Connect
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…
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
@kent8692
Sure Kent, my name is Charles.
I live in Hawaii, I stumbled across this site back in late Feb, early March when I first got diagnosed. I was researching things with the idea of going to the mainland because the cancer centers here don't have Proton therapy systems, just IMRT. I was concerned about the side effects and it appeared that Proton did offer some advantages over IMRT but ultimately my care will rely heavily on my wife and I didn't want to take her away from family and friends for a month or so.
My appetite is still good, and my radiation doc says that in my case, a feeding tube will be highly unlikely. I hope he's right.
Let's keep in touch, get each other through this together.
Best Wishes
Charles
Hello Kent . First off this a very winnable battle. In particular with HPV +16. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good especially with a negative NavDX already! I was diagnosed with Stage 3 HPV 16+cancer of Base of tongue and Neck March 2023.
If this is any help here is my story....I am 57. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . NO Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Now the good news... As far as today 2.5 years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two years. So far no evidence of cancer remains. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You WILL make it and things in a year will be looking up. Some things may not taste the same, you may have some slight neck or throat discomfort but you will be alive. You got this!
I’m 73 and went through this two years ago. What helped my weight more than anything was to freeE high calorie Boost and eat it like soft serve ice cream. I was determined to not look sick so my job was to eat 6 times a day. Small meals with good protein. I was exhausted at the end of the radiation period and my mouth was raw. Lidocaine magic mouthwash (Rx) will help numb your mouth. My taste buds have changed but I am slowly gaining a little of the weight back.
-
Like -
Helpful -
Hug
1 Reaction@toleolu
I had exactly same diagnosis and treatment and had just turned 69. Yes, the first few weeks After treatment are the hardest, but totally doable. It’s really just mind numbing fatigue with dry mouth, food that either tastes like nothing or tastes bad, but don’t fret as you won’t have any appetite anyway! Eating can actually become a chore but it too will improve. You will handle simple foods best, like peanut butter. Keep your humor and drink lots of Boost High Calorie (vanilla is best) Try about 3-4 a day and potentially avoid feeding tube (I did). Don’t worry about things and get the rest you need! For exercise I simply walked to mailbox ( only about 100’) several times a day. Strength and stamina will return, but it’s a marathon not a sprint. Mayo suggested a regimen of ginseng, but only products from Wisconsin as it’s pure.
Biotene or Act are both good dry mouth products. Sleeping with a mouth guard (upper only) has helped generate more saliva while sleeping and seems to avoid need for lozenges! Dry mouth probably 90% good at 2 years out! You got this! Just like eating an elephant, one bite at a time!!
-
Like -
Helpful -
Hug
2 Reactions@bluechip33
Thanks. Glad to hear your recovery is going well.
Charles
@toleolu
Charles,
I’m so glad people who have experienced this have this site to help others! It provided me comfort and confidence throughout the ordeal! Oh, ditto on some of the others mentioning “magic mouthwash “, it was a Godsend for the sore throat. Ps- Mayo introduced me to “music therapy “ and a good pair of headphones and Southwestern Native American pipe music can with deep breathing is a great stress killer!! We are pulling for you!
Chip