Hi. I've got my first radiation session today and chemo tomorrow and am looking for some help to keep it together. I've already got some swallow disfunction from surgeries and am not sure how I'm going to hold up in there.

I got my first diagnosis in 2003 with a very small SCC on the side of the tongue. It was removed and I went 11-12 years with no recurrences. 2014 dysplasia (and a skipped follow up) lead to a 2015 diagnosis of cancer. Tumor was removed from same side of tongue as were <20 lymph nodes from my neck. Fortunately the nodes were negative. No radiation. It came back (or never left) in 2017 in the floor of my mouth. My surgeon underestimated the severity and didn't do enough to remove it. I trusted him even when last June the Mayo Clinic was advising segmental mandibulectomy and free flap surgery. This December my guy saw the light as a CT scan showed that my jaw was being further eroded.

I went on a clinical trial for Keytruda even though I am PDL-1 negative. And had some hefty surgery on 1/30.

Resected cancer from floor of mouth, tongue and segmental mandibulectomy. Fibula free flap surgery failed. Emergency surgery was only partially successful and was followed up by Leech Therapy (yes leeches) to improve blood flow to the flap. Ultimately, that wasn't enough as only about 60% of flap tissue was viable so I had a 3rd(salvage) surgery. Salvage surgery was a pec flap at the beginning of March.

Nodes are still believed to be negative. A small positive margin also makes chemo necessary.

Did I mention they said I had some kind of micro heart attack (while in the hospital) and after convincing me to get an angiogram two arteries were found more than 90% blocked! I got two stents implanted after my second surgery before I left the hospital.

My swallowing is now more labored than it used to be and I am fearful of what is to come with radiation. I have some Ativan which I hope will calm the nerves.

I've asked my doc about Amifostine for dry mouth etc. He isn't in the habit of prescribing it anymore because of "side effects, questionable efficacy and fears of tumor protection." My research seems to show Amifostine works and those fears are unwarranted. However, it might not work for people like me who are also getting chemotherapy.

Thank you in advance for your support and advice.


Jay