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If there is an obstruction, he needs to have his throat scoped. And when they go down they need to turn the scope so the can see everything back on the way up. Things get missed.

My bf has neck and head cancer squamous cell carcinoma hpv 16.
He was diagnosed March 2020.
Back down his throat on his tongue and it had traveled to the left side of his neck to 5 lymph’s that ended up clustering together.
He had the tumor extracted from back if his tongue. And both sides of his neck opened and lymph nodes removed.
He did not have a feeding tube and it was very difficult to swallow but he got through it. This way he did not have to learn to swallow and all the other things that can happen with a feeding tube. And yea he lost weight.
After the surgery he had 6 weeks of cisplatin(chemo) and 6 weeks of proton radiation on the left side of his neck. He list all of his salvia and taste buds(nothing has come back as of today. He has to use a very strong prescription fluoride on his teeth forever and he has to put lotion on his neck 3 times a day so it doesn’t get hard and leathery.
When he completed his treatment he was given a 98% cure rate. We were so happy. Then he went for his 3 month petscan.
Not good news, his cancer metastasized to one lymph node at the end of his windpipe(inoperable). He had I believe 6 weeks of radiation on his chest and also started sept 2020 on Keytruda which is a chemo immune therapy treatment. It’s been a year. It’s been tough. Keytruda is the only option they have. Umm, he has all the side effects which make everyday difficult. His voice is different, stomach aches, lose of weight (he’s lost about 50lbs), he’s had diarrhea for 5 months, his balance is really bad( he needs to sit if you want to talk cause he has to concentrate when standing not to fall over). Shortness of breath, back aches, muscle cramps, feet hurt, infections under his nail beds on 2 fingers, melanoma(which runs in his family history, which he see’s dermatologist every 3 months), huge anxiety at times.
He was told he needs to stay in the plan. They will be taking him off of Keytruda sept 2022.
We would like to travel, but he really couldn’t take a long car or plane ride.I think the hardest thing for him, is he can’t do what he used to do. He’s 6’4” was 240lb, 34” waist. Ate the perfect diet, worked out and looked like Superman and he was 67 when he was diagnosed.
He’s has a few times that the petscan lit up with the ground crystal(I believe that’s what they call it).
Because the cluster on his neck leaked onto his blood stream, that how it metastasized to his chest.
He has a huge fight, and he doesn’t give up easily. Snd we are in this to the end. Not sure what will happen in a year.
All o lnow is he was told if he goes off Keytruda now, his cancer will take over.
So he has head and neck squamous cell carcinoma hpv16. He got when he was 26 years old from genital warts. That virus laid dormant for 42 years.
It’s very aggressive, so get in right away. If caught quicker he would have been a different ballgame.
Putting in my prayers, stay strong, you got this.

@lori58, it sounds like your boyfriend is a fighter and so are you. As you said "He has a huge fight, and he doesn’t give up easily. And we are in this to the end." He's lucky to have you by his side for this rough ride.

I just want you to know it's okay to have pity days and to vent here too. As you support him, the community here offers its support to you. How are you doing today?

I am good. He is good too.

I was a very good day. And he had a long nap, which helped.

Hi Adrianne,
My bf has head and neck squamous cell carcinoma hpv 16. He got genital warts when he was 26 yrs old. The virus laid dormant in his body for 42yrs.
He also has intractable hiccups since 2009. And now they can last up to 13 hours a day. And there is no cure for intractable hiccups. However he does take XYrems every night which probably saved his life from having a heart attack. So it’s a completely different issue. The reason I am mentioning it is because he was scoped every 3 months for Barrett’s esophagus cancer.
The source or mothership of his hpv16 was down is throat on the back of tongue. (You would have thought with all the scopes it would have shown up, but again they were not looking at that).
His cancer was originally diagnosed Feb 24th, 2020.
It metastasized to left side of his neck abd there was a cluster of 5 lymph nodes affect.
He had surgery and they removed the source on back of throat, and opened up both sides of his neck neck and removed lymph nodes. Only his left side was affected.
(Hpv16 squamous cell carcinoma travels for men from back of throat to neck, then lung, then brain. For women it’s cervix, lung, brain).
He had 6 weeks of cisplatin and 6 weeks of proton radiation. He wa given a 98% cure rate.
3 months later he had his pet scan. A very small glimmer showed up on lymph node at end of his windpipe. (This was inoperable ). He does have the PL1.
So, Sept 2020 he have proton radiation on his chest and started Keytruda. (The cancerous lymph node never dissolved with radiation or Keytruda. Which means when he goes off of Keytruda it could possibly show back up as active.
He also has had the glassy stuff show up in his left lung and just recently back up on side of his neck). Which the lung showed it when dark from the Keytruda. The neck was just recently and they will recheck it on next pet scan in October. So I am assuming this is cancer too, and the Keytruda is doing it’s job and blocking the cancer.
He has been on Keytruda for 1 year.
He was told they will take him off Keytruda after 2 years.
He has very single symptom from Keytruda except chest pain. It’s been pretty rough to say the least.
He thought when they said you will be off Keytruda and you’ll be around 2 more years. He thought it meant he would be cured. I don’t think so. This got into his blood as the lymph nodes leaked in that cluster.
And it can show up anywhere.
With the radiation he no longer has saliva or taste buds, very tiny bit of taste once in awhile.
I always have apples cut up, and he eats cantaloupe to help him swallow his food. I make lots gravies and some sort of sauces to help him swallow with no saliva.
Yep, this has completely changed our lives. He’s embarrassed how he looks.he’s very very thin. He’s 69 yrs old, 6’4”, use to weigh 240lbs, 34” waist, ate the perfect diet, worked out and looked like Superman (and I’m not kidding).
Now, he has no balance, cannot stand long or have a conversation because he has to concentrate standing, he drops things, anxiety can get very high, depression, back hurts, feet hurt, stomach doesn’t feel well, tired, you name it he’s got it. We have more than one home. And as everyone knows houses are lots of work. He cannot do what he did before, that’s devastating for him.
However, we had painter come and paint the one house. And working on another one we have up in the mountains. This home we love. It’s all wood on the outside and it’s double the trouble as far as work goes. However we are doing this ourselves. As crappy as he feels, I think it’s good therapy for him. We are in no duper night hurry, as we have time before the snow flies. The weather is wonderful, and I know this helps him feel normal.
I have no idea what his future holds. All I know is those hard days are reality check of how short our time is here. It’s been extremely difficult as so much happened so quickly.
He has his list of things we wanted to do.
I’m just a total realist, I try to remember not to take anything for granted. And most of all I try to keep my patients. There are those challenging days.
Coming up to this house for long weekends has been a blessing.

Hello I’m Melinda I had laryngeal cancer Squamous cell - I’m 1 1/2 years in remission I did 35 radiation treatments with 3 chemo treatments but doing good then scar tissue from radiation is messing up my airway- I have trouble getting my breath mainly with any strenuous activity- my question is can I build up endurance with exercise to help me carry groceries up stairs or is this going to continue to get worse? Also It’s messing with my eyesight- has anyone else had this happen? Any information would be appreciated….

I was diagnosed with sinus cancer extending into hard palate approximately 2 years ago. Surgical removal of sinus, hard palate, jaw and corresponding teeth on the surgical side and 5 weeks of radiation. One year later I had a recurrence in 2 lymph nodes in the neck on the same side as the cancer. This was treated with a modified neck dissection. I am interested in conversations and advice with anyone living with an obturator and/or living with radiation fibrosis( neck and jaw). I have had many weeks of PT through the last several years and continue with my home exercises but neck continues to worsen. I have a Therabite for trismus but am unable to reach a jaw opening greater then 31mm. I am interested in conversations with anyone with an obturator and/or living with radiation fibrosis. It has been suggested I try Botox for neck spasms but I am getting conflicting advise from my care team which includes a prosthodontist, surgical oncologist, radiation oncologist and internist. I am becoming frustrated. Thank you

Update to my thyroid ca story: I had twin babies (boy/girl) and right after they were born, I had two small cancer positive lymph nodes pop up. they were ablated and the procedure was successful. Fast forward 2 years-I had not been scanned during the shutdown/pandemic. Last year I learned I had 10 cancerous lymph nodes in my neck that had spanned beyond the thyroid bed. My cancer is now considered metastatic, meaning it is more favorable to spread to other organs.
I had all of the lymph nodes removed and had a swift recovery thanks to Dr. Di and his team! be vigilant- get your scans every year even if they are clean year after year!
I have been informed, if the lymph nodes are small enough, they will ablate them however mine happened to be mixed sized and since Mayo Clinic did not perform my initial surgery, they thought it may be best to go in and remove all of them and to also look at the site with their expert eyes.
We will keep going, get our scans and support one another 🙂