New to the group!

Yeshua7

Good evening,

I'm a 42 year old male and just completed 7 sessions of chemo (cisplatin), 35 sessions of radiation for Head & Neck a week ago. SCC, HPV+. I'm so glad the treatment is done. I went through the first 4 weeks of radiation with not too much issue. I experienced the saliva thickening and definitely the metallic taste then loss of taste buds. Around week 5 I started getting mouth sores and my throat became real sore. It became hard to eat due to pain and I started losing weight. At the end of week 7 I was down about 10-12lbs from not eating or drinking for about 4 days due to pain. I am 7 days post treatment and the mouth sores are healing and the throat is doing better. I ended up having a PEG tube placed on Friday due to weight loss and not being able to take anything by mouth due to the pain of mouth sores and pain swallowing. I know everyone's journey is different but I am definitely looking for any input on getting back to eating as soon as possible, getting off of the PEG, getting rid of the mouth sores and swallowing pain. (Oh, I tried the lidocaine mouth wash and rinsing with baking soda). I can't wait to eat my favorite foods again and have my ability to eat, taste, and swallow back. God bless all of you and I wish you a speedy recovery. Thanks in advance for any advice and the  support!

ozymandible

Hello.  Sorry you're having

Hello.  Sorry you're having such a hard time.  I(57, F)still have 8 more rads and 1 or 2 chemos depending on whether or not I stick to my rads schedule.  I seemed to have my symptoms hit me very suddenly as far as mouth sores and loss of taste.  

One thing that helped my mouth sores heal in a couple of days(enough to eat liquified soup by mouth)was adding glutamine powder to water-about a teaspoon for 8 ounces-and holding a small amount in my mouth as long as possible before swallowing.

I haven't used magic mouthwash.  I tried once and it burned my mouth.  I am only using 2% viscous lidocaine gel applied with a qtip as needed.  I do it before I put in my mouth guard and also before I brush my teeth and once in a while just for ykw and giggles(not).

Some things that helped me get a little bit of taste back(my devil is salt, not metal)were coconut(oral)water, coconut(oral)milk, trying to stay hydrated even if I have to put water in my tube.

I have been able to eat homemade cream of potato, cream of chicken and cream of broccoli soups by mouth.  Going to try something with caulifower that another member recommended also planning cream lf asparagus.

I picked up some powdered organic bone broth mix from Costco.  Not many calories but satisfying taste for hydration.  I have had better luck tasting home cooked savory items.  The smoothies I made from tubie formula, instant breakfast and protein powder just taste like salt or chalk now.  I am wondering if I'm maybe not supposed to eat that....Ensure tastes good by comparison!  I have more energy on homemade food.

I have been just throwing everything at the wall and hoping at least one thing sticks!  : ). Luckily so far there are a few but they could be gone tomorrow.

MG is right it will just take time and you'll just have to keep on trying different things until something works for you.

 

Ozy

motorcycleguy

Yeshua7,

Welcome to the group!

Overall, you seem to be doing relatively well, and I get a sense you are a hardy person, with a great attitude (which is an immense blessing).

Getting back to normal (things like taste) just takes time. The feeding tube is pretty much a given, and it's actually pretty amazing you got this far without it. My suspicion is that you won't need it for a long time.

I remember just wanting to get back to a normal life so bad ... and I got there - but it was a few months.

I rinsed with some mixture of salt and baking soda, which seemed to work pretty well.

Hang in there and when the pain subsides, keep trying to eat and drink new things. 

I wish you the best of luck, and the speediest possible recovery!

MG

wbcgaruss

Hello Yes and Welcome

To the club, nobody wants to be in. If you just finished treatment I would agree with MG you are in recovery time and it is going to take time, you can't hurry it. Use the salt water baking soda rinse as much as you need to to keep mucous under control and help soothe sores, etc. Please check out THE SUPERTHREAD at the top of the H&N page there is much good info there. You can't rush recovery just get as much as you can for nourishment through your tube for now and you will need a good bit. My nurse navigator said I should get 6 containers in a day to avoid losing weight and help recovery. At some point, I slept a lot so if you are tired rest. Get plenty of fluids in your tube. Don't be in a hurry to get rid of your tube. You may not like it now I know I didn't like the idea at first but later on when I couldn't swallow anything I realized it was my friend. Hopefully, they have given you swallowing exercises and have set you up with a speech therapist-very important. This recovery is not like a cold and it is measured in weeks and months. It will take time for all the radiation swelling to go down in your throat and other areas and for your swallowing to resume and get your taste back. Again swallowing exercises are important because you can forget how to swallow and will have to learn all over again. My cancer team told me it would take a year to do this and they were very close, that being from treatment start to feeling pretty good I think. I could not swallow for at least 3 or 4 months but my memory fades on it. They would not remove my feeding tube until I could maintain my weight for 2 weeks eating and not using it. That seems like a good guideline. Your recovery may be more or less each person is different. I had throat cancer with 2 weeks of 24-hour chemo in the hospital separated by a week or 2 so my blood count would come back up. Then I went into the treatment plan which was chemo beginning, middle, and at the end of35 radiation treatments for 7 weeks. Wishing you the best-Take care-God Bless-Russ

 

tbret

I am sorry it takes as much time as it takes

It will take as much time as it takes for you to get back to hitting on all cylinders.   There's no way that I can guarantee you won't be hit in the head by a meteorite, so nobody can guarantee anything, but... there's a very,very good chance that you will be back to something close to normal... eventually.  Maybe that's a few months, maybe longer.  It won't be days or a few weeks.   I only say that to encourage you not to get discouraged.  It might not happen for you immediately.  That's supposed to be reassuring that you WILL get back to normal, or a new normal that's normal enough. 

I was told just last week that I now have "good color."  (translation:  I'm fat again and they didn't want to say that.)

As a saliva substitute for eating some foods I found that using very thin "Cream of Wheat" helped me for a couple of weeks.  (a bite of steak, a teaspoon of Cream of Wheat)   I know it sounds "awful" but I couldn't taste it anyway and it was about the mechanics and the nourishment.  (I can taste both steak and Cream of Wheat now and sip non-alcoholic beer with my steak, not breakfast cereal.)  If you can't stand the thought of that, I would encourage you to find your own saliva/swallow aid and eat as soon as you can even if it doesn't taste good.  I held my nose at times and just chewed and swallowed.  I waited too long to start working on it in earnest and lost too much weight.

I asked for a PEG and they told me "no,"and instructed me to eat whether I wanted-to or not.

The only thing that helped me with the pain was the "Magic Mouthwash," but that stage of things didn't last long.  I hope it won't last for you.

The "Superthread" is full of information you need to know so that what comes next doesn't come as a surprise.  I was surprised repeatedly and did not understand why none of the three doctors, two nurses, five lab techs, or even the ladies at the reception desk had not mentioned some of what I needed to know.   It's there in the Superthread.

God Bless You back.

Yep, it isn't any fun, but it does get better.

Oh, take care of your teeth.  Being so young you have a lot of time for things to go wrong.  Do what they tell you about your teeth.  I found an "air flosser" to be particularly helpful.

I am four and a half years out and still dealing with my new normal which will include taking my son for a pizza and beer (fake for me) tonight. Then I'll take care of my teeth and feel guilty about my weight gain.

 

Yeshua7

motorcycleguy said:

Yeshua7,

Welcome to the group!

Overall, you seem to be doing relatively well, and I get a sense you are a hardy person, with a great attitude (which is an immense blessing).

Getting back to normal (things like taste) just takes time. The feeding tube is pretty much a given, and it's actually pretty amazing you got this far without it. My suspicion is that you won't need it for a long time.

I remember just wanting to get back to a normal life so bad ... and I got there - but it was a few months.

I rinsed with some mixture of salt and baking soda, which seemed to work pretty well.

Hang in there and when the pain subsides, keep trying to eat and drink new things. 

I wish you the best of luck, and the speediest possible recovery!

MG

Thanks MG. I'm glad I found

Thanks MG. I'm glad I found this group and I appreciate the feedback and support from you.

Yeshua7

wbcgaruss said:

Hello Yes and Welcome

To the club, nobody wants to be in. If you just finished treatment I would agree with MG you are in recovery time and it is going to take time, you can't hurry it. Use the salt water baking soda rinse as much as you need to to keep mucous under control and help soothe sores, etc. Please check out THE SUPERTHREAD at the top of the H&N page there is much good info there. You can't rush recovery just get as much as you can for nourishment through your tube for now and you will need a good bit. My nurse navigator said I should get 6 containers in a day to avoid losing weight and help recovery. At some point, I slept a lot so if you are tired rest. Get plenty of fluids in your tube. Don't be in a hurry to get rid of your tube. You may not like it now I know I didn't like the idea at first but later on when I couldn't swallow anything I realized it was my friend. Hopefully, they have given you swallowing exercises and have set you up with a speech therapist-very important. This recovery is not like a cold and it is measured in weeks and months. It will take time for all the radiation swelling to go down in your throat and other areas and for your swallowing to resume and get your taste back. Again swallowing exercises are important because you can forget how to swallow and will have to learn all over again. My cancer team told me it would take a year to do this and they were very close, that being from treatment start to feeling pretty good I think. I could not swallow for at least 3 or 4 months but my memory fades on it. They would not remove my feeding tube until I could maintain my weight for 2 weeks eating and not using it. That seems like a good guideline. Your recovery may be more or less each person is different. I had throat cancer with 2 weeks of 24-hour chemo in the hospital separated by a week or 2 so my blood count would come back up. Then I went into the treatment plan which was chemo beginning, middle, and at the end of35 radiation treatments for 7 weeks. Wishing you the best-Take care-God Bless-Russ

 

Thank you Russ!

Thank you Russ!

Yeshua7

ozymandible said:

Hello.  Sorry you're having

Hello.  Sorry you're having such a hard time.  I(57, F)still have 8 more rads and 1 or 2 chemos depending on whether or not I stick to my rads schedule.  I seemed to have my symptoms hit me very suddenly as far as mouth sores and loss of taste.  

One thing that helped my mouth sores heal in a couple of days(enough to eat liquified soup by mouth)was adding glutamine powder to water-about a teaspoon for 8 ounces-and holding a small amount in my mouth as long as possible before swallowing.

I haven't used magic mouthwash.  I tried once and it burned my mouth.  I am only using 2% viscous lidocaine gel applied with a qtip as needed.  I do it before I put in my mouth guard and also before I brush my teeth and once in a while just for ykw and giggles(not).

Some things that helped me get a little bit of taste back(my devil is salt, not metal)were coconut(oral)water, coconut(oral)milk, trying to stay hydrated even if I have to put water in my tube.

I have been able to eat homemade cream of potato, cream of chicken and cream of broccoli soups by mouth.  Going to try something with caulifower that another member recommended also planning cream lf asparagus.

I picked up some powdered organic bone broth mix from Costco.  Not many calories but satisfying taste for hydration.  I have had better luck tasting home cooked savory items.  The smoothies I made from tubie formula, instant breakfast and protein powder just taste like salt or chalk now.  I am wondering if I'm maybe not supposed to eat that....Ensure tastes good by comparison!  I have more energy on homemade food.

I have been just throwing everything at the wall and hoping at least one thing sticks!  : ). Luckily so far there are a few but they could be gone tomorrow.

MG is right it will just take time and you'll just have to keep on trying different things until something works for you.

 

Ozy

Thank you Ozy

Thank you Ozy

ERomanO

Welcome, Yeshua7!

I didn't need a PEG tube, so I can't help you there.  But there are many others that can.  Lots of good advice already, but I will second tbret's words of caution about taking care of your teeth.  Take care of them like you never have before.  And stretch those neck muscles daily.

Take care,

Eugene

Yeshua7

tbret said:

I am sorry it takes as much time as it takes

It will take as much time as it takes for you to get back to hitting on all cylinders.   There's no way that I can guarantee you won't be hit in the head by a meteorite, so nobody can guarantee anything, but... there's a very,very good chance that you will be back to something close to normal... eventually.  Maybe that's a few months, maybe longer.  It won't be days or a few weeks.   I only say that to encourage you not to get discouraged.  It might not happen for you immediately.  That's supposed to be reassuring that you WILL get back to normal, or a new normal that's normal enough. 

I was told just last week that I now have "good color."  (translation:  I'm fat again and they didn't want to say that.)

As a saliva substitute for eating some foods I found that using very thin "Cream of Wheat" helped me for a couple of weeks.  (a bite of steak, a teaspoon of Cream of Wheat)   I know it sounds "awful" but I couldn't taste it anyway and it was about the mechanics and the nourishment.  (I can taste both steak and Cream of Wheat now and sip non-alcoholic beer with my steak, not breakfast cereal.)  If you can't stand the thought of that, I would encourage you to find your own saliva/swallow aid and eat as soon as you can even if it doesn't taste good.  I held my nose at times and just chewed and swallowed.  I waited too long to start working on it in earnest and lost too much weight.

I asked for a PEG and they told me "no,"and instructed me to eat whether I wanted-to or not.

The only thing that helped me with the pain was the "Magic Mouthwash," but that stage of things didn't last long.  I hope it won't last for you.

The "Superthread" is full of information you need to know so that what comes next doesn't come as a surprise.  I was surprised repeatedly and did not understand why none of the three doctors, two nurses, five lab techs, or even the ladies at the reception desk had not mentioned some of what I needed to know.   It's there in the Superthread.

God Bless You back.

Yep, it isn't any fun, but it does get better.

Oh, take care of your teeth.  Being so young you have a lot of time for things to go wrong.  Do what they tell you about your teeth.  I found an "air flosser" to be particularly helpful.

I am four and a half years out and still dealing with my new normal which will include taking my son for a pizza and beer (fake for me) tonight. Then I'll take care of my teeth and feel guilty about my weight gain.

 

Thanks Tbret

Thanks Tbret

Yeshua7

ERomanO said:

Welcome, Yeshua7!

I didn't need a PEG tube, so I can't help you there.  But there are many others that can.  Lots of good advice already, but I will second tbret's words of caution about taking care of your teeth.  Take care of them like you never have before.  And stretch those neck muscles daily.

Take care,

Eugene

Thanks Eugene 

Thanks Eugene