Last week I was at the Cleveland Clinic. All of the testing went well. My pulmonary function tests were all normal. On the PET scan no spots showed up (the lung nodule didn't light up because it's too small for a PET scan to pick up). Also, on the CT scan my lung nodule didn't grow. This pattern of growth is not typical for Ewing's. My oncologist told me that my case has been brought up at some of the sarcoma conferences he's attended. He thinks my immune system has been keeping my disease in check, and that this immunotherapy trial could make it even better. At this time, he believes my prognosis is favorable.
I got some more clarity on the trial. Here's the flow of events that could happen. First, I will have the nodule removed from my lung. Then, Gradalis (the drug company responsible for Vigil) will try to make up to 12 vaccine vials for me with those cells. If there are less than 4 vials made, then I'm already out of the trial. This could happen if there are not having enough cancer cells or the cells are not of great quality. After the vials are made they randomly select 50% of the remaining patients to receive the immunotherapy. In all cases I will receive the two chemotherapy drugs Irinotecan and Temozolomide for 9 months.
If I don't make the 4 vials necessary to be in the trial, then I won't need to travel to Cleveland, and I will go back to being treated at Penn full time. If I do make the vials, then I will be treated at the Cleveland Clinic whether I receive the immunotherapy or not since I would be registered in the trial. As far as frequency and number of appointments go, my impression last week was that it will be more of a time commitment than I expected. I still need more clarity on that.
My oncologist estimates 4-8 vials will be made, but anywhere from 0-12 wouldn't surprise him. He had a patient similar to me that couldn't get into the phase 2 trial last summer because the nodule they removed was completely scarred over from his immune system.
The only bad news I got last week was that my surgery had to be postponed to 9/18. This was my oncologist's fault for making a promise he couldn't possibly keep. You just can't schedule a surgery with the best thoracic surgeon at the hospital at the last minute. (Remember that they couldn't schedule it until after the scans were done just in case my disease ended up being spread more.) He was completely booked this week, and couldn't fit me in next week either. My oncologist is on vacation the week after that, so it's now scheduled for 9/18. My oncologist thought I could go with another surgeon, but the thoracic surgeon did not recommend it. The nodule is in a hard to reach spot. The surgery needs to be done differently because of the scar tissue from last year, and also because of the trial. There is a higher risk for complications this time. One last thing to note about my upcoming surgery is that they don't use an epidural at the Cleveland clinic because it causes more harm than good, and it keeps the patients in the hospital too long. I will be at the hospital for 1-2 nights, probably 1.
I'm very impressed with the Cleveland Clinic. The hospital is huge. They have over 40,000 employees, their own fire department, police force, and zip code. It was pretty overwhelming when we got there, but everyone was very helpful in helping us navigate the facilities. My oncologist even took time out to walk me to my next appointment. Going that extra mile really makes a difference. The social worker has also been excellent. She is setting me up to get a lot of my flights completely covered. I feel very comfortable with the doctors taking on my case.
A nice consolation for not having surgery was being home to help move my younger brother Joey into college. He is attending Marywood University and will be studying to become a Physical Therapist. He also will be playing basketball for the school. I'm very proud of him.
I got some more clarity on the trial. Here's the flow of events that could happen. First, I will have the nodule removed from my lung. Then, Gradalis (the drug company responsible for Vigil) will try to make up to 12 vaccine vials for me with those cells. If there are less than 4 vials made, then I'm already out of the trial. This could happen if there are not having enough cancer cells or the cells are not of great quality. After the vials are made they randomly select 50% of the remaining patients to receive the immunotherapy. In all cases I will receive the two chemotherapy drugs Irinotecan and Temozolomide for 9 months.
If I don't make the 4 vials necessary to be in the trial, then I won't need to travel to Cleveland, and I will go back to being treated at Penn full time. If I do make the vials, then I will be treated at the Cleveland Clinic whether I receive the immunotherapy or not since I would be registered in the trial. As far as frequency and number of appointments go, my impression last week was that it will be more of a time commitment than I expected. I still need more clarity on that.
My oncologist estimates 4-8 vials will be made, but anywhere from 0-12 wouldn't surprise him. He had a patient similar to me that couldn't get into the phase 2 trial last summer because the nodule they removed was completely scarred over from his immune system.
The only bad news I got last week was that my surgery had to be postponed to 9/18. This was my oncologist's fault for making a promise he couldn't possibly keep. You just can't schedule a surgery with the best thoracic surgeon at the hospital at the last minute. (Remember that they couldn't schedule it until after the scans were done just in case my disease ended up being spread more.) He was completely booked this week, and couldn't fit me in next week either. My oncologist is on vacation the week after that, so it's now scheduled for 9/18. My oncologist thought I could go with another surgeon, but the thoracic surgeon did not recommend it. The nodule is in a hard to reach spot. The surgery needs to be done differently because of the scar tissue from last year, and also because of the trial. There is a higher risk for complications this time. One last thing to note about my upcoming surgery is that they don't use an epidural at the Cleveland clinic because it causes more harm than good, and it keeps the patients in the hospital too long. I will be at the hospital for 1-2 nights, probably 1.
I'm very impressed with the Cleveland Clinic. The hospital is huge. They have over 40,000 employees, their own fire department, police force, and zip code. It was pretty overwhelming when we got there, but everyone was very helpful in helping us navigate the facilities. My oncologist even took time out to walk me to my next appointment. Going that extra mile really makes a difference. The social worker has also been excellent. She is setting me up to get a lot of my flights completely covered. I feel very comfortable with the doctors taking on my case.
A nice consolation for not having surgery was being home to help move my younger brother Joey into college. He is attending Marywood University and will be studying to become a Physical Therapist. He also will be playing basketball for the school. I'm very proud of him.
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