I can only tell you what my bf has experienced and what his symptoms have been with the treatments he has taken and where he now with current treatments, since his diagnosis started a year ago in March 2020.
He was in the hospital for something unrelated to cancer. However, when he was in hospital he said is the left side of my neck larger, it feels funny. I told him a little bit.
But that lil but went away before we left hospital.
Then it showed up again. Luckily, he has many doctor friends. His doctor friend told him he needs to call his family doctor and get into hospital for a mri scan if his neck and throat. And he needs to see and ENT doc right away.
Well, there was cancer in the back of his throat ( that’s was the mother ship) and it metatisized to the left side of his neck. The biopsy was performed and it was cancer.
He got into Mayo right away. The preformed surgery, extracted the tumor from back of throat, opened up both sides of his neck and took out the lymph nodes. Right side was clear( they still had removed nodes). He took 6 weeks of radiation and 6 weeks of cisplatin. Lost all his taste buds and saliva ( since has not come back). He has to put lotion on his neck 3 times a day so skin won’t turn to leather or get stiff and has a special fluoride everyday so he can try to prevent from loosing his teeth(all from the proton radiation). Yes, he had shortness of breath and very tired.
He did not opt for feeding tube, and boy oh boy was it difficult for him to swallow. However, he’s a fighter and he ate cause he knew he had too. I made everything as soupy and puréed the best I could. I knew he needed the calories.
So, after those treatments he was told he had a 98% cure rate. Then 3 months later they performed a pet scan. On the end of his wind pipe on a single lymph node ever so lightly lit up.
So, they did radiation and started him on Keytruda (immune chemo therapy drug) in September 2020.
He’s been on Keytruda fir just about a year. He was told they will take him off Keytruda after 2 years.
His side effects are really bad. He has them all except heart pain. He’s has shortness of breath, balance is so bad he cannot have a conversation unless he’s sitting(he has to concentrate on standing). Headaches, stomach hurts, nausea at times, tired, huge anxiety, depression, frustration, diarrhea for months, huge weight loss( hes 69 looked like Superman before 240lbs 34” waist, worked out, ate the perfect diet). He’s now under 190 lbs.
He was told if he gets off of Keytruda the cancer will come right back.
So this is what we have done.
I have read a lot of things and we are adding other supplements that may help him feel a lil better for sure maybe?
He has an appt with integrated doc and I’m hoping they can get something that will give him a boost nutrient wise to help him.
What bothers him the most, is he was so physically fit, he no longer can do those things he did before. We have a second home in the mtns, that home is a lot of work. We have tall pines that are 175ft tall that we always took down ourselves. He can no longer do this. I don’t trust him with a chainsaw when his balance is so bad.
Now in order for you to understand the type of cancer he has is why he’s in this situation today. And hopefully this will help someone else that you know.
When he was 26 years old, he was well to do. And in his era partied and had many sexual partners. At the age he got genital warts. Which he went to the doc and got cured. Well, that is a virus. It payed dormant in his body for 42 years. Then it pop it’s ugly face in March 2020.
If he would have known this, and on his late 50’s and early 60’s, all this could have been prevented. If he would have had his throat scoped every 3-6 months and pet scans this would have been caught before it went to his neck. And he would not be where he is today.
So anytime that had has genital warts had that virus. There is a vaccine. But if you’d over 40, your out of luck. So you need to be scoped etc.
This is his story and where’s he’s at right now. He has had pets and where just recently there was a flicker at the side of his left neck again but not attached to a lymph node.
They ruled it out as cancer, however that’s how keytruda works, it blocks the cancer. So it will show dark when he had hus next pets scan in October. This happened with his lung awhile back.
What I was told the lymph node at the end of his windpipe never dissolved, but is dark, also told back them that it he goes of Keytruda that it could come back to life.
So end if 2 years there is nothing more they can offer.
So, he may go in remission or not? We don’t know. He’s on God’s watch, and there’s nothing wrong with that either.
I personally could never endured what I have watch him go through. He is the strongest and bravest person I know. And I’m so glad he is part of my life. He’s a fighter so I stand with him to keep fighting.
This is his path to walk it how he chooses, and I’m glad I am able to share this with him.