Stories of Success and treatments or activities that worked

I'll chime in for what its worth.
Now 6 months out of chemoradiation treatment, no surgery , for HPV P16+ tonsil cancer with 1 lymph node and feel as though I've come out of it mostly unscathed in comparison to some others that have been through treatments for a similar cancer diagnosis, T2N1M0 was mine.
Was probably closer to T3 by the time treatments actually started as 3 mos. elapsed between diagnosis and start of treatment.
Long story there but got handed off from the VA to the public sector..
It may sound gross but the tumor was midway across and down my throat quite a bit.
Was getting very anxious from the long wait as the tumor was growing fast.
My extensive research into this particular cancer and the many many trials for it led me to believe
that the full treatment of 7 chemo and 35 radiation sessions was no longer relevant in todays world for my case in particular. And 7/35 was the oncologist's plan for me.
I let my oncoligists know I was aware of these trials and didn't want one more treatments than absolutely necessary.
That and was also aware of the rather new NavDx blood test which I wanted to make use of in the event treatments became too difficult as I wouldn't be going the feeding tube route.
So , after 3 chemo cesplatin days and 24 (48gy) radiation sessions my goose was cooked and stopped treatments ,asked for the blood test. The cesplatin really took a toll on me.
After a week out of treatments took the NavDx blood test, waited a couple weeks , called and found out the test came back negative for cancer.
I am grateful for the treatments and care I received.
However, had I not took a stand my story would probably be like so many others who had the standard of care 7/35 treatments.
Not sure about chemo but after 25 radiation (50gy) the damage adds up quick from my research, especially for folks 65 or older.
I no longer need a bottle of water by my side or lozenges in my pocket, saliva is flowing again, most everything tastes normal and swallowing is effortless. Have some cognitive things going on, short attention span, word searching , mood swings .
Can't gain any weight back and my jaw aches when I yawn but overall
not too bad for only 6 mos. out. Did keep active throughout the treatments except for a week or so during the worst of it.
Trials going on today showing if caught early only 1/2 the treatments are needed to cure this particular cancer.
Like I said in the beginning, for what its worth.
Best to you simplygrand and others embarking on this journey.

As a patient one year out and still suffering with all the nasty side effects , demand they put in place a comprehensive plan for comfort of life modality to help you handle the said side effects.
The medical industry is short on helping patients live through the side effects .

@woodsy1
Thanks, Woodsy1, Interesting perspective and I have researched things myself in great detail. I'm like you HPVP 16 +, T2N1M0. I did have NavDx before treatment started and of course it was positive. It was described as an opportunity to keep an eye on things going forward after treatment to make sure it hasn't returned. It was never positioned as a mid-treatment option to ease up on radiation or chemo.
I have not been given much opportunity to influence how many radiation treatments ...and they're proposing the standard 7-week course. The one opportunity that I have to limit the cisplatin will be because I'm already hard of hearing, they agreed that after four treatments they would reassess my hearing loss and perhaps cut it off at that point.
Two questions: one: did they give you anything for pain? I ask that because I want to try to keep the swallowing exercises going throughout. Second: Did you also do a swallowing exercise regimen?
Finally, I would say that every time I've raised a deescalated treatment plan they've come back and said that the complications of having to go back in a second time if the cancer reappears are very risky. So that is their rationale I guess, because their job is to kill cancer cells and not have you come back a second time.

@ernierogersquamus123
Hi Ernie Thanks for your perspective. Not starting treatment till this coming Monday but relative to your comments there was nothing ever mentioned about a comprehensive plan for avoiding or mitigating side effects. The mention of side effects only came up in a kind of in a legal way they had me sign off a sheet of paper with various side effects circled that I might experience indicating that I acknowledge that this might be coming in my future. Kind of sad if you ask me. It does make me wonder if quality of life aspect to all this is ignored or minimized due to the fact that it's not covered by insurance plans such as Medicare. It's a question I'm going to ask at my first session to find out if those programs are sitting there but not available because of insurance limitations.

@simplygrand
Yes beginning week 4 of treatments asked for and got pain meds.
Throat and mouth was raw , swallowing became difficult, thrush was
taking hold, Used oxycodone for the following 2 mos. as needed. That was a blessing as far as easing pain and restful sleep too.
And did swallowing exercises prior to and during treatments.

@woodsy1

Yes, I started swallowing exercises a week ago. No interest in a feeding tube! (i Hope) I'm going to try to get pain meds early to allow me to keep up the exercises which I assume get harder by the week. Thanks for responding.

My husband had HPV Positive throat cancer that was diagnosed in Dec of 2023. He went for treatment at Mayo in first quarter 2024. He had the treatment you are describing
6 chemo/35 proton radiation. Are you getting proton radiation? It is more targeted and better suited for the throat area. His tumor was also in his tonsil area and had been growing for well over a year before diagnosed. He is doing very well despite some side effects that have developed. He did not need a feeding tube. Pain meds were needed during treatment. If you are going to Mayo you are in fantastic hands.
There is more to his story and I will save details unless you want them but hang in there! And also drink your high calorie boost as much as you can if they recommend it once you start treatment to avoid feeding tube. Also we did use ice packs on feet and hands during chemo to avoid side effects in those areas. Read up on that - just google it and buy them on Amazon

Best of luck! Stay positive and get counseling for your fears which Mayo also makes available. Sending a hug

Also , pick up a large bottle of Miralax if you haven't already.
The chemo will dry you out and constipation can become a serious issue.
I found out the hard way.
There seems to be a lot that goes unsaid due to the sheer volume of patients at some cancer treatment centers. I was astonished by the number of people coming and going on a daily basis.
My Rad oncologist said 35 patients a day was his limit.
After week four I was going to quit treatments for good due to throat pain and swallowing difficulties, thrush had set in pretty bad. The mouth and throat dryness from radiation
brings that on .
Rad oncologist offered a week off to recover a bit. Suggested I do treatments for 1 more week and get to 50gy before quitting.
So went back but could only do 4 more treatments.
Oatmeal became a favorite food , soft but some texture still. Any dairy products became vile. Breads too, even my homemade sourdough.
Most all food was tasteless for weeks on end so you will have to experiment to find foods that are tolerable.
Its good you are letting your oncologists know what you know about your research even if they discount it. . It might give you some wiggle room on treatments.
After all, in the end , your body, your call.
Mine were surprised when I brought up Grade 3 toxicity which I didn't want to experience.

@woodsy1 My husband was lucky to get in to a clinical condition trial,he had tonsil. Cancer, this was removed, but 1 lymph node was affected. He had 4 cisplatin infusions and 15 radiation treatments. So far so good!

@woodsy1
Thanks for the reply. It sounds like we’re birds of a feather. I also am a sourdough baker on a regular basis and my oncologist told me I was not going to like crust anymore. So she’s probably right on the mark. I did get a stool softener in advance and I’m hoping that’s enough.

Interestingly, the dental oncologist has a protocol of mouth tinse every hour on the hour while you’re awake. It’s the usual salt and baking soda solution but what surprised me was the frequency that he’s recommending. I’ll follow it.