Temporary setbacks or forever symptoms?

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ERomanO
ERomanO Member Posts: 319 Member
edited February 2019 in Head and Neck Cancer #1

I guess this never gets easier, does it?  And I think I fooled myself a bit as well, thinking that normalcy was right around the bend.

After breezing (that's a relative term, of course) through the treatments last spring, three months post I was starting to feel pretty good, then knock, knock, knock... oh, hello neuropthy... I wasn't expecting you!?!?  At first it was only a slight indication, but within a couple weeks it got bad enough that I thought it was going to drive me mad.  So my doctor prescribed Gabapentin and it's now under control.  It still bugs me occasionally, but nothing like it was before the Gabapentin.  

With the neuropahthy out of the picture enough that I wasn't thinking about it every minute of the day, I started feeling better and better.  I was even forgetting to take a water bottle with me when I went out because I hardly even needed it.  I was visiting with some friends the Saturday before New Years and found that I could even enjoy a little dry red wine if I sipped it.  Wow!  Maybe my saliva will be back soon!  Well, we had very mild temperatures in December, but come January the cold came and knock, knock, knock... oh, hello severe dry mouth... I wasn't expecting you!?!?   Man, it was like night and day, and it's been kinda awful.  I've been practically living on Xylitol for the last month.  I hope that a rainy spring will at least get me back to where I was at the end of December, but I think I'm starting to learn a lesson here.

I know that there are many of you that are truly suffering - and my heart goes out to you all - compared to my ongoing annoyances, but breezing through the treatments and having my docs all tell me how great I look may have made me a little unrealistically optimistic that these symptoms would go away and that I would truly be "my old self" again.  I'm pretty sure that Mr Old Self is gone forever.  After 4 months of neuropathy I'm pretty sure it's here to stay... and I don't know if I've ever read a post from anyone here saying that their dry mouth went away and that they are happily drooling on themselves again.  I guess Xylitol will be on my menu for a very long time.  

But hey, at least my neck edema is very minimal... almost non-existent.  In other good news, after passing my yearly physical in January with flying colors my GP cut my cholesterol medication dose in half.  My goal will be to cut that in half again next year!  My dental checkups have been great as well.

I guess I need to listen to that song "Always Look on the Bright Side Of Life" again. ;-)

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Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,308 Member
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    ERomanoO I'm with ya

    On the neuropathy. I also take gabapentin. Prescribed 300mg 3 times a day but right now I only take it 2 times a day unless it's really buggin me. I tried to eliminate any meds I take if possible and gabapentin was one of them. I quit taking gabapentin a couple times but like you say the neuropathy drives ya mad so to speak so I have to take it at least once a day at the minimum.  My neuropathy is to the point that you can feel it extending from the hands up the forearms and from the feet up the calves in your legs. Since it is a problem with the nervous system and I read somewhere that the nerves control the activity of the bowel as far as it flexing and keeping things moving in the system that it causes erratic bowel movements for me. I could be wrong but since I recognized I have it pretty extensively after treatment I may go fairly regularly for a while and at times it can be anywhere from 4-7 days in between and then I go a good bit usually. I don't know if anyone else on this forum has trouble with neuropathy but it is my worst leftover from treatment. I don't see it talked about much on here so maybe most folks that had the platins in treatment aren't bothered by it.

    Neuropathy links--

    https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment

    https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

     

    I also have dry mouth and sip something all day usually coffee and or in combination chew gum with xylitol as the main ingredient which is supposed to help dry mouth. I do at times use the xylimelts at night time for sleeping but am good most of the time. Except if I have a stuffy nose and wake up breathing through my mouth it is like a desert. At our support group one time a lady gave a talk and showed us products to help with mouthcare and she said if the ingredient list of an item lists xylitol as the first ingredient or closer to the top of the list it means there is a higher percentage of it in the product. She also had squigle toothpaste with fluoride there so I have been using that. I have been getting good checkups mostly.

    I also have some tinnitus (ringing in the ears)

    As far as radiation I don't think I have any side effects from it except I had problems with food getting stuck in my throat as it was probably shrunk and less flexible from the radiation and some pills I had trouble swallowing but I had gotten 4 dilations which pretty much took care of the problem but I still have to chew things well and be careful swallowing. And there is one pill I take which is rather large and chalky so I cut that one in half.

    But I am extremely thankful that I can eat and could get off of a feeding tube as some on here are not so blessed.

    I'll tell ya most people on here and our campus support group folks can attest to the fact that when any of us that have had any rather extensive cancer treatment is done almost nobody gets off scot-free we are left with some leftover problem or another or multiple problems for that matter.

    God Bless-Take Care

     

  • ERomanO
    ERomanO Member Posts: 319 Member
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    Neuropathy not discussed much

    I've only been here a short while but You're right in that not many members bring it up.  I'm thankful that at least the Gabapentin works for me to a certain extent.  A friend of mine that went through surgery and chemo for colon cancer has neuropathy, and nothing gives him any relief.  I'm also taking 300mg capsules, but 4 times a day, and I have to keep tabs on how long I go between doses (usually about 4 hours) so that I don't accidentally miss a dose, especially if I'm leaving home for a bit.  I never considered the association to BMs, but so far that not been an issue.

    Right now I'm chalking up the sudden extra dry mouth to the change in weather.  We shall see.  As I said, if I could just get back to where I was in December I'd be happy.

    I'm very thankful that I never experienced the swallowing issues, other than a few days after my treatments ended.

    I've had tinnitus for over 20 years, so I'm quite used to it and it no longer bothers me.  I suppose these other discomforts could wind up the same - a new normal (boy do I hate that term!).

  • accordiongirl
    accordiongirl Member Posts: 63
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    wbcgaruss said:

    ERomanoO I'm with ya

    On the neuropathy. I also take gabapentin. Prescribed 300mg 3 times a day but right now I only take it 2 times a day unless it's really buggin me. I tried to eliminate any meds I take if possible and gabapentin was one of them. I quit taking gabapentin a couple times but like you say the neuropathy drives ya mad so to speak so I have to take it at least once a day at the minimum.  My neuropathy is to the point that you can feel it extending from the hands up the forearms and from the feet up the calves in your legs. Since it is a problem with the nervous system and I read somewhere that the nerves control the activity of the bowel as far as it flexing and keeping things moving in the system that it causes erratic bowel movements for me. I could be wrong but since I recognized I have it pretty extensively after treatment I may go fairly regularly for a while and at times it can be anywhere from 4-7 days in between and then I go a good bit usually. I don't know if anyone else on this forum has trouble with neuropathy but it is my worst leftover from treatment. I don't see it talked about much on here so maybe most folks that had the platins in treatment aren't bothered by it.

    Neuropathy links--

    https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment

    https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

     

    I also have dry mouth and sip something all day usually coffee and or in combination chew gum with xylitol as the main ingredient which is supposed to help dry mouth. I do at times use the xylimelts at night time for sleeping but am good most of the time. Except if I have a stuffy nose and wake up breathing through my mouth it is like a desert. At our support group one time a lady gave a talk and showed us products to help with mouthcare and she said if the ingredient list of an item lists xylitol as the first ingredient or closer to the top of the list it means there is a higher percentage of it in the product. She also had squigle toothpaste with fluoride there so I have been using that. I have been getting good checkups mostly.

    I also have some tinnitus (ringing in the ears)

    As far as radiation I don't think I have any side effects from it except I had problems with food getting stuck in my throat as it was probably shrunk and less flexible from the radiation and some pills I had trouble swallowing but I had gotten 4 dilations which pretty much took care of the problem but I still have to chew things well and be careful swallowing. And there is one pill I take which is rather large and chalky so I cut that one in half.

    But I am extremely thankful that I can eat and could get off of a feeding tube as some on here are not so blessed.

    I'll tell ya most people on here and our campus support group folks can attest to the fact that when any of us that have had any rather extensive cancer treatment is done almost nobody gets off scot-free we are left with some leftover problem or another or multiple problems for that matter.

    God Bless-Take Care

     

    Possible tip for pills

    i have to share an idea my husband gave me when i was dealing with a large chalky (unpleasant tasting) pill a couple of years ago (not cancer related, but pill swallowing, just the same).  He suggested that i coat the pill lightly with butter - to "seal" it and make it easier to go down.  Honest to goodness, that WORKS!!  The pill doesn't start to dissolve or get stuck (causing panic!) - it just disappears.  Maybe it will work for you?  It's certainly a technique that i'll have mom use as she has more and more trouble swallowing anything.

    Be well.

    ~ accordiongirl

  • wbcgaruss
    wbcgaruss Member Posts: 2,308 Member
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    Thanks for the Tip accordiangirl

    Great idea coating the pill with a sealing slippery food-butter-thanks

  • tbret
    tbret Member Posts: 71 Member
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    I know you know this

    My dry mouth can be truly arid, or not-so-bad and I haven't figured-out what causes it. It doesn't seem to be the weather (in my case).  But, you did not mention Biotene.  If you haven't tried it, I think maybe it would be a worthwhile experiment for you.  It comes in a paste (it works, but it's... unnatural feeling), and in a little spray (it works, but it's a little...medicinal), and in the mouth rinse.  I have tried multiple, multiple other things and I am *not* predicting you will have my same results, but Biotene rinse was the best compromise I could find.

    I am fortunate.  I have almost no neuropathy, but that may be because they had to stop whacking me up with Cisplatin after the fifth infusion (my marrow crashed).

     

    But here's what I really came to say:  I am more than two years out from my last treatment.  Things are still changing for the better.  I have just recently begun tasting a few tastes I had previously lost (no everything isn't back, but anything that comes back is a blessing).  I am gaining weight like it's going out of style (just recently after being underweight for a year and a half and being "about right" for six months).  The tinnitus I have had since an Aerosmith concert in about 1978... or maybe that was a bombing... and years of headphones way too loud, but the Cisplatin gave me tinnitus that nearly drove me out of my mind.  It passed.  Quickly.  Thank goodness.  I am back to enjoying Aerosmith in headphones! Smile

     

    You make it sound like you did breeze through!  That's awesome.   I wasn't so lucky and so every ability I get back and all those I retain are as precious as natural emeralds.

     

    Still, I am REALLY sorry about the persistent neuropathy.  At least I didn't have THAT exquisite little inconvenience.  ...or at least not yet.

     

  • accordiongirl
    accordiongirl Member Posts: 63
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    wbcgaruss said:

    Thanks for the Tip accordiangirl

    Great idea coating the pill with a sealing slippery food-butter-thanks

    Absolutely!

    You are most welcome!  i thought it was a brilliant - and easy - idea on the part of my hubby.  i once coated the pill with a bit of frosting since i was not in a place where butter was handy.  Worked well.  Cool

  • big G
    big G Member Posts: 177 Member
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    tbret said:

    I know you know this

    My dry mouth can be truly arid, or not-so-bad and I haven't figured-out what causes it. It doesn't seem to be the weather (in my case).  But, you did not mention Biotene.  If you haven't tried it, I think maybe it would be a worthwhile experiment for you.  It comes in a paste (it works, but it's... unnatural feeling), and in a little spray (it works, but it's a little...medicinal), and in the mouth rinse.  I have tried multiple, multiple other things and I am *not* predicting you will have my same results, but Biotene rinse was the best compromise I could find.

    I am fortunate.  I have almost no neuropathy, but that may be because they had to stop whacking me up with Cisplatin after the fifth infusion (my marrow crashed).

     

    But here's what I really came to say:  I am more than two years out from my last treatment.  Things are still changing for the better.  I have just recently begun tasting a few tastes I had previously lost (no everything isn't back, but anything that comes back is a blessing).  I am gaining weight like it's going out of style (just recently after being underweight for a year and a half and being "about right" for six months).  The tinnitus I have had since an Aerosmith concert in about 1978... or maybe that was a bombing... and years of headphones way too loud, but the Cisplatin gave me tinnitus that nearly drove me out of my mind.  It passed.  Quickly.  Thank goodness.  I am back to enjoying Aerosmith in headphones! Smile

     

    You make it sound like you did breeze through!  That's awesome.   I wasn't so lucky and so every ability I get back and all those I retain are as precious as natural emeralds.

     

    Still, I am REALLY sorry about the persistent neuropathy.  At least I didn't have THAT exquisite little inconvenience.  ...or at least not yet.

     

    Great Tip

    The butter tip for pills is a good one. After my Tors surgery I purchased a small pill crusher on Amazon for 5 or 6 bucks that looked like a little pin wheel that worked great easy to load and turn with your hand could be an option for some. As far as the dry mouth I constantly drink something usually water but also use the Biotene espicially before going to bed and sometimes again during the night. 

  • ERomanO
    ERomanO Member Posts: 319 Member
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    tbret said:

    I know you know this

    My dry mouth can be truly arid, or not-so-bad and I haven't figured-out what causes it. It doesn't seem to be the weather (in my case).  But, you did not mention Biotene.  If you haven't tried it, I think maybe it would be a worthwhile experiment for you.  It comes in a paste (it works, but it's... unnatural feeling), and in a little spray (it works, but it's a little...medicinal), and in the mouth rinse.  I have tried multiple, multiple other things and I am *not* predicting you will have my same results, but Biotene rinse was the best compromise I could find.

    I am fortunate.  I have almost no neuropathy, but that may be because they had to stop whacking me up with Cisplatin after the fifth infusion (my marrow crashed).

     

    But here's what I really came to say:  I am more than two years out from my last treatment.  Things are still changing for the better.  I have just recently begun tasting a few tastes I had previously lost (no everything isn't back, but anything that comes back is a blessing).  I am gaining weight like it's going out of style (just recently after being underweight for a year and a half and being "about right" for six months).  The tinnitus I have had since an Aerosmith concert in about 1978... or maybe that was a bombing... and years of headphones way too loud, but the Cisplatin gave me tinnitus that nearly drove me out of my mind.  It passed.  Quickly.  Thank goodness.  I am back to enjoying Aerosmith in headphones! Smile

     

    You make it sound like you did breeze through!  That's awesome.   I wasn't so lucky and so every ability I get back and all those I retain are as precious as natural emeralds.

     

    Still, I am REALLY sorry about the persistent neuropathy.  At least I didn't have THAT exquisite little inconvenience.  ...or at least not yet.

     

    Biotene products

    I am VERY familiar with their products, and other store brands that contain Xylitol (the active ingredient in the Biotene products) and have been using them generously since this excessive dry mouth began.  In fafct, I need to go stock up today.  As to medicinal tastes, I have no aversions to them... thery just don't bother me.  In fact, the last time I was scoped the resident that did the procedure was amazed that I didn't complain about the taste of the numbing spray.  She said that she had patients crying from the scoping procedure - from the spray and general discomfort it can cause.  As you say, maybe this is not weather related and just one of those changes that we all go through. Since it's been warm and humid the last week my mouth has improved (but that could be from all the Xylitol products, too).  I'll just keep tabs on it and try to stay ahead of the curve.  That's waht it's all about.

    My taste buds got back to 80-90% 2 months after finishing treatments.  I'd say they have settled at around 90%... maybe a little more... with most of my favorite foods back on thr menu.  Bread and pasta sauce just aren't quite like they used to be, but that's okay.  It keeps me from eating too many carbs.  I lost 30 lbs during my treatments through the spring last year, and put 20 lbs back on by the fall.  It'll be a lot of work trying to keep that last 10 off.

    I have played guitar in bands since I was 12, adnd 50 years later I'm still at it.  Back in the mid 90's I was playing with some guys that liked to play LOUD, plus I was riding an exercise bike everyday and listening to music while I was on it, and probably louder than needed.  That's when the tinnitus hit.  At first it would go away after a day or so, but one morning I woke up and the ringing was still there and never went away.  Such is life.  But I really don't even notice it anymore.  The good news is that my 3 rounds of Cisplatin didn't make it worse, or affect my hearing in general.

    Neuropathy stinks, but Gabapentin keeps my it under control to where I am only occasionally irritated to varying degrees.  I almost always feel it, but when it's being minimized by the Gabapentin it's almost like the tinnitus - I hardly notice it.

    I will raise my cup of coffee and offer a toast to all the H&NC survivors - may we all have things change for the better, even if its just a little at a time, because we now have been given juast that... time. 

  • OKCnative
    OKCnative Member Posts: 326 Member
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    I too suffered from

    I too suffered from neuropathy after treatment. So painful at night I'd have to get up and walk around. Then, sometimes during the day it would go from sharp pains to total numbness - to the point I'd have to sit down because I couldn't feel my leg.

    Doctor wanted to put me on meds, but I've been very resistant to any medication (used regulated THC during treatment for pain and nausea to avoid taking any opioids).

    Doctor said if I wouldn't take pills then I had to drastically increase my physical activity. I began cycling classes at my local gym (1 hour high intensity twice a day) and started standing up at my desk while working.

    Fortunately, within 6 weeks all signs of neuropathy went away.

    Dry mouth (only to the very back of my throat - radiation site) has been a reoccurring problem too. I find the ACT lozenges I get at Walmart are great (as long as I don't just chew them up). The condition comes and goes. Biggest issue is that I'm an open mouth breather when I sleep and that dries me out.

    Good luck!

  • ERomanO
    ERomanO Member Posts: 319 Member
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    OKCnative said:

    I too suffered from

    I too suffered from neuropathy after treatment. So painful at night I'd have to get up and walk around. Then, sometimes during the day it would go from sharp pains to total numbness - to the point I'd have to sit down because I couldn't feel my leg.

    Doctor wanted to put me on meds, but I've been very resistant to any medication (used regulated THC during treatment for pain and nausea to avoid taking any opioids).

    Doctor said if I wouldn't take pills then I had to drastically increase my physical activity. I began cycling classes at my local gym (1 hour high intensity twice a day) and started standing up at my desk while working.

    Fortunately, within 6 weeks all signs of neuropathy went away.

    Dry mouth (only to the very back of my throat - radiation site) has been a reoccurring problem too. I find the ACT lozenges I get at Walmart are great (as long as I don't just chew them up). The condition comes and goes. Biggest issue is that I'm an open mouth breather when I sleep and that dries me out.

    Good luck!

    It seems like the first step

    It seems like the first step to dealing these long term side effects is accepting that they are here to stay. Now that I've done that I can just get on with doing what I need to do to mitigate the symptoms.  If one or both goes away, that's a bonus!  I read an older post where someone said that they had dry mouth for 10 years, then all of us sudden the saliva turned on and he was back to normal (or very close to it).  That would be cool.eventually 

    I don't notice the neuropathy much when I'm active, but I should probably get with a aerobic plan as well until the warm months allows me to get my bike out on the trails.  But for now the Gabapentin is helping.  I take about every 4 hours, but I try to stretch out the dose intervals, whenever possible - 5-6 hours seems to be the max.  Sometimes I have to take the next dose in less than 4 hours.

    As for the dry mouth, I'm doing the Act lozenges, as well as store brands, and Xylimelt, and Biotene products.  It all helps but I'm still trying to work out what works best and get into a routine.

  • Barbaraek
    Barbaraek Member Posts: 626
    edited February 2019 #12
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    Knock knock

    yes, I can empathize with your post. We never expected to get back to pre-diagnosis or pre-treatment levels, but we had made adjustments to accommodate for all the post chemo-radiation side effects: water bottle/spritzer always on hand, easier to swallow foods and meals for swallowing difficulties, binaural hearing aids for the hearing loss and to be truthful we were getting accustomed to the “new normal”. Then knock knock - 3 years post we have bilateral vocal cord paralysis and a neurogenic cough. Well damn! Evidently this is an extremely rare complication. During treatment one of the docs half jokingly and half exasperatingly called my husband a “complication magnet”. Bingo! I guess the best thing I can say is hang in there, try to find the silver lining, and keep searching for ways to accommodate and adapt.

    on the dry mouth issue - xylitol has helped us some. There is also a product called Lubricity that is a spray you use 3x a day - non prescription, and there is a newer prescription spray made by 3M..we just got a sample from our dentist. Also some people have had good success with acupuncture, although that wasn’t our experience. Good luck with the dry mouth!

     

    Barbaraek (caregiver to Boris)

  • MGC
    MGC Member Posts: 72 Member
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    Setbacks from the Rads

    Well I have to admit that Barbaraek posted a pretty complete list of side effects. I have had all of them. The dry mouth is actually not bad at all now 9 years later but it was brutal for several years. Still have insane neuropathy on the side of my head, ear & neck. 3 gabapentin a day and 3 pentoxyiflline with vitamin E as well. Not sure if it helps but I have been taking them for years. Also suffering from the slow death of the Hypoglossal nerve which controls the tongue. Dealing with that for 4 years now. Extreme caution dealing with that but managing well over all. Then Knock Knock. Severe Trismus set in a few months ago. Everyone who does not already experience Trismus should take head to preventing it. It's too late for me and there is no real solution. I am completely healthy otherwise. If I could turn the clock back I would have done Hyperbaric Oxygen treatments years ago. I am doing them now and its helping some but not really the Trismus. Also some lyphedema just showed up as well in cheek and Jaw. 

  • ERomanO
    ERomanO Member Posts: 319 Member
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    Barbaraek said:

    Knock knock

    yes, I can empathize with your post. We never expected to get back to pre-diagnosis or pre-treatment levels, but we had made adjustments to accommodate for all the post chemo-radiation side effects: water bottle/spritzer always on hand, easier to swallow foods and meals for swallowing difficulties, binaural hearing aids for the hearing loss and to be truthful we were getting accustomed to the “new normal”. Then knock knock - 3 years post we have bilateral vocal cord paralysis and a neurogenic cough. Well damn! Evidently this is an extremely rare complication. During treatment one of the docs half jokingly and half exasperatingly called my husband a “complication magnet”. Bingo! I guess the best thing I can say is hang in there, try to find the silver lining, and keep searching for ways to accommodate and adapt.

    on the dry mouth issue - xylitol has helped us some. There is also a product called Lubricity that is a spray you use 3x a day - non prescription, and there is a newer prescription spray made by 3M..we just got a sample from our dentist. Also some people have had good success with acupuncture, although that wasn’t our experience. Good luck with the dry mouth!

     

    Barbaraek (caregiver to Boris)

    So far...

    The Xylitol products - lozenges and toothpaste - are doing the trick.  Give Boris my best.  Sounds like he just can't cath a break.  :-(

  • ERomanO
    ERomanO Member Posts: 319 Member
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    MGC said:

    Setbacks from the Rads

    Well I have to admit that Barbaraek posted a pretty complete list of side effects. I have had all of them. The dry mouth is actually not bad at all now 9 years later but it was brutal for several years. Still have insane neuropathy on the side of my head, ear & neck. 3 gabapentin a day and 3 pentoxyiflline with vitamin E as well. Not sure if it helps but I have been taking them for years. Also suffering from the slow death of the Hypoglossal nerve which controls the tongue. Dealing with that for 4 years now. Extreme caution dealing with that but managing well over all. Then Knock Knock. Severe Trismus set in a few months ago. Everyone who does not already experience Trismus should take head to preventing it. It's too late for me and there is no real solution. I am completely healthy otherwise. If I could turn the clock back I would have done Hyperbaric Oxygen treatments years ago. I am doing them now and its helping some but not really the Trismus. Also some lyphedema just showed up as well in cheek and Jaw. 

    Trismus

    That's a new one on me.  What is it, exactly?  How can we prevent it?  I never saw that even mentioned in all the literature I've received from my docs. 

  • Barbaraek
    Barbaraek Member Posts: 626
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    ERomanO said:

    Trismus

    That's a new one on me.  What is it, exactly?  How can we prevent it?  I never saw that even mentioned in all the literature I've received from my docs. 

    Trismus

    Is kind of like lockjaw. You can’t open your jaw very wide often it’s because of fibrosis from the radiation. Exercises help and we use that Therabite device. Our doc always measures how wide Boris can open his mouth - if you can’t open to eat and chew, you tend not to eat and get those important calories! For us we gave so many other side effects, this one didn’t seem too bad but our doc said we have to take it seriously. Some folks have very severe trismus, ours is not so bad. The dentist has noticed a difference since using the Therabite though and has had an easier time caring for all those teeth screwed up by radiation. 

    I very much have a love-hate relationship with radiation. It killed the dang tumor, but it sure left us with a lot of residual problems.

    Barbaraek

  • ERomanO
    ERomanO Member Posts: 319 Member
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    Barbaraek said:

    Trismus

    Is kind of like lockjaw. You can’t open your jaw very wide often it’s because of fibrosis from the radiation. Exercises help and we use that Therabite device. Our doc always measures how wide Boris can open his mouth - if you can’t open to eat and chew, you tend not to eat and get those important calories! For us we gave so many other side effects, this one didn’t seem too bad but our doc said we have to take it seriously. Some folks have very severe trismus, ours is not so bad. The dentist has noticed a difference since using the Therabite though and has had an easier time caring for all those teeth screwed up by radiation. 

    I very much have a love-hate relationship with radiation. It killed the dang tumor, but it sure left us with a lot of residual problems.

    Barbaraek

    Taking things seriously

    I have wondered why my docs keep going over and over key items with me everytime I see them.  Well, it's because they don't want me to take my eyes off the road and become complacent.  So far I can still turn my head a good 85° in either direction and open my mouth wide (it has increased from my 3 month to my 6 month checkup), but I know I have to keep after it.

  • ruben1
    ruben1 Member Posts: 14
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    neuropathy

    I too suffer from neuropathy,  I am 1 year NED.  Neuropathy is the worst.  I take gabapentin also and have tried the holistic route also, to no avail.  If I stop the gaba it does come back worse so I stay on it.  Dry mouth is bad but I do manage,  water bottle is a part of me  and gum,  taste is @ 50 % and swallowing is getting a little more difficult,  see my ENT  next month,  will probably disc options.  My ONC'S say side effects are what they are,  probably here to stay  but I also am here!!  There are good days and bad days but I will take them,  I have had one ocurrence but it was removed with no margins. Just glad to be here  really.  Glad to hear the treatment was a breeze for you,  not so on my part but so happy that we are all here on this site talking with one another.   Lets all hang in there.  Proud to be a survivor !!!

  • ERomanO
    ERomanO Member Posts: 319 Member
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    ruben1 said:

    neuropathy

    I too suffer from neuropathy,  I am 1 year NED.  Neuropathy is the worst.  I take gabapentin also and have tried the holistic route also, to no avail.  If I stop the gaba it does come back worse so I stay on it.  Dry mouth is bad but I do manage,  water bottle is a part of me  and gum,  taste is @ 50 % and swallowing is getting a little more difficult,  see my ENT  next month,  will probably disc options.  My ONC'S say side effects are what they are,  probably here to stay  but I also am here!!  There are good days and bad days but I will take them,  I have had one ocurrence but it was removed with no margins. Just glad to be here  really.  Glad to hear the treatment was a breeze for you,  not so on my part but so happy that we are all here on this site talking with one another.   Lets all hang in there.  Proud to be a survivor !!!

    I am happy to be here as well

    I am happy to be here as well.  Every so often I need to put things in persective, and I get a lot of that here.  Thank you all!

  • patricke
    patricke Member Posts: 570
    Options
    Congratulations

    Hey ERO, congratulations on getting the neuropathy under control, edma minimalized, and getting your cloresterol level down by half; those are all excellent health improvements.  Now, let me be the first to tell you that after my BOT surgery in 2000, I carried small bottles of Mouthkote with me everywhere (like my AE card), and my mouth and sinus system manufactured industrial grade viscosity mucus.  My salivary glands had been fried by RAD treatment, was what I thought (see where I'm going with this).  In 2011, I was diagnosed with a tumor on the entrance to my trachea (thank you for the gift RADS), which necessitated that I have a total laryngectomy, and at the same time I got the bonus of getting a twofer of having my esophagus rebuilt during the surgery. The entrance of my esophagus had been fibrosed by the RADs, resulting in me being a PEG tube feeder for the next 11 years; my motto was that "if it flows, it goes" down my tube, e.g., blended food (Vitamix blenders totally rocked my world), coffee, spirits (yes, I kept my spirits up). The PEG tube didn't, by the way, slow down my active outdoor life from doing a half marathon to mountain hiking; and my true love, surfing.   Much to my very happy surprise, not long after my laryngectomy, and once more enjoying the wonders of actually swallowing and tasting my oh so delicious blended meals, my ENT, also surprised, informed me that my saliva glands had awakened and were once more pumping out saliva; yeeeee haaaaaw, ya gotta love it!  So, now you've read one report of the return of saliva, and yep, I do sometimes wake up with a bit of drool running down my cheek, about which I have noooo complaints. You just never know, I do hope that your saliva glands are only in a state of suspended animation, and will some day surprise you too.  Keep in mind that our unique journeys are rarely straight forward, but take various twists and turns, with sometimes steps backward to make for an improvement spring forward.  The keys to our surthriving is flexibility, adabtibility, creativity, and positive attitude.  I wish you the best in the journey of your continued recovery.

    Patrick      

  • ERomanO
    ERomanO Member Posts: 319 Member
    Options
    patricke said:

    Congratulations

    Hey ERO, congratulations on getting the neuropathy under control, edma minimalized, and getting your cloresterol level down by half; those are all excellent health improvements.  Now, let me be the first to tell you that after my BOT surgery in 2000, I carried small bottles of Mouthkote with me everywhere (like my AE card), and my mouth and sinus system manufactured industrial grade viscosity mucus.  My salivary glands had been fried by RAD treatment, was what I thought (see where I'm going with this).  In 2011, I was diagnosed with a tumor on the entrance to my trachea (thank you for the gift RADS), which necessitated that I have a total laryngectomy, and at the same time I got the bonus of getting a twofer of having my esophagus rebuilt during the surgery. The entrance of my esophagus had been fibrosed by the RADs, resulting in me being a PEG tube feeder for the next 11 years; my motto was that "if it flows, it goes" down my tube, e.g., blended food (Vitamix blenders totally rocked my world), coffee, spirits (yes, I kept my spirits up). The PEG tube didn't, by the way, slow down my active outdoor life from doing a half marathon to mountain hiking; and my true love, surfing.   Much to my very happy surprise, not long after my laryngectomy, and once more enjoying the wonders of actually swallowing and tasting my oh so delicious blended meals, my ENT, also surprised, informed me that my saliva glands had awakened and were once more pumping out saliva; yeeeee haaaaaw, ya gotta love it!  So, now you've read one report of the return of saliva, and yep, I do sometimes wake up with a bit of drool running down my cheek, about which I have noooo complaints. You just never know, I do hope that your saliva glands are only in a state of suspended animation, and will some day surprise you too.  Keep in mind that our unique journeys are rarely straight forward, but take various twists and turns, with sometimes steps backward to make for an improvement spring forward.  The keys to our surthriving is flexibility, adabtibility, creativity, and positive attitude.  I wish you the best in the journey of your continued recovery.

    Patrick      

    I knew that I had read

    I knew that I had read somewhere about someone's saliva glands returning to normal, and when I re-read this thread... BOOM,,, there it was!  Good for you!  You know, I think finding some drool on my shirt would be cause for a major celebration!  If I have to wait 11 years, so be it!

    Okay, since I started this thread I have discovered (just recently) that the humidifier on my furnace has been non-functional... for two winters!  The guy that installed a new tee and valve didn't install it correctly and almosst completely blocked the water flow to the humidifier.  Once I get him out to repair it, and get the humidity in my house back up to 35-40 percent I'll be much more comfortable (regarding dry mouth) while I'm at home.  In the meantime I'm putting a portable humidifier in whatever room I'm spending thr majority of my time in throughout the day, and that helps!   I'm finding that gum and those Act lozenges are my favorite while I'm out and about. I still keep a small bottle of water in my car, but only need to take an occasional sip.

    The neuropathy?... well, it's still here, it stinks, and it's a tricky bugger.  It sort of comes and goes, but not to any specific timetable.  There are times of the day when I can barely notice it, and other times when it goes anywhere from annoying to downright painful.  But all in all I'm getting by.  A couple times, when I was having a bit of a flare-up, my hands turned very red and felt like they were burning.  I thought this too may be as a result of the dry air in my house, and possibly because I haven't been drinking enough water.  So I started guzzling water all day and have not had thr same red, painful hands like I did before.  Yup, trying to figure things out is an ongoing process.

    As I read about all the members that have had swallowing problems, or neuropathy so sever that they could no longer do day-to-day tasks with their hands, etc., I thank God for my little annoyances.  I still can play my guitar (and well enough to get paid to do so), and look forward to a humid spring and a warm muggy summer when I can hit the bike trails.  If my mouth is still so dry that I have to keep sipping water while I ride, I'll just base ther length of my ride on how much water I can carry with me. No problem.

    Best wishes to you!

    Eugene