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, also known as the HSCT. Obviously, this is a less traveled rout for autoimmune patients, although it is becoming a more popular 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.
Th 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 around 10-14 grams of a cytotoxic (cell-killing) agent called Cytoxan over a four 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: Both BMT and SCT are used in autoimmune patients - the only difference is the harvesting process. BMT are harvested directly through bone marrow aspiration and SCT are harvested peripherally.

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 (whether it be BM or SC.) 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 youcaring.com/chanelwhite

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 t 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 https://clinicaltrials.gov/ 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. 

Thursday, August 11, 2016

A Towering City Of Disappointment - Health Update

This week I made my promising trek to Los Angeles to visit a prestigious HSCT (Hematopoietic Stem Cell Transplant) doctor at City Of Hope.  A few weeks ago I had contacted this physician by email and he became extremely interested in my case. He asked if I could fly down and meet him in person for in depth consultation. I received a call from a new patient coordinator the next day, received my appointment date, and booked my flight immedietly! Fast forward to Wednesday. I traveled to COH alone because it was a very last minute ordeal. Everything moved so quickly that it didn't give my family adequate time to save for the trip, request work off, or find pet sitters. So, I waltzed into the giant campus by myself, ready to hear some good news from this physician I was so very ecstatic to meet. The paper work said to arrive at 930am for an 11am appointment, so I figured there would be some sort of blood work, testing, or pre-consultation. I arrived promptly and was given a very kind patient advocate, but told there was nothing happening with my care until I saw the physician at 11am.

Wait what?! They expected my already anxiety ridden self to arrive two hours prior to an appointment and just wait?! Why they do that to patients is beyond me...

So I waited, and waited, and waited. By 10:30am I was extremely nervous and antsy, and by 11am I was almost in tears. By 11:20am and still no appointment I was having a full blown anxiety attack and trying not to hyperventilate. I know that all seemed to escalate quickly, but when your life is riding on an appointment and you have had nothing but blank time by yourself to think about it, the mind goes to bad places. I finally went up to a desk and asked what was going on and they just said, "they will call you back shortly." By 11:30am I was called back to a room with a physician who obviously wasn't the one I had emailed. RED FLAG #ONE. This physician told me he was on the same HSCT team and that the other physician I flew all the way to California to see, said this doc could see me instead. Not cool. Since I wasn't about to get up and leave I started asking questions. I wanted to know about their former Scleroderma patients and how they fared during the HSCT. He expressed they had only done three and every single one had ended up in the ICU for upwards of 2-3 months, half dead, drowning of blood in their lungs. RED FLAG #TWO He told me that they were able to pull every patient back from the brink of death however, and that they were doing okay now -- Those aren't good odds if you ask me. 

With in the first few minutes he told me I was a great candidate and fit all the criteria! He actually also expressed that my body wouldn't make it another year waiting for a transplant, and that we needed to move forward as soon as possible. It was an overwhelming YES! However, he then asked when my last appointment was with Doctor X (name withheld) at UCLA -- "Um never." I replied "Why?" He then went on to explain that I cannot have a transplant at COH without being a patient of Doctor X first; that I would have to become her patient if we wanted to move forward. RED FLAG #THREE

....You mean to tell me I was supposed to get an appointment with another physician at a totally separate hospital before coming to see the doctor who I didn't even get to see at COH?! And no one told me that?! 

So even though I was a yes from their transplant team, I couldn't do jack because no one on the team bothered to tell me I needed to first get an appointment with a physician at a totally different hospital. Why the hell did I fly to California then?! The doctor who I was "consulting" with basically just apologized for "wasting my time." and that if I wanted to fly down again in a few weeks to see that other doctor at UCLA I could come back and re-consult the same day at COH. Probably the most unorganized visit I have ever experienced in my life. The entire orchestration was not up to my standards for a hospital that will literally be holding my existence in their hands.

So lets look at these red flags a bit close:
1. I never even got to see the physician I specifically booked a flight to meet.
2. Everyone of their scleroderma patients have been in the ICU on the brink of death.
3. They weren't even organized enough to realize I wasn't a patient of the physician I had to see before I came to them -- even though they had all my medical records. Did they even read them?

For these obvious reasons I am ruling out City Of Hope for my HSCT. Don't get me worng, the physician I saw was lovely and kind; he genuinyl wanted to help but, I need a hospital that doesn't have their head up their bum if I am being frank. I am of course disappointed I wont be able to have the transplant closer to home, but I am also very grateful I had this experience to rule out the poor choice. I will not wonder "what if?" I know that this door is shut so another can open. Thankfully I have been accepted at Northwestern Memorial Hospital in Chicago for a consultation. I should receive a call next week to schedule my tests/appointment. Luckily, it's pretty comon knoledge that that if you are a candidate by STAT trial standards you will most certainly meet criteraia for the ASSIST trial! I of course have to get the absolute yes from the physician, but I don't see how I wouldn't be accepted. Woohoo! I am finally moving forward and am ready to bump up my fundraising goal to assist with transplant costs! Your assistance will help fund travel expenses to and from Chicago, housing for the duration of the transplant process, and medical expenses not covered by insurance. As I am not 100% sure of the complete cost currently, the goal may change in the future. 
Please visit the link to help save my life! YouCaring.com/ChanelWhite