Has anyone else dealt with long-term effects of tongue cancer treatment?

I had head and neck cancer, was told it was terminal 6months to live, we did two operations after operation 1 didn't work. We did operation 2 again not kool. I refused chemo and radiation as it would just wear my body down and my quality of life would go down. Happy to say I am cancer free, we did 2 more separate pet scans to prove it. Don't give up hope, you're to strong for that

Stay strong

Thx Duane I’m fine I’m cancer free 5 years now unfortunately I’ll dealing with the side effects of radiation

Hello - I still have frequent check ups, my chemo and radiation was two summers ago. My taste buds aren’t really back, just a few things that taste good. What I’ve noticed most is my memory. Or lack of.

That radiation is tough .how are u feeling

I’m good, and I actually feel very lucky - many folks have it a lot worse. I’m very, very fortunate. As my ENT oncologist told me, radiation is the gift that keeps on giving. So true.

That is very true , where are you from

I’ll keep you in my prayers

Hang in there Joe stay strong

Thx Duane all is good hope you are doing well

I had the stage 4 diagnosis last June had to have my teeth pulled for oral health as after radiation it would not be an option. Oct - Dec chemo 1 day a week and radiation 5 days a week thank god for my wife I would have curled up and died without her driving me. Now feeding tube for all nutrition As for oral my tung is half numb everything taste like trash can’t speak clearly so the only occasional enjoyment is super cold drink. I asked my Dr if this is what I was going to be and he said he was not sure as most of his patients with my situation he would have simply removed the tung and hoped for the best. Only time will tell. I did try putting chicken or beef in the vita mix to liquify it as a drink but it has a gritty texture and didn’t taste like anything I wanted.

Geeze Derick - I’m so sorry for what you’re experiencing. Try your best to stay/be positive. It can’t be easy, I understand that, and you have it worse than I did. Remember, there’s new oncology information coming every day. You can be that miracle. Your wife sounds amazing. You’re in my thoughts and prayers - come here to vent if needed. And keep us all posted❤️

A bit of different question...have you or the cancer patients found any outlets for financial assistance?

Your not alone, also diagnosed in 2020 with head and neck cancer after two rounds of radiation two rounds of toxic chemo I also have a problem with eating and swallowing constantly choking because the radiation could damage to the flap that covers your airway so food doesn't enter it and no longer is doing it was supposed to do for me I choke on things as simple as soup. The radiation also killed my lymph nodes so they have me on medications to control my thyroids it has been a nightmare a nightmare that I've had to live in the back of a truck for because with everything going on I lost everything and behave homeless at 58 years old pain into the system my entire life I was turned away by the system and left or die in my vehicle believe me when I tell you You're not alone we're out here with you I have no teeth but left I can't pronounce words I used to be able to say no problem My memory is going to hell but you have to stand strong you have to show it show it you can win you are stronger than anything that wants to take you down.

No financial assistance from anybody in my case at least always giving excuses and reasons why they couldn't help me instead of reasons why they could help me. I went to social services for help they gave me an EBT card with $23 a month on it that was the extent of their help

Guys sorry to hear

If you talk with the hospital, they should have a payment plan that can be set up. With no interest. Good luck -

So I would like to ask the group if this is common, although eating is pretty much out of the question I do keep trying to do what I can I have been trying blending soup and stuff and purchased a vitamix to chop solids into a liquid it does a good job turning a hamburger patty or chicken into liquid adding broth or water, not at all appetizing and as I have said nothing tastes like my mind says it should or ever did but the problem is it is gritty almost like very fine sand and as the slurry goes down it leaves me with the need to cough a lot making it not worth the effort to try and add something to my intake than stomach tube feeding. As for the swallowing my Dr has had me do swallow tests and the results are when I drink - swallow my airway doesn’t seal and some of the content is going into my airway. So they tell me I should swallow then induce a cough to clear the airway so I don’t get pneumonia. Maybe this can help others with this. I would say thank god for the formula feeding but not I am so sick of 6 hrs a day taking in the same tasting crap. On the brighter side I have found a frozen coffee Frapachino goes down well and does taste ok. Now making them for myself so much cheeper.😆

Hang in there Joe

I chose no chemo or radiation, as it was explained the adverse effects, so I said let's call it a day on those, so thankful, like I said I am cancer free, because the chose I made, you would never know at I had cancer. Totally back to normal like nothing ever happened

Hi Nettie, I don’t know where you are from, but did you try getting in touch with the American Cancer Society or the Head and neck Cancer Alliance. They maybe able to direct you or help with financial assistance.

I am beginning to be able to actually taste some stuff but I have to force the first few bites. My tongue goes numb and tingly when I eat or drink. I’ve been living on nutrition shakes because I can just drink them down fast

So sorry James🥲

Duane-If you didn’t have chemo or radiation then did you have surgery? What did you do to remain cancer free?

Many people in this community have shared similar experiences with eating and speech challenges following treatment. These side effects are unfortunately common after radiation and chemotherapy for tongue cancer, and connecting with others who understand can be incredibly valuable. Consider reaching out to a speech therapist or nutritionist who specializes in post-cancer care, as they often have helpful strategies for managing these ongoing challenges.