I have been on the search for a clinical trial since April. If you haven't had this experience let me tell you that it has been an ordeal. I found one clinical trial that looked like a great match, I would have to drive to Chicago, but it looked like a good match. We had gone through the process of getting all of my files transferred and reviewed and scheduled for me to go up and get testing done. I actually scheduled my appointment to go in for the testing and then two hours later received a phone call that the other cancer center had filled the spot and I could call back in August. August? Really? Who knows where my cancer will be by August.
Onward to trial attempt number two. I contacted a company twice the week I found out I couldn't get into the first trial to see if I could get into another trial which is based out of another location in Illinois. Unfortunately I was not eligible for that trial due to the fact that I have had Carboplatin on two separate occasions during my cancer treatment.
Onward I went. When I contacted my gyn oncologist office we determined that there were two options for me. One would be to see a doctor at Simon Cancer Center at IU in Indianapolis about phase 1 clinical trial options and another would be to try another type of chemotherapy that I had not tried yet. We opted to look at phase 1 clinical trial options.
I woke up today and felt the anxiety. I guess I should be happy that the anxiety about the situation took until today to kick in. I made it to the cancer center to see Dr. O'Neil at Simon. He is a multidisciplinary oncologist who focuses on trials. When I went in the first thing he asked was how I am doing, I told him "I'm pretty stressed today, I don't know what would be worse for you to tell me there's no options for you OR for you to tell me there are options but we don't know what will happen." The answer was the latter worry. We have options, but of course in the nature of a clinical trial we don't know what will be happening.
There were many discussions, one was about where to biopsy if we needed a biopsy. I pointed to an area in my neck and said that my PET scan had shown a spot in that area previously. He asked if I could feel it, I told him no. He then he felt and said he could feel it. I am going to be honest. Every time my hand is near my neck now I have to feel that spot. I cracked up when I told him that is all I could feel now. I mean really, it is the first spot of cancer I have been able to feel externally. It shouldn't be funny, but at this point it is.
The choice we made is to try and get me onto two different treatments in conjunction with each other: BBI503 and Pembrolizumab (Keytruda). The BBI503 treatment is a newly discovered drug that may treat cancer by killing cancer stem cells, a highly malignant subpopulation of cancer cells that are though to be responsible for metastatic cancer. This would be used in conjunction with the immunotherapy medication Keytruda, if approved. The thing about immunotherapy is when it works, it can work for a long time. When it doesn't work...well lets just say that my cancer has a ways to grow before we have to worry about that. Onward to finalizing this clinical trial!
More details to come as I have them. In the mean time I am here rocking life and having a great week with my family! Next week Wylee heads off to Camp Kesem
Onward to trial attempt number two. I contacted a company twice the week I found out I couldn't get into the first trial to see if I could get into another trial which is based out of another location in Illinois. Unfortunately I was not eligible for that trial due to the fact that I have had Carboplatin on two separate occasions during my cancer treatment.
Onward I went. When I contacted my gyn oncologist office we determined that there were two options for me. One would be to see a doctor at Simon Cancer Center at IU in Indianapolis about phase 1 clinical trial options and another would be to try another type of chemotherapy that I had not tried yet. We opted to look at phase 1 clinical trial options.
I woke up today and felt the anxiety. I guess I should be happy that the anxiety about the situation took until today to kick in. I made it to the cancer center to see Dr. O'Neil at Simon. He is a multidisciplinary oncologist who focuses on trials. When I went in the first thing he asked was how I am doing, I told him "I'm pretty stressed today, I don't know what would be worse for you to tell me there's no options for you OR for you to tell me there are options but we don't know what will happen." The answer was the latter worry. We have options, but of course in the nature of a clinical trial we don't know what will be happening.
There were many discussions, one was about where to biopsy if we needed a biopsy. I pointed to an area in my neck and said that my PET scan had shown a spot in that area previously. He asked if I could feel it, I told him no. He then he felt and said he could feel it. I am going to be honest. Every time my hand is near my neck now I have to feel that spot. I cracked up when I told him that is all I could feel now. I mean really, it is the first spot of cancer I have been able to feel externally. It shouldn't be funny, but at this point it is.
The choice we made is to try and get me onto two different treatments in conjunction with each other: BBI503 and Pembrolizumab (Keytruda). The BBI503 treatment is a newly discovered drug that may treat cancer by killing cancer stem cells, a highly malignant subpopulation of cancer cells that are though to be responsible for metastatic cancer. This would be used in conjunction with the immunotherapy medication Keytruda, if approved. The thing about immunotherapy is when it works, it can work for a long time. When it doesn't work...well lets just say that my cancer has a ways to grow before we have to worry about that. Onward to finalizing this clinical trial!
More details to come as I have them. In the mean time I am here rocking life and having a great week with my family! Next week Wylee heads off to Camp Kesem
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