Your tips for recovery after 35 radiation treatments for tonsil cancer

I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this day. I also slept with a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help with sleep. Since then, I believe there are other additional avenues like sprays to help with that.

I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

Lastly, back in 2008 I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most are all synthetic and don’t have the same benefits. It definitely took some of the edge off for me. I would use MANUKA honey (it’s from New Zealand) which you can find on Amazon that scores at least UMF 15+ and MGO rating of 500+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey. I use UMF 18+ and 700+ even now for many health benefits it offers and my most recent cancer treatments I received. In addition, I heard very good things about Red Light therapy, which uses infrared light from a wand in the throat has worked well for many.

Hope this helps and you will get better. Good luck everyone on the journey.

@roblem

I appreciate your comments I use Biotene every night along with the humidifier. This is just such a difficult and slow process it is difficult to be positive every day. I have good days and bad right now. I have to stifle my yawns since it feels like my mouth is ripping in half. I am 22 days past my last treatment but have shown some improvement the last couple days but still frustratedly slow healing. I have been able to eat vegetable beef soup at night and working on my calories and protein intake daily.

@roblem @dragonfire
I am a fan of Biotene Products. I have used spray, gel, mouthwash (combo). Maybe ask your dietician to prescribe you Bene-protein powder. I use a scoop a day and administer in my G-tube. Humidifier & Xylimelts works wonders too. Wishing you well.

@zenren14
Bottled water was my answer. I never drank so much water, or milk for that matter, as I do now.
I’m little over 2.5 years from radiation treatments and things are still getting better.

@jeffvalvassori
I like to drink cold purified water & chocolate milk.
I miss breakfast cereal with milk.
I notice tiny changes in my health everyday.
Things are looking up.
One step at a time.

@scottmcf1431 how long out are you from your last treatment? I am 18 months and still have eating issues as well as thick mucous in the throat.

The last 4 radiation treatment left severe burns on my neck. I used Aquaphor ointment put on heavy. My nurses gave me Vaseline infused bandages that I used to cover the ointment. They were long strips that wrapped around my neck. Then I put a layer of plastic wrap....saran wrap. The I cut wide strips from well worn t shirts...so no fuzz remained. I wrapped these around my neck to hold the previous layers in place. I also used vinegar/water compresses between the aquaphor applications. This sounds more elaborate than it was. It was very comforting. Ask your nurses ahead of time how you will deal with the burns. I kept up the Aquaphor treatments with the bandages for a week or so. Went to just aquaphor and then to CereVe cream which I still use daily now...2 years out. I was worried...but my nurses prepared me and I had all my stuff ready.

I finished 28 proton treatments plus chemo just over three weeks ago. Am just barely getting some semblance of taste back. Was always able to taste sweet to a degree, but everything else has been gone since week two of treatment.

I lost about twenty pounds and nearly had to go the PEG route. Best advice I can offer is keep going with the eggs and try to drink high sugar iced / frozen coffee drinks. Fruit smoothies worked for a while too, until the sores in my throat/ tongue burned from the acidity. Try soft fish too (salmon, sea bass) - it won’t taste like anything but it’s easier to swallow without pain and is healthy protein.

It absolutely sucks… there’s no way around it. But it certainly beats the alternative. Good luck!

@dragonfire I am so sorry you are going through this. It's HELL! And, I am just about 10 months out of treatment and can't even believe how far I've come. It is so hard to be hopeful, but I (and most people on this forum) are living proof that it does get better. You will be able to eat real food. Your taste will come back (maybe not all the way), but you will find things you like. I remember craving loaded nachos! And while the salsa and hot peppers are still a bit more than I can handle, I can eat the chips, the guac, the refried beans, cheese, lettuce... It's heaven. I posted early on about palliative care doctors. If you have access, please let them know your struggles with dry mouth, pain, constipation. Your quality of life matters, and these docs can really help you. Peace be with you.

@jkhagen1

I appreciate your response so much. Yes, trying to be hopeful for an impatient person like myself is very difficult. I have moved forward with trying different food other than chunky soup. I actually was a able to eat a donut with limited taste. I have found hamburger in gravy I can eat and swallow. I tried just a taste of my wife's green chili and that was a no go just too spicy right now. My goal from my AI research indicates that eating turkey by thanksgiving should be possible since that will be 7 weeks since treatment so that is my new goal. This whole living nightmare has delayed my retirement plans. I was going to retire the first of the year but going to delay. My Oncologist wants me to inform him of my grand plans for my future at my next appointment on Dec 1. I don't know how to be glowing with all that has happened and this very slow recovery. The pain, emotional highs and lows, the cost has been all consuming. I have talked with my social worker who believes I have made progress but it is still very difficult. This forum has permitted me to reach out to others that went through this same HELL.