HPV 16 neck journey…

Posted by kent8692 @kent8692, 6 hours ago

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…

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | 5 hours ago

Hello @kent8692 and welcome to Connect Head and Neck. Though it wasn't your choice to join, you will find it is a good spot for answers to your questions and good support from others who have been through this.
This is a very tough treatment and you are accurate in guessing that you will have a hard time seeing the light at the end of the tunnel, but it is there and for each of us it will be a little different.
My SCC was ear, not tonsil but that 7 weeks of radiation and chemo is similar. You get tired, have taste changes, develop mouth sores, and just can feel miserable. Your medical team has solutions to deal with all the side effects that you may experience so make sure to turn to them for answers. Planning ahead for a feeding tube seems smart. I survived without one but lost significant weight. Extra days of IV fluids can be helpful to avoid dehydration and keep mucous thinner when you aren't able to take it in orally.
A relative of mine much younger than you just finished his Proton radiation and chemo in Cincinnati and is surviving with a feeding tube, awaiting signs of healing and improvement. He has had minimal pain but swallowing has been an issue.
You must keep in mind as you are doing this treatment that with hpv your cure rates are very high. That is the current goal, and it helps to have treatment goals and celebrate when you hit them. Cancer can bring about a greater appreciation of life and it pays off to feel gratitude for the little things that you can still enjoy. Stay positive. You are stronger than you know. This isn't fun but it is survivable. I am 14 years from my first surgery at Mayo Clinic and life is good again. You will get there.

kent8692 | @kent8692 | 5 hours ago

Thank you for the kind words, it is appreciated.

lizzyj58 | @lizzyj58 | 5 hours ago

You will get there! Take things one week at a time. Side effects diminish over time. Feeding tube will make it easier for you to get good nutrition. Try to think of this journey as a steep climb , each week you get nearer to the top, going down is easy. Best of luck to you and your wife.

kent8692 | @kent8692 | 4 hours ago

Thank you, I think I’ve read one too many horror stories about all this neck cancer stuff….

It just sucks that although I’m clinically Stage One - I’m gonna get all 3 hits, surgery, radiation, chemo…a series of near misses, bad luck, whatever…

Going to attack week two a little differently than week one, that’s for sure. Maybe not so much time at work;)