We arrive and they quickly get to the blood work, including a new chimerism study and type and screen anticipating the need for transfusions. Todd was feeling pretty fatigued the past few days and we knew his hemoglobin was down last Friday. The results came in that he needed platelets. His was 9 and the threshold is 10. He also needed two units of blood since his hemoglobin was at 7.6. and the threshold is between 8 and 8.5. His white counts were up to almost normal at 3.47 or 3,470 which is likely the result of the Vidaza chemotherapy giving him a bounce.  |
| Todd teased that he knows how a vampire feels when he hasn't had any blood! |
Our social worker stopped by to give Todd the standard 100 day post-transplant survey. She has been such a great help!
Todd's regular BMT doctor was back from vacation and we had a good long visit. She took him off all of his maintenance medications except for one, his Acyclovir. This made Todd happy! After discussing today's counts she talked a little bit more about where Todd is and a likely game plan for the next few steps.
First, he will have his next round of chemotherapy in Dayton starting January 12, 2015. She said she only wanted to do 5 days of the chemo Vidaza instead of the standard 7-day treatment regimen he had over the summer, because his bone marrow is still very sensitive to any changes and they are exposing both his diseased marrow and his brothers donated healthy marrow to the toxicity of the chemo. While they hope to kill off his original diseased marrow they don't want to damage or lose any of his new marrow.
She would actually like to do at least two more rounds (Jan and Feb)of Vidaza chemotherapy to get Todd back into remission enough to proceed with a second stem cell transplant. But this will have to be evaluated week by week and month by month. Many of these decisions will have to be made based on how his chimerism stays. If his brother's donated marrow can hang in there, they can proceed with additional rounds; but, if there would be a drastic change where his original marrow would increase to the point of wiping out his new marrow, then they would likely have to stop the Vidaza and start some type of stronger chemotherapy, like what he had to wipe out the marrow before his transplant.
Right now, his chimerism consists of: His own original marrow 60% and his brother's donated marrow at 40%. There is still a hope that the Vidaza can target the diseased original marrow, causing it to decrease, and allowing Tom's donated marrow to flourish. She said the likelihood of Todd developing any Graft versus Host Disease at this point is minimal and not likely. So, he won't be able to utilize the Graft versus Leukemia Effect to wipe out his old marrow, which is what has made the first transplant unsuccessful.
We talked about the possibility of using a different donor this time instead of his brother Tom again. I asked if there was a possibility that their HLA Match was "too good," not allowing any Graft versus Host, but she said it is complicated to bring in another bone marrow from a third person when he already has two different marrows. She explained that Todd's marrow is not only sensitive because of all the chemotherapy and the transplant but because they are co-existing. To add a third person's marrow may create a range of other issues including exposures the new donor would bring in. So, that option is not ideal right now.
She is still waiting to see what would work best when harvesting Tom's peripheral blood stem cells. There are two main options. The first would be to give him Neupogen injections prior to harvesting, which would produce a larger number of cells, but they would be newer, immature cells that may not be as effective depending on the situation. Or, the second, to harvest the stem cells without Neupogen, because then they would be able to obtain more mature cells. Either way, it looks like we are at the mercy of Todd's brother Tom to donate blood stem cells. This is much less invasive than donating bone marrow. He would only need to do a pre-blood screening prior to donating and it only takes several hours to sit and filter his blood for the cells.
As to whether the second stem cell transplant can be done outpatient or inpatient is yet to be determined. Too many factors to consider now. This is another decision that needs to be made closer to the transplant.
As for going back to the Cleveland Clinic for treatment appointments and transfusions, we no longer need to do that. Todd is going to start going to his local oncologist here in Dayton to have blood work drawn every Monday. If he needs transfusions, it will be arranged here in Dayton at Miami Valley Hospital again. So, this is good news for us. We will only need to go back every few weeks to have blood work drawn for special studies and to meet with his doctor.
So, the next appointment in Cleveland, will be on Wednesday, January 21, 2015. Hopefully, he will have his next appointment here at the local oncologist on Monday, January 5, 2015. (It's been hard to get things scheduled with the holidays and reduced staff). Then he will start his out-patient chemo here the following week, Monday, January 12.
I feel pretty good about this game plan. I did ask about any clinical trials that he would be ideal for, instead of doing the second stem cell transplant, just to make sure we were looking at every option. She said she could look at that route, or the option that Todd could just stay on the Vidaza month-to-month until he stopped responding to it. Then, they would have to try another medication, like Revlimid, which has showed some success with patients who have just a 5q chromosomal abnormality, but this wouldn't be guaranteed to work, since Revlimid works better on patients who have only had this deletion in the past and not the complex multiple deletions Todd has had in the past. She said we would lean towards these options if Todd was older and in poorer overall health, but, since he is young and in good health right now, she feels the more aggressive treatment of the second stem cell transplant is a better course of treatment for him. Todd does face the risk of getting a bad case of Graft versus Host Disease, which she said he doesn't want, so it will take some serious finessing to get the chemotherapy and immunosuppressant use, both prior and post-stem cell transplant as fine tuned for him as possible.
In addition, she reassured us that she alone would not be making all the treatment decisions, but that she would be relying on her colleagues in their weekly meetings to give her their perspective and experiences in planning a course of action. It is nice to see that she doesn't have a "God complex" and that she is humble enough to listen to the opinions of her colleagues.
I still might look at other options or see what clinical trials are available on my own. However, I can't help get past the stigma in my own mind that clinical trials are for lost causes.
Looking back, I wish we had made the decision to have the transplant prior to him developing the complex chromosomal abnormalities. This was a hard decision to make then without having the hindsight we have now. His blast counts were staying under 10%, no where near the Acute Myeloid Leukemia level (20%) and he went from two years of having no abnormal cytogenetics to having multiple complex chromosomal abnormalities 3 months later. I think the "wait-and-see approach" was alright for awhile, but once his numbers starting climbing, we shouldn't have risked the chance of him developing chromosomal abnormalities. It was this development that convinced me to push him for the transplant, knowing that it can alter a patient's prognosis. I personally believe that these abnormalities are complicating treatment now and have contributed to the unsuccessful bone marrow transplant. But, this is just my "hunch" and I don't have empirical, definite evidence to prove that.
Looking back, however, while it might help or influence someone else's future treatment decision (that is the only reason I include my opinion here), doesn't help us at all. We must look forward, remain positive, and trust God with the future. I'm learning from the book that I am reading, that the only thing that separates a Christian from a non-Christian in situations like this, is in how we respond. Christians have no extra protection from cancer from non-Christians. If it is God's will to allow cancer, then he must have a purpose in the process and/or outcome. Maintaining our joy and trust in his divine purpose through this crisis can bring us comfort and provide hope to others.
In closing, I read something recently that said when a loved one has cancer and is going through treatment, it is important to view your current state of uncertainty as the new normal. This is going to be my outlook in the new year. God Bless!
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