HPV 16 neck journey…

Posted by kent8692 @kent8692, 23 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 | 22 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 | 22 hours ago

Thank you for the kind words, it is appreciated.

lizzyj58 | @lizzyj58 | 22 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 | 21 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;)

ceg99 | @ceg99 | 13 hours ago

In reply to @kent8692 "Thank you, I think I’ve read one too many horror stories about all this neck cancer..." + (show)

@kent8692 I’m heading into treatment day 13 on Monday, it does get hard, but the end result is what matters, I have a lot of people that want to keep me around and I’m sure you do too, my pastors told me today that it’s not about me, but what my walk does for others and the same goes for you.

jcl2018 | @jcl2018 | 6 hours ago

Hello. I am "vintage" 2008. Was 48 at the time. SCC right tonsil. Sorry, I don't know the cause, or radiation type. I did have both tonsils removed, 6 chemo's and 33 radiation. My guess is radiation is more targeted vs 2008. In my case I relied on a feeding tube the last 3-4 weeks for calorie intake.

The important message is 2008! While the journey can be tough, keep your focus on the long term/end game. There are many people on this site who are 15+ years post treatment (I'm pretty certain that includes the site mentors). There are no promises, and how you react to treatment will be an individual thing. But, it's entirely doable.

A few personal tips if I may (have you Drs. verify as I was 2008):
* try as best you can to keep your calorie count and hydration up. Taste changes and swallow issues
during treatment make things tough.
* once you finish and are sufficiently healed, ask about swallowing and stretching exercises (neck). Radiation
is the "gift that keeps on giving". Side effects vary, but I think all long-term survivors will tell you they
experience them in some form.
* assuming 6 months, diagnosis to starting to get back to some normalcy, you are dealing with a relatively
small percentage of your life. You can and will make it through!

Best wishes

albion223 | @albion223 | 2 hours ago

You will get through this! I’m into my 4th month post radiation (33) & surgery for hpv tongue and lymph node cancer. Radiation was a challenge so go slow and take it one day at a time…you’ll get tired, things taste “funny” but it’s temporary.
Please please do exercises for swallowing and neck muscles.. did them religiously 2X/day during radiation and it certainly helped with long term recovery. Posted this before but Google “Stanford University speech and language therapy cancer treatment head and neck” for specifics.
Lost about 20lbs, for short term weight management I used to drink a smoothie with premium ice cream for the calories (it worked). Sleep may become an issue but it will get better with time.
Finally try to keep a positive attitude…it’s not easy but imperative for your recovery. I didn’t realize how mentally challenging going through cancer treatment was (still can be), for patients and caregivers alike. For me I ended up doing counseling sessions with a therapist who was able to help me sort through all the issues and feelings that arise from dealing with cancer.
Today I can say that my experience has made me a better person who appreciates his life, his family and the gifts we all have been given with more gratitude than I ever thought possible. It’s a long journey but you’re not alone! 🙏🙏🙏

hopeblos | @hopeblos | 2 hours ago

Hello. My husband started his chemo radiation for HPV positive SCC, T4N0M0 tongue cancer a year ago and completed 6 weeks of treatment. He recently celebrated his 76th birthday and we attended my granddaughter’s wedding.

This group has been so supportive and insightful and we would have never made it without the incredibly caring and expert teams from the James Cancer Center! My husband had a feeding tube placed prior to the start of his treatment and we quickly adapted to using it to maintain his nutrition and calorie intake. It became impossible for him to eat and without it, he would have been harder for him to recover and rehabilitate. Everyone’s journey through treatment and recovery is different. Some days will be better than others. Keep moving forward and marking those treatment milestones off your calendar. You will get there!