HPV Tonsil cancer: I'm very nervous about chemo and radiation

To @toleolu: Navigating the Initial Hectic Phase
I know exactly where you are right now. You are in that initial whirlwind where everything comes at you at once. We all go through it, but you will get through it.

My Journey with Pyriform Sinus Cancer
I had a tumor near my vocal cords. Like you, I really wanted Proton Therapy and even drove several hundred miles to a specialist hospital to see if it was an option. Because Proton is so precisely focused, I didn't qualify because my tumor was on both sides.

The Road to Recovery
Recovery takes patience and persistence. It took a full year after my radiation was finished before I could talk and eat normally again.

The Feeding Tube: I resisted it at first, but because I was aspirating into my lungs, I eventually had one surgically implanted for about three months.

Taking Charge: When it fell out one day, I decided—against my doctor's wishes—to keep it out. I was determined to make my throat muscles work again.

Therapy & Healing: I worked closely with a Speech Therapist on throat exercises, which were vital. I also used a Red-Light Therapy Wand, which I believe truly helped my throat heal.

The "Amazing" Breakthrough
During my last swallow study, I remember the doctor watching the X-ray and saying, "That is amazing." My epiglottis had finally started doing its job again, blocking the entryway to my lungs. I credit the Good Lord, prayer, and that red-light wand for that miracle.

My Best Advice for You
Rest deeply: Utilize this time to let your body heal.

The Mental Trick: Try to think of this time as a "vacation." It sounds strange, but tricking your mind can help you handle the stress.

Best wishes to you. You've got this!

@harleytiger

Thanks, I'm stage 2.

My insurance covers proton. My copay is 20% up to my calendar out of pocket limit then everything is covered.

My doctors here say that the side effects from Proton are less than their IMRT but the differences are not significant. I'm still going to have swallowing and taste issues with Proton.

I found a Proton center in Oklahoma, I have family there I can stay with so that makes things a lot more affordable. MD Anderson proved too expensive. I gave them access to my medical records, I should be hearing back from them next week.

I'm also 71 with an enlarged prostate (no cancer) and a family history of Alzheimer's and dementia. Just wondering how much of all of this I want to subject myself to given what I have to look forward to.

Thanks

I think California has 3 Proton machines? The problem is getting your insurance to cover them? I had the Photon machine. If I had it do all over, and if I had insurance to cover it, I'd go with the Proton. That's contrary to my ENT doctor who said it wouldn't make any difference. My problem is that my radiation treatment ruined my salivary gland and damaged my taste buds. My tastes are slowly coming back and I'm about 6 months out. I was just yesterday able to express my damaged salivary gland and it's much smaller now. It wasn't draining and enlarged. Kind of gross, but the expelled the old saliva and the taste was very strange? My gland is almost normal now.
If you have the money and can pay cash for the Proton, go for it. What stage are you? That may help you make a decision? You have nothing to lose. It may work out for the best?

@harleytiger

Did you have Proton or Photon radiation?

I am scheduled to begin Photon radiation for cancer in my left tonsil and lymph node. I live in Hawaii and we don't have Proton here. I'm looking into MD Anderson Houston for Proton Therapy, trying to figure out if the benefits of Proton justify the cost of getting treated in Houston?

One additional comment on increased dosages of IMRT. I had similar diagnosis (tonsil cancer that had spread to multiple lymph nodes on both sides of neck. Initially staged at 4b. HPV P16 confirmation changed stage to 1b. I didn’t meet the NavDx minimum number after 25 treatments, so finished up with all 33 and 69.9 Grays. Also completed 3 Cisplatin and 2 Carboplatin chemotherapy. ( missed 2 due to toxicity). All in all, my mucositis was handled fairly well with “magic mouthwash”, no issues with dysphasia and xerostomia (dry mouth) was an issue but lots of biotene dry mouth wash, Act dry mouth lozenges, sprays, etc. It has improved over first year. Pain was not severe and Mayo Pallative care were on top of the issue! So, unfortunately sometimes the full treatment can’t be avoided but I’m 2years and 9 months out and all is clear and basically back to normal, and I’m not saying that “new normal “ crap, Normal! Stay positive, as he said be your advocate and have faith!

@woodsy1
This is really useful information. I was originally asked to join the de-escalation study only to be pulled later. I offered to cover the cost of NavDx but it still was not offered. It also may have been due to timing but I was mainly interested in data to show the treatment was working. I figured why go through all this only to find out there was no response? I never had the discussion about toxicity or the benefit of reserving some Gy for the future. But I definitely recall a concern for overall treatment and the level (maybe >20) when they work to get you on proton.

Some generic guidelines below for IMRT radiation treatments along with the acute and long term consequences depending on dosage and number of treatments.
Not sure how much Proton therapy differs and that was not available to me.
Having HPV P16 + Head and Neck cancer may require much less chemo and radiation than some cancer treatment centers are willing to admit as I can attest to.
Anyone could have their pos. or neg. cancer status checked during treatment with a blood test for this P16+ offered by Naveris labs its called the NavDx test. Medicare and the VA will cover the costs not sure about other insurers. $1,800 out of pocket
I would want to be tested before going over 50Gy worth of radiation and did get tested at 48 Gy. Test came back negative for cancer. A short pause in treatments of a couple weeks to get tested might be beneficial to possibly prevent further treatments and worsened long term toxicities.
Just my thoughts now that I've been through it.
The NavDx test may not be offered which it wasn't where I was treated but you can let your providers know you are aware of the test , request it and maybe get it worked into the schedule possibly preventing unnecessary treatments and some long term toxicities.

"Overview of IMRT in Head and Neck Cancer"
"Intensity-modulated radiation therapy (IMRT) is a sophisticated technique used to treat head and neck cancers. It allows for precise targeting of tumors while minimizing damage to surrounding healthy tissues.

Toxicity Comparison by Dose Ranges
The toxicity of IMRT can vary significantly based on the radiation dose administered. Below is a comparison of toxicity levels across different dose ranges:

Dose Range (Gy) Common Toxicities Observations
30-40 - Mild to moderate mucositis- Some dysphagia Generally well-tolerated with manageable side effects.
40-50 - Increased mucositis- Higher incidence of dysphagia- Risk of xerostomia More severe side effects; careful monitoring required.
50+ - Severe mucositis- Significant dysphagia- High risk of long-term xerostomia High toxicity levels; may require supportive care and interventions.
Key Considerations
Dose Escalation: Higher doses (above 50 Gy) can lead to increased toxicity, particularly affecting the mucosal lining and swallowing function.
Treatment Planning: IMRT allows for dose escalation while aiming to spare critical structures, but careful planning is essential to avoid excessive toxicity.
Patient Monitoring: Patients receiving higher doses should be closely monitored for acute and late toxicities, ensuring timely interventions.
Understanding these differences in toxicity is crucial for optimizing treatment plans and improving patient outcomes in head and neck cancer management".

I'm glad they help! I'm still using two years out although my dry mouth has definitely improved with time.

@johnbonani xylimelts are a life saver….

@rllampton
I had my surgery and treatment at the Mayo in 2018. The head & neck team is the best. The compassion, care, and expertise are unmatched. You are in good hands. I wish you all the best.
Regards,
Phil