Unfortunately, they did not. The results showed his Hemoglobin at 8.3, whites
at 1.4, ANCs at 1.1, and platelets at 46,000. This means he is once again close to needing another transfusion (hemoglobin < 8.0). This is also the lowest his immune system (reflected by the white and ANC counts) has been since he was in the hospital last October 2015. What does all of this mean for everyday living? Taking extra precautions with activities like shaving with a razor (low platelets), living with severe fatigue, watching for a fever, and being cautious with what he eats (washing fruits and vegetables well, avoiding raw or under-cooked fish or meats, etc). But worst of all, being severely anemic means transfusions. The transfusions themselves aren't necessarily bad for him, even though they can result in a build up of iron, but they are inconvenient and often a multi-day process. First, getting labs to see if he needs a transfusion, then getting typed and screened, then setting up the transfusion at the hospital, and then the almost day-long process of getting the 2 units of blood. The depressing cycle of fatigue and knowing your counts are dropping and hoping the transfusion will provide the much needed energy can be draining.
I talked to Todd's bone marrow transplant Doctor this morning to get an idea of the game plan and where we go from here. She informed me that they ran a complete viral panel with his blood work and everything came back negative. If he had something bacterial he would have a fever. And the last bone marrow biopsy showed no increase in blast cells.
This was her opinion: Schedule appointment with Pulmonary Specialist to look at lungs, since he is still struggling with the cough. Next, deal with the anemia with transfusions until we know what's going on. I agreed with her that it may take some time to see if his complications and anemia is the result of "the disease evolving." While the AG221 is helping to keep blast counts low, it may not be keeping the disease from causing the anemia and low blood counts. My daughter Abby had brought up a good suggestion, which I put to her: "Would it help/be an option to increase the dose of his AG221?" It was something she hadn't considered, but said it could be an option, but, if he is already suffering from the side effects of nausea, diarrhea, and high liver enzymes, that increasing the dose would likely make all of these side effects worse. Not to mention, she would have to approach the drug company and ask it was even an option.
She had just received his cyto-genetics report back from the most recent bone marrow biopsy, and while there was no real major changes or new chromosomal abnormalities, she had noticed an increase in the number of 5q abnormalities, which could be a reason for the lower counts. She said that about 15/20 chromosomes observed had 5q deletions. She said she may consider the idea of switching Todd's medication from AG221 to a medication used to treat MDS patients with the 5q deletion called Revlimid. Since the transplant failure, we knew he had this option in our back pocket if we needed it. It might be time to pull it out and use it. Unfortunately, it is very unlikely that he could continue on the AG221 and just in the Revlimid, because it would be against the conditions of the trial study. But, if Todd would become transfusion dependent, and the AG221 was deemed no longer effective, then this is another good option for him. We all have been so bullish on AG221 because it has worked so well for him, so we aren't going to let it go until we know for sure that it is not helping him. I've even considered calling Dr. Eytan Stein at Memorial Sloan-Kettering in New York again if we can't get some answers, to see what he thinks. Whatever it takes; that is what we will do!
I'm trying to make him rest and take it easy. It has been so blistering hot in Dayton the past week, that being outside is more difficult for him. I'm getting good with the Zero-Turn Lawnmower! We are planning on taking it easy this weekend, plus, Hannah Lewis is getting wisdom teeth taken out on Saturday! So, I'll be nurse Kimberley to the invalids this weekend! (just joking).
Todd will go get his blood counts checked at the beginning of next week, if he thinks he needs a transfusion. I have to say I was impressed with his nurses at Soin Medical Center. They sent him a personally signed card wishing him to get better!
The next trial appointment at the Cleveland Clinic will be August 10, 2016. They have a full day of tests already scheduled. Maybe we will find out something more by then. We wanted to try to take a family vacation before the kids go back to college and school, but its not looking good since we just don't know how he is going to feel and if will continue to need transfusions.
Thanks for your support.
MORE INFORMATION:
About revlimid: https://www.drugs.com/revlimid.html
She had just received his cyto-genetics report back from the most recent bone marrow biopsy, and while there was no real major changes or new chromosomal abnormalities, she had noticed an increase in the number of 5q abnormalities, which could be a reason for the lower counts. She said that about 15/20 chromosomes observed had 5q deletions. She said she may consider the idea of switching Todd's medication from AG221 to a medication used to treat MDS patients with the 5q deletion called Revlimid. Since the transplant failure, we knew he had this option in our back pocket if we needed it. It might be time to pull it out and use it. Unfortunately, it is very unlikely that he could continue on the AG221 and just in the Revlimid, because it would be against the conditions of the trial study. But, if Todd would become transfusion dependent, and the AG221 was deemed no longer effective, then this is another good option for him. We all have been so bullish on AG221 because it has worked so well for him, so we aren't going to let it go until we know for sure that it is not helping him. I've even considered calling Dr. Eytan Stein at Memorial Sloan-Kettering in New York again if we can't get some answers, to see what he thinks. Whatever it takes; that is what we will do!
I'm trying to make him rest and take it easy. It has been so blistering hot in Dayton the past week, that being outside is more difficult for him. I'm getting good with the Zero-Turn Lawnmower! We are planning on taking it easy this weekend, plus, Hannah Lewis is getting wisdom teeth taken out on Saturday! So, I'll be nurse Kimberley to the invalids this weekend! (just joking).
Todd will go get his blood counts checked at the beginning of next week, if he thinks he needs a transfusion. I have to say I was impressed with his nurses at Soin Medical Center. They sent him a personally signed card wishing him to get better!
The next trial appointment at the Cleveland Clinic will be August 10, 2016. They have a full day of tests already scheduled. Maybe we will find out something more by then. We wanted to try to take a family vacation before the kids go back to college and school, but its not looking good since we just don't know how he is going to feel and if will continue to need transfusions.
Thanks for your support.
MORE INFORMATION:
About revlimid: https://www.drugs.com/revlimid.html
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