I finished radiation at the end of February and chemo at the end of May. A pet scan in July showed a small something at the original tumor site. The radiation oncologist and ENT recommended either waiting 3 months to scan again, surgery, or more radiation (2-2400 more. I've already had more than 7,000). I'm not convinced that any of these options are good so I go to get a second opinion at MSKCC and upon the review of my pet scan and a physical exam, the radiation oncologist there says she sees no reason to further radiate without further testing. I have a ct scan, an MRI, and a needle biopsy under ct guidance. 3 weeks have gone by and in that time, I found out yesterday that it is a very large tumor at the base of my tongue. He tells me that surgery would involve removing my entire tongue, voice box, and part of my face. He won't do the surgery because there's not even a 5% chance of it working. It seems my only options now are more chemo, radiation, and/or a clinical trial. I meet with the medical oncologist on 9/26 and RO either Friday or early next week.

I started to develop throbbing pain along my tongue which I thought was late onset radiation side effects. The pain started at the end of July and has gotten so bad that I saw a pain management specialist and am on a steady of stream of Percocet and Lyrica. Now we now that the swelling in my neck is not lymphedema or scar tissue from the massive amount of radiation but the damn tumor growing from the size of a quarter to what now feels like an apple.

I just can't believe this. None of us believes this when we get the diagnosis cancer, no matter what stage we're at. But I just can't believe that this bitch just won't go away.

I'm reluctant to say this to anyone but I'm terminal. I have no idea if any chemo will work at this point. I was pretty much told it could keep the tumor at bay but I don't believe it will ever go away.

Why can't the very thought of my almost 5 year old daughter and 6 year old son make this go away? Like, if I hug them enough that will cure me? I'm not stressed. I'm on so much medication I'm floating through the days.

I've been trying to research this on the boards and am not coming up with much, probably because I'm high and unfocussed. Anyone out there have a similar aggressive tumor? What should we ask the doctors?

I'm so sad for my kids, my husband, and my poor mother.

10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away