Dec 27, 2012
Since we couldn't get the answers we wanted from the doctors we visited, my mom called a doctor up at Memorial Sloan-Kettering in NYC. This guy basically wrote the book on head and neck cancers. He said that they have divided up his department, and he now only does thyroid cancers, but he advised us to take my dad to Moffitt. She decided it'd be convenient to take us both there. Since Moffitt is an NCI, I think they had an easier time communicating with my doctors back in Georgia, who also are part of an NCI. They had all of our scans pulled up on the computer already when we came in and everything.
So, yesterday we went to Moffitt, and my dad saw the head and neck surgeon who does these specific types of surgeries in his sleep. He only does this, and that's it. From the MRI that my dad had, we know that the tumor left behind is actually 2.8 cm, not 1.5. This adds up to about 4.3 cm. This technically puts him at a stage T3. The surgeon scoped him and confirmed this. He also said that it invades the base of his tongue, and it's right in front of his epiglottis. It's not another tumor, it's an extension of the original tumor. They think he has some microscopic disease going on in the lymph nodes, as the ones on the left side are slightly enlarged. He said he definitely would not suggest further re-excision or any more surgery, as this would cause permanent dysfunction to his speech and/or swallowing, and he would still have to get chemotherapy and radiation. Why do it if chemo and radiation could achieve the same results without the surgery? So, what he said was the protocol that they use is 7 weeks of radiation, with 5-FU and cisplatin on days 1, 22, and 43 of radiation simultaneously. They also do the PET scan while doing the radiation simulation to get better targeting. There was also a study being conducted by a radiation oncologist there comparing 2 cycles of this chemo to weekly chemo treatment with Erbitux all while doing the radiation. This trial is being done in HPV positive patients, and my dad is one of them, so it's possible that he could qualify.
After meeting with him, the radiation oncologist was there, and said that he could meet with my dad. He wasn't even supposed to be in that day, and they had no appointment with him, so this was very convenient. Now this guy has about 25 years of experience with specifically head and neck cancers, and a lot of experience with HPV positive tonsillar cancers, as he is conducting research on it. He said almost the same thing, but his treatment plan was a bit different. He suggested 6 weeks of radiation, with one day a week being doubled-up, as in radiation in the morning and the afternoon. He's going to bring my dad's case before the tumor board on Tuesday to see if he qualifies for the trial, as the tumor may be too large, there may be too much lymph node activity, and he also wants to see if he even needs chemotherapy. If he does, it would be cisplatin alone 3 times throughout the radiation. He's going to have radiation simulation with the CT scan today and with the PET scan next week. He'll have to have a dental appointment to make sure his teeth are ready to handle this radiation nonsense, and then he should be able to start about 2 to 3 weeks after that.
I met with a surgeon who only does Renal Cell Carcinoma. He said that he would have done 2 more days of radiation for the bone mets. He thinks that would have been more effective in managing my pain. He also said that he would have chosen a different order, basically, for the medicines that I have been put on for the control of the tumor growth. He's pleased that I'm on the Inlyta now. He said that he would have taken out the whole right kidney, but it's too late for that now. It was a little discouraging listening to all the things he would have done differently, but that it's too late to change. It makes me think that things could be a whole lot different right now had I gone to them in the first place or had I started out at an NCI at the very beginning of my treatment. It just seemed like a lot of coulda, woulda, shoulda during my appointment, but he said that he's hopeful that the treatment I'm on now should give me the best chance for basically living as long as possible. He also gave me some tips for gaining back some of the weight I've lost, so I'm going to try those. He confirmed that what we're doing now is pretty standard, but he doesn't like that my symptoms aren't well controlled, so he'll work with me to adjust the dosages in order to get them under control. Especially with the breakthrough pain and the nausea.