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Squamous cell carcinoma

Hi, I'm Lisa Marie

I am in remission. It’s been 3 1/2 months from last radiation treatment.
I still can’t taste, and a lot of congestion, still feel awkward
Anybody else in this boat?

  • Post #1
  • Tue Nov 13, 2018
You don't fight cancer; you just weather it. - Anya Miller

Some background first: diagnosed late 2016 throat cancer, followed by surgery, chemo and radiation. 56 years old. Later this morning, I’m going out to run 6 miles. Things can and WILL get better for you.

Without knowing your history of cancer and treatment I can only tell you about my experience but it sounds like it somewhat mirrors yours.

During and immediately after radiation therapy, my mouth and throat were ulcerated beyond belief. It took time, more time than I wanted, to get to a place where eating wasn’t an exercise in pain and willpower.

It was longer than that before it became pleasurable, but it did. Recovery will be measured in months if not years. I had a lot of damage to my jaw with resulting scar tissue that prevented me from opening my mouth very wide (think Popeye on the old cartoons). However, over the last year and a half, I’ve continued to stretch the area and have nearly regained full range of motion.

Taste came back VERY slowly over a long period of time. It took some months for the mucositis to subside and I still have persistent dry mouth as part of my saliva glands were destroyed. However, I can eat anything I want. I would say that some foods that are delicately sweet are bland, spicy hot foods are REALLY hot and spicy and some bitter foods are not as bitter as I remember them being.

Over the first year or so after cessation of radiation therapy my taste buds and my mouth and throat in general continued to change. It is an ongoing process.

Be guided by your doctor, but I’d suggest continued trial with whatever foods you can eat.
Good luck and keep going,
Drew Boswell

  • Post #2
  • Mon Nov 19, 2018
Hi, I'm Dave

Background, 61yo w male, lump on left side of neck for at least 10 years. It moved around without pain. It didn’t bother me at all. My PCP nagged me to have it checked. I was diagnosed with HNC 8/2018. The cancer was found in my tonsil and moved to the lymp classifying it as stage 3.
I was given 33 treatments of proton therapy. I also received Erbitux 11 treatments.
A PEG was implanted but had to be removed ( long story).
This is my first week w/o any treatments.
I can not taste sugar or salt. My current best tasting foods are Brussel sprouts and spinach. I’ve had to try many different foods to find what is tolerable to my taste. Chinese buffet was the best idea to try different foods. I’m going to try Golden Coral buffet next. I still need to regain 30 plus pounds that’s A lot of brussel sprouts. Brussel sprouts also help to keep me regular to counter the effects of pain meds. I’ve also found seafood to have a good taste, crab legs, scallops and shrimp.
I am weak when doing regular activities. I exercise when I can making a point not to over do it.
Although very painfull when eating or not, not having a feeding tube has made me exercise my oral muscles. I should have less therapy if any at all.
I have a follow up appointment the 11th of January 2019. Hopefully I will be returning to work in February.

  • Post #3
  • Thu Jan 3, 2019
You don't fight cancer; you just weather it. - Anya Miller

Hi Dave,

If you’re just now finishing treatment and are actually eating, you’re doing way better than I ever did. It probably doesn’t feel like it, but congratulations! Your buffet strategy is brilliant.

Good luck with your follow ups. It sounds like you’re pushing hard and that’s really impressive.

Drew Boswell

  • Post #4
  • Mon Jan 7, 2019
Hi, I'm ROBIN M.

I have a question I am just starting my treatments for squamous cell carcinoma my cancer is in the root of the tongue. I have started the erbitux and have built a big rash and it is itchy. I am going to dermatology doc today but wandering if you all have anything that helped re leave Ethel itchy?.

  • Post #5
  • Tue Jan 8, 2019
Hi, I'm Tomvb

Hi all, i am new here. i have squamous cell in my soft palate and start treatment next week this is ALL new to me. I haven’t ever even had to think about white blood count ever. I am 58. this is the HPV related oral cancer. Of course I am nervous but it is really nice to read about success like Dave’s Can you update us any of the above?

  • Post #6
  • Mon May 13, 2019
Moderation in all things...including moderation.

Hi Tomvb,

If you’ve read the posts above this one, you’ll see a reply from me from November of 2018. It’s currently May 2019 and I continue in remission. I’m just a year younger than you and was diagnosed with the same cancer in 2016, HPV related squamous cell carcinoma located in my right-hand tonsil.

While the treatment (surgery, chemo, radiation) was the hardest thing I’ve ever done physically, mentally or emotionally, treatment can and does work. I’ve had a PET scan last month which came back clean, so that’s two years and counting.

There ARE changes physically and I think my stamina isn’t what it used to be, but two weeks ago I completed a 76 mile hike of the Foothills Trail in South and North Carolina in 5 days. I say that not to brag, but to reassure you that if you stick with treatment and keep trying to get those calories in, your body will respond.

You wrote that “it is really nice to read about success…” It’s somewhat self-serving to mention it here, but if you want to read about my cancer journey, ups and downs both, I wrote a book about it called “Climbing the Cancer Mountain.” If you want details, click on my profile, or if you have questions about what my treatment was like you can email me privately at the address I’ll put in below. Just replace the words “dot” and “at” with the proper symbols. I write it that way to throw off automated address scrapers.

Drew Boswell

drew dot boswell at yahoo dot com

  • Post #7
  • Sun May 19, 2019

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