Archive for July, 2008

WHICH PATH TO TAKE

Tuesday, July 29th, 2008

Tonight we met with Dr. Horton to discuss yesterday’s results and treatment plans.  There are five potential options:

ONE:  Continue with this protocol.  Because some of the numbers are so close to remission, Dr. Horton feels Johnny can continue this protocol — it seems to be working, he’s responding, why rock the boat?  He would get a high dose of methatrexate on Monday, and probably repeat cycle two (which he’s doing right now) until the transplant team has the donor prepared — approximately 4 weeks.  Dr. Horton will have to plead Johnny’s case to the leukemia team and get their approval– but only if the other test results are close to remission numbers.
TWO: Super aggressive. This is a trial that hasn’t been approved by Baylor College of Medicine (TCH) yet, other hospitals are using the protocol, just not TCH.  Approval for this protocol could take up to 10 days.  This super aggressive path has really bad side effects like septic shock (no thank you) or death (we’ll pass).  Neither one Mike or I are ready for. But if you can make it past those two obstacles,  you go to transplant and have a pretty good chance from that point on.
THREE:  Aggressive. Clofaribine will be the only chemo and is extremely hard on the marrow — recovery could take months — which might also give the cancer time to come back as well. But if this one goes smoothly, Johnny will go to transplant when finished with this protocol.
FOUR:  Go home with oral meds to keep the cancer at bay for as long as possible, with no chance of transplant.  This option isn’t even an option because the cancer would take over within two maybe three weeks.  Every time he’s had to stop treatment the cancer came back and progressed extremely quickly.
FIVE:  Comfort care.  Same results as four, but much, much faster, instead of weeks, it would be days. Neither are an option for us.
So that’s what we are up against right now.  I’m also going to check St. Jude’s and MD Anderson to make sure we have exhausted all other treatment plans.

NOT IN REMISSION

Tuesday, July 29th, 2008

Yesterday after Johnny’s aspirate & biopsy we learned he’s not in remission – he’s close — only 6-9% blasts, anything under 5% is considered remission.  These numbers are considered preliminary and we should have more information by the end of the week. Usually the numbers aren’t too different from what they are today.  I was happy that the blast count was nearly half of what they were last week and the doctor’s were glad the numbers didn’t increase.

There are a few ways the doctor’s look at the blasts to get results.  One is called morphology and it’s pretty simple, they look at cells with the naked eye through a microscope. The preliminary results from  this test showed 6-9%, down from 15%ish last week.  FLOW is another test which looks at the proteins on each cell (I think this one is from the biopsy) – and is 6%, down from 30-40% last week.  Then there is FISH (fluorescent insitu hybridization – our doctor wrote it down for me!) this test looks at the breaks in the gene/DNA and helps them determine what the cancer cells react to (I think) and helps give guidance with treatments. The results from this take about a week.
Whether Johnny is in remission or not he still has another month or so of chemo. This afternoon we will talk to Dr. Horton (who is running the trial Johnny is on now) to discuss what the other options are for treatment (sounds like there are a few).  We should have a much better idea of what the next month to month and a half looks like for us by the end of the week.