HPV P16 positive cancer

I’m sorry to hear about your side effects. I find it very interesting that my reaction to liquid is the exact opposite. I can only drink water. I can’t drink anything with flavor. I’m kind of glad to me off sodas but I would love to be able to drink orange gatorade again someday. I have found everyone is different. Some get their flavor profile back. Mine are still wonky after 2.5 years. Milk products are the worst, especially sour cream. Can’t even be in the same room when the container is opened. And I loved sour cream before. My salivary glands came back about 50%. I am not expecting anymore. The doctors told me 2 weeks. Then 2 months. Then 2 years. Now I don’t ask. Good luck in your continued recovery.

I can’t believe I’m just now discovering this support group. Back in 2019 and 2020 I had seen several doctors for feeling like I had something in my throat and an enlarged lymph node under my jaw. The doctors said they didn’t feel it was “enlarged” and couldn’t diagnose, nor wanted to investigate any further. Every time I saw a doctor they did the tongue depressor and never saw anything. I saw a new doctor on August 6, 2020 and told her my symptoms. I thought the feeling in my throat was my uvula and thought I needed it reduced. She referred me to an ENT. I had an appointment on August 11. On August 10 I was on a conference call for work and had a coughing attack. I coughed up bright red blood. I went to the ER and one CT later I was diagnosed with base of tongue cancer with mets to the lymph nodes at all levels on the left side of my neck down to my clavicle. I saw the ENT the next day. He took the tongue depressor and pressed down hard and said he could see it. He reached in with tweezers and tore off a piece for a biopsy. That was fun!! 🙁 He said he was 99.99% positive it would be HPV+ with the P16 marker. A few days later the pathology report confirmed it. 7 rounds of Cysplatin and 35 radiation treatments at 70 gray and I’m “cancer free” 2.5 years later. Although, the radiation caused osteonecrosis of my left jaw bone a few months after treatment, which I was told was extremely rare. I live in Atlanta but went up to Rochester for a second opinion how to treat. I had 2 months of hyperbaric oxygen treatments. After 3 weeks of treatment the dead piece of jaw fell off inside my mouth. This allowed the treatments to really do it’s thing. That was amazing treatment and fantastic staff and medical care. My long term issues are still extreme dry mouth and I developed Burning Mouth Syndrome. I hope no one gets this. It’s so painful, with no cure. Let’s hope some day I wake up and it’s gone. I’m super sensitive to pain medication. It’s the worst of two evils: pain or the unbelievable side effects of pain meds that could potentially help.

I know your post is from 2020. I hope your treatments went well and your recovery has been excellent. Praying for everyone in this group and everyone who experiences cancer, along with the amazing caregivers. I think it’s almost harder on them, especially when they are a fixer.

As everyone notes, the side effects can be horrendous, but they get us all to this same place of being able to tap into this community. It means we're still going.

Wow. Sounds like my trip twenty-two years ago. Doctors couldn't find anything wrong even with the blood, etc. The osteoradionecrosis set in but years later did the damage cause issues which I could not ignore. The good doctors at Mayo replaced my left mandible with a section of fibula and life goes on. So, not so rare the jaw bone dying.
Anyway, the odd things we live with afterward are just our "normal". Sorry to hear that your issue with Burning Mouth has taken such strong hold. Hopefully that will resolve by two years post surgery, or at least becomes ignore-able as in my case with Ice-Pick stabs, Itchy Jaw, Face Slap, to name a few. Good luck and good luck to all who seek help from this thing we call "cancer".

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.

I'm so sorry to hear about your experience with this awful disease. I am currently undergoing chemo and radiation for HPV16 tongue cancer. I was at a point where I wanted to give up on the treatment but my husband would have none of that. You say you have a lot of collateral damage, I wonder if you could tell me what they are. I have quite a few and still have a long way to go in treatment. I am 79 and can't find a real reason to just not give up. I am nauseous all of the time and cannot eat. I've lost 23 lbs. not sure how much more I can lose.

Hello anybody10. I hope and pray you are doing well.

To be blunt the oncologists (both of them) were not transparent and when asked pretreatment of side effects and long term outlook, they remained silent. My second ENT was a bit different, but not to get caught up in a issue he directed me to do a little web searches on "squamous cell carcinoma base of tongue". The first ENT botched my first biopsy (not obtaining a proper sample) almost 8.5 hours on the table. His ego was larger than God, and atrocious bedside manner. He referred me to an associate ENT and this ENT was helpful with finding and scheduling everything. He and his PA was with us every step of the journey.

The collateral damage: Feeding tube was constantly irritated/close to infection (the surface under the PEG tube shield) (5 months). GERD was so bad that I was taking honey to reduce the GERD. So with the GERD they put me on omeprazole 20mg daily. Later while talking to a chiropractor he mentioned that the thick ropy phlegm that I could nebulize in 3% saline reduced glutathione (1/5 teaspoon) one or twice a day. This did the trick, no GERD and cuts the ropy phlegm so now when I cough it breaks up. About in week five I started to have autoimmune issues. I came down with plaque psoriasis and it felt like I was buried in an anthill. Four months after treatment ended I contracted shingles. A week after my last treatment I had second degree burns to the back of my head and neck. My neck became so swollen (as big as my head) I tried to contact both of the Oncologists but they were not to be found. I contacted my ENT and he said get to the ER. Five hours in the ER and every 10 minutes they wanted to do a tracheostomy because they were afraid that I was going to quit breathing. At 4.5 hours into the ER visit, they finally talked to my radiation oncologist and he told them to release me and for me to come in Monday morning so I could be evaluated. Lymphedema (head/neck) the oncologist says that I am the worst case that he has seen in 15 years... At this point he walks out of the room, and the head nurse starts making some calls and getting me to a physical/occupational therapist that deals with lymphedema. In the interim, someone told me to contact a acupuncturist and gave me a name and number. The first visit at the acupuncturist he got right to business, 45 minutes later I was on the street and having some Vietnamese for lunch with my wife. My wife looked up and gasped (I am thinking the worst) then she says your neck is going down. Lots of visits and exercises at PT. Finally insurance approved a lymphatic pump suit for use twice a day for life. Radiation has destroyed my lymph glands on my right side as well as my salivary glands. I stopped drinking/using anything with fluoride. Purified water is my staple something with a pH of 8+ or higher. Have your vitamin D levels checked and keep active. Your taste buds may never come back. You might find that the first bite of something you can taste it, but the fades with each and every bite. Try spicy (not bland) foods. Fried foods will coat your tongue causing many issues from taste and reflux. I now also sleep on a wedge. Checkout the support groups with your Oncology facility and their dietician. There is so much to cover, so if you have questions, ask the group. I have for the most part ended my relationship with the oncologists and now use mostly alternative health choices. We will keep you in our prayers and thoughts.

Hang in there. There were days I begged and pleaded with the doctors to stop the radiation. I have a lot of fillings and the scatter radiation was causing severe burns on the side and underside of my tongue. I wanted to rip out all my teeth. With only being half way through things unfortunately aren’t going to get better before they get worse. Most of us were likely in your place. I BEGGED to at least take a break from treatments. The doctors and nurses were cheerleaders. I had to trust them. I had a PEG tube placed before I started treatments hoping I wouldn’t need it. Well I needed it, but the darn thing caused me nothing but trouble. I couldn’t keep any liquid down. No even small portions. CTs showed things were in place, but as soon as I’d get a few mL in I’d start throwing up. This continued through my whole treatment. Even hospitalized a couple times because my blood counts and potassium and magnesium became a concern. Blood got slightly better, and I begged to go home. I could feel like crap at home. I made it through my chemo and radiation and lost 80 pounds. 195 down to 115. I had to be in grad school at that weight. Since I still couldn’t eat with it without the tube the doc put me on a TPN plan. Total parenteral nutrition provides all your nutrition with any added requirements (vitamins/minerals, etc.) through the same port used for chemo. That was tough. You wore this bag on nutrition attached to a pump that was on for 20 hours per day to start. Then down to 18 hours a few weeks later. And finally 16 hours for several weeks. While I may have gained a pound or two, the blood work looked more stable and I was finally able to eat a few bites of soup and some ice cream.
Taste has come back to a respectable level.
Hang in there. We’ve been where you are. Your type of cancer id very treatable. Some of the highest success rates. It just sucks to go through it. Give yourself 2+ years before I say you can see a change big enough to say there is measurable improvement. Although everyone is different. Let’s get you through your treatments. You can do it. It will suck. You’ll want to quit. But we’re here for you. On your last day of treatments wear a Wonder Woman tshirt and know you beat the beast. Ring that bell, sister! You will have deserved it.

Your story is very interesting. Help me understand the 8.5 hour for a biopsy. My ENT used a tongue depressor and flattened my tongue where he could clearly see the tumor and reached back with tweezers and tore off a piece for a biopsy. He admitted he was surprised how big a piece he got.

We were also not told about long term side effects. The Rad Onc told me two weeks after treatment I would start feeling much better. That was bull! It actually got worse. Much worse. Only 2 months after chemo and radiation I developed a small area of osteoradionecrososis of the left jaw. I jumped on getting a second opinion with the Mayo Clinin and I uprooted my life and moved into a hotel in Rochester for two months to do daily hyperbaric oxygen treatments. I truly believe it made the dead bone fall off and then allowed healthy tissue to grow and prosper. It was amazing. Now what else don’t I know that might occur. Even if it doesn’t happen I’d like to know what could be possible so I can research, look for signs, and look at treatment options so I’m ready at the time. I don’t like surprised when it comes to my health.

Sounds like you are doing well, managing around your new life. Wishing you continued success.

Every day is a struggle with the lymphedema, ropey phlegm and the plaque psoriasis. We keep plugging along and praying for everyone in our life. As for the Cancer it was at the base of the tongue deep in the throat. Not visible without a scope and some incisions. Not accessable from the outside of the neck. If it comes back, I was told that they would have to take my jaw and resection of part of my throat. (Feeding tube for life). Not even going to contemplate life as a monster. I have made peace with my Maker. My wife understands and I love her dearly. The Bible states that God will never give you more than you can take. Chronic pain is is a every day issue, but God has watched over me. Many times throughout my life, I was at the brink of death, and I was spared. I guess that God and Jesus are not finished with my time and that I have some special task to complete?! Praying for all of you and your loved ones. Do good things for all that you meet.