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    suebond wrote on Dougie's wall

    Hi, I was diagnosed with melanoma in 2008. I had a wide excision, skin graft and 2 lymph nodes removed. The lymph nodes were clear and the margins were too. It was recommended that I watch and keep going to my check-ups. I was nervous too. I was given a pamphlet from the American Cancer Society and found a decision tree, which said the same thing as my surgeon which made me feel better. I was very vigilant about doing self checks and going to my app'ts with the surgeon and dermatologist. If you are doing those things you are not "doing nothing." A second opinion can't hurt though. Hang in there!

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    suebond shared an experience

    Clinical Trial (Pembro/pd-1 immunotherapy ): I was able to start the expanded access trial on July 8, 2014. I received 2 doses and a PET scan was administered. It showed a node in my chest had grown significantly. My dr decided to give me the next dose and then we would re-evaluate. Two days after that third dose I noticed the nodules on my right knee were almost gone! I was refered to a radiologist for the large (size of my fist) node in my chest. He thought we should wait for results of my next scan. Since the nodules on my knee responded to the pd-1 the hope was that the node in my chest did as well. I was very fortunate, the node started to respond. I received a toltal of 15 treatments and we stopped when the node in my chest was resolved. My last treatment was in June of 2015. My scans have been good and I have moved from 3 months to 6 months between scans.

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    suebond shared an experience

    Oh No (The tumors were contaminated and I was not eligable for the trial.): NIH was sarting a new trial. They would take the red blood cells, modify them, grow more of the modified cells and then give them back to you. I would qualify for that. I spoke with my oncologist. He said there was an expanded access trial for pd-1 being put together. He did a scan to see if I could wait for the 3 months it would take for the trial to begin. Fortunately, I was able to wait.

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    suebond shared an experience

    Procedure or Surgery (Surgery to remove cancer that has spread): My surgery was scheduled for a Wednesday and I was admitted to NIHCC on Sunday. I had a PET scan Monday morning. Monday afternoon the doctors told me they did not see any nodules large enough to remove for TIL and I could go home. This was good news they said. I was scheduled for a CT scan right after meeting with them. The nurse asked if I should just have it done since I was already there and ready. The doctors agreed, but did not think it would show anything different than the PET. They were wrong. The CT showed 2 nodules in my small intestine. They were not sure if the tumors would be viable for TIL because they were in the intestine they could be contaminated. I had to make a choice, have the surgery and hope they were viable or return home and consult with my surgeon about removing them. I chose to stay and surgery was performed as scheduled.

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    suebond shared an experience

    Clinical Trial (TIL): My oncologist sent me to NIH in Bethesda, MD to see if I qualified for a clinical trial. After review of my records and some tests I was admitted into the trial. Surgery was scheduled.