Taste is wacko & dry mouth - my 1st post

almostthere

I am a new cancer patient and have been reading up on some posts within the HNC Board. 

 

Back in January 2021, I was diagnosed with & had surgery to remove a metastatic melanoma cancer of the anterior neck lymph node along with some oral squamous cell carcinoma.

 

Four weeks of radiation and started immunotherapy every 2 weeks using Opdivo administered through a port.

 

Five months later, June 2021, I had surgery to remove another malignant melanoma lymph node on the left side of my neck.

 

No more radiation was recommended but continuing with immunotherapy of Opdivo AND the medication Yervoy with treatment being pushed out to every 3 weeks.

 

Difficult to put a date on this but I have lost my sense of taste whereas everything tastes like sawdust (an analogy from another post). Impossible to ingest any normal foods at this point.

 

I had a G-tube put in on July 7th and take all my daily nourishment via nutritional drinks prescribed for me. 

 

After losing 50 pounds (222 to 172) my weight has stabilized using the G-tube and have noticed an additional 4-5 pounds.

 

I’m reading here 2-3 times weekly to see in there is any new information on how to improve/speed up regaining my taste! 

 

Thank you….

wbcgaruss

Well First Let Me Say

Welcome to the forum and your first post and hopefully more as I am sure you have some advice to help other folks.
Sorry, you have to be here but we are all in the same boat, something we did not expect.
So I am guessing you started radiation after healing up a bit from your operation so let's just use March as a start time for rads.
So that brings us to April 1st for the estimated starting recovery date from radiation and chemo treatment.
These are just estimates on my part for this answer if I am terribly far off please feel free to correct me.
So you are 3 months or more out of treatment and having taste issues yet.
To be honest this is not surprising because recovery is a slow process in the head & neck game.
Recovery is measured in weeks and months, not days and weeks it is a long process.
So try to be patient and see what happens, you just don't know.
Some on here and in my local support group started getting some taste back pretty quickly and some not so.
Some got a lot back and some got a little and improvement stopped and that's where they are.
There are some on here and 2 guys in my local support group that never got their taste back and at this point probably never will.
I am in that situation, as I have just a little flavor from foods just enough to make eating not totally bland but some foods have no taste.
I am thankful I have a little.
Sometimes when I first start eating something is tastes really good for the first few bites and then quickly fades away.
Try what Logan says try spicy foods and chili and see if that will stimulate it.
I know someone on here said they ate loads of Wendy's chili and that was their go-to if there is a Wendy's near you give it a try and try Logan's suggestion of Roadhouse chili.
If there is a Smorgasboard near you go to that and you can try little bits of different kinds of food to see if you can find something that works for you.
Each person's case is different as it depends on the person's body, the number of rads, how strong they were, and the placement they had to use to defeat your cancer.
So it is actually a little early post-treatment at roughly 3 months out or a little more although I would have thought you would be experiencing a small amount of taste but with this treatment and recovery you never know.
So take heart and hang in there you still have plenty of time as there are a few on here that have experienced taste changes as much as 2 years out or more.
Can you eat and swallow OK and the feeding tube is because everything is so bland you can't stand to eat or do you have swallowing issues??
Also please take a look at the SUPERTHREAD at the top of the page as it is loaded with info.
And lastly NEGU (Never Ever Give Up)
Wishing you the best-Take care-God Bless-Russ

 

 

 

Logan51

spicy

foods, for me, were the first to really register with my taste buds. I became, yes I'll admit it, a Roadhouse Chili addict! As for taste returning- did take a couple months.

motorcycleguy

almost,

Loss of taste is a pretty common side effect.

The main things I always say are, that taste comes back ... it just takes time and patience.

You should continue to ingest things by mouth, so that your esophagus doesn't "forget" how to move food (even if you're just drinking smoothies.)

Keep trying new things. Eggs (over easy) registered for me, fairly early. I added new foods after that - chicken broth etc ...

I've heard lemon juice speeds up the taste healing process.

Don't give up; I wish you the best of luck!

MG

 

ERomanO

Welcome, almostthere!

Ditto the above advice.  For me it was either spicy or tangy (or both) foods that I could enjoy.  Basic carbs took a while and sweets a long while.  When your taste returns you have to then watch out not to gain all that weight back... and then some!  That's what happened to me.  Fortunately I was able to reverse that to a resonable level.

Best of luck.  Keep us apprised of your progress.

Remington25

My experience

Taste was gone a couple of months.  I tried spicy food and lemonade to spur it on and I"m not sure if it helped.  I would say I'm at 90-95% taste back and my treatments ended 1/8/21.  They told me it was important to swallow as MG has mentioned.  I loved eggs before I lost my taste and hated eggs when taste came back for a couple months and now I enjoy them again.  Also, sugar/sweets aren't nearly as sweet however fruit is normal and sugar subsitues (splenda) taste more sweet than ever before.  

Remington25

Dry mouth

My dry mouth has improved but will never be back to normal.  My dentist is happy but says my saliva is much stringier than normal but is happy I have something to help coat my cheeks, teeth and gums.  My dry mouth was almost unbearable for 4 months and then improved quickly to where I'v been the last 2 months.  This is my "new normal" I'm told.  It isn't terrible anymore.

almostthere

wbcgaruss said:

Well First Let Me Say

Welcome to the forum and your first post and hopefully more as I am sure you have some advice to help other folks.
Sorry, you have to be here but we are all in the same boat, something we did not expect.
So I am guessing you started radiation after healing up a bit from your operation so let's just use March as a start time for rads.
So that brings us to April 1st for the estimated starting recovery date from radiation and chemo treatment.
These are just estimates on my part for this answer if I am terribly far off please feel free to correct me.
So you are 3 months or more out of treatment and having taste issues yet.
To be honest this is not surprising because recovery is a slow process in the head & neck game.
Recovery is measured in weeks and months, not days and weeks it is a long process.
So try to be patient and see what happens, you just don't know.
Some on here and in my local support group started getting some taste back pretty quickly and some not so.
Some got a lot back and some got a little and improvement stopped and that's where they are.
There are some on here and 2 guys in my local support group that never got their taste back and at this point probably never will.
I am in that situation, as I have just a little flavor from foods just enough to make eating not totally bland but some foods have no taste.
I am thankful I have a little.
Sometimes when I first start eating something is tastes really good for the first few bites and then quickly fades away.
Try what Logan says try spicy foods and chili and see if that will stimulate it.
I know someone on here said they ate loads of Wendy's chili and that was their go-to if there is a Wendy's near you give it a try and try Logan's suggestion of Roadhouse chili.
If there is a Smorgasboard near you go to that and you can try little bits of different kinds of food to see if you can find something that works for you.
Each person's case is different as it depends on the person's body, the number of rads, how strong they were, and the placement they had to use to defeat your cancer.
So it is actually a little early post-treatment at roughly 3 months out or a little more although I would have thought you would be experiencing a small amount of taste but with this treatment and recovery you never know.
So take heart and hang in there you still have plenty of time as there are a few on here that have experienced taste changes as much as 2 years out or more.
Can you eat and swallow OK and the feeding tube is because everything is so bland you can't stand to eat or do you have swallowing issues??
Also please take a look at the SUPERTHREAD at the top of the page as it is loaded with info.
And lastly NEGU (Never Ever Give Up)
Wishing you the best-Take care-God Bless-Russ

 

 

 

taste

Thanks so much for your post and all the info.

I have no trouble swallowing, it's just that anything I chew up tastes replusive!  So much that my body won't allow me to swallow and I spit it out.

So tired of trying different foods either prepared or something I cook at home and throwing it out.

Especially certain foods that were my "favorite" before all this was going on - too sad!

Have to be more patient, that's pretty evident, and as long as my G-tube is working and I'm slowly regaining my lost weight I feel some confidence.

Thanks!!

almostthere

profile image??

Cannot find any help of the procedure to post a profile image to my account.

Help anyone - please.

OBVIOUSLY I DID FIND A WAY.

THANKS!!

wbcgaruss

almostthere said:

profile image??

Cannot find any help of the procedure to post a profile image to my account.

Help anyone - please.

OBVIOUSLY I DID FIND A WAY.

THANKS!!

Look At The Top

Right of the CSN page and click on CSN help you can usually find most answers about the site there.
I checked and found this.

My CSN Space and About Me

You must register on CSN to access this feature. Your CSN Space has your About Me page where you can tell your story and upload a picture of yourself or other image. It also includes your personal Expressions Gallery and Resource Library contributions and your blog.

To create your ‘About Me' page:

• Log on to your CSN account at csn.cancer.org with your username and password; you will be taken directly to your personal "CSN Home."
• Click on “create” under ‘My CSN Account' if you are creating your About Me page for the first time. Next, click on the edit tab and then the About Me link.
• Select any fields that apply to you in the first box.
• You can answer the questions that are on the page or write your own questions that you'd like to answer. The questions you create should be relevant to your survivorship or caregiving experiences.
• It's a good idea to copy and paste your answers into a Word document as a back-up while creating your About Me page. It's best not to type your answers into a Word document first because when you try to copy and paste them into the text boxes on CSN, they may not format correctly.
• When finished, scroll down and click on the ‘Submit’ button at the bottom of the page.
• You will have the option to upload an image from your computer by clicking on the ‘Picture’ link under the ‘edit’ tab. Click on the ‘Browse’ button in the ‘Picture’ box. Locate the image you want on your computer and click "Open." (Note: The file must be in either JPG or GIF format and the maximum size is 3000 KB.
• To submit your image, click on the ‘Submit’ button under the ‘Picture’ box.

To edit your About Me page:

• Log on to your CSN account at csn.cancer.org using your username and password; you will be directed to your personal CSN Home.
• From your CSN Home page, click on ‘edit’ under ‘My CSN Account.’
• Select the About Me link under the edit tab.
• Make your desired changes.
• Scroll down and click on the ‘Submit’ button at the bottom of the page.
• Your About Me page can be changed as often as you wish.

To view your About Me page:

• Log on to your CSN account at csn.cancer.org using your username and password; you will be directed to your personal CSN Home page
• Click on "view" under My CSN account.

If you have questions about your CSN Space, please send them to the CSN community manager via the "Contact CSN" link at the top of this page.

And this-

Expressions Gallery

You must register with CSN before contributing to the Expressions Gallery. After registering, you may make as many contributions to the gallery as you wish: poems, song lyrics, articles, photographs, artwork, stories, songs, recipes, graphics, etc. All contributions will be listed and hyperlinked to your “My CSN Space” page.

To contribute to the Expressions Gallery:

• Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page
• Click on ‘create’ under ‘My CSN Account.’
• On ‘My CSN Space’ page click on the ‘expressions’ link.
• Next to ‘create,’ click on the link that best describes the type of contribution you would like to create.
• Enter your contribution and upload any picture that may accompany your contribution
• To preview your contribution, click on the ‘preview’ button
• To post your contribution, click on the ‘submit’ button

Tips about Expressions Gallery contributions:

• When submitting published articles, you may also want to include a link to the original article in case this is later on updated by the original writer. Remember to add proper citation.
• You can upload an image to the ‘Photo’ section of your ‘expressions’ page from your computer. To do this clicki on the ‘Browse’ button next to the field labeled "Image." Locate the image on your computer and click ‘Open.’ The file must be in either JPG or GIF format. Smaller image files may take less time to upload.
• You can copy text into the text box on the Expressions Gallery area, as long as it is a TXT (.txt) file. Word (.doc) or other file formats may cause formatting problems. To make a .txt file, open the document you want to post in the gallery. Under the File menu, select ‘Save As.’ Give the file a name, and note where it is being saved so that you can find it later. Under the ‘File Name’ field, select ‘Text’ from the drop-down menu that contains file types. Select ‘Save.’ You now have a .txt file from which you can copy and paste the content into a CSN form.
• When submitting song lyrics or poetry, any line breaks in your .txt file will be preserved on the posted contribution page.

If you have further questions about the CSN ‘Expressions Gallery’, please send your question via the "Contact CSN" link at the top of this page.

Also here is a link to a post on this site explaining how to

Posting pictures on discussion board and expressions gallery

https://csn.cancer.org/node/255838

Hope this helps-Take care-God Bless-Russ

wbcgaruss

wbcgaruss said:

Look At The Top

Right of the CSN page and click on CSN help you can usually find most answers about the site there.
I checked and found this.

My CSN Space and About Me

You must register on CSN to access this feature. Your CSN Space has your About Me page where you can tell your story and upload a picture of yourself or other image. It also includes your personal Expressions Gallery and Resource Library contributions and your blog.

To create your ‘About Me' page:

• Log on to your CSN account at csn.cancer.org with your username and password; you will be taken directly to your personal "CSN Home."
• Click on “create” under ‘My CSN Account' if you are creating your About Me page for the first time. Next, click on the edit tab and then the About Me link.
• Select any fields that apply to you in the first box.
• You can answer the questions that are on the page or write your own questions that you'd like to answer. The questions you create should be relevant to your survivorship or caregiving experiences.
• It's a good idea to copy and paste your answers into a Word document as a back-up while creating your About Me page. It's best not to type your answers into a Word document first because when you try to copy and paste them into the text boxes on CSN, they may not format correctly.
• When finished, scroll down and click on the ‘Submit’ button at the bottom of the page.
• You will have the option to upload an image from your computer by clicking on the ‘Picture’ link under the ‘edit’ tab. Click on the ‘Browse’ button in the ‘Picture’ box. Locate the image you want on your computer and click "Open." (Note: The file must be in either JPG or GIF format and the maximum size is 3000 KB.
• To submit your image, click on the ‘Submit’ button under the ‘Picture’ box.

To edit your About Me page:

• Log on to your CSN account at csn.cancer.org using your username and password; you will be directed to your personal CSN Home.
• From your CSN Home page, click on ‘edit’ under ‘My CSN Account.’
• Select the About Me link under the edit tab.
• Make your desired changes.
• Scroll down and click on the ‘Submit’ button at the bottom of the page.
• Your About Me page can be changed as often as you wish.

To view your About Me page:

• Log on to your CSN account at csn.cancer.org using your username and password; you will be directed to your personal CSN Home page
• Click on "view" under My CSN account.

If you have questions about your CSN Space, please send them to the CSN community manager via the "Contact CSN" link at the top of this page.

And this-

Expressions Gallery

You must register with CSN before contributing to the Expressions Gallery. After registering, you may make as many contributions to the gallery as you wish: poems, song lyrics, articles, photographs, artwork, stories, songs, recipes, graphics, etc. All contributions will be listed and hyperlinked to your “My CSN Space” page.

To contribute to the Expressions Gallery:

• Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page
• Click on ‘create’ under ‘My CSN Account.’
• On ‘My CSN Space’ page click on the ‘expressions’ link.
• Next to ‘create,’ click on the link that best describes the type of contribution you would like to create.
• Enter your contribution and upload any picture that may accompany your contribution
• To preview your contribution, click on the ‘preview’ button
• To post your contribution, click on the ‘submit’ button

Tips about Expressions Gallery contributions:

• When submitting published articles, you may also want to include a link to the original article in case this is later on updated by the original writer. Remember to add proper citation.
• You can upload an image to the ‘Photo’ section of your ‘expressions’ page from your computer. To do this clicki on the ‘Browse’ button next to the field labeled "Image." Locate the image on your computer and click ‘Open.’ The file must be in either JPG or GIF format. Smaller image files may take less time to upload.
• You can copy text into the text box on the Expressions Gallery area, as long as it is a TXT (.txt) file. Word (.doc) or other file formats may cause formatting problems. To make a .txt file, open the document you want to post in the gallery. Under the File menu, select ‘Save As.’ Give the file a name, and note where it is being saved so that you can find it later. Under the ‘File Name’ field, select ‘Text’ from the drop-down menu that contains file types. Select ‘Save.’ You now have a .txt file from which you can copy and paste the content into a CSN form.
• When submitting song lyrics or poetry, any line breaks in your .txt file will be preserved on the posted contribution page.

If you have further questions about the CSN ‘Expressions Gallery’, please send your question via the "Contact CSN" link at the top of this page.

Also here is a link to a post on this site explaining how to

Posting pictures on discussion board and expressions gallery

https://csn.cancer.org/node/255838

Hope this helps-Take care-God Bless-Russ

Also Here Are The Posting Instructions

From that post-

Posting pictures on discussion board and expressions gallery

 

 

For a while it was not obvious to me how to insert pictures into posts, so I thought I would share. If you know it already, please disregard.

(1) Picture size needs to be under 150 pixels, larger pictures sometimes get re-formatted and rotated. Right click on your picture, edit size to under 150 pixels and save somewhere on your hard drive (desktop?)

(2) From the body of the post click on the "Insert/Edit Image" (icon that looks like a little tree), click on "Image URL", click "Upload", click "Browse", select the picture you previously saved, click "Upload", click "Insert file". At this point you can add image title and description. Then click "Insert", click "OK" and you are done.

(3) You can add as many pictures as you want by repeating (2). You can also re-size, move, copy, paste and delete pictures from inside the post.

Have fun!!!

Take care-God Bless-Russ

Jsmale

Remington25 said:

Dry mouth

My dry mouth has improved but will never be back to normal.  My dentist is happy but says my saliva is much stringier than normal but is happy I have something to help coat my cheeks, teeth and gums.  My dry mouth was almost unbearable for 4 months and then improved quickly to where I'v been the last 2 months.  This is my "new normal" I'm told.  It isn't terrible anymore.

Xylimelts saved my husbands

Xylimelts saved my husbands dry mouth...you can buy them at pharmacies or Amazon