What to expect during Chemoradiation?

Posted by bebarb10 @bebarb10, Jul 25 9:36am

I am a 45 year old female and just diagnosed with Stage 4a non-surgical throat, tongue cancer w/lymph node involvement. I will be staring radiation 5 days a week and Chemo 1 time a week for 7 weeks. My doctor said it will be the hardest thing I ever do, but what does that mean exactly? Looking for insight on what to expect.

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@jg99t9

Okay, it is going to be rough. The radiation treatment was hard especially hard for me. The first two weeks will be okay, but then it will start to damage the lining in your mouth and throat. You are younger, so maybe you can get away without using a feeding tube, but I couldn't even drink protein shakes. I could barely drink water. So if you come to that point it's okay to get the feeding tube. It will keep you nourished so you can heal better. I had extreme pain mostly late at night when I was trying to sleep. You can use pain killers. I tried Tylenol and oxycodone, but they didn't work too good for me. If that is the case for you, try liquid morphine which helped me. The pain for me continued for about 3 months after treatment. After that it was just the irritation of sores in the mouth and extreme dry mouth and overbuild up of mucus in my sinuses and throat. I am 9 months past now and I don't have anymore extreme pain, just minor discomfort. I can eat soups, mashed potatoes, ice cream, pasta with light sauces, things like that. My ENT most people start to feel better 1 year after treatment and then go back to normal or almost normal two years post treatment. Everyone is a little different. You're young so you should have a good outcome and get through it relatively unscathed. Just hang in there. There is a light at the end of the tunnel.

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So good to know, people really don't talk about the pain. Thanks

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@jkhagen1

@bebarb10
I am so sorry you are going through this. Yes, it is hard! I am just about 4 months post chemoradiation and 1 month cancer free. HPV SCC base of tongue/tonsil. You'll learn the shorthand soon, but we all have done our time with daily radiation and weekly cisplatin. My experience is best described in thirds- 1/3 treatment for 6-7 weeks; the next 1/3 healing from the treatment; and the last 1/3 putting back the pieces of life- it will never be the same and that's okay.
What got me throught it:
First Third:
Palliative Care (see my earlier posts) though I didn't have a lot of pain, they did help SO much with figuring out the right medication for me.
This forum (for the details of what to expect- and answers to most of the questions about what my body was doing)
Second Third: Palliative Care was essential and helped with fatique and skin problems. I lost way too much weight in weeks 4-7. My care team recommended a G-tube post radiation. I really struggled with hydration and nutrition and I'm not quite sure what the best way forward would have been. I had a really hard time with with G-tube causing pain from granulation tissue and nausea from the formula- Kate Farms. After a few weeks and several trips to see a nurse to care for granulation tissue, I insisted they remove the tube. I lost 30 lbs (about 1/3 of my body weight).
Third Third: I am now cancer free and skinny as a rail! Like many folx on this forum, I have a dietician, and a speech pathologist helping with swallowing. I'm really amazed at how much my swallowing and taste have improved. This part of the journey seems to be the hardest. I am depressed (and take anti-depressants). My mouth seems fine for a couple of weeks and then gets raw and sore. Every 2-3 weeks I crash with a low grade fever, body aches and fatigue. Then I have an amazing burst of energy and feel great for a couple of weeks.
I hope you find comfort in all your are reading. Everyone's journey is different. I HATED hearing that in the first 2/3s of the journey, but now I understand. Peace be with you and I will pray for your healing.

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Thank you so much! Really helps

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@marksalzwedel

Also...it might be a hassle depending where you live and on your insurance company, but I'd highly encourage you to try to get proton rather than photon radiation, if it is possible for you! There are still side effects, but I believe they are far less than the traditional photon radiation

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I will definitely ask thanks for suggestion

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@56tburd

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!

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This is great information. This is the I want to hear so I can better prepare. Thanks

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In March 2025, I completed a similar chemo radiation treatment, cisplatin once every week for seven weeks and radiation five days a week for seven weeks, a total of 35 treatments. Last week, I had a PET scan, which was clean, with no findings of squamous cell carcinoma of the oropharynx, in addition to “No” level 11 neck lymph node tumors. The treatment is tough; however, I am cancer-free. My health is improving, and I’m very thankful.

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Hi Bebarb10,
Sixty four year old male. I completed 35 radiation/6 rounds chemo (cisplatin) for tonsil cancer last June. I'm about 90% recovered and enjoying life. My summary: radiation was mostly tolerable in the beginning but got worse around week five to the end. Neck was burned last few weeks but the cream they gave me really did help and it healed up soon after treatment. Otherwise the main side effect as you've by now gathered was the difficulty in swallowing. In my case I couldn't even swallow a drop of water so put me in the 'definitely get a feeding tube' camp. My team almost insisted I have one placed before treatment and I'm so glad they did. It allowed me to maintain my nutritional needs throughout and I only lost a little weight. I've known others who did not have a tube and were forced to stop treatment mid way and then wait until the procedure healed before resuming. My tube was a life saver! I used Kate Farms formula and relied on it four times a day for a total of about five months during and post treatment. I kind of miss it 🙂 (not really) BTW now all I have to show for it is a very small maybe 1/4" scar otherwise it's like I never had it.

The chemo side effects for me varied but the worst was the nauseau although never to the point of vomiting but it was so bad soon after I started that I had no desire to eat. So even before the radiation damaged my ability to swallow, the chemo made me so sick that I could not manage to eat anything. This is when I started using my tube and continued until around September (three months after treatment ended) and had it removed in October.

Oh one last thing, my team also had me see a speech pathologist before, during and after treatment. I never even knew there was such a thing but I soon learned it was extremely important in maintaing your ability to swallow. She gave me exercises to do which I still do daily (maybe for life) but a small price to pay all things considered.
I could go on and I'm happy to share but that's my summary for now. This form was very helpful to me after my diagnosis (thank you to everone) and hopefully it is for you as well. I wish you all the best! Yes it's a difficult journey but it is absolutely tolerable and more importantly there is life... quality life after this is over.

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I had a stage 4 throat cancer about 7 years ago. I had several dozen radiation treatments and 3 large doses of cisplatin. I was unable to swallow anything, even water, for several months. I had to have IV hydration seven days a week. Friends told me I should get a feeding tube but the radiation oncologist discouraged me from doing so. Finally after losing about 40 lbs he relented. When the gastro doc who was going to install the feeding tube saw me, he said, "you should have had this months ago!!" The feeding tube procedure was a walk in in the park, and the removal was a 2-second procedure! Easy Peasy! Why did the radiation oncologist discourage the use of a feeding tube? A mystery until I overheard him on the phone bragging about HOW FEW feeding tubes they had to place! Evidently bragging about their accuracy in aiming the radiation gun! The oncologist was sacrificing a patient to polish his radiation resume! Well the radiation gun also took out much of the hearing in my left ear.
However, I'm still alive. A neurologist to whom I was referred for the neuropathy in my legs took one look at my chart and told me "you shouldn't be alive!!!" My advice is: GET A FEEDING TUBE! IT'S NO BIG DEAL!!

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Mark is very lucky he returned to 95%. Remember that everyone is different and not everyone receives the same dose. As for me I was 54 when I received treatments for stage IV and I was in pretty good physical condition.
My profession was a Deputy Sheriff K-9 handler/trainer and a US Marine Corps veteran so I had been through some tough situations and recovered well but this cancer was much different.
I was left on disability with no chance of returning to work. But I do hope for your sake things will be much better for you than they are for me.
Jody

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Okay, it is going to be rough. The radiation treatment was hard especially hard for me. The first two weeks will be okay, but then it will start to damage the lining in your mouth and throat. You are younger, so maybe you can get away without using a feeding tube, but I couldn't even drink protein shakes. I could barely drink water. So if you come to that point it's okay to get the feeding tube. It will keep you nourished so you can heal better. I had extreme pain mostly late at night when I was trying to sleep. You can use pain killers. I tried Tylenol and oxycodone, but they didn't work too good for me. If that is the case for you, try liquid morphine which helped me. The pain for me continued for about 3 months after treatment. After that it was just the irritation of sores in the mouth and extreme dry mouth and overbuild up of mucus in my sinuses and throat. I am 9 months past now and I don't have anymore extreme pain, just minor discomfort. I can eat soups, mashed potatoes, ice cream, pasta with light sauces, things like that. My ENT most people start to feel better 1 year after treatment and then go back to normal or almost normal two years post treatment. Everyone is a little different. You're young so you should have a good outcome and get through it relatively unscathed. Just hang in there. There is a light at the end of the tunnel.

REPLY

@bebarb10
I am so sorry you are going through this. Yes, it is hard! I am just about 4 months post chemoradiation and 1 month cancer free. HPV SCC base of tongue/tonsil. You'll learn the shorthand soon, but we all have done our time with daily radiation and weekly cisplatin. My experience is best described in thirds- 1/3 treatment for 6-7 weeks; the next 1/3 healing from the treatment; and the last 1/3 putting back the pieces of life- it will never be the same and that's okay.
What got me throught it:
First Third:
Palliative Care (see my earlier posts) though I didn't have a lot of pain, they did help SO much with figuring out the right medication for me.
This forum (for the details of what to expect- and answers to most of the questions about what my body was doing)
Second Third: Palliative Care was essential and helped with fatique and skin problems. I lost way too much weight in weeks 4-7. My care team recommended a G-tube post radiation. I really struggled with hydration and nutrition and I'm not quite sure what the best way forward would have been. I had a really hard time with with G-tube causing pain from granulation tissue and nausea from the formula- Kate Farms. After a few weeks and several trips to see a nurse to care for granulation tissue, I insisted they remove the tube. I lost 30 lbs (about 1/3 of my body weight).
Third Third: I am now cancer free and skinny as a rail! Like many folx on this forum, I have a dietician, and a speech pathologist helping with swallowing. I'm really amazed at how much my swallowing and taste have improved. This part of the journey seems to be the hardest. I am depressed (and take anti-depressants). My mouth seems fine for a couple of weeks and then gets raw and sore. Every 2-3 weeks I crash with a low grade fever, body aches and fatigue. Then I have an amazing burst of energy and feel great for a couple of weeks.
I hope you find comfort in all your are reading. Everyone's journey is different. I HATED hearing that in the first 2/3s of the journey, but now I understand. Peace be with you and I will pray for your healing.

REPLY
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