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Diagnosed with SCC on base of tongue

Head & Neck Cancer | Last Active: Mar 18 11:49am | Replies (31)

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@rakga

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.

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Replies to "Thank you all for your responses so far! We just returned home from radiation #15 out..."

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.

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!