AML: The Match Game...

Since we achieved remission with more chemo, and the tests were coming back with the results we want, the next biggest concern is finding a matching bone marrow donor.

For those just joining us, I don't have a related donor.  So I had to go to the national donor registry to get a match.  I must say I was a little overwhelmed at how many people asked to join the registery on my behalf.  Even the school nurse at my kids school, sent out a flier and info for a local bone marrow drive.  (join at www.marrow.org)

The good news is that there were 4 preliminary matches found in the national registry.  After further testing I know I have a 10/10 match, a 9/10 match and one more that is still pending. 

I have been asked about how a bone marrow match is determined.  Here is my short hand version.  

First, a bone marrow transplant is really a stem cell transplant. Stem cells are essentially these blank cells can the become more specialized cells, in my case bone marrow.  Bone marrow, along with creating the various elements of the blood is where much of your immune system comes from.  Essentially I need to get these stem cells from a donor to create a new immune system in my body.  When that happens, the new immune system will see my leukemia cells as foreign and will attack them.  The trick is we don't my new immune system to take out anything important along the way. 

Second, it has nothing to do with blood type.  What we are woking with is something called HLA typing.  (Human leukocyte antigen for those taking notes).  In simple form: HLAs are proteins.  This particular proteins are in pretty much every cell we have and tell the body which cells belong in our bodies and which do not.  So the goal is to get donor stems cells that have an HLA type as close to mine as possible. 

And here is why this is uber important.  We are attempting to prevent something called Graft-vs-host disease.  Since the donor cells are creating a new immune system, the danger is not that my body will reject the new cells, it's that this new immune system in my body will reject the rest me.  At this point you should begin to see all the nasty things that could happen should my new immune system decide my liver needs to go.  (yes I know I have been at odds with my liver over the years, but we've grown close recently)

By finding a donor that has an HLA type close to mine, the hope is that we'll be able to convince this new immune system that the rest of me is not so bad and that we can all get along.  So they look at these various HLA markers in a donor, compare to mine and a 10/10 match is good.  For every step down (ex: 9/10) you decrease the chance of success 10%.  in most cases they will not do a transplant below 8/10. 

Now,  In my case I have a 10/10 match.  Sweet right?  Come to find out, that this match is a female.  The preference is that the donor be of the same gender.  As a result, they are testing one more person. So I am waiting.. 

As I understand it, in roughly 6-8 weeks we'll be able to do this transplant.  Recovery... will take up to a year or more.  Honestly, I have not even been looking that far ahead.  My advice to my chemosabes, do what you need to plan, but don't get ahead of yourself.  It just creates that much more to worry about.  Focus on the next step... the rest has pretty much fallen in line.

On a very happy note Andy and I were so happy to be part of the baptism for little cousin Isabella and niece Ava these last few weeks. 

Well friends, that catches us up to where we are today.    Lots more to come...

AML: This is Spinal Tap...

(In my thickest british accent)
Well, I'm sure I'd feel much worse if I weren't under such heavy sedation...

Ok for those that have never seen the 1984 classic (This is Spinal Tap) you've probably got no idea what I'm refering to... I'll come back to that.

So, It's been a while.  Good news is 7th round of chemo, which was another "induction" round after my relapse has put me back into remission just like we needed.  So one more step closer to my transplant.   This time the Dr let me out of the hospital on Day 7 instead of keeping me in for the full 3-4 weeks.  I managed to go to work a couple of days then when my couts dropped, was comfortable at home until they recovered.  I had meds to keep infections away, and it worked. 

Only 7 days in the hospital.  though I often went back for labs and transfusions when needed. 

So after my counts recovered we did another bone marrow biopsy (my 5th) to confirm I was back in remission.  Then a PET scan.  It's a full body scan after they make me basically drink some radioactive sugar.  Cancer cells suck up this stuff and it helps them determine if we are damaging any organs or if there is any obvious cancer anywhere. Then I had a Lunbar Puncture (Spinal Tap) to see if there were any leukemia cells in my spinal fluid.  Leukemia likes to hide there and not all chemo drugs can make it through the blood/brain barrier...  Survey says...  all clear!  One more step closer. 

Now, I have had 7 rounds of chemo and 5 bone marrow biopsies. I have had countless procedures and been poked more times then I can count.  The only thing I will fight tooth and nail to never repeat is my spinal tap.  Perhaps you could get by the fact someone is digging around in your spine where all of a sudden your left ass cheek and leg go numb (to which the Doc responded, "Guess we're in the right spot").  Turns out that can be normal when the needle touches the edge of a nerve, but some warning would have been nice.

The problem is that in 20-30% of the cases a lumbar puncture can result in a headache.   I got the headaches.  On a pain scale of 1-10, they were 11 (another Spinal Tap movie reference... anyone?)  The pain was in front of my head, behind my eyes and temples, then later moved to the back of my head above the spine.  If I sat or stood up it was much worse.  Prolonged periods would cause me to sweat and become nauseous. I went back to the emergency room the next day to get a "blood patch".  Essentially they inject a little of your blood into the spinal column, which should clot and fix the leak. 

The ER doctor felt it was sufficient to just treat me with muscle relaxers.  Which provided temprary relief considering they had me lay down the whole time.  I left the emergnecy room with the recommendation that I just really needed to lay down and take it easy.  So I spent the rest of the week in significant pain.  The problem was all I could do was lay down, it was the only relief. Pain meds did not work.  So for the rest of my chemosabes out there...get the blood patch.  As it turns out, it took 6 days for things to begin to get better on their own.  Those 6 days were worse then any chemo treatment I had.   

With that all behind me and with the good test results, we are that much closer to my transplant. 

On to the Match Game...