It was a weird feeling to hold my HLA analysis in my hands these days. For me it's a pretty random set of letters and numbers, but probably it will some day for another person mean a chance to survive a life threatening disease.
But lets start with the beginning of the story. Back in 1991, only months after my dad lost his fight against a brain tumor and died, my mother was diagnosed with multiple myeloma - a lymphoma ("blood cancer"). It is a long story I already told here in some parts. For many years the cancer was showing almost no activity before she suddenly became very sick and urgently needed to start chemo therapy (VAD - Vincristine, Adriamycin, Dexamethasone for the specialists between my readers) to save her life. It was the first of what would become an endless number of critical situations and complications - the rough roller coaster ride of lymphoma treatment.
A myeloma is often a slow progressing cancer, but until now there is no cure. That means the goal of every treatment is to keep the patient in remission as long as possible. The standard procedure is a high dose chemo with a stem cell transplant. There are basically two options:
- the autologous stem cell transplant with the own stem cells of the patient
- the allogeneic stem cell transplant with donated cells of from a related (family member) or unrelated donor
We had some discussions with the doctors which option would be best for my mom and that was when I first considered to get myself registered as a bone marrow donor. First of all I of course would have done it to find out if I could be a donor for my mom although the chance that it works in a mother / child combination is very low. Siblings are usually the best option with about 25% to 30% chance to be a fit.
The decision was finally made to go for the autologous stem cell transplant. This is the therapy standard for myeloma because usually the result of the allogeneic stem cell transplant is not so significantly better that it would compensate the much higher risk of complications. This is different for other lymphoma types like leukemia where an allogeneic transplant can really save a life and be the cure for the patient.
Of course I could have registered myself as a donor at that time although it was not an option for my mom and I remember that I seriously considered it, but honestly we were so caught up in our own struggle with the disease that I did not really made the move.
When my mom finally died it I thought of becoming a donor again, because it would maybe help not only a patient in need but also me to get over the immense feeling of helplessness that was my companion for all the years I watched my dad and my mom struggling.
One important reason, why I still did not register at that time is, that I became pretty sick myself. As a result of my own health problem I was very anemic and could easily compete with the bad haemoglobin test results of a leukemia patient. It took me months after the big surgery two years ago that fixed the basic problem to recover my haemogram and before that a donation was out of question.
Additionally I was so emotionally tired of fighting cancer that when we lost our mom, I tried for a little while to ignore the fact that cancer even exists. But of course it did not really work and soon I was confronted again with close friends or the loved ones of friends fighting cancer. There is no way to hide and when bone marrow / stem cell transplants became part of the treatment plans of some cases in my wider circle, I decided finally to take the plan I was carrying around now for years into action and got myself registered.
How does it work?
If you live in the United States you go here, read all the information and register: BE THE MATCH
If you live in Germany you go here, read all the information and register: DKMS
PLEASE ... do NOT register with more than one database. They are all connected to each other to a world wide network. If you would register more than once it just leads to chaos in the databases.
Being based in Germany I ordered the DKMS registration set and received something that really looked like what you know from watching CSI. The package included two big Q-Tips you need to rub inside your mouth against the jawbone. Once that is done the Q-Tips need to dry (make sure they do not touch your hands or the table) and then you pack and label them. Finally you the send the whole package over to the organization and a few weeks later you get your registration number and your HLA result - and you are ready to save a life. Easy isn't?
To be realistic:
The statistical chance that you will one day really receive a call is not so big. Only 1 out of 20.000 people have a genetic set up that is close enough to yours to allow stem cell donation. And that is the statistics for the general population and not of patients in need versus registered donors. But this statistic shows more than anything else how tremendously important it is that as many people as possible get themselves registered to increase the chance for the patients without a related donor to have a chance for cure.
But what does happen, when it really happens?
There are two ways to donate stem cells. The choice of the procedure depends on the needs of the patient.
20% really donate bone marrow. In a small surgery under general aesthetic about 1 liter of marrow and blood is taken from the iliac crest of the donor. A 2-3 stay in the hospital will be necessary. The cuts are usually so small that they barely need stitches and the pain is like the pain from a bad bruise.
80% of the donors donate stem cells. For a couple of days before the donation the donor injects a special drug under the skin that increases the natural production of stem cells. When that is done the blood of the donor is filtered in a procedure very similar to a dialysis. Sometimes one session (ca. 4 hours) is enough sometimes it needs two. It basically works like this:
I know - none of the options sound like fun, but one thing is for sure:
Compared with what the patient is going through from the high dose chemo therapy that kills of the whole bone marrow and deletes the patients immune systems to the stem cell transplantation including the risk of a graft versus host effect (when the body of the patient despite all genetic match up does not accept the transplant) it is a walk in the park. For the donor it's just a couple of slightly uncomfortable days - a cheap price for giving somebody the chance for cure, an almost normal and healthy life.
BTW - the body of a healthy donor needs only two weeks to fill in the gap of bone marrow / stem cells that results from the donation.
A registration costs about 50 EUR for the genetic analysis. Of course it is for free for the donor since it is important to get as many people as possible registered. On the other hand the non-profit organizations who run the internationally connected databases highly appreciate if you could donate the amount for your registration (I did that) and in general donations are of course more than welcome. Just check the websites for more information.
And now (excuse my French in advance): LET'S FUCK CANCER!