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Getting frustrated with throat pain post radiation

Posted by srm @srm, Nov 26, 2021

Now 5 months post radiation. 33 treatments of targeted radiation plus chemo therapy for my stage 3 Metastatic Squamish Cell Carcinoma back of tongue R/S. A few weeks ago my throat pain was subsiding enough whereas I finally started eating soft foods with some good success. This week the pain increased to where I have had to go back on liquids. The pain is either on the left side, right side or back of throat. Sometimes the entire throat hurts like strep. The pain is always present but is really bad when I swallow something. Seems to be 2 steps forward and a few back. My oncologist claims that the pain will eventually go away but cannot provide any kind of time frame. Has anyone with similar treatment experienced throat pain for an extended period post radiation? If so, how long did it last? I was getting really excited and optimistic for a couple of weeks while eating very saucy soft foods. I was finally making progress and then things just got worse again. Nobody said this was going to be easy but it gets discouraging when I appear to be making progress just to fall back again.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Feb 3 7:17pm
In reply to @kathleenmkastrup "I am 2 weeks past RAI treatment and every day my mouth gets worse. Numbness, new..." + (show)
Profile picture for kathleenmkastrup @kathleenmkastrup

I am 2 weeks past RAI treatment and every day my mouth gets worse. Numbness, new ulcers every day including my lips (Mar-aLago lips), no ability to swallow, can only drink liquids, mouth bleeds every morning when I get up, heavy drooling in my sleep, etc., etc.

If I had ever known how awful, awful, painful and depressing the RAI effects would be, I would not have gone forward with that treatment, asked for something different is that was possible. Or just live with the consequences of the cancer. This is no way to live

If anyone asked me about the RAI treatment, I would definitely advise against it

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@kathleenmkastrup Two weeks post is usually the bottom. Things should slowly begin to improve from this point. I know how awful this all is and at this point you are likely ready to just surrender.
It does get better, slowly at first. The mouth sores make it difficult to unbearable at times. Courage.

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tbveblen | @tbveblen | Feb 4 5:12pm
In reply to @kathleenmkastrup "I am 2 weeks past RAI treatment and every day my mouth gets worse. Numbness, new..." + (show)
Profile picture for kathleenmkastrup @kathleenmkastrup

I am 2 weeks past RAI treatment and every day my mouth gets worse. Numbness, new ulcers every day including my lips (Mar-aLago lips), no ability to swallow, can only drink liquids, mouth bleeds every morning when I get up, heavy drooling in my sleep, etc., etc.

If I had ever known how awful, awful, painful and depressing the RAI effects would be, I would not have gone forward with that treatment, asked for something different is that was possible. Or just live with the consequences of the cancer. This is no way to live

If anyone asked me about the RAI treatment, I would definitely advise against it

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@kathleenmkastrup

I’m 4 weeks out and had the same experiences you described, and the same sense of despair. But today I felt a real turning point. I finally noticed a reduction in mouth pain and my throat healed enough to swallow a little “solid” food. Had a jar of baby food yesterday and a banana today!
I think you’re going through the worst part of this; everything piles on. Imagine a better time. Good thoughts your way.

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jimmydeb123 | @jimmydeb123 | Feb 4 8:14pm
In reply to @thomason "Dear @henrytimmins, I suffered from esophageal (Pyriform Sinus) cancer and proceeded with the 33 radiation treatments...." + (show)
Profile picture for thomason @thomason

Dear @henrytimmins, I suffered from esophageal (Pyriform Sinus) cancer and proceeded with the 33 radiation treatments. Before going, I tried every type of health regimen I could find...to no avail. Please, do not wait much longer. Starving the cancer does not work, neither does the Baking Soda & Molasses (I still shiver remembering drinking that horrible regimen), or the animal de-wormer, Fenbendazole. While I played around with all these so-called "cures," the cancer was growing. If I can make it through, so can you! This is life or death. Yes, there are many complications from the radiation, but everyone is different. The bottom line is having life. I know without a doubt I would be long dead if I had not gone through with the radiation, as the pain was getting unbearable. The chances of Chemotherapy helping me would have been a 2% increase, with many side-effects. I chose to forgo the Chemotherapy, and God-willing, am cancer-free. It is going on two years now since the treatments. If you have any questions, please message this page. God will see you through.

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@thomason It is a very difficult situation for the one with the cancer and the one taking care of the person. As the caregiver I try So hard to help him. When his throat is so sore I don’t have anything on board. I’m going to ask Doctor for alternative pain medications because he isn’t able to swallow a pill or crushed pill.A cream, patch, injection, rectal, or non sting nasal pain spray.

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thomason | @thomason | Feb 5 4:00am
In reply to @jimmydeb123 "@thomason It is a very difficult situation for the one with the cancer and the one..." + (show)
Profile picture for jimmydeb123 @jimmydeb123

@thomason It is a very difficult situation for the one with the cancer and the one taking care of the person. As the caregiver I try So hard to help him. When his throat is so sore I don’t have anything on board. I’m going to ask Doctor for alternative pain medications because he isn’t able to swallow a pill or crushed pill.A cream, patch, injection, rectal, or non sting nasal pain spray.

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@jimmydeb123 Hello. I am so sorry to hear of this suffering. The caregiver has a very difficult job to do, almost beyond human capabilities. You must take time for yourself, even if it just for a few hours. You are in my thoughts. Best wishes.

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Jano | @jano | Feb 5 8:35am

Takes time and patience. Your throat has been through hell. Try to keep using your throat. If you don’t use it, you lose it. Each day will get a bit better. I know you’ve heard this before. Best wishes. Good luck.

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bebarb10 | @bebarb10 | Feb 5 10:54am

Omg I thought the pain would never end but it does slowly till one day you can swollen without wanting to keep. Took me like 8 weeks before I was out of real paid. Eating whole other thing I am 4 months post treatment and still have feeding tube but everyday better

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sart | @sart | Feb 5 11:16pm
In reply to @sepdvm "@roadtecguy you still have a lot of healing left to do. It takes many months to..." + (show)
Profile picture for Sue, Volunteer Mentor @sepdvm

@roadtecguy you still have a lot of healing left to do. It takes many months to years to get back to your new normal. I hope yours does not include chronic pain. Don't forget that simple stuff, like ice packs, can give temporary relief.

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@sepdvm hi I'm in Australia and we have icy poles. I keep a bunch in the freezer ,they are perfect for sore throats . I prefer the pineapple and raspberry ones. Do you have anything like that ?

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Sue, Volunteer Mentor | @sepdvm | Feb 6 4:10pm
In reply to @sart "@sepdvm hi I'm in Australia and we have icy poles. I keep a bunch in the..." + (show)
Profile picture for sart @sart

@sepdvm hi I'm in Australia and we have icy poles. I keep a bunch in the freezer ,they are perfect for sore throats . I prefer the pineapple and raspberry ones. Do you have anything like that ?

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Hello @sart we do have popsicles which are fruit flavored ice on a stick, and freeze pops which are the same flavored ice but in a stick of plastic. You cut the top off and keep pushing the ice up and eating it off. They don't last as long as a popsicle. Orange was always my favorite.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 18 5:56pm
In reply to @tbveblen "@kathleenmkastrup I’m 4 weeks out and had the same experiences you described, and the same sense..." + (show)
Profile picture for tbveblen @tbveblen

@kathleenmkastrup

I’m 4 weeks out and had the same experiences you described, and the same sense of despair. But today I felt a real turning point. I finally noticed a reduction in mouth pain and my throat healed enough to swallow a little “solid” food. Had a jar of baby food yesterday and a banana today!
I think you’re going through the worst part of this; everything piles on. Imagine a better time. Good thoughts your way.

Jump to this post

I like your phrase of hitting a "real turning point". Side effects can seem insurmountable and the improvements so miniscule, then boom, there's a noticeable improvement that gives hope.

@tbveblen, thanks for your message that gives hope. It's been a further 2 weeks since you posted. Have there been further improvements? How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 18 6:26pm
In reply to @jimmydeb123 "@thomason It is a very difficult situation for the one with the cancer and the one..." + (show)
Profile picture for jimmydeb123 @jimmydeb123

@thomason It is a very difficult situation for the one with the cancer and the one taking care of the person. As the caregiver I try So hard to help him. When his throat is so sore I don’t have anything on board. I’m going to ask Doctor for alternative pain medications because he isn’t able to swallow a pill or crushed pill.A cream, patch, injection, rectal, or non sting nasal pain spray.

Jump to this post

@jimmydeb123, were you able to ask about a pain management solution to help the person you care for? How are you doing?

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