What to expect during 35 week Chemoradiation

I went through 41 days of this 19 years ago at the age of 49 for Stage IV cancer at the base of the tongue. Some of it may have changed since then but here is my experience. Prior to treatment, they installed a feeding tube and warned me to keep eating or I could lose the ability to swallow. The first week or two was uneventful other than adjusting to being pinned down to a table for half an hour. I counted the pulses to distract myself and relax. They gave me a medication to try and preserve my taste buds, but I could only tolerate it for less than three weeks. I came down with pneumonia go into the third week but continued the treatment. By then I was experiencing burns around my neck.

They gave me morphine to deal with pain, so I was very comfortable until the pain broke through. They had a special salve to help with the burns. Swallowing became very painful, and though my wife kept pushing me to eat, I lost 40 lbs. I found it difficult to do more than 7 Ensures/day. I couldn't say if chemo caused problems as the radiation proved to be distracting enough. The feeding tube remained in place for months afterward while I tried to get back to eating. I lost the ability to taste sugar, making many things, including chocolate, taste bitter. I couldn't go anywhere without a bottle of water as my saliva production had dropped to near nothing. Dry mouth is a difficult thing to deal with, and I would suggest getting a water pic. Gravy will be your friend, and things like cake crumbs and apple skins will become a threat for choking. All of it was over soon enough, but there were lingering effects like my taste coming back slowly and it's not the same. I can eat chocolate today, my saliva has come back somewhat. I now find myself getting cold more easily, and fog brain is a nuisance. I've learned to live with most of the inconveniences and have lived to see my grandchildren.

The one thing they didn't mention was that up to 80% of neck cancer patients will experience erratic blood pressure fluctuations called baroreflex failure. I experienced this years later and am still struggling to get keep it relatively stable. All of these things are inconvenient, but they are better than the alternative. Focus on getting through each day and know that it will come to an end. There is life afterward. Good luck!

Thank you so much for this, it definitely gives me a better prospective.

Hey bebarb,
So sorry of your situation but as many of us on here have pulled through the treatment so can you!
I am closing in on 9 years post treatment from the same cancer as you described. My chemo was different, I received 3 high doses of Cisplatin rather than the way you’re getting.

Follow the instructions from your oncology team to a T and things will be better!

Dental: first step is oral surgeon extracting any questionable teeth 🦷 that are in the radiation ☢️ impact zone. Then 21 days of healing before treatment can begin.

The Mask: get your radiation mask made by radiation team.
Feeding Tube and Port: please don’t refuse these! I seen several people who refused and they went through hell from collapsing veins not to mention the added stress on the nurses trying to inject the IV!
You will need a port to receive your chemo, fluids and other needs.
You will need the feeding tube to ingest your proper nutrition. My throat shut down after the second week and I could barely drink water and couldn’t eat by mouth for nearly a year….you need the tube!

Meds: Hopefully the oncology pharmacist will have a sit down with you and explain how to use your anti-nausea medication; follow the instructions carefully or you may end up in the ER as I did!

This part is lengthy but valuable!…
Classical Conditioning: Pavlovian Theory(Pavlov’s Dog), Little Albert Experiment(Watson and Rayner).
Long stories short (I hope!)
Ivan Pavlov while studying the digestive system of dogs in the late 1800’s discovered classical conditioning.
As the dog salivates at the sight of its food a bell was introduced. Through association and repetition just the sound of the bell would make the dog salivate. It even went further as just the sight of the person that fed the dog, the lab coat etc would cause the dog to salivate.

Then in the early 1900’s Watson and Rayner wanted to see if Pavlov’s discovery with dogs would work on humans.
The Little Albert experiment was born:
They placed Albert in a neutral room and introduced a white rat. Albert had no negative reaction to the rat so numerous repetitions were conducted.
Now when the white rat entered the room they created a loud noise which startled Albert and made him cry.
Numerous repetitions were conducted and through association and repetition, you got it, just the sight of the rat made Albert cry!
This went further as well; the sight of white hair, white scarf etc made Albert cry.

Why are those two studies important to a cancer patient?
Because the same thing can and does happen to many!
We associate the getting sick with the oncology team and TaDa, just like that, they enter the room and we vomit!
Do NOT allow this to happen to you! Don’t associate getting sick with the staff!

Hope this helps and feel free to pm me if needed for anything else as I have many post treatment problems.

Jody

OMG! This is great info and thanks for adding some humor to it as we have to laugh.

I am 72 years old. I just completed this in March- 7 weeks radiation and 6 doxorubicin therapy.
- I was "ok" up to week 3.
- weeks 4 to 7 I hired someone to drive me, Because I was on oxycodone 5mg and tired.
- I was on a total liquid diet, weeks 4 through 10. Kate Farms .
- I couldn't drink enough water so I was hydrated IV one or 2 times a week.
- I hired a dog walker.
- I was in pain all the time, because I didn't want to increase the oxy. I did take oxy plus 2 tylenol.
- I kept a daily log
- the team did blood work weekly and mine was always very good.
- I had to take 6@1000 Tums to keep my calcium up, post op.
- I was tired and took naps
- I lost 15 lbs.

I was afraid of the mesh mask that they make to go over my head. But I made friends with it because I knew I couldn't hold me head straight without it.

I met many women going through radiation. Most breast cancer.

You will be able to do this. You do it one day at a time.

Thank you so much for your input. Was the pain in mouth in throat? Any side effects from the chemo?

You should be on a pain control regimen so if like me I had no pain at all.

They should supply you with a cream too so make sure you keep your neck lotion up!
But never apply the lotion in the morning before you go to radiation, wait till your in the chemo room and lotion up good…you will quickly identify the people that don’t!!!

Jody

Pain was in throat. It would take me an hour to drink a glass of water.
No effects from chemo.
But some hair thinning.

I think every radiation treatment may be different. I was told I would be in pain.

I'm a 56 year old male and went through this last fall. It was a long road, but my life is 95% normal now. I see many people on this forum advocating strongly for a feeding tube. In my case, that was something I wanted to avoid and was able to. Being a younger person that might be a path you'll want to take too...you can always get it if you start out without and decide you need it.

The scariest part of the whole deal is the long wait to start therapy. After that the therapy becomes your job and you just hang on and get through it. The main source of pain will be discomfort swallowing, and if you are like me you'll end up acquiring a taste for protein drinks...they sustained me for months! The pain isn't something yo be scared of though, you'll manage it with the pain killers and it will frustrate you, but it won't be anything you won't get through... I promise.