To my base of tongue cancer pals

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ditto1
ditto1 Member Posts: 660
edited May 2012 in Head and Neck Cancer #1
I was as most know by now diagnosed with BOT, but I had the swelling of the tongue and voice change, (not in my head / a fact) before even getting my 1st treatment which was chemo last week. Still weeks from rads when I expected tongue and thoart issues. My question is did any other BOT have issues before treatment / tongue feels swollen but not a breathing problem. Has pretty much felt this way for a month and voice change same time frame (I sound like have a bad cold and have to speak slowly to be understood} Not wanting to eat solids just liquids. I assume its the tumor in the tongue that causing the swelling and likely the chemo changing things as well. Guess I want to see if Im unique or some one out there can say they had a smiliar reaction.

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  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
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    Hi Ditto ...
    As to your ? "My question is did any other BOT have issues before treatment / tongue feels swollen" ...yes. I did not feel well in August (2 months before my dx)it was as if I had the flu coming on and my throat kind of felt warm but not feverish. In fact I never ran a fever.

    I felt that I could not pronounce cetain words...and I remember telling my wife "it's like I have had a mini-stroke or something" because I noticed some words I just had a difficult time working my tongue around such as the word "deluxe" "breakfast" and the word "eat" ? Strange I know but I remember those words in particular bc I used them often in my line of work (I manage a couple of hotels and an RV Park) such as when I am informing guests of our "complimntary deluxe breafkast" etc., etc. It was really a wierd feeling.

    I never stopped eating solids or liquids due to my throat but more due to the fact I just overall did not feel well. I remember joking with my wife that "if this is the flu coming on I sure wish it would hurry up and get here" ...oh boy if I only knew then what was coming. :)

    What's ironic is just 2 weeks ago (3.5 monnths after last rad treatment) my voice has gone hoarse (due most likely to the side affects of radiation) ...and I mean really hoarse.

    Talk at you soon Ditto ....keep us in the loop. PM (private message) me if you need anything.

    Tim
  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
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    yes
    Jim had a sorness in throat, a little hoarseness and he could not move his tongue to the right. All this was before diagnosis. All these were gone two months after treatment ended. Gives you something to look forward to.

    Praying all goes well and you have a quick recovery.

    Debbie
  • ditto1
    ditto1 Member Posts: 660
    #4
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    jim and i said:

    yes
    Jim had a sorness in throat, a little hoarseness and he could not move his tongue to the right. All this was before diagnosis. All these were gone two months after treatment ended. Gives you something to look forward to.

    Praying all goes well and you have a quick recovery.

    Debbie

    Thanks for the quick replies
    makes me feel better. Tim your right I feel like I talk as if I had a stroke and the tongue just feels goofy all away aroung. Debbie thank you for your reply as well makes me feel better knowing it should relieve it self after treatment. Since the tongue as been an issue for about 5 weeks now and the breathing has never been an issue I have very little anxiety only agravation. Again God Bless you folks and your quick responses. As we all have said, it just eases the travel and removes the mysteries.
  • Pam M
    Pam M Member Posts: 2,196
    #5
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    I Didn't Notice
    Noticed no changes in my tongue until after my first fine needle biopsy. Define "Fine Needle". I had a sore throat and some hoarseness before I saw a doc (I attributed them to post nasal drip or something), and couldn't chew gum before diagnosis (kept feeling like a small part of the gum would "break off", and it felt like it'd stretch across my throat - was distressing) - now I'm assuming that it was just that something that tiny would rest on top of my tumor, while larger foods would just push their way down past the tumor.

    Well - just thought it was funny that I'm sitting here, with a sore throat and hoarseness again. This time, it's some bug I picked up a couple weeks ago - I was amazed at how sick I got (pre-treatment, I normally NEVER picked up bugs, or if I did, my system eliminated them before they became an issue). Ah well - I felt that I had tongue issues most of the time after my first needle biopsy. Chemo made it much worse (I did three rounds of induction chemo before chemo rads).
  • ditto1
    ditto1 Member Posts: 660
    #6
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    Pam M said:

    I Didn't Notice
    Noticed no changes in my tongue until after my first fine needle biopsy. Define "Fine Needle". I had a sore throat and some hoarseness before I saw a doc (I attributed them to post nasal drip or something), and couldn't chew gum before diagnosis (kept feeling like a small part of the gum would "break off", and it felt like it'd stretch across my throat - was distressing) - now I'm assuming that it was just that something that tiny would rest on top of my tumor, while larger foods would just push their way down past the tumor.

    Well - just thought it was funny that I'm sitting here, with a sore throat and hoarseness again. This time, it's some bug I picked up a couple weeks ago - I was amazed at how sick I got (pre-treatment, I normally NEVER picked up bugs, or if I did, my system eliminated them before they became an issue). Ah well - I felt that I had tongue issues most of the time after my first needle biopsy. Chemo made it much worse (I did three rounds of induction chemo before chemo rads).

    Much worse?
    My tumor seems to have distorted the left side of my touge, like it was more than just swollen, having hard time judging whether its getting bigger/more swollen or not breathing ok but starting to feel anxious about how long before that may change. Can swallow water but not hungry, all this after 1st chemo, was hoping we would see tumor reduction. Checking with the Docs this morning, my concern is they will likely assume the worst and send me to the ER. I just need to know if this is normal and should not shut down my ability to breath. Eating thats something else, thought that would not be an issue until after RADS, wrong....
  • Pam M
    Pam M Member Posts: 2,196
    #7
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    ditto1 said:

    Much worse?
    My tumor seems to have distorted the left side of my touge, like it was more than just swollen, having hard time judging whether its getting bigger/more swollen or not breathing ok but starting to feel anxious about how long before that may change. Can swallow water but not hungry, all this after 1st chemo, was hoping we would see tumor reduction. Checking with the Docs this morning, my concern is they will likely assume the worst and send me to the ER. I just need to know if this is normal and should not shut down my ability to breath. Eating thats something else, thought that would not be an issue until after RADS, wrong....

    Clarification
    Chemo made it much worse AT TIMES. I developed some juicy mouth sores - epic ones during round two of induction chemo that left me unable to speak coherently for days, and in great pain. Keep in mind, though, that I was on big doses of three different chemo drugs - one of which was pumped into me 24 hrs a day for five days each chemo round. And not all folks who had the "big dog chemo" developed mouth sores.

    Early on, I was also concerned that the changes/swelling going on would threaten my ability to breathe. It did not. I think it was just the notion that I could tell the difference, and kept thinking "what if it keeps getting worse?" "What if it balloons during the night?". I think it's natural for us to feel like our ability to breathe is being threatened, though. I, too, felt my tongue had grown during treatment.

    Loss of appetite is rampant for us. I lost my appetite before treatment started, but I still had some foods I wanted - just didn't feel like I needed food. When you already are not feeling hungry, and add in all the stress and worry - it's no wonder many of us just don't eat. Early in treatment, I enticed myself with most of my favorite foods - so I would at least eat out of greed, even though I wasn't hungry. I considered calories to be a prescription, and tracked what I ate, and made myself get in the calories (most days, anyway).

    I also had hoped for immediate tumor reduction when chemo started. I didn't get it. Even when the doctors were pleased by the size change in my lymph node tumors, I didn't feel the same, at first. It was wonderful, though, when I finally felt like I was making progress. Hope you experience that feeling soon.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
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    Pam M said:

    Clarification
    Chemo made it much worse AT TIMES. I developed some juicy mouth sores - epic ones during round two of induction chemo that left me unable to speak coherently for days, and in great pain. Keep in mind, though, that I was on big doses of three different chemo drugs - one of which was pumped into me 24 hrs a day for five days each chemo round. And not all folks who had the "big dog chemo" developed mouth sores.

    Early on, I was also concerned that the changes/swelling going on would threaten my ability to breathe. It did not. I think it was just the notion that I could tell the difference, and kept thinking "what if it keeps getting worse?" "What if it balloons during the night?". I think it's natural for us to feel like our ability to breathe is being threatened, though. I, too, felt my tongue had grown during treatment.

    Loss of appetite is rampant for us. I lost my appetite before treatment started, but I still had some foods I wanted - just didn't feel like I needed food. When you already are not feeling hungry, and add in all the stress and worry - it's no wonder many of us just don't eat. Early in treatment, I enticed myself with most of my favorite foods - so I would at least eat out of greed, even though I wasn't hungry. I considered calories to be a prescription, and tracked what I ate, and made myself get in the calories (most days, anyway).

    I also had hoped for immediate tumor reduction when chemo started. I didn't get it. Even when the doctors were pleased by the size change in my lymph node tumors, I didn't feel the same, at first. It was wonderful, though, when I finally felt like I was making progress. Hope you experience that feeling soon.

    Ditto...take breath .... :):)
    Hang in there ditto.

    I was not able to eat half way through treatments (thank gosh I had the feeding tube in place before I started treatments ..and I still lost 70lbs!!!) ...

    Of course run everything by your dostors ..tell them how you feel but also tell them your worries (they really can help with the worries too)...

    ..I really had a hard time with my base of tongue mid-way thru treatmnets (my tumor was BOT as well) ...and I just went to drinking endure and milk ...room temprature ...but then soon I could not even do that ...I had no appetite at all and just made sure all food / liquids went through the tube .....(remember this was half way thru) .....

    A couple of times I got anxious about being able to breath ...they prescribed me Ativan and it really help ...it apparently calms you down but the nurse said it also relaxes your muscles (including the ones in your throat) ...and maybe it was just a sugar pill...but it helped.

    In my opinion and all I have read on the forum here ...it does seem you are still in the normal range of issues ...but again, please always be candid with your docs about current issues and issues you are worried about.

    Best to you Ditto...and prayers are coming your way every night buddy.

    Tim
  • ditto1
    ditto1 Member Posts: 660
    #9
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    Tim6003 said:

    Ditto...take breath .... :):)
    Hang in there ditto.

    I was not able to eat half way through treatments (thank gosh I had the feeding tube in place before I started treatments ..and I still lost 70lbs!!!) ...

    Of course run everything by your dostors ..tell them how you feel but also tell them your worries (they really can help with the worries too)...

    ..I really had a hard time with my base of tongue mid-way thru treatmnets (my tumor was BOT as well) ...and I just went to drinking endure and milk ...room temprature ...but then soon I could not even do that ...I had no appetite at all and just made sure all food / liquids went through the tube .....(remember this was half way thru) .....

    A couple of times I got anxious about being able to breath ...they prescribed me Ativan and it really help ...it apparently calms you down but the nurse said it also relaxes your muscles (including the ones in your throat) ...and maybe it was just a sugar pill...but it helped.

    In my opinion and all I have read on the forum here ...it does seem you are still in the normal range of issues ...but again, please always be candid with your docs about current issues and issues you are worried about.

    Best to you Ditto...and prayers are coming your way every night buddy.

    Tim

    Bloody bad day
    Woke up this moringing, slept well but seemed to have mucus surpreme, and when it 1st started being spit up it was red with blood. A little concerning, but seem to come and go with clear spit up. We rearranged to see the ONC RN today. That offered some peace of mind. Altough today seems to be the roughest since CHemo day last tuesday. Try to follow my wifes lead since she is a breast cancer survivor 12 years. Still it just sucks.. I tip my hat to all of you who have made it thru or getting there. I guess Im doing the same, just kind polking along. Still rough on me and The Other Ditto. will likely get worse for it gets better, but should get better. All you folks have had a hard run. and Tim your the man, to have moved from your family and lived in a RV for treatment. It must have been tough but Im sure your faith in God made it work for you. Just Proud of Ya, your a better man than I. Not sure I could have handle it. SO thanks to all of you for taking the time to respond to me.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #10
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    ditto1 said:

    Bloody bad day
    Woke up this moringing, slept well but seemed to have mucus surpreme, and when it 1st started being spit up it was red with blood. A little concerning, but seem to come and go with clear spit up. We rearranged to see the ONC RN today. That offered some peace of mind. Altough today seems to be the roughest since CHemo day last tuesday. Try to follow my wifes lead since she is a breast cancer survivor 12 years. Still it just sucks.. I tip my hat to all of you who have made it thru or getting there. I guess Im doing the same, just kind polking along. Still rough on me and The Other Ditto. will likely get worse for it gets better, but should get better. All you folks have had a hard run. and Tim your the man, to have moved from your family and lived in a RV for treatment. It must have been tough but Im sure your faith in God made it work for you. Just Proud of Ya, your a better man than I. Not sure I could have handle it. SO thanks to all of you for taking the time to respond to me.

    With you Ditto ..
    and sorry about the bad day ...I swear that mucous is the WORST!!!!

    Thanks for the compliment ...but trust me (and my wife will testify) she said she would kill me if I left her with five young kids to raise ....so I was just afraid of her ....hahahahahahahahaha ... :):):)

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
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    Ditto, Ditto, ummmm Ditto....
    Just wanted to give a shout out (actually I had a yearning to say "Ditto, Ditto, ummmm, Ditto"), LOL....

    Just a shout out, to let you know I'm thinking of you and the other Ditto in your life.

    Just remember, you are not alone, there's usually always someone on here up and about.

    Thoughts & Prayers,
    John
  • Pam M
    Pam M Member Posts: 2,196
    #12
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    ditto1 said:

    Bloody bad day
    Woke up this moringing, slept well but seemed to have mucus surpreme, and when it 1st started being spit up it was red with blood. A little concerning, but seem to come and go with clear spit up. We rearranged to see the ONC RN today. That offered some peace of mind. Altough today seems to be the roughest since CHemo day last tuesday. Try to follow my wifes lead since she is a breast cancer survivor 12 years. Still it just sucks.. I tip my hat to all of you who have made it thru or getting there. I guess Im doing the same, just kind polking along. Still rough on me and The Other Ditto. will likely get worse for it gets better, but should get better. All you folks have had a hard run. and Tim your the man, to have moved from your family and lived in a RV for treatment. It must have been tough but Im sure your faith in God made it work for you. Just Proud of Ya, your a better man than I. Not sure I could have handle it. SO thanks to all of you for taking the time to respond to me.

    I Had Almost Forgotten the Blood
    It was hard, feeling bad, hacking up goodness knows what, then looking into the tissue (or paper towel, or bathroom tissue - whatever I had at the time) with a sense of dread, hoping there'd be no blood. It made sense to me (logically) that there would often be blood. The non-logical part of me, of course, had to be talked down. I'd check with docs, and come here to see if anyone else was posting about whatever I was going through at the time. Sometimes I'd post, hoping others would say "yeah, me, too".

    You are absolutely right - "It just sucks". Glad you're doing what we all need to strive to do - keep on keeping on. It does get better - but some days that knowledge is little comfort. Do well.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #13
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    ?? for you ditto...
    I don't recall you posting this and there is nothing in your bio ...what stage were you dx at? and did you have any lymph node involved ...I think theotherditto posted this somehere ..but I can't find it. :)

    Fill in your bio if you want to ...it helps other BOT folks see where you were at and compare their treatments.

    Hope you are feeling better today!!! So maybe not a "bloody good day" ...but better :):)

    Tim

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