Sore throat so soon, normal? Location of symptoms? Also remedies?

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Melisande
Melisande Member Posts: 27 Member
in Head and Neck Cancer #1

I woke up yesterday with the sore throat I was told to expect. The thing is, it is pretty bad and I have only had 11 out of 33 radiation treatments. For some reason I was under the impression that the side effects only got bad for the last two weeks or so. I'm seeing my radiation oncologist today, so I will ask her too, but when did you start feeling your sore throat? Was it that early? I have heard a lot about the "Magic Mouthwash." I really hope it is more than just a mouthwash, because my sore throat is lower down than that -- too low down for a gargle to reach. In any case, should I just go with the prescription stuff right away or try to tough it out for another few days?

As fat as remedies go, so far I have been trying an aloe vera drink and slippery elm lozenges. I also have some dark, processed honey that I am going to start using tomorrow before and after treatment. Does anyone have any other home remedies to suggest? 

 

Also, due in part to the strange diagnostic lead-up to my treatment, I am feeling slightly paranoid that they aren't exactly zapping me in the right place. As I mentioned in a previous thread, all evidence of disease is in my thorax (I have been diagnosed with lung cancer w/occult primary), but my radiation oncologist is in head and neck, while my medical oncologist is in thoracic oncologist. An interdisciplinary baby, I am. I wanted to be entirely in thoracic, but they wouldn't hear of it for some reason. I don't know why. (I am at Moffitt, BTW.) In any case, although my involved lymph nodes are in my thorax below my collar bone, and they told me that they were not targeting the mucosal tissue in my throat, it seems like all my side effects are appearing above my collar bone. My sore throat is way above my collar bone about 1" below my jaw. In fact, I would think that maybe it is just an infection, if my radiation rash didn't also extend all the way up there on the outside too.

 

Does it make sense to have side effects way up there if the targets are lower done? I want to ask my radiation oncologist about this, but I don't want to just ssk: "Are you sure I am bring radiated in the right spot, because it doesn't feel like!" It feels like I am accusing her of incompetence.

There is some good news though. I could only feel one of my three lymph node tumors from the outside, but it seems like the one I can feel is completely gone already! It was golf ball size when I started treatment two weeks ago and now I can't even find it. My radiation oncologist told me it was basically impossible that it disappeared so quickly and yet it seems to have. It didn't disappear all of a sudden. I have felt it shrinking, last week it was down to marble-sized. Yesterday, it was only chickpea-sized and today I can't feel it at all. But this lymph node is higher up than my other two nonpalpable ones. I hope those are being targeted too.

But maybe they are targeting them correctly and having great success? At least it certainly seems that way from the apparent disappearance of the palpable node. Is there anyway they could do a CT scan early and if there is already no evidence of disease, maybe we could shorten treatment? Does this ever happen? 

I am going to cross-post this in the lung cancer forum. I figure since I am beinfvtreat in two different departments, it makes sense to post in two different forums as well. 

Comments

  • camlitlow
    camlitlow Member Posts: 6 Member
    edited October 2019 #2
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    Early Symptoms

    Hi, my symptoms started very early for me as well. I started to get what felt like a swollen throat and fatgue at around the 8th or 9th treatment. Things got worse after that but the good news (at least in my case) was that things seemed to level out once the mouth sores and sore throat came (about the 15 or so treatment) until the 28 or so treatment. The last 2 or 3 were pretty bad. I started Ensure, Carnation and ice blended around the 3rd week, no PEG. The magic mouthwashed helped quite a bit. I swished it for 5 min then swallowed, 4 times a day. Still lost 40 pounds but at least I got some nutrition.

    Biggest things I can recommend:

    Ask to see a copy of your treatment plan. Assume you are doing IMRT so they should be able to show you the treatment plan on the computer

    Aloe Life and Aquaphor helped me alot for the burns. Use it as much as you can. I was very fortunate that my burns were minor and went away quick.

    When you go on the nutrition shake diet, make sure you are taking something to ward off constipation. 

    Invest in a Curaprox toothbrush from Amazon. Really helps to be able to brush your teeth. Super soft.

    Take naps. I was able to work all the way through by napping at lunch then taking another nap when I got off of work

     

    D.

  • Melisande
    Melisande Member Posts: 27 Member
    #3
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    Thanks. I am a little

    Thanks. I am a little concerned about the diet, since I can't eat all those commercially available  nutrition shakes. I have to essentially eat nonfat due to chronic pancreatitis and they all have too much fat in them for me. So, I suppose I will have to make all my shakes myself with nonfat ingredients-- if I have the energy. 

    Thanks for the suggestion to see the treatment plan. My radiation oncologist was reassuring today, but still I think it would be a good idea. She did show me exactly  where she was irradiating me on my body and it was higher up than I expected. I knew we had agreed to have one level higher and one level lower than my involved nodes but I didn't have a physical sense of where that lined up on my body. It turns out that it is pretty high up on the neck after all. 

    I am a little perplexed that she keeps denying that my one palpable node has dramatically shrunk. She keeps saying that it seems a little smaller to her, but that was because it was inflamed after the biopsy and shrunk back to its previous size. But I know that isn't true. Basically, my palpable node is a not-really-palpable node now. I mean I can find it (it turns out it wasn't totally gone), but I really have to dig in and hunt around in my collar bone area to find it buried in there. There's no way I would have ever discovered it in the first place if it was as small as it is now.

     

    Anyway, whatever, it's either getting better or it isn't. And it's not like her attitude towards it is changing anything. 

  • nehagill
    nehagill Member Posts: 24
    #4
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    Melisande said:

    Thanks. I am a little

    Thanks. I am a little concerned about the diet, since I can't eat all those commercially available  nutrition shakes. I have to essentially eat nonfat due to chronic pancreatitis and they all have too much fat in them for me. So, I suppose I will have to make all my shakes myself with nonfat ingredients-- if I have the energy. 

    Thanks for the suggestion to see the treatment plan. My radiation oncologist was reassuring today, but still I think it would be a good idea. She did show me exactly  where she was irradiating me on my body and it was higher up than I expected. I knew we had agreed to have one level higher and one level lower than my involved nodes but I didn't have a physical sense of where that lined up on my body. It turns out that it is pretty high up on the neck after all. 

    I am a little perplexed that she keeps denying that my one palpable node has dramatically shrunk. She keeps saying that it seems a little smaller to her, but that was because it was inflamed after the biopsy and shrunk back to its previous size. But I know that isn't true. Basically, my palpable node is a not-really-palpable node now. I mean I can find it (it turns out it wasn't totally gone), but I really have to dig in and hunt around in my collar bone area to find it buried in there. There's no way I would have ever discovered it in the first place if it was as small as it is now.

     

    Anyway, whatever, it's either getting better or it isn't. And it's not like her attitude towards it is changing anything. 

    Wont it be better for you if

    Wont it be better for you if she has a positive attitude about you and your body. I mean why this denying about shrinkage of the lymoh node? Its something i still need to understand. Is being supportive so difficult?

    Why dont you think about changing your Oncologist. I don understandle for how long this relationship going to work if there is no trust whatsoever.

     

  • Melisande
    Melisande Member Posts: 27 Member
    #5
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    I was right. It was shrinking

    I was right. It was shrinking! Since my last post the radiation oncologist told me that all my lymph node tumors have dramatically shrunk and are almost gone! Yay!

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #6
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    Melisande said:

    I was right. It was shrinking

    I was right. It was shrinking! Since my last post the radiation oncologist told me that all my lymph node tumors have dramatically shrunk and are almost gone! Yay!

    Great Melisande

    Great news that ALL your lymph node tumors have DRAMATICALLY shrunk and may they continue shrinking till they're gone-God Bless

  • nehagill
    nehagill Member Posts: 24
    edited November 2019 #7
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    It's an amazing news. So

    It's an amazing news. So happy for you.

    Good luck honey.

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #8
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    Follow that little voice in your head!

    ASK ASK ASK questions until you feel comfortable that they are radiating in the correct place!

    The side effects are probably right on schedule, where you're at.

    The Magic mouthwash was incredible, it numbs your throat and will help you sleep at night.

    I wish you the best, and all I can tell you is that you WILL get through all of this, and feel ok again - I promise! I'm sending a prayer your way....

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited December 2019 #9
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    Magic Mouthwash

    Others LOVE it.

    Incredibly, it was the one thing I could really taste and it was disgusting.. ughhhh

     

    Liquid Lidocaine on the other hand, without that I'd have never eaten

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