Hello nmstauffer8,
My name is Loli, and I am a cancer survivor since 2013. Mouth cancer in my cheek.
When I was diagnosed, my first visit was to church to give thanks for, at that time, 62 years of healthy life. From there, I went to Staples and bought a ring book with dividers. Then, I went home and started preparing to do my research. First divider, Doctors; second medications, third treatments, fourth questions and answers; and so on and so forth. I kind of made it into a project of life, and I was ready to have all the information in one place. When going to doctors, always go with someone else who will be in charge of writing all the answers to the questions that you will have prepared before your appointment. Research all the possible treatments, the best doctors.
Where is your fiancé's cancer?

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.