We grabbed some quick breakfast (muffin, coffee, juice, and yogurt) from the cafe in our hotel lobby and headed to the hospital around 10:30 am. First up, we had to go to get the type and screen to order blood for the transfusion. Then, we headed over to Dr. Stein's office, where we met with the doctor to sign the consent forms. Once signed, we were able to ask additional questions. I had just a few after yesterday's visit. I asked for his opinion on the use of chelation therapy to reduce iron in Todd's blood. He said, that he thought it interesting that local oncologists typically recommend it, but that he nor other oncologists/hematologists at larger cancer facilities do not. He said that the research shows that the use of chelation therapy has NOT been attributed to living longer, but has side effects, and for this reason, he doesn't recommend it.
I also asked about adding his Pentamidine treatments back in. Todd was getting this medication to help prevent a pneumonia caused by Pneumocystis jiroveci (carinii), but since we haven't been back to Cleveland, he didn't receive it this month. We had met with the pharmacist yesterday, before seeing Dr. Stein, to discuss all the medications and chemotherapy Todd has been on. It is important to document because using chemo or certain medications before the study or during the study, can disqualify him from the study. There was some question as to whether he could continue this medication or if he needed to switch to a similar drug in pill form. So, Dr. Stein clarified that he can have Pentamidine if it is inhaled only, which is what he has been doing. He recommended we have it set up to be done by Todd's local oncologist. I noticed though that they had it set up there at Sloan Kettering for next week just in case.
After finishing with Dr. Stein, we were reunited with his research assistant, who asked Todd some questions about his current symptoms, to use as a baseline for comparison after treatment of the drug begins. Then, another assistant, took us under her wing and let us know she would be there to guide us through the day's schedule. First up, was the echo cardiogram and EKG. Next, we tried to fit in the blood transfusion, but he had to go get the bone marrow biopsy next. It was probably after 4:00 p.m. before he could settle in for the transfusion. I ran down and got us some "lunch" at the cafeteria. Their procedures for transfusions are a bit different from anywhere we had been. They wouldn't run the transfusion IV at full pump speed (240) after the initial 15 minutes. The nurse said that since Todd was a new patient, they were being cautious and might have been able to run it at 200 if he had been there before, but that they never go over that. So, running the blood at a speed of 175, it took about an hour longer than normal, or 2 1/2 hours for one unit. At first, they were only going to give him one unit. Apparently, that is the new standard unless the patient is lower than 7, but we argued that in all the times he had transfusions, he had never received just one unit. So, the nurse called Dr. Stein and he approved the second unit. He was concerned about Todd's oxygen levels in his blood, since he would be flying the next morning.
Todd didn't finish getting both units of blood until 9:00 p.m. Once again, we got take out and ate it in our room. It was another long day, but Todd was feeling better. We went straight to bed, because we had to be at our shuttle stop at 7:00 a.m. the next morning. Everything went according to the schedule the Corporate Angel Network set up for us. We arrived at Teterboro airport and flew out around 8:45 a.m. and landed in Columbus, Ohio around 10:15 a.m. We had to drive back towards home to go to two appointments, one at noon and the other at 3:00 p.m., so Todd could get his IV antibiotic treatment at the Cancer Center.
We wanted to thank everyone who helped us with the trip: The Corporate Angel Network and their generous participating companies and Beau Townsend Ford, (especially Jamie, Chris, and Kevin) who paid for our hotel stay both nights and helped with medical bills that were not covered until we reached our deductible.
What to expect next:
We are expecting to hear from Dr. Stein's office by this Friday, March 27, or Monday, March 30, 2015 to hear if Todd was approved. His test results have to be examined and his case brought before the drug company's board and the Sloan-Kettering's board. Once we get the call, we will return to New York next week, either Monday, March 30, or Thursday, April 2. We will need some time to arrange flights, rides, and hotels. We will need to return to Memorial Sloan once a week for the first month and then only twice per month or every 15 days after that. We hope that the Cleveland Clinic will be an approved study location by then, so we can transfer his case study there, which would just require two trips up to Cleveland.
Locally, he will finish out the last few days of his IV antibiotic treatments and then he is scheduled to see the local oncologist on Monday, March 30, if we are not going to New York. They will also run a CBC to see how his counts are and order any transfusions if necessary.
Other news:
It was interesting that I was exploring reasons for Todd developing his MDS a few blogs ago, when the MDS Foundation posted a talk regarding this exact subject: http://www.onclive.com/onclive-tv/Dr-Komrokji-on-MDS-Risk-Factors-and-Preventative-Measures While it is hard to hear everything the doctor is saying, because of his accent, the basics of his talk is written out. So far, it would appear that smoking cigarettes is one of the main causes of new cases of MDS, because of the benzene contained in them. (Todd has never smoked though). If you are a smoker, can I beg you to find a way to stop? I have watched three grandparents die from smoking related diseases and cancer. There is so much proven research out there that shows that smoking causes multiple types of of cancer.
They also know that prior chemotherapies can also lead to MDS (like Robin Roberts from Good Morning America who had breast cancer first, and developed MDS from chemotherapy treatment).
I have finished my semester classes, which will give me more time to work, care for Todd, and get our house ready to sell. While I dread the idea of selling our house, knowing how traumatic and challenging it is going to be, we just can't afford to stay here. If anyone is willing to help us do some house repairs or box-up things to move, sell, or donate, please let me know via email, Facebook message, or phone call. We will also be looking for a 3-bedroom place in Beavercreek, OH to rent, if anyone knows of a suitable place.
In addition, I have stopped looking for a full-time job right now, but I will be substitute teaching until the end of May. I may look for something else part-time after school lets out. It is really hard to plan anything as we seem to be living day by day or week by week. But, both of the older girls are looking for summer jobs, if anyone can offer them something.
Thanks to everyone who has helped us with meals, rides for the girls, and I even received a gift card for a message, which I had asked for! We appreciate your love and support.
I also asked about adding his Pentamidine treatments back in. Todd was getting this medication to help prevent a pneumonia caused by Pneumocystis jiroveci (carinii), but since we haven't been back to Cleveland, he didn't receive it this month. We had met with the pharmacist yesterday, before seeing Dr. Stein, to discuss all the medications and chemotherapy Todd has been on. It is important to document because using chemo or certain medications before the study or during the study, can disqualify him from the study. There was some question as to whether he could continue this medication or if he needed to switch to a similar drug in pill form. So, Dr. Stein clarified that he can have Pentamidine if it is inhaled only, which is what he has been doing. He recommended we have it set up to be done by Todd's local oncologist. I noticed though that they had it set up there at Sloan Kettering for next week just in case.
After finishing with Dr. Stein, we were reunited with his research assistant, who asked Todd some questions about his current symptoms, to use as a baseline for comparison after treatment of the drug begins. Then, another assistant, took us under her wing and let us know she would be there to guide us through the day's schedule. First up, was the echo cardiogram and EKG. Next, we tried to fit in the blood transfusion, but he had to go get the bone marrow biopsy next. It was probably after 4:00 p.m. before he could settle in for the transfusion. I ran down and got us some "lunch" at the cafeteria. Their procedures for transfusions are a bit different from anywhere we had been. They wouldn't run the transfusion IV at full pump speed (240) after the initial 15 minutes. The nurse said that since Todd was a new patient, they were being cautious and might have been able to run it at 200 if he had been there before, but that they never go over that. So, running the blood at a speed of 175, it took about an hour longer than normal, or 2 1/2 hours for one unit. At first, they were only going to give him one unit. Apparently, that is the new standard unless the patient is lower than 7, but we argued that in all the times he had transfusions, he had never received just one unit. So, the nurse called Dr. Stein and he approved the second unit. He was concerned about Todd's oxygen levels in his blood, since he would be flying the next morning.
Todd didn't finish getting both units of blood until 9:00 p.m. Once again, we got take out and ate it in our room. It was another long day, but Todd was feeling better. We went straight to bed, because we had to be at our shuttle stop at 7:00 a.m. the next morning. Everything went according to the schedule the Corporate Angel Network set up for us. We arrived at Teterboro airport and flew out around 8:45 a.m. and landed in Columbus, Ohio around 10:15 a.m. We had to drive back towards home to go to two appointments, one at noon and the other at 3:00 p.m., so Todd could get his IV antibiotic treatment at the Cancer Center.
We wanted to thank everyone who helped us with the trip: The Corporate Angel Network and their generous participating companies and Beau Townsend Ford, (especially Jamie, Chris, and Kevin) who paid for our hotel stay both nights and helped with medical bills that were not covered until we reached our deductible.
What to expect next:
We are expecting to hear from Dr. Stein's office by this Friday, March 27, or Monday, March 30, 2015 to hear if Todd was approved. His test results have to be examined and his case brought before the drug company's board and the Sloan-Kettering's board. Once we get the call, we will return to New York next week, either Monday, March 30, or Thursday, April 2. We will need some time to arrange flights, rides, and hotels. We will need to return to Memorial Sloan once a week for the first month and then only twice per month or every 15 days after that. We hope that the Cleveland Clinic will be an approved study location by then, so we can transfer his case study there, which would just require two trips up to Cleveland.
Locally, he will finish out the last few days of his IV antibiotic treatments and then he is scheduled to see the local oncologist on Monday, March 30, if we are not going to New York. They will also run a CBC to see how his counts are and order any transfusions if necessary.
Other news:
It was interesting that I was exploring reasons for Todd developing his MDS a few blogs ago, when the MDS Foundation posted a talk regarding this exact subject: http://www.onclive.com/onclive-tv/Dr-Komrokji-on-MDS-Risk-Factors-and-Preventative-Measures While it is hard to hear everything the doctor is saying, because of his accent, the basics of his talk is written out. So far, it would appear that smoking cigarettes is one of the main causes of new cases of MDS, because of the benzene contained in them. (Todd has never smoked though). If you are a smoker, can I beg you to find a way to stop? I have watched three grandparents die from smoking related diseases and cancer. There is so much proven research out there that shows that smoking causes multiple types of of cancer.
They also know that prior chemotherapies can also lead to MDS (like Robin Roberts from Good Morning America who had breast cancer first, and developed MDS from chemotherapy treatment).
I have finished my semester classes, which will give me more time to work, care for Todd, and get our house ready to sell. While I dread the idea of selling our house, knowing how traumatic and challenging it is going to be, we just can't afford to stay here. If anyone is willing to help us do some house repairs or box-up things to move, sell, or donate, please let me know via email, Facebook message, or phone call. We will also be looking for a 3-bedroom place in Beavercreek, OH to rent, if anyone knows of a suitable place.
In addition, I have stopped looking for a full-time job right now, but I will be substitute teaching until the end of May. I may look for something else part-time after school lets out. It is really hard to plan anything as we seem to be living day by day or week by week. But, both of the older girls are looking for summer jobs, if anyone can offer them something.
Thanks to everyone who has helped us with meals, rides for the girls, and I even received a gift card for a message, which I had asked for! We appreciate your love and support.
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