90 days post treatments symptoms lymphedemia, hypothyroidism and dry mouth....

RodgerM

Hi, 

90 days post treatments effects....  Dry mouth especially at night affecting my quality of sleep.  I use a humidifier air purifier as well as plenty of water and I still wake up several times in the night super dehydrated..   lymphedema In the neck showed up about two weeks ago,  I'm currently receiving occupational therapy once a week as well as using neck wraps and tape to help move fluid. Last week bloodwork came back results were hypothyroidism, on meds.

I still have issue eating and mild pain during most meals,  seems like the throat gets tired during a meal and begins to hurt around half way thru, if I stop eating then it will subside and then I can attempt to eat the rest of the meal later on that day.  The mouth sores and the pain in the throat have been a lingering side effects that has improve but is improv still worrisome.   Taste buds have returned and I can taste most foods but not all of them but it doesn't seem to be a concern anymore.

Lymphedema , is painless, but is hard to accept since it is visually noticeable.  hypothyroidism has been a little difficult with the lack of energy but hopefully soon with meds will get the right dosage and things will level out.

physically  I've returned to the levels that I had prior to treatments which is positive and a good sign of things recovering.  All I can do is continue to be vigilant in managing these post symptoms as they occur, tho I worry about longer term effects.   

Recover is another chapter of this journey, and I have accepted that this process will take much longer then I expected so if  have any suggestion , ideas on how to manage these symptom, or can share your experience with them, please let me know.

Next week I have my first pet scan so of course this weighs on my mind but i feel confident that there will be a cure here! 
Thanks again this forum has been so help and I am thankful for all your comments prayers and support.

rodger 

 

 

I know that these symptoms are part of the curative treatments of HPV neck and throat cancer and I can only hope that in time some of these symptoms will lessen resolve and become more manageable.  

wbcgaruss

Rodger Thanks For

The update and keeping us posted. Like you my recovery was a bit difficult and longer than I expected. But my cancer team told me upfront that it is rough treatment and the nurse at the radiation docs told me I might as well figger a year of my life dealing with this and for me, she was right on. It looks by your description of your recovery you are experiencing normal symptoms and temporary leftovers from your treatment and that you are handling it well. Just keep on keeping on and persevere through each day. One day you will wake up and start moving around and say to yourself "Ya know I feel pretty darn good today". I had the lymphedema and got some physical therapy and they gave me some at-home exercises to do and eventually, it will go away as they say the lymph system makes new ways for the system to drain. Here is a good video on Lymphatic drainage massage I had saved and you may pick up a couple of pointers from it as the gal covers it thoroughly  https://www.youtube.com/watch?v=VQdLZ26r-rU

I read you are having some difficulty eating but stick with it and use those swallowing muscles. I assume they gave you swallowing exercises to do if not check with your speech therapist. I was already taking pills for an underactive thyroid and for me it didn't change much but for some folks, their thyroid levels changed a lot and this is something the docs keep a watch on in H&N cancer folks. All in all it sounds like you are doing very well for what you went through. I guess the only thing I may be able to suggest to you is try Xylimelts for your dry mouth at night. They are tablets that help with a dry mouth at night and other times. During the day you can drink to keep your mouth moist but not at night. These lozenges are a great help and have one side that sticks to your tooth or gum and slowly dissolves. Because they adhere to your tooth or gum they are safe to use at night and you won't swallow them and get them caught in your throat. A number of folks use them on here and I remember one fella said he put 2 in at night and was good for the night.  Here is a link to Oracoats website and you can buy them on eBay and many other sites also and if you are lucky you can find them locally at a drug store.  https://www.oracoat.com/

Prayers your way for your scan coming up and we are praying for a clear and clean scan. Like all of us, you are having "Scanxiety" a well-known malady of cancer folks. But be strong and keep busy to think about it less. There was a lady on here that always said when she had a scan coming up that she had scanxiety and was hanging off the ceiling fan concerned about it. Many on here fondly remember Phrannie as a true cancer warrior. Here is a link to a great old post of her with scanxiety and the good wishes she got and it may help you and others to read the support  https://csn.cancer.org/node/265957

OK Rodger hang in there you got this Wishing You The Best-Take Care-God Bless-Russ

RodgerM

wbcgaruss said:

Rodger Thanks For

The update and keeping us posted. Like you my recovery was a bit difficult and longer than I expected. But my cancer team told me upfront that it is rough treatment and the nurse at the radiation docs told me I might as well figger a year of my life dealing with this and for me, she was right on. It looks by your description of your recovery you are experiencing normal symptoms and temporary leftovers from your treatment and that you are handling it well. Just keep on keeping on and persevere through each day. One day you will wake up and start moving around and say to yourself "Ya know I feel pretty darn good today". I had the lymphedema and got some physical therapy and they gave me some at-home exercises to do and eventually, it will go away as they say the lymph system makes new ways for the system to drain. Here is a good video on Lymphatic drainage massage I had saved and you may pick up a couple of pointers from it as the gal covers it thoroughly  https://www.youtube.com/watch?v=VQdLZ26r-rU

I read you are having some difficulty eating but stick with it and use those swallowing muscles. I assume they gave you swallowing exercises to do if not check with your speech therapist. I was already taking pills for an underactive thyroid and for me it didn't change much but for some folks, their thyroid levels changed a lot and this is something the docs keep a watch on in H&N cancer folks. All in all it sounds like you are doing very well for what you went through. I guess the only thing I may be able to suggest to you is try Xylimelts for your dry mouth at night. They are tablets that help with a dry mouth at night and other times. During the day you can drink to keep your mouth moist but not at night. These lozenges are a great help and have one side that sticks to your tooth or gum and slowly dissolves. Because they adhere to your tooth or gum they are safe to use at night and you won't swallow them and get them caught in your throat. A number of folks use them on here and I remember one fella said he put 2 in at night and was good for the night.  Here is a link to Oracoats website and you can buy them on eBay and many other sites also and if you are lucky you can find them locally at a drug store.  https://www.oracoat.com/

Prayers your way for your scan coming up and we are praying for a clear and clean scan. Like all of us, you are having "Scanxiety" a well-known malady of cancer folks. But be strong and keep busy to think about it less. There was a lady on here that always said when she had a scan coming up that she had scanxiety and was hanging off the ceiling fan concerned about it. Many on here fondly remember Phrannie as a true cancer warrior. Here is a link to a great old post of her with scanxiety and the good wishes she got and it may help you and others to read the support  https://csn.cancer.org/node/265957

OK Rodger hang in there you got this Wishing You The Best-Take Care-God Bless-Russ

Thank you Russ for all that!

Thank you Russ for all that! Some good info and encouraged from your comments.  Rodger ... 

ERomanO

Xylamelts at night

Xylamelts at night help a lot.  I only use one, but my dentist has said that my mouth isn't as dry as other H&N cancer survivor patients he has.  I would say try one and see how it works for you.  If it doesn't quite get you through the night, try two.  I find they are also good anytime I am going to be doing an activity for a prolonged amount of time where I can't or don't want to be constantly drinking water or popping Act dry mouth lozenges (which are very good as well).  I find that Biotine oral rinse works well, but only for short stretches (up to one hour), and if I'm not talking... like when I take my daily nap. :-)

I would say 90 days is just the beginning of recovery.  Things will change for the good or the worse as time moves on.  I didn't want to accept the term "new normal" at first, but that certainly is what life is all about now.  However, I try not be preoccupied by the things that have changed, and not for the better.  Instead I concentrate on what I can do that helps me feel better, and subsequently takes my mind off of the things that make me feel crappy.

All the best to you, Roger!

motorcycleguy

Rodger,

I remember the dry mouth at night. My nose would get plugged, and I'd breathe through my mouth. I'd wake up parched, drink water - then get up about every hour to pee. It was very rough to sleep, for those first few months.

Overall, though - it appears that your symptoms are reasonably normal. I remember how it felt to finish treatments. A person just wants SO BADLY to get back to normal ... and it just takes a little time.

You're staying on top of the challenges, and you sound like a fighter. My guess is that your life will look much more normal in 2-3 more months.

Hang in there!

MG

SuzJ

You are in the worst part of

You are in the worst part of the whole deal. Get a cimpression garment for your neck, you'll have a beautiful neck in no time

Thyroid, O how I miss thee! Meds help, just stay on top of getting levels tested

Pain eating, that I know. get the Dr to give you liquid Lydocaine, gargle before meals, like.. right before, it makes eating easier.

Dry mouth, before bed, suck or eat a sour candy, sour patch will do, it makes your mouth water

RodgerM

SuzJ said:

You are in the worst part of

You are in the worst part of the whole deal. Get a cimpression garment for your neck, you'll have a beautiful neck in no time

Thyroid, O how I miss thee! Meds help, just stay on top of getting levels tested

Pain eating, that I know. get the Dr to give you liquid Lydocaine, gargle before meals, like.. right before, it makes eating easier.

Dry mouth, before bed, suck or eat a sour candy, sour patch will do, it makes your mouth water

Thanks,  what kind of

Thanks,  what kind of compression garment ? suggestions .    

RodgerM

ERomanO said:

Xylamelts at night

Xylamelts at night help a lot.  I only use one, but my dentist has said that my mouth isn't as dry as other H&N cancer survivor patients he has.  I would say try one and see how it works for you.  If it doesn't quite get you through the night, try two.  I find they are also good anytime I am going to be doing an activity for a prolonged amount of time where I can't or don't want to be constantly drinking water or popping Act dry mouth lozenges (which are very good as well).  I find that Biotine oral rinse works well, but only for short stretches (up to one hour), and if I'm not talking... like when I take my daily nap. :-)

I would say 90 days is just the beginning of recovery.  Things will change for the good or the worse as time moves on.  I didn't want to accept the term "new normal" at first, but that certainly is what life is all about now.  However, I try not be preoccupied by the things that have changed, and not for the better.  Instead I concentrate on what I can do that helps me feel better, and subsequently takes my mind off of the things that make me feel crappy.

All the best to you, Roger!

Thanks , I have  tried the

Thanks , I have  tried the xylamekts post recovery, I didn't care for them to much during treat ment.  Ill give them a try again.   Yea, I keep telling myself things could be worse and being cancer free makes it all worth it.    The first 90 days were harder then I expected, I look forward to some more recovery now tgat ive accepted that this part of treatments just takes longer .    I know some things will resolve in time and others just won't.  
thanks again .. 

RodgerM

motorcycleguy said:

Rodger,

I remember the dry mouth at night. My nose would get plugged, and I'd breathe through my mouth. I'd wake up parched, drink water - then get up about every hour to pee. It was very rough to sleep, for those first few months.

Overall, though - it appears that your symptoms are reasonably normal. I remember how it felt to finish treatments. A person just wants SO BADLY to get back to normal ... and it just takes a little time.

You're staying on top of the challenges, and you sound like a fighter. My guess is that your life will look much more normal in 2-3 more months.

Hang in there!

MG

Thanks MG.  Yep, I like how

Thanks MG.  Yep, I like how you said I remember.  Looking forward to saying the same!   I agree I'll feel much better in 3 months.  This part of recovery is tough , you want so bad to be back to normal, but this part of the treatments is the slowest, body takes time to build back.  
But there's good news I am cancer free.. 

thanks again ! 

RodgerM

Pet scan came back free of cancer

I am officially in remission, cancer free..   I am victorious today.  ???. Next scan in 3 months! 

wbcgaruss

Wonderful, Wonderful News

On the PET Scan and may you have many more-Take Care-God Bless-Russ

AnotherSurvivor

Initially Xylimelts didn't

Initially Xylimelts didn't work for me, but I found as time went on things got better.  I tried every product for drymouth on the market and found none of them miraculous.  Right now closing in on five years post, and every year has seen an improvement on the dry mouth problem.  I also tried the neck rig for lymphedemia, it helped a bit, but simple healing time did more.   If I would suggest anything it's doing neck stretching exercises now!  If you got Rad, you have scar tissue.  Scar tissue does not heal, it only gets older and tighter.  So stretching now is about the only chance you have to change that.  I get spasm periodically, do self-massage, have a massage gizmo, and it always comes back.

One thing I have started doing in the last year, the dry mouth obviously reduces saliva, which leads to dental decay.  For that I was prescribed a special floride toothpaste.  I use that, but I have also been getting a floride treatment when I have a dental exam.  That runs $55 here 'bouts, but usually good for a year.  Yesterday was dental day, and no sign of problems.   Also, don't know if you were told, but one of the better detection methods for H&N tumors is an exam by a dentist.  Mine went thru her own bout with brest cancer, and she is all over the throat exam thing.  So I get basically three post-treatment exams in a year.

SuzJ

Jobst

Finally you are allowed to google look for lymphadema compression.. the one with the padding is best

RodgerM

AnotherSurvivor said:

Initially Xylimelts didn't

Initially Xylimelts didn't work for me, but I found as time went on things got better.  I tried every product for drymouth on the market and found none of them miraculous.  Right now closing in on five years post, and every year has seen an improvement on the dry mouth problem.  I also tried the neck rig for lymphedemia, it helped a bit, but simple healing time did more.   If I would suggest anything it's doing neck stretching exercises now!  If you got Rad, you have scar tissue.  Scar tissue does not heal, it only gets older and tighter.  So stretching now is about the only chance you have to change that.  I get spasm periodically, do self-massage, have a massage gizmo, and it always comes back.

One thing I have started doing in the last year, the dry mouth obviously reduces saliva, which leads to dental decay.  For that I was prescribed a special floride toothpaste.  I use that, but I have also been getting a floride treatment when I have a dental exam.  That runs $55 here 'bouts, but usually good for a year.  Yesterday was dental day, and no sign of problems.   Also, don't know if you were told, but one of the better detection methods for H&N tumors is an exam by a dentist.  Mine went thru her own bout with brest cancer, and she is all over the throat exam thing.  So I get basically three post-treatment exams in a year.

Thanks,  I like what I am

Thanks,  I like what I am hearing.    Time .... it just takes time!   
I have started neck stretching and will continue thanks for the suggestion. 
do you have any thyroid issues?

Very encouraging that your at your 5 year mark.   This dental treatment sounds like a good idea, I'll check with my dentist. 
thalinks for your comments

RodgerM

wbcgaruss said:

Wonderful, Wonderful News

On the PET Scan and may you have many more-Take Care-God Bless-Russ

YESSS... still have some of

YESSS... still have some of the mass in my neck about 80% reduced and I guess my body will take care of the rest.... 

RodgerM

SuzJ said:

Jobst

Finally you are allowed to google look for lymphadema compression.. the one with the padding is best

Lol on the goggle...  yea I

Lol on the goggle...  yea I've been doing a lot of that , but for the neck lymphedemia it seems it has the least resources... Ive been trying a much of different stuff.

 

wbcgaruss

RodgerM said:

Lol on the goggle...  yea I

Lol on the goggle...  yea I've been doing a lot of that , but for the neck lymphedemia it seems it has the least resources... Ive been trying a much of different stuff.

 

Rodger Here Is

A good video on

Lymphatic Drainage Massage for Face, Head, & Neck Swelling or Lymphedema - By a Physical Therapist

https://www.youtube.com/watch?v=VQdLZ26r-rU

Take care-God Bless-Russ

SuzJ

here ..

This is the padding - https://www.lymphedemaproducts.com/products/jovipak-universal-neck-pad.html?gclid=CjwKCAjw-qeFBhAsEiwA2G7Nl3Q95fmWHCcBC7C56-k4grOpgVicRgBW9eK7LIHn-NSEZKQfn0PjyxoCGxoQAvD_BwE

this is the actual garment https://www.lymphedemaproducts.com/products/jobst-epstein.html

It really worked on me - actually I should be wearing still, but its hard to find when I take it off in the middle of the night, while asleep, and throw it..