The beginning of the week has been a pretty good one for Todd. On Monday, he went into see the local oncologist and to get his weekly CBC. He did not need a transfusion, with his Hemoglobin at 8.5 and Platelets at 56,000. His whites and ANCs were still dangerously low. The only concern the doctor discussed with Todd that day was about removing his Hickman central catheter, fearing a greater potential for developing an infection with it in. While we know this, we have always taken great care of it and have never experienced any problems with it.
We are not sure it was a good time to remove it just yet. Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks! In addition, it makes it easier to get transfusions and weekly CBCs.
Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice! I had been suffering from sinus drainage and had almost lost my voice. He was concerned about Todd, but I assured him that Todd was fine! He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two. He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start. Todd told him we would call and get back to him. Todd called BMT doctor and left a message. We didn't hear back until after 5:00 pm that evening. She said she was trying to find out who the site investigator was and would get back to us. By late Tuesday afternoon, I still hadn't hear back from the BMT doctor. I called Dr. Stein and told him that we still hadn't heard anything from Cleveland. He found out who the site investigator was in the course of our conversation and said he would send him a message. Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems. I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet.
Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study. First, the results: the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%. This was up some from his biopsy on February 18, 2015, when they were at 3%. We had expected this slight increase since Todd hasn't had any chemo since February. Once again, we were pleased that the count was not higher.
Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015. Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us. They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME.
The main concern at this point is the window of time Todd has open to get started on the drug. We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd. So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug. Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems. The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland. In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there.
In a way, we are still in limbo about where we need to go for the study. If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015. If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015).
Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough. Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing. I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland. This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.
If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say. Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past. It would have been hard to conceal his name, knowing the work he has done with this trial drug study. I'm so happy that I have nothing say but GOOD about him! This is the kind of doctor you thank God for. I believe that he serves God by serving mankind. You can tell he has a servant's heart with compassion for his patients and their families.
Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet. Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws. This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year. It would also take away an avenue for an infection to get in.
Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion. Then, we are all going to our first all-family counseling session. I'm not sure if I like the psychologist just yet; time will tell.
I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market. I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process. It is stressful and a bit sad to know how much of our belongings will have be sold. I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house. Truth be told, I will likely have to have a moving sale too, after we sell.
We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.
Showing posts with label Pentamidine. Show all posts
Showing posts with label Pentamidine. Show all posts
Thursday, April 2, 2015
Thursday, March 26, 2015
Day 2: Testing for Trial Drug AG221 in NY
We slept until about 9:00 am on Tuesday, March 24, 2015. We took our showers and strategized about where to eat at a good sit-down breakfast, but, before we could decide, Todd noticed that Dr. Stein's office had called and left a voice message for him to call them. He was told that he blood results showed his hemoglobin was low (7.0) and that he needed a transfusion. They wanted us to come in earlier than noon so they could work it into the schedule.
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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