Thursday, April 26, 2012

AML: Day 4 @ Mayo: Going FISH'n

Today was one of the more productive and informative days. 

7:45
Meeting with my transplant coordinator.  She (Marsha) took me through the schedule for the pre-transplant conditioning.   I will be admitted to the hospital Sunday morning to start chemo.  I will have chemo Sunday and Monday then radiation.   I will be inpatient all week and will be released after that transplant on Friday or Saturday morning assuming all is going well.  We talked in detail about Graft vs Host Disease   More about GVHD later.   I signed up for a few more research studies.  They wanted permission to take blood samples to study to monitor my progress.   Mayo tries to get everyone going through the transplant to sign up, so this is not related to my general awesomeness. 

9:15
Meeting with Pharmacist.  They took me through the drugs I will be on to prevent infections and GVHD.  We talked about side effects. Pretty standard stuff.   Here's something regarding the meds, as an inpatient, there are no copays on meds.  As outpatient which I will be, I am responsible for copays for all meds.  For something like vfend (an  anti fungal) even the copays are pretty high. 

11:00
Tour of the Gift of Life Transplant house.  Several people suggested this place and a good option for lodging for the duration of my stay here.  I'm going to write another post tonight about the transplant house.  Short story, they have a room available so I decided to take it.  Lodging issue resolved. 

2:30
Bone Marrow Consultation.   Met one of the hematology doctors.  He is pone of the team that will be involved with the transplant.  The nice thing is a lot of the work is done as a team of doctors and nurses.  So there are many people involved in monitoring an decision making.  The Dr. just checked me out and ran over things in a little more detail.  All good.   

A couple interesting points:
  • The radiation they are going to give me is a full dose radiation.  They often do a lower dose because the age of the transplant recipient is generally higher.  In my case they are going to hit me harder because I am younger and should tolerate it better. 
  • My donor is the same blood type as me.  So my blood type won't change. 
  • The FDA considers my donor to me ineligible because they are from Germany.  The reason is because of BSE (Mad Cow Disease).   Because of the outbreak of Mad Cow Disease in Europe many years ago, the FDA still considers that donors from Europe to be ineligible.  The funny thing is that Mayo can ignore it and proceed anyway because of the high risk nature of my cancer.   The Dr remarked that there is a high percentage of matches that come from European countries.  If it were not for the international donors, there would be FAR fewer matches.
2:45
Surgical consult.  I need to have a Central line (Hickman catheter) placed.  The surgical resident came in and took me through the procedure and the risks.  Remember I have mainly had PICC lines.  This long term port will be an adjustment.  I will have surgery in the morning to place the Hickmann. 

3:30
Visit with my doctor.  Dr. Hogan.  This is the first time I have seen him since January.  I like him.  He is to the point, full of info and explains things in detail.  He kind of wrapped things up.  Have me more detail and some new info. 
  • My tests are coming back as we hoped.  I am still in remission. 
  • My heart functions are a little lower then normal. That is I am not pumping quite as much blood with each beat as I should.  It is believed this is cause by the cumulative effect of all my chemo.  It is something they will monitor but it is not low enough to be of major concern right now.  This is why these tests this week are important, they can monitor this to make sure we don't need to adjust treatment. 
  • My kidney's and liver are working fine.
  • There are no chromosomal abnormalities in my DNA right now.  (My biopsies when I was not in remission indicated an issue in the 11th chromosome of my Leukemia cells).  Right now, everything including my spinal fluid is clear. 
  • Dr Hogan ordered a FISH test on my DNA to see if there are any chromosomal issues that are not obvious.  Basically a FISH test lets the doctors look in more detail to see if there could be issues to look out for.  Because my leukemia presents with problems in the 11th chromosome, they want to look at my normal cells in more detail to see if there could be some underlying condition. 
  • My donor is a 9/10 match and male (from Germany).  The one protein that does not match is the DQ marker.  Dr Hogan said that if there is one that you want to not match, it's this one.  Generally there is a 10% higher risk with each mismatch, this one however does not have a statistically higher risk.  This is good news.  It essentially means it's as good as a 10/10 match. 
  • My donor tests positive for the HCMV virus.  I do as well.  50-80% of people in the US have this virus, 40% worldwide.  For the most part it does nothing, but it can be very dangerous for immune compromised people (like I am going to be).  Becasue they are aware of this, they can monitor the virus for reactivation.  I am told they can detect even a flicker of reactivation and if that happens (which is rare) they can treat with stonger anivirals. 
  • It happens Dr. Hogan is the director of the department here.  So I count myself very fortunate to have him and my primary doctor. 
As you cant tell from this post... It was a lot to take in today.  I am starting some of my meds tonight to begin conditioning my liver for the treatments.    With all this info and lodging issue resolved, we are in a good spot and I am beginning to have a handle on everything. 

Doctor said things are essentially as optimal as they can be and we are good to proceed.  It is good news.  

Surgery and a few more tests tomorrow...   Saturday off and Andy joining me on Sunday (I miss her).   Almost there...

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