Checking in again after starting treatment

Good luck with what’s ahead. Keep your mind occupied with whatever works. Whining and complaining is allowed. We are here for you. Courage.

I had HPV+ Base of tongue TORS. I had 30 rounds of radiation. No chemo. I managed fairly well until about number 15. Throat soreness/pain made it difficult to eat. If I were you I would fight to keep eating as long as you can. I know the feeding port makes things much easier but sometimes it is difficult trying to remember how to swallow and eat coming back off of it. I never went on a feeding tube but I had to Force myself to eat/ drink. Either way it will not be a fun few months but you can and will get through it. I am 14 months out and probably 90% back to normal. Have faith!

Thanks William and jonesja for your encouragement! At least this has given me the opportunity to return to my childhood love of cold cereal like Cherrios for breakfast, although I need to scramble up some eggs for protein. Will keep indulging as long as I can 🙂

Please eat as much as you can now. The last week and the month or so following can be tricky. They gave me lidocaine which I put in before eating. That helped me a lot. Hang in there

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion that said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct, but it was not easy at all. Since I did not want to lose weight (was 220 lbs and lost only 15 lbs), it took me usually 2 hours to eat and had to blend a lot of food and had a box of Kleenex next to me as it was very painful to swallow. Took about 3 months from my last radiation treatment to have no pain except for spicy food which took longer.

I did research then and found in an England Journal of Medicine that honey could help soothe the throat pain from the mouth sores you will get. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me. I would use Manuka honey which you can find on Amazon that scores UMF 10+ and MGO rating of 100+ is considered potent enough for medicinal use- the higher the rating, the more potent, and of course, the more expensive, the honey.

Taste could go away too for a period of time (mine was about 8 months) and will have dry mouth. To help with taste buds' and regain them faster people have found ACES + Zn® supplement works. It contains vitamins A, C, E selenium and zinc.

You will get better. Hope this helps. Good luck.

I finished the path you are on in early Feb. I recommend both the port and food tube. I also did the,baking soda rinses and had only one mouth sore. It healed quickly and I know how lucky I was. I also had no nausea from the cisplatin. Lucky again. I seemed to tolerate it all well. I know fatigue was increased big time. And I had/have increased neuropathy in my hands and feet. But I have had MS for several years so it was hard to tell at the time if it was my MS or the treatment. The final 4 radiation sessions caused burns to my neck. I used vinegar soaks and Vaseline coated gauze wraps. My nurses were wonderful training me on that. You may want to start using CeraVe cream on your neck and face now to prepare. I credit the food tube and formula with keeping my health and healing at its peak. And the port with keeping me comfortable. I figured my body was under enough stress from the cancer, surgery, and treatment that using those two options made sense.

I gotta tell ya, after two weeks I already feel like death. Part of it is that I have lost all my appetite, my stomach is just unhappy whenever I have anything by mouth or via the tube. Spoke to the dietician yesterday, she thinks it might be constipation so I am taking more Miralax and Senna. My weight is fluctuating and I do need to stabilize it, but hard to do with your stomach in knots. Anyone have any magical solution that I have not thought of?

I was given 3 different prescriptions for anti nausea meds at the start of cisplatin. There was a whole protocol of when to take them and if one doesn't work how to take the next. I didn't need them but, I wonder if that's what's bugging you? Maybe ask your oncologist about that. I know some patients on it have serious gut problems. Hope you can find relief.

In addition to what I stated previously, part of my treatment plan was to take the 3 different anti-nausea meds at the start of cisplatin no matter what. I went to Froedtert Hospital in Wisconsin which is a true cancer center that specializes in more head or neck cancers than anyone else in the state by far. Anyways, my two cents. I know this can be overwhelming, but you will get through this.

In looking at my notes, the three anti-nausea meds that I took I believe were Emend, Ondansetron, and Prochlorperazine.