Greetings to my friends and interested visitors,
Preparing for the trip & treatment has taken a considerable amount of my time. Probably more than it should have because I've had no one to walk me through what exactly I should expect. I found it extremely useful to read information from cancer treatment resources (since the treatment protocol is almost the same), but have also had to consider how my own MS-infected body will respond to the therapy as well as consider the logistics of seeking treatment in an overseas adventure. I will comment in my next post regarding what I've done to prepare for the trip & treatment. For now, most of the following info will be of biggest benefit to those with MS that might seek this treatment.
It is important to understand that the general schedule and details of the treatment regimen that I outline here are just estimates based upon my general understanding of the process. I won't find out for certain what my exact schedule will be until I check-in at the hospital with my physician (Dr. Raab). However, the BEAM protocol I will be receiving is roughly divided into two parts, as follows:
1) Mobilization & collection - this phase is usually done in an outpatient setting, usually taking 5-8 days. In earlier days of collecting the hematopoietic stem cells, a surgical procedure using general anesthesia was performed in which bone marrow is aspirated from the pelvic bone. This procedure is not now commonly used (but sometimes still is), but has been predominantly replaced by a non-surgical procedure. First a chemical growth factor (called Granulocyte Colony Stimulating Factor, G-CSF) with Amgen brand name Neupogen is administered. G-CSF causes the stem cells in the bone marrow to replicate, over-populate and then diffuse into the peripheral blood stream. After some days of this treatment (usually five days of Neupogen injections) there is an overabundance of stem cells in the peripheral bloodstream that are ready to be harvested. A venous catheter is then inserted (sometimes in the jugular vein) that allows the extraction and return of blood, similar to a dialysis process. The blood is put through a process of apheresis using a centrifuge and filter membrane to extract the stem cells and return the other blood constituents to the body. The stem cells are then promptly cryopreserved at liquid nitrogen temperatures to be thawed later during re-infusion.
2. Ablation (conditioning regimen), Infusion & engraftment - A short time following stem cell collection, I will be admitted to the hospital to begin receiving the four chemicals (BEAM) of high dose chemotherapy. It's interesting to note that a couple of the BEAM drugs are derived from the same chemical agents originally developed in World War 1 as mustard gas weapons. So needless to say, these are very nasty and very strong drugs. The BEAM chemicals will be delivered over a period of 4-6 days, with the end result of a completely ablated (killed) immune system, bone marrow and associated hematopoietic stem cells. At this point, death would be a certainty without getting my preserved stem cells back to regrow my blood cells-producing bone marrow. I have to imagine some people in treatment wondering if their stem cells were properly frozen and hope they weren't accidentally misplaced or lost. However, I trust that the hospital will treat the preserved stem cells the same way the Smithsonian treats the Hope diamond. Very carefully. Still funny for me to imagine that my life will be located in some plastic bag that is out of my sight.
A day, or two after the final BEAM chemo administration (when the chemicals dissipate from the body), something magical happens. I get my life back! Cancer patients getting a Bone Marrow Transplant (BMT) often refer to this day as their "Birthday." It's the re infusion day, taking less than half an hour to just do an IV drip of my own stem cells back into my body after they are thawed out in a sink of warm water near the hospital bed. In technical terms this is called "Day 0," or just zero day. All days of treatment prior to this day are numbered -1, -2, -3, etc. And of course all days following are numbered as +1, +2, +3, etc. Once the stems cells are back into my bloodstream, they naturally migrate into the bones and (hopefully) begin to grow and multiply where the previous bone marrow existed. This re-growth process is called engraftment and takes anywhere from +8 to +20 days to show initial signs that it is occurring by measure of white blood cell count increase. During this time I will be at risk for complications that are divided into two categories:
4. Cytopenia (lack of red blood cells or platelets, both of which require blood transfusions and is commonly required for many patients sometime after day 0)
5. Venous Occlusive Disease (VOD), now called Sinusoidal Obstructive Disorder (SOD) where the small veins in the liver collapse (from the chemo) which sometimes results in fatalities. Unfortunately there is no practical treatment for this condition so hopefully it will just not occur.
Obviously infection is the #1 concern and is responsible for approximately 80% of the fatalities inherent in this treatment procedure. So suppressing possible opportunistic infections is critically important and is why I will be treated prophylactically with antibiotic, anti-viral and anti-fungal medications. All it takes is one small opportunistic infection to flare up and cause a bad day in the worst possible way.
1. Nausea. Pretty much a foregone conclusion. Treated with steroids.
2. Mucositis (canker sores that can manifest anywhere throughout the mouth and GI tract). 80% of BEAM people get this affliction preventing eating and drinking for about a week starting sometime after day 0. People sometimes report difficult and painful breathing. Although not fatal and only temporary, frankly this is the issue that scares me most.
3. Hair loss. No duh! But it's ALL the hair on the body. Including eyelashes. Personally this doesn't bother me like it might bother other people. I think it will be interesting. I shaved my head before going over to Germany. It's better than having it come out in clumps on the bed pillow.
4. OK, I'm not going to list the rest. There are many. You can read about them here:
As far as complications go, it seems to me the best defense is having a medical team that is both experienced, and conscientious (i.e. careful). With the BMT team at Heidelberg University they do over 300 of these procedures every year. That is quite a few (among the top transplant centers by volume), and they obviously have the experience. To top it off, Dr. Marc-Steffen Raab will be my attending physician responsible for my overall treatment. He is not only extremely experienced with many international collaborations (including Dana Farber Cancer Institute), but also Dr. Raab currently manages a number of patients in the Autologous Stem Cell Transplant unit at the hospital. And although I have yet to meet the other clinical staff that will be responsible for my care, I think that I will likely be satisfied with the professionalism and capability of the hospital and BMT unit staff. I'll let you know.
Of special mention regarding the Heidelberg staff. . . for my first interface and learning about Heidelberg's capability (and willingness!) to perform the BEAM protocol for treatment of my MS, I worked with Dr. Markus Thalheimer to learn about the opportunity and details of having the treatment in Heidelberg. Dr. Thalheimer was exceptionally helpful, courteous and very professional. And most of all, he did an exquisite job of allaying my fears about the procedure by explaining everything to me in satisfactory detail. ("In technical terms, its not really a 'transplant' since we're using your own stem cells. It's mainly just a chemotherapy procedure.") In actuality he is totally correct (so long as my stem cell bag isn't lost with the Christmas mail! :-) ).
And the other good thing for me is that I don't have cancer. Having cancer can create serious comorbidity issues that lessen the sucess rate of BEAM therapy. I have to think that because I am in otherwise good physical condition, chances of a successful outcome are improved.
I "expect" the procedure to follow not far from my expectations, and hopefully to be discharged (barring complications) early January. I hope to return to California perhaps around January 8, contingent upon the "actual" schedule Dr. Rabb will provide to me when I check in on Dec 3.
Next post about what I've done to prepare for the travel & procedure.
Thanks to everyone!