a rescue strategy for those with a poor prognosis than an actual treatment. In many cases the patients undergoing this torturous ordeal are left with the two options: 1. Die or 2. Playing their luck with a HSCT. Again, this treatment is for serve disease unresponsive to any treatments currently available. Given the choice, I want to go down fighting rather than just accept my death.

Q: Where can I get more information?
A: To check availability head to and simply search your illness, or hematopoietic stem cell transplantation. It may take some digging, but there are trials still recruiting patients. For medical journals on the HSCT and autoimmune patients simply Google "Autoimmune and HSCT."

Disclaimer: Please remember every patient is different. Some patients bodies may handle a transplant better than others. The disease the patient is fighting also makes a drastic difference in their HSCT experience. I am not an HSCT expert! All of my information is based of information received from my physicians, patient experience, and medical journals I have read. 


  1. Dear Chanel,
    I hope that your evaluation will go into the right direction and I hope that dr Burt can help you.
    I will pray for you.
    I'm sending you a lot of love from Croatia.

  2. Just have a look at this story, Chanel!
    The girl is still alive. 17 yrs after transplant. I'm not sure about how she's doing now, but I've found her FB page as well as her relatives who didn't announce anything sad.
    This woman had HSCT done in 1999. Ant now, it is 2016, and science is million miles forward. I'm praying for you, Chanel and I'm absolutely sure everything will be great. You're a true fighter, girl. Good luck!

  3. This is an interesting idea! U have three of the autoimmune diseases in your list that HSCT has been used for (and a few not on the list too). Something worth learning about. I'm so glad you were accepted, as you hoped. Sounds like you have your work cut out for you!I'll be thinking about you.

  4. **I** have three of the diseases... Oops!