July 14, 2011


     Seemingly random pieces of information like CD38 and ZAP70 began to coalesce into a distinct picture.  But subtle nuances of chromosomal deletions on chromosome 17 with seemingly contradictory multiple copies of p53 only sought to render the image out of focus again.  A lot of information came out at my dad's last doctor's visit, much of it technical jargon.  I'll do the best I can to summarize it here.

Where we've been
  • When we first started, my dad's hemoglobin had dropped to 6.6 (that's the molecule that carries oxygen in your body).  That's risking acute heart failure.  Quite dangerous, it warranted our first trip to the ER.  He wasn't able to make his own red blood cells as his bone marrow was being crowded out by the cancer cells (a clone of a B-cell which is a type of lymphocyte, to be exact).  Until the cancer cells were knocked back, he depended on blood transfusions.
  • He was able to walk about 20-30 feet before becoming exhausted and having to sit down to rest.  This was probably the most obvious medical result needed.  He was not in a good place.
  • Several crushed vertebrae were the source of great pain, nevermind the debilitation.  That was taken care of surgically.  How big a role the cancer played in weakening the vertebrae is not clear, though it's certain to have played some role.
  • His platelet counts were approaching a mildly dangerous level.  Much like the red blood cells, they were being crowded out by the cancer cells.  That put him at risk for deadly bleeds.
  • His neutrophils were dangerously low, again being crowded out.  That left him extremely susceptible to bacterial, and to a lesser extent fungal infections.  Normal bacteria found everywhere, and I do mean everywhere, suddenly had the potential to be life threatening to him.
  • Without treatment, I do NOT hesitate to claim that in all likelihood, my dad would have died by now.  It could have been infection, anemic crisis, bleed, whatever.  Point is, treatment was a must.  So what were the results of that?
Where we're at now
  • The chemotherapy has corrected much of the above.  Whenever he gets bloodwork done (at least weekly), we always get a printout of the results.  Anytime that a result is outside of the normal range, it is in bold type.  He has a lot bold type.  This is the FIRST time, I have ever gotten a printout where his hemoglobin was in the normal range.  It hit 14.0 which is just at the normal bottom range of a male (normal is 14.0 to 18.0).  That's a direct result of the chemotherapy doing its job.  By knocking back the cancer cells, it has made room for stem cells which form the red blood cells to do their thing.  This was corroborated by the recent bone marrow biopsy which showed a 400% increase in the number of normoblasts in the bone marrow which are a precursor of red blood cells. 
  • His neutrophils are now in a healthy range.  The consequence of that is after the 4th round of chemotherapy, we had NO, ZERO, ZIP, NADA trips to the ER.  No infections this time.  I think that's a first because we had ER visits after all the other rounds, if memory serves.  That's a result of the chemotherapy, antibiotics, as well as the drug Neupogen (thank you Amgen! the next time somebody makes drug companies out to be evil with straw man arguments, be sure to give them a swift kick to the groin for me).  It directly boosts his neutrophil counts.
  • His platelet counts, albeit in the low end, are still within the normal range and have been there for several months now.  Substantially less chance of dangerous bleed with those levels.
  • His bone marrow biopsy was complicated, but to give the reader's digest version, the chemotherapy is working.  The number of cancer cells have been greatly reduced to point that the official term is "residual".  The doc said that my dad is right where he needs to be.
  • As a result of all this, he simply feels better.   He's not skipping up and down the lane, mind you, but he has substantially more energy than before.  Gone are the days of walking 20-30 feet and having to sit down.  Not once did he have to ride in a wheelchair (as he did in the beginning) during our long wanderings at MD Anderson.
Where do we go now?
  • My dad is NOT cured.  I want to make that clear.  Even though things are going well, the chemo regimen does not offer a cure.  Even if the next bone marrow after 6 months shows zero cancer cells, it is still not cured.  So why even do the chemo, then?  Because without it, he'd be dead.  Sorry to be so blunt, but those are the facts.
  • So how long does the chemo give him?  That's a good question and to be honest, we don't know.  My dad's chromosomal abnormalities and genetic profile is murky and confusing.  At the end of the day, though, it is HIGHLY LIKELY that my dad will require a stem cell transplant, in the words of the doctor.  My take is, in the absence of a miracle, he's heading for a stem cell transplant.  Period.  While a long remission would be nice, I don't bank on miracles when making plans about the future.  A stem cell transplant will be necessary for my dad to continue his life.
  • So, he's heading for a stem cell transplant (STC) then?  Why not right away?  Well, first of all, the patient needs to be somewhat stable to endure STC.  So the chemo was necessary and prudent.  Second, it takes time to prepare for STC -  stable patient, a suitable match, etc.
  • So if not now, then when?  Good question.  It depends.  This is where we pull out the crystal ball and use the subtle shades of gray and nuances that make medicine an art.  Barring any unforseen complications, my dad will finish out the remaining two rounds of chemotherapy.  That puts anything out at least 8 weeks from now, late-September at the earliest.  First, we have to find a match.  We got notification that one of his brothers is a match.  We do NOT know how good of a match he is.  They look at 10 markers.  If the brother matches 10/10, then my dad will in all probability proceed with the stem cell transplant after the 6th round of chemo.  Strike while the iron is hot.  If the brother is a 7/10 or 8/10, then it depends.  If my dad is stable and doing well clinically, then they will continue to look for a better donor (9/10 or 10/10).  That may last 6 months.  That may last 12 months.  It may only last 1-2 months.  We don't know how long we'll get.  If my dad's cancer begins to act up again and come back, then we may have to go into STC with whatever match we have at that moment.  Or, we try a second line chemo to try to buy another 4-6 months.  Who knows.  Crystal ball and all that.  There are no definite decisions or concrete pathways.
  • We still have one brother who has submitted his test but the results are pending.  Having a backup at this point is absolutely necessary, especially since we do not know if the current match is sufficient.  If neither matches up well enough, we begin to search the national registry. 
I hope that makes things a bit clearer.  I know a lot of people having been waiting to hear how he's doing.  We certainly do appreciate all the support from family and friends that we have continued to receive, especially in light of grieving while trying to fight yet another battle.

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