A Chat with the BMT Doctor clarifies Results and Treatment

We received a call back from Todd's BMT Doctor this afternoon, Wednesday, January 7, 2015.  She is assigned to doing rounds on the BMT floor at the Cleveland Clinic. 

I asked her to help clarify Todd's latest chimerism study results.  The results indicated that cells captured in the peripheral blood showed 50% of cells from Todd's original bone marrow.  When isolating just the T-cells, which are his fighter cells, from the blood, they found 24% were from his original bone marrow.  I was confused which number indicated the overall percentage of Todd's cells, knowing the remainder would be the donor cells.  Was it 50% Todd's original marrow and 50% Tom's donated marrow? Or, was it 24% Todd's marrow and 76% Tom's?  Apparently, it isn't so cut and dry.  Todd's overall chimerism is at 50/50 and the T-cells are 24/76.  Either way, these results are better than what they were prior to his first round of post-transplant Vidaza treatment, which was 60% Todd and 40% Tom's cells. 

When I asked if the chimerism could be totally reversed to 100% donor cells at this point with just Vidaza treatments, she agreed with his local oncologist that it would be highly unlikely.  While the Vidaza may continue to reduce or kill Todd's original marrow cells, it would never be able to be fully reversed if cancer cells are still present, which includes any amount of those fighter original T-cells (the second count) from Todd's diseased marrow. The Vidaza is helping with the chimerism, but it is mainly limited to killing the blast cells and attempting to reverse the 5q chromosomal deletion he currently has. 

I also asked her to distinguish between a Donor Lymphocyte Infusion (DLI) and a second stem cell transplant and which she was planning to do after the treatment rounds of Vidaza.  She said she wasn't sure just yet; everything depends on his chimerism and whether his MDS can get put back into remission.  She said she is anticipating doing the second stem cell transplant with some type of chemotherapy to suppress his bone marrow and cells.  She doesn't think the DLI would be successful or effective if any of his own marrow still exists, because the diseased marrow/MDS is still too strong and would likely kill off the DLI cells.

She was pleased to hear that he didn't need any transfusions this week and that better arrangements had been made to get his transfusions done sooner while we are in Dayton. 

All of these detailed, technical medical terms and procedures are enough to make your head spin!  Todd's local oncologist asked me if I had now become a nurse since I've learned so much throughout his care and treatment!  I wish!  If I was about 20 years younger, I would love to study medical research.  There is so much going on in the medical field now, especially in the field of genomics, isolating causes and finding new drugs or treatments.  There has been some great success with some types of leukemia with medication like Gleevic and programing T-cell fighters. There isn't much to offer MDS patients at this point, except the great success they have had with the medication, Revlimid for patients with the 5q deletion.  Since I don't want to start medical school (ha ha!), the least I want to do is to help raise money for the MDS International Foundation and/or the Leukemia and Lymphoma Society.  These organizations help to fund and organize clinical trials and medical research for new treatments and medications.  I will, someday.  When the time is right.

Todd is still suffering from his frozen shoulder.  Not much seems to help.  He looks so helpless unable to use his arm!  He's feeling a bit run down, so I plan on tying him down and keeping him in the house resting all day tomorrow.  Its going to be so cold here, that even a healthy person shouldn't  be out unless they need to.  The girls are off school because of the dangerous temperatures, and Abby hasn't returned to Cincinnati to resume her college classes yet. So, the plan is to hunker down!  Stay warm!  God bless you!  We appreciate your prayers and support.

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.