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HPV 16 neck journey…
57 years old, male, typical patient for HPV cancer…
Found lump back in October. Lymph node, left side near jaw. Did all the usual procedures, antibiotics for infection, ultra sound, CT, etc…Biopsy in late December, get the news from my ENT some cells “look suspicious”.
Referred to the James Cancer Hospital at Ohio State. (So lucky it’s literally 20 minutes from house). Fast forward to February, surgery removes a “tiny” (Doc’s words) primary tumor next to left tonsil, achieves clear margins and 23 lymph nodes were removed. 2 nodes very near tumor have cancer, 21 have no cancer, but the big boy lymph node is a problem - shows ENE. Great, radiation and chemo is the standard treatment. Even with negative NavDX test, post surgery. So…started schedule 33 radiation steps and five chemo days this week.
Already noticing side effects, funky taste, loss of a bit of appetite. Feeding tube scheduled for middle of week 3.
I am a bit depressed, worried, all of it.
Wife has been great. Hope I can look back one day and say “remember when?” But seems really far away…
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@hopeblos Thank you for the words of encouragement:)
@jcl2018 Thank you - your words are appreciated.
@albion223 Thank for the good advice and encouraging words - it is appreciated.
Welcome to the group of people who wish they were anywhere else. The good news is there is plenty of hope for you. I'm speaking to you 20 years out from my ordeal. My situation was similar, a small tumor on the base of my tongue was discovered after I noticed a pea sized lump in my neck. Treatment was no picnic, but I've learned to live with most of the inconveniences that developed afterward. There is plenty of information here to help with symptoms you may develop. The one that caught me off guard is baroreflex failure that developed a decade later. I suggest you monitor your BP for any changes. I'm sure they've improved treatment since my time, so I hope you have a speedy recovery and few aftereffects.
Kent,
Trust “us” that have been there and are now able to tell you that you can get through this! That bell is waiting for you! I was 69 and in great condition. I was diagnosed with cancer on left tonsil and lymph nodes on both sides. Too far along for surgery so chemo/radiation (5/33 same as you). Drank lots of High Calorie Boost (530 calories /8 ounces) and was able to bypass feeding tube. Still lost about 27 pounds and was right at threshold. Originally Stage 4, but HPV changed it to Stage 1. Here a virus is actually a good thing as your chances for recovery are greatly increased. I’m 2 years and 9 months out from treatment and while it’s a long road, it’s one many people (including yourself) can make! Mainly, you’re going to be tired, no exhausted as that’s what radiation will do over time. Get those infusions of IV the days after radiation treatments too as it helps greatly!! You’re not alone my compadre, we are all here with you!
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2 Reactions@kent8692
You’re not alone in this…keep the faith and know that a lot of people have traveled down the path you’ve started down.
If I may join the chorus of encouragement as you start your treatments, hope things go as well as they can. I had similar timing and ramp up to diagnosis, a bit different situation: a tonsil tumor and involvement with soft palate and one adjacent lymph node. Initial NAVDx through the roof. Straight into chemo and radiation. I’m three months out and am returning to life as it was, a step at a time. Past the pain, appetite and ability to eat and swallow pretty well restored. Ability to taste has been slow to recover, but there’s enough to make food interesting and optimism for recovery. Taste went away two weeks into treatment, mouth and throat pain followed shortly thereafter. I lived on high calorie Boost, six a day, thinned with coffee (decaf after noon). The thick liquid coated my throat and sustained me, though it was love-hate. I did not need a feeding tube and lost 10-15 pounds. I think recovery has been easier as a result, but I was sure down and out as the cumulative impact of chemo and radiation made themselves felt. My heart soared with a clear follow up NAVDx, looking forward to PET retake in a week or so. Now settled into swallow and neck muscle exercises, feeling pretty good about life. Hang in there.
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1 ReactionMy journey started in January 2017 with nodes removed (41) with 2 being cancerous. Radiation only for 35 sessions and a feeding tube for 7 months. Lost 55 lbs but needed to lose some weight but not that much. My diagnosis was cancer of "an unknown site" but the doctors figured it was under my tongue in the back so they concentrated the radiation to that location. The first 5 weeks of radiation was simple but the last 3 is when the side effects kicked in. I live only and needed help so hospitalized for last 2 weeks. The feeding tube was the best decision I made. I needed the nutrition it provided. The journey has its ups and downs BUT you will make it. Just listen to your medical team they have the knowledge to make you well again. I am 9 years out and I still do 6 month check ups. Also, this website helped me survive the tough times so I suggest you continue to be on the site. God bless you and hang in there.
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1 Reaction@56tburd Thank you for your response - it is appreciated:)