Diagnosed with tongue cancer (2nd cancer): Worried about treatment

I have not. I did the radiation route. I just came to say I’ll be praying 🙏🏼 for you to find the peace you need during this uncertain time in your life. I had tonsil cancer, so I know where your head is. I’m so sorry 😢

Thank you

I have head and neck cancer but stemming from my ear, not tongue. I have had surgery, radiation with chemo, and most recently an Immunotherapy infusion for the last metastasis. The Libtayo infusions totally shrunk my kidney metastasis away during the 2 years I was on it. There were side effects but quite tolerable compared to dying of cancer. I continue to remain clear almost 2 years since stopping the drug. (Knocking on wood.) There are newer targeted therapy and immunotherapies that can have less side effects than some of the other treatments. You need to talk to a head and neck oncologist for the newest alternatives for your treatment. There is also the option of palliative radiation to slow the growth when cure is not an option. Lower dose with fewer side effects.

I see a head and neck doctor at UT southwestern in Dallas, he did my lower neck surgery in 2011, everything was good until recent, my ENT dr did the biopsy on the 11, but the extent of my treatments is going to come from orangologist, head and neck dr. in between I’ll try those pain solutions thanks

Hi @mytime62 and welcome to the Head and Neck group here on Connect. You can find a few who have addressed SSC with drugs such as Keytruda and had success. A lot of factors have to be looked at.
I’m sorry you had Ameloblastoma, which is not considered a cancer in that it usually never metastasizes. I’ve not known any relationship between that and SSC but then I am not a doctor, just a patient who did the surgery and radiation route.
Good luck in your search. Perhaps run the drug option past your oncologist.

Okay I will ask my dr about this drug and will continue researching, I was told that radiation could have caused this cancer

Hello @mytime62. We are about the same age...I am a 65-year-old woman. It took over one year to get my voice and swallowing mechanism to start working again after radiation treatments for throat cancer. Right now, your cancer is on the tongue, and you say the treatment will be too hard on your family. Please reconsider your game plan. Lady, you are way too young to stop fighting. You have done it before; you can do it again. God will be with you, and so will the prayers of many people that know you. If interested, look up my past contributions on this site. One thing I utilized was "Red-light therapy." It did help my throat to heal and begin functioning properly and can be used on the tongue area as well. A little wand is around $20.00 on eBay. The moderators Mr. Olsen and Sue gave great advice concerning searching for newer drug treatments. Just do not give up! We are all in this together.

Thank you, I’m praying about it

Hi there. I am 66 year old male, in my last week of chemo and radiation for Stage III Base of Tongue Cancer. There will be a couple of rough week post-treatment I have been forewarned, but all in all it hasn’t been too wretched an experience (as wretched experiences go). Lots of fatigue, but hopefully you don’t have to keep working. Got a feeding tube, which I consider essential for adequate nutrition and hydration. I only lost 10 pounds, more or less. People who try to get by without one and lose a bunch of weight will suffer accordingly, IMHO. Have not thrown up once, thanks to Zofran. Taking Norco twice a day as a preventative, but plan on weaning off soon. Due to the radiation the skin on my neck has gotten pretty scorched, but lots of Aquaphor (messy), Miaderm, ask the doc about Lidocaine. I am getting ahead of myself, there are immunotherapy drugs that might be more appropriate in your situation. But don’t give up the ship quite yet. But if you do go chemo/radiation, the experience might nor be as horrible as you think. Good luck!

My expert with tongue cancer was similar to yours. I did radiation and cisplatin/chemo. The last 4 radiation treatments really burned my neck. The Aquaphor and Vaseline bandages along with the vinegar/water soaks were wonderful. I was lucky and for some unknown reason had no nausea from the chemo. I agree the food tube kept my general health good and weight loss minimal. Now 10 months post treatment its still the lymphedema and fibrosis that challenge me every day. Stretching and massage are a must. But all in all for me the radiation and chemo was the right decision.