Hello.
I have recently been diagnosed with cancer. MRI shows a tumor in the base of my tongue and involving lymph nodes on both sides. Biopsy confirms HPV mediated Squamish cell cancer. PET scan is scheduled for next Wednesday.
Surgeon (who specializes in oral robotic surgery) says that if he removed the cancer it would take my entire tongue and voice box, so we are going with radiation plus chemo. I may be able to get into a clinical trial which could add immunotherapy (or a placebo).
It’s already very difficult to eat anything remotely solid, so I am getting a PEG tube on Monday.
I’m still working but don’t know how much longer. Taking otc painkillers pretty much around the clock; reserving the narcotics for night.
I’m holding on to optimism: The next couple months will be pretty crappy but I’m hoping for a few good years on the other side of this.
So that’s my story.
Biggest immediate concern is coming up with a zero sugar, ultra low carb liquid diet for the day before the PET - obviously ice cream and Ensure won’t do it.

Thanks for listening,
Will

Will, welcome. this sounds so much like my husband's diagnosis. He just finished #35 of his radiation treatments today. 3 chemo treatments every 3 weeks.

I have to say he has said his pain has only been a 3 or 4 throughout the whole process. His biggest complaint has been the feeding tube hurting and having issues not so much his mouth. He just started pain medication on week 6 of treatment. But everyone is different.

My husband took disability from the day he got the PEG tube until 2 weeks from now but i"m going to petition for a longer disability as his mental acuity is pretty bad right now and he has a desk job in IT.

Hang around here and read some of the posts. I'm a caregiver but it's been a lifeline for me.

Will, welcome to the forum. I’m sorry you have to join our circle of friends, but I know members of the forum are there to help you through your treatment.

Radiation and chemo are the standard treatment for base of tongue cancer. The chemo is a radio-sensitizer and it helps to mop up any stray cells that manage to escape the radiation. At our hospital (I’m in Canada), it is standard practice for patients to get a PEG tube, usually in the third week of radiation treatment. If you’re already having difficulty swallowing, you should look at asking your medical team to schedule you for an earlier appointment. It won’t do for you to lose a lot of weight before your treatment even begins. During treatment it is extremely important for you to stay hydrated and keep up your calorie intake. I’m sure ChristineB will come along soon and talk to you about intake.

If you are looking for low carb liquid food for the day before the PET, what about making some homemade soup. That will be easy and you will know exactly what goes into it?

Please keep us posted and do ask if you should have any questions.

Hi Will,
I think like a veggie soup blended in a blender would be a good low-carb meal for the day. If you search low-carb soups online you probably can come up with quite a variety to try!