Diagnosed with SCC on base of tongue

Thank you all for your responses so far! We just returned home from radiation #15 out of 35 so almost halfway there. It's been a bit of a roller coaster, but overall, tolerable so far. As a reminder, he has cancer at the base of his tongue, p16+, T1N2bM0, and began a protocol of 7 weeks with cisplatin chemo each Monday and radiation Monday - Friday.

Week one was okay, the main struggle was just depression and trying to absorb that everyones thoughts and prayers are actually with YOU and not you praying for someone else.

Week two was dealing with quite a bit of nausea (thankfully no vomiting) and constipation. Olanzapine makes him extremely jittery and he cannot keep still so he has not been able to use that as an ongoing medication. Zofran helped some. Since compazine is closely related to the olanzapine, the doctor recommended staying with zofran.

Week three and the nausea has subsided thankfully. But, at the end of this week, the extremely thick saliva and taste bud issues have come on strong. Last night was the first time he used his feeding tube for Boost HVC as well as some water. Even though he was able to eat some eggs this morning, I forsee using the PEG tube more and more.

I am SO thankful to be almost halfway through the treatment itself but my anxiety has been creeping back up the past couple of days. It is so hard to see him lost in feeling bad and concern about his own recovery. We have a wonderful group of friends and family supporting us but your experiences are the most helpful to me.

Hi @rakga Thanks for the update. I know how much this can turn your world upside down. It's not an easy fight, not impossible either. One day at a time. Expect after radiation is over he likely will continue to feel worse for a few days to a couple of weeks before the uphill return to normalcy.
Rent some movies to take his mind off how he feels. Or perhaps a good card game or jigsaw puzzle. Keeping the mind on other things can help a lot with how he is feeling. For me having friends and family visit was nice for about five minutes but my desire to not be the center of attention soon overwhelmed. It's hard to put on a happy face when you feel like you have been hit by a bus. I certainly understand your need for support however. And please feel free to ask anything of this community Courage and good healing.

You are making progress @rakga, and setting that final treatment as a goal is helpful. My oncologist really supported making goals in the short term and I feel that helped a lot. Unfortunately it does tend to get worse before it gets better, but facing each day's challenges with the knowledge that this is temporary will help. I agree with William about the distractions. Books on tape were a huge help on our hour drive to and from Radiation every day. For me, getting outside to walk, enjoy some sunshine, hear the birds was a necessity every day. Perhaps you can find a quiet area where you both can walk or just sit and soak in the nature around you. I had total facial paralysis on one side post surgery so I wasn't up for visitors or being in the public eye, but I did pick up an old hobby and start embroidering again. Are there any old or new hobbies you can interest him in?

@tracymef, welcome. It's inspiring to hear from a pioneer who was diagnosed almost 20 years ago. Are you still following by your cancer team or is your care long since transitioned to your primary care physician?

I have that, and starting chemoradiation this week. I anxious, and ready to do all I can. I feel good, eating good. I know side effects may be hard, in the mouth, throat. I have a baking soda, salt, water mix to help with it. How long after treatment, do the check if things have worked?
Thank you.

For me, I had quarterly checkup for 2 years, with a CT scan and endoscopy for the first year. In year 2, I received an endoscopy each quarter and CT scan every 6 months. In year 3 and so far in year 4, I get a CT scan and an endoscopy every 6 months.

They had my wife come back after 4 weeks.

Hope all was good. I'm just anxious to start!

I have had the exact same cancer as your husband. I’m almost 1 year since treatments and getting better every day. I hate to say it, but things will get worse. Be the person for your husband who helps him, not force him to do what you want or expect while in treatment. I wouldn’t eat, but knew when/if I needed a feeding tube. That’s the most difficult part-people letting us decide what we need. Eating is the most challenging and will be for a long time. Food tastes horrible and I used to love to eat. Even after a year I still don’t care for meat and things are too spicy for me. I used to use hot sauce like it was ketchup. Just don’t pressure him even though it’s killing you not to help. I still have several “leftovers” from the radiation. Buy Aquafor pronto for his neck and start using it immediately. My neck was horrible after about 4 weeks. Tell him I said he’ll need a lot of time and patience, but things do get better. We have a very curable cancer, so even with all of the pain and stress we will survive. Sending you both prayers for strength!

Thank you all so much! Keep the feedback coming. We're doing a lotion recommended from his radiation oncologist on his next twice per day and so far, they are pleased with how things are looking.

His biggest battle right now is the thick mucus that looks creamy. He's doing salt and baking soda rinses religiously as well as using Helios 2x per day. He told me that it's getting more difficult to swallow which I assume is related to the mucus settling in his throat?

The Boost VHC and Ensure Complete caused digestive pain and issues so we're waiting on Kate Farms Peptide formula tonight and praying that it works for him because he is simply not getting enough calories right now.

His radiation oncologist did share that she is seeing progress on her general scans used for her calculations at the halfway point which was very reassuring. Praying it continues!

Your support is so appreciated!