Day +55: Half way through and a Weekend trip home.

At Todd's Day +55 treatment and doctor's appointment, on Monday, November 11, 2014, everything was on schedule and there were no problems.  His counts overall were good and on the rise, but there was a slight drop in his Platelets.  Two out of four of his CBC counts are now in the normal range.  Here are the results:

White Counts:     4.43 or 4,430. Normal range is 3.70-11.0
Hemoglobin:       11.5                 Normal range is 13.0-17.0
Platelets:              47,000             Normal range is 150,000-400,000
Absolute Neut (ANCs) 3.44 or 3,440  Normal range is 1.45-7.50

We were a little concerned in the drop in his Platelets (went from 58,000 to 47,000), but after talking with his BMT nurse coordinator, she said that they typically see a slight drop in the Platelets from day 50-60 (Not sure why). 

That day, we ran into another former patient that Todd was in the hospital with.  He said he experienced the same drop in his numbers and even had to have a transfusion of blood due to lower hemoglobin at the 50-60 day point.  When asking him about his chimerism or percentage of donor vs. self bone marrow left, he said he had gradual drops in his own bone marrow and that he was now at 100% of his donor's bone marrow cells and 0% of his own.  He had his transplant about a week before Todd.

We also had breakfast with another former patient and friend we meet in the hospital.  She was at a similar chimerism as Todd, but her CBC counts were a bit stronger.  They started reducing her other immunosupporessant, Tacrolimus, just that week.

When Todd saw his BMT doctor later that morning, she said that they would probably begin reducing his Tacrolimus next week.  They also drew blood work for another chimerism report, but it will likely take 1-2 weeks to get the results as usual. 

The best news has been that Todd has not seen an obvious signs of Graft v. Host Disease since he was taken off his first immonosuppressant, Cellcept, last week.  Todd's magnesium results were also steady after reducing his magnesium supplements from 6 to 4 tablets per day. 

I still take his vitals twice per day, and there has been no sign of fever or high/low blood pressure.  Todd is doing so well!  We have no complaints!  Well...except to go home.

Speaking of home, we had the doctor's permission to go home for a weekend visit the first time in two months!  We arrived in Cleveland on Sunday, September 7 and got to go home for our first visit on November 7, 2014!  It was so wonderful.  I was able to cook using my gas range and oven!  We were able to stretch out in our king size bed and sleep with our favorite pillows.  The greatest thing was getting to see our daughters and parents.  And of course, my dog!  I'm sorry to say I didn't take one photo the whole weekend!  We were living in the moment, every moment of everyday!  We didn't get to go to church, because that is frowned on by the doctor (too many people, shaking hands, hugging, etc.), but we hope to go soon. 

55 days down, 45 more to go!

Day +49: Doctor stops Cellcept immunosuppressant

Todd got a call the next day after his appointment, Tuesday, November4,2014, from his bone marrow transplant doctor with the results from his chimerism study. The cells from Todd's own bone marrow is at 28% which is down from the 58% result from October 8, 2014 but still not to the 0-4% they need to be. 

So, to help the new bone marrow from Todd's brother to engraft better, the doctor instructed Todd to stop his immunosuppressant Cellcept that day.  She hopes this will help by allowing a little  Graft versus leukemia effect to happen. Unless Todd's old marrow dies out there will be a risk of relapse in Todd's MDS. 

That same day I received a phone call from another BMT patient we got to know while Todd was in the hospital. She had a related-perfect-match donor 

I'm transplant a few days after Todd's.  She too received a call from the doctor (we use the same one) to discontinue her Cellcept too. Her original bone marrow cells were at 30% which isn't too different from Todd's. 

Although the doctor is pleased with both recoveries, she is concerned about that percentage being a bit higher than she would like to see. Both Todd and this other patient/friend were part of the clinical trial where they received the reduced amount/experimental regime of pre-transplant chemotherapy. This is a little concerning. We hope that the trial regimen was strong enough to kill off the patients own bone marrow to allow full engraftment of the donor's marrow. 

At this point, there is no reason for alarm. We still have to be on the lookout for any signs of severe Graft versus Host disease and hope that the Graft versus Leukemia Effect will take care of wiping out Todd's original bone marrow which still has MDS. 

I'm sure the chimerism test will be repeated in a few weeks 

Day +48: Numbers Increase and Medication decreases

At today's doctor's appointment, Monday, November 3, 2014, Todd's doctor did not have his latest chimerism study results back yet.  It could be as late as Friday before they come back.  So, we won't know the results until next's week's Monday appointment.

The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday.  Under normal conditions, this medication is stopped between days +50 and +60.  So, this Friday, will be Day +52.  The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface.  A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow.  However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.

We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
                              Hemoglobin       White        ANC        Platelets
October 27                 10.9                3,110        2,190        50,000
October 31                 11.3                3,840        2,740        57,000
November 3               11.6                4,610         u/k           58,000

His potassium and magnesium results have also been high enough not to need infusions.  As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.

While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon.  I'm ready!

I'm getting so tired of hotel living.  The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am!  Not to mention that I am terribly missing my family and my dog Charlie!  I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier!  My poor mom is ready for some relief too!  (God, please  help her to hang in there!).

We praise God for Todd's good health.  We ask that you remember us in your prayers.  This week specifically: That Todd's body will respond positively to the withdrawal of the medication.  That God will give us all patience and forbearance to endure our living situations a few more weeks.  That God will give us direction in our finances, job opportunities, and affordable health care in the months to come.  Thanks.

Chimerism study: first set of results

At today's treatment appointment, all of his blood counts levels and magnesium and potassium levels were good enough that no transfusions or infusions were needed. His counts continue to climb which is a good sign that Todd's new bone marrow from his brother (the donor) is engrafting and producing healthy cells. 

Two issues at the doctor's appointment were discussed today. First, Todd's blood work from a chimerism study and the rash on Todd's face. 

First, the chimerism study. It is a study of the DNA and HLA typed blood cells in Todd that determines how many cells are present from his own bone marrow versus his newly donated bone marrow. These results "lag behind" according to the doctor, so they may not be reflective of the present (they may be older than what is currently happening). This initial report showed that 49% of the cells were from Todd's original bone marrow. (This makes his chimerism mixed.) That means that 51% of his cells are from his newly donated bone marrow from the transplant. The doctor is thinking about repeating this test on Friday to check for more current results. We would all hope to see Todd's cell numbers from his old bone marrow to greatly decrease and the new cells from his newly donated bone marrow would greatly increase. The best result would be that there would be little to none left of Todd's old bone marrow cells. 

What is the implication of these results?  The chemotherapy that Todd underwent prior to transplant was to kill his own bone marrow since it was not producing healthy cells. There is a possibility that a relapse of Todd's MDS could occur if left unmonitored. The goal of the transplantation process is that the donor's bone marrow will engraft and take over healthy blood cell production. A mixed chimerism of both cells could prevent this from happening. This is where the Graft versus Cancer/Leukemia/tumor (GvL) effect comes in. 

This is why monitoring is so important post-transplant. The doctor can manipulate the GvL by altering the amount and type of medications Todd is on now. The doctor is talking about removing Cellcept from Todd's cocktail of medications. The Cellcept is a type of immunosuppressant that keeps the body from developing Graft versus Host disease. The idea here: to allow a little Graft versus Host in the form of Graft versus Cancer/leukemia effect to kill out Todd's old bone marrow to allow more engrafting of his new donated marrow. 

I will post updates on this issue as it develops. 

Second issue: 

The rash that started on Todd's face and neck has spread a bit to his chest and abdomen. It has not changed in intensity at all, so the doctor is still just keeping an eye on it. He will continue to use hydrocortisone on it for now. 

Post Script:  Date of Chimerism study: Day of release from hospital:  October 8, 2014.

More information on chimerism studies:

http://omicsonline.org/2155-9864/2155-9864-S1-006.php?aid=4311

http://www.gene-quantification.de/qpcr2009/Ganderton-qPCR-2009.pdf