So a few months ago, I called my original primary physician to see if I could get a referral to a different oncologist, because the one I've been seeing is just not a good match for me. I was able to get an appointment for December 15, 2015, so off to the new Dr. I went.

This visit, though he still confirmed my original diagnosis, was a much better experience all around.  First off, he met with me for over an hour, explaining all my options, explaining the different types of MDS and how I fit within the spectrum of things.  He noted that while I'm in the intermediate group, my blood levels were still high enough not to warrant transfusions.  The fact that I'm otherwise healthy, young, and feeling well is a huge, great sign.  He mentioned that there was no reason for me to jump into chemotherapy just yet, or even a bone marrow transplant.  Though he confirmed that western medicine says the only "cure" is a bone marrow transplant, that journey is long, VERY hard, and VERY dangerous.  For those who don't know, here is a quick run down on what goes on:

  • first you have to find a 10/10 match, or as close to it for your bone marrow
  • then the donor has to agree to undergo some treatment to prepare their body to create extra stem cells
  • the recipient then goes into a special unit of the hospital, that has it's own filtered air, not pumped in from anywhere else in the hospital
  • recipient undergoes 10 grueling days of high dose chemotherapy to completely kill off the entire immune system
  • ***Did I mention you're shut off from everyone during this time too?
  • on day 10, you receive your bone marrow transplant
  • now the doctors watch to see if your body accepts the new cells
  • in a perfect situation, the body accepts it, and will start functioning correctly
  • you stay in the hospital for months, building up your immunity, still shut off from all visitors

The percentages of successful transplants are not exactly favorable.  Many transplant recipients then battle Graft versus Host disease, where the new immune system is fighting your body (since it's now in an unknown body), or what is left of your immune system, if anything, fights the new cells.  So basically you have a battle going on within your body, of cells fighting cells, which then leave you open for infection and all sorts of other issues.  The best option is if you have a sibling that is a match.  My brother was tested and is only a half match (5/10), which is not favorable, so they then head to the unrelated donor search, in the worldwide bank.  So far, I have no matches.

Anyways, so he was just very informative, very conservative in his approach, and told me to just enjoy the holidays.  No need to rush into chemo right now.  He was a breath of fresh air, as far as I'm concerned.  As I left, he gave me a list of other medications they can use to help, and also his personal cell phone in case I had any questions or urgent concerns.  A doctor that gives out his personal cell number is a winner in my eyes.

After I left, he called me to express his concern still, that I was so young and diagnosed with this disease.  It's so rare, that he wants me to visit with a geneticist to study my genes and see why this may have occurred in my young, healthy body.

I already have my suspicions (*cough cough, implants!), but it will be nice to see what else we can figure out.

Whew...... things seem to be a bit more positive each day.