Day +73: Mixed Chimerism Still an Issue

Todd with his Great Nephew Jeffrey at Thanksgiving, November 27, 2014

To follow-up to last week's post, we saw the bone marrow transplant doctor on Monday, November 24, 2014, with no real new news or progress.  After reviewing Todd's CBC blood counts, she concluded that they were stable with no significant decreases.  She had ordered another chimerism study to be drawn that day too.

It was difficult for her to hide her concern.  She recommended that Todd drop down another Tacrolimus pill, from 3 per day to 2 per day immediately. I asked her to give us some indication of her level of confidence that reducing the immunosuppressant would be effective.  She really hated to put a number on it, but I got her to say about  50%.  She tried to encourage us that she was really stepping up the process of removing the immunosuppressant (starting Day+62), because normally, they don't start tapering patients off this drug until they have reached Day +100 and even then they taper it slowly for months.

I confirmed that Todd did have a full intensity, myeloblative allogeneic bone marrow transplant and not Reduced intensity chemotherapy (RIC) which is more common with bone marrow transplant failures.  Additionally, she confirmed that even the timing and the type of medications used in the trial regime wouldn't have necessarily had anything to do with the mixed chimerism that Todd is experiencing. 

She also reiterated that she wants to move the date for a bone marrow biopsy.  Normally, this is done around Day +100, but she wants to do it around Day + 80, which would be around December 5.  She said then they could look to see how many cells are actually in the bone marrow, what their chimerism would be, if there was any presence of the disease (meaning his MDS or blast cells), and if so, at what percentage.

I also implored her to talk about what would happen if removing the immunosuppressant didn't work, and she did somewhat reluctantly.  The most likely scenario would be to harvest stem cells from Todd's brother again, but this time it would be done peripherally,which means they would remove the stem cells from his brother's blood instead of from actual marrow in the hip.  This process would require Todd's brother to receive medication injections prior to the harvest to boost the number of stem cells they could obtain.  However, the process would be much easier on his brother Tom than before.  This 45 second video shows the process: https://www.youtube.com/watch?v=2bTCSslVmKs or this 4 minute video: https://www.youtube.com/watch?v=pZgee5RWccs.  She did not say whether or not he would need additional chemotherapy prior to this transplant, but that they would use a different kind of immunosuppression therapy that would work to suppress Todd's bone marrow right away and not the donor's stem cells like  normal. 

I asked if Todd would be required to be admitted and stay again under close monitoring at the hospital for 30 or more days like before, but she just stated that the process wouldn't be quite as "strict."  She then responded that I didn't need to worry about it; that it was her job to worry about it.  I agreed that it was out of my hands and that she was the professional, but that I would like to have an idea of what might in store just in case, especially since I was planning on going back to work, or finding a job.  If all of this happens, I may not be able to work at all for some time. 

After his appointment, we headed home to spend an entire week there!  We were allowed to cancel his Friday appointment (since it would be the day after Thanksgiving) and return on Monday.  Todd did receive a call from the doctor though late Wednesday night, November 26, 2014, asking him to take away another immunosuppressant/Tacrolimus pill starting that day (cutting them down to 1 tablet/day). She was able to review the levels found in his blood from Monday's results and described the amount found in his system, as "therapeutic" and that this was still too high for him. I imagine she will likely take the last pill away sometime next week. 

Todd's chimerism results showed up on his MYCHART app today: 57% of the cells being from Todd's original bone marrow and only 43% of his brother's donated cells.  This was likely what she saw when she called on Wednesday.  Chimerism results from this week may not be in until Saturday or Monday since much of the staff was off for the Thanksgiving Holiday on Thursday.

Despite this discouraging news, we were so Thankful for Life, Love, Friends, and Family this Thanksgiving Holiday.  We spent Tuesday afternoon with our dear friends Chris and Lynda, with my family on Thursday, and we are planning a dinner tomorrow with Todd's mother.

We are still praying that the removal of the immunosuppressant will be effective.  We go back on Monday, December 3, 2014 for: blood work, an appointment with the bone marrow transplant doctor, and a physical therapy appointment for his frozen shoulder late in the afternoon.