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Dry mouth and taste buds

Dry mouth and taste buds

Posted by ChrissyK on Dec 12, 2018 3:47 pm

6 weeks post head and neck radiation 20 treatments (have also had chemo and methotrexate). Still have awful cross between mucosis and dry mouth and cannot taste anything. I was a singer BC. Will my mouth ever be better?

Re: Dry mouth and taste buds

Posted by ccgirl on Dec 13, 2018 8:54 am

Hi Chrissy

Since Feb. of this year I've had 20 rounds of radiation to my nose and 30 rounds to my neck area.  I too suffered with mouth sores and mucosis.  My last treatment was the beginning of August and I'm here to tell you that things will improve! Did your team offer you a medicated mouth wash/rinse?  Mine had an anti fungal , anti inflammatory, and a numbing component.  It was mixed at the pharmacy at the hospital where I had my radiation.  It helped me get through the worst of my mouth sores.  I still have dryness issues - I use Xylimelts over night and they help avoid that 'desert' feeling in my mouth when I wake up.  I also think they help maintain the integrity of my gum tissue; helps to lesson the sores.  The sores have stopped occurring and my radiation oncologist is confident that all my saliva will return - it can take up to a year though.  I was fortunate to maintain my taste buds.  I'm sure that eating is a bore for you!  It is for me as just the dryness issues make it challenging to eat.  I drink lots while I eat but it sure is hard to enjoy food.  I feel like I'm eating to live rather than living to eat.  I hope that the next few weeks bring improvements for you!
Kim
 

Re: Dry mouth and taste buds

Posted by ChrissyK on Dec 13, 2018 1:16 pm

Hello Kim

Thank you so much for your reply. I have to say I was nervous to get involved in a chat room because there are a lot of very sad stories. Your reply is a light for me right now.  

Although there are many folks with bigger hills to climb and I am very lucky to be cancer free (stage 4 non hogkins lymphoma). The dry mouth and related mouth problems have been a big battle for me. 
Knowing that it will get better - maybe not 100%- overtime means a lot.
Thank you and Merry Christmas ChrissyK

and yes I have the mouth rinses etc and am taking very good care of my teeth and mouth. 

Re: Dry mouth and taste buds

Posted by Twiggy96 on Dec 31, 2018 11:03 pm

Hi, I'm having the same problem. . Haven't compared notes with anyone else that has what I have.m with mouth dryness, especially at night. Very uncomfortable. I too have lymphoma, mantle cell.. Can get very depressed but I guess that is a normal thing. Got diagnosed in November of last year. Went through the chemo treatments, then stem cell replacement, and now am on a maintenance drug. Side affects are a real pain. Still taking lots of drugs to help with kidneys, heart and liver, but they have almost come back to normal. Depression is a major thing but I have my wife with me who has been there for every appt, and procedure. Without her I don't think I'd here today. Hope to here from you, and if not, I hope you continue to improve
 

Re: Dry mouth and taste buds

Posted by ChristineH on Jan 1, 2019 10:40 am

ccgirl‍, thanks for the Xylimelt tip. Didn’t know they existed, and happy to find out they do. Will definitely get myself some!
“Never a horse, always a zebra”

Re: Dry mouth and taste buds

Posted by Jillie on Jan 25, 2019 10:49 am

hi everyone,
i am almost 7 months post treatment for head and neck cancer,   It was on my right tonsil HPV 16.  I still have a wicked dry mouth and my taste buds
are not always there.  It depends on what it is I am eating or drinking and it is different every time.  I use the xylimelts at night and sometimes during the day but it doesn’t help when you want to eat so I am drinking boost 3 times a day and trying one meal at dinner.  It takes forever to eat, doesn’t taste good and is such an effort.  The things I like the most are bread and bread products and they don’t work.  ccgirl‍ I am glad to hear it gets better. It’s nice to hear your saliva glads will be back.   My doctors don’t commit to anything.   All they say is everyone is different!   I don’t think some of the doctors are even aware of the side affects.   I had the mucusitis real bad and mouth sores.  I was able to get a rinse callled magic mouthwash and that helped but they couldn’t believe I had them that long.
anyway, my only other complaint is a cough I have had for 2 months.  I am in Florida for the winter and saw a new oncologist down here and he ordered a cat scan for that so I have to wait and hope it’s nothing bad.    I hav Alison been told it could take years to get rid of dry mouth or could have forever.  So depressing.  I was at church last week looking at all the people thinking to myself “ they all get to go home and eat.  It makes me so jealous because people just don’t realize what it’s like not to be able to eat.   They take it for granted.  

Re: Dry mouth and taste buds

Posted by ccgirl on Jan 25, 2019 11:19 am

Hi Jillie‍ , so sorry to hear that you are being so challenged by dry mouth and sporadic taste bud issues.  It definitely makes your life eating to live rather than living to eat!  Bread is certainly one of the most difficult to "choke down" - I have switched to salads (with LOTS of dressing) - the veggies and or fruit seem to add their own moisture which aids in chewing.  I also always have water on hand to aid in chewing.  Meat also dries out while chewing unless we have gravy or another sauce.  I like a smoothie in the AM - banana based with yogurt, milk, and other fruits.  Eggs aren't too bad either, but, toast is the issue for sure.  I often do soft boiled eggs and finger -sliced toast dipped in the yolk makes the small amount of bread palatable.
Best of luck in finding something that works for you; and take comfort in the fact that your issues are the result of getting rid of your cancer! (I HOPE so, let us know how your CT scan goes).  I too am a snowbird - from Ontario Canada though.  We stay at our place just south of Lake Okeechobee.

Re: Dry mouth and taste buds

Posted by maui2000 on Jan 30, 2019 10:30 am

I had thyroidectomy and neck resection due to cancerous tumor on my thyroid, esophagus, and trachea a year and two months ago.  The tumor was the size of a baseball.  I also had three weeks of chemo and 37 radical radiation treats six months ago.  A month ago I had radioactive iodine treatment as well.  My throat is "sore" more times than not.  My taste buds are altered as well.  Anything with spice burns my mouth, tongue, and lips.  When I say spice I mean ALL spices not just the hot spices.  I also can not tolerate citrus or vinegars.  Even salt bothers me.  I have continued ulcers and soreness of my mucosa.  My mouth is so dry I wake up with my mouth "glued" open and yet the only saliva I have is ropey. I also have a cough from time to time and difficulty swallowing.  Swallowing has gotten better and some days are worse than others.  I must chew all foods to pulverized means.  Meats, breads, and chip type foods are the hardest to swallow.  I feel progress yet some days it seems I go two steps backward.  I found drinking one or two small glasses of pure aloe ( I purchase from Amazon or Health Stores) helps.  Another drink that I found that seems to help and is flavored is Simply pineapple coconut drink, strange because regular pineapple causes ulcers but this juice does not.  I also can't tolerate very hot drinks or foods. My teeth have suffered greatly as I have had to repair gum line decayed teeth due to pH changes and dry mouth.  My gums were subject to bleeding as well so I switched to a SOFT child toothbrush and that has improved.  My dentist prescribed a fluoride toothpaste that helps as well.  I also use Biotene mouthwash and toothpaste to help with the dry mouth.  I also find more post nasal drip that may contribute to my "sore" throat so I use a good humidifier in my bedroom.  Each day is a blessing, giving up is not an option.  Thanks to all who share as you have given me information that helps me. 

Re: Dry mouth and taste buds

Posted by Lacey_adminCCS on Jan 30, 2019 10:42 am

Jillie‍, ccgirl‍, maui2000‍  so glad you have all met. I hope you continue to connect and share your tips and tricks with each other and the site. 

Do you feel like you were well prepared for the side effects you would face after treatment?

Re: Dry mouth and taste buds

Posted by ccgirl on Jan 30, 2019 12:24 pm

I would say I was intellectually prepared, I read EVERYTHING!  Dealing with all the different issues as they come up becomes very individualized as products and habits and preferences differ.  Sharing information and experiences at least gives us all a chance to have the broadest arsenal to utilize.

Re: Dry mouth and taste buds

Posted by maui2000 on Jan 30, 2019 3:59 pm

Yes, I too was given an RX for Larry's Magic Mouthwash.  I found it helpful to swish and swallow about 30 minutes before meals during radiation but don't use it now.  I do from time to time use an equal mix of Maalox & Benadryl liquids and either swish and spit or dab with a Q tip when I have ulcers in my mouth and lips to ease the discomfort.
 

Re: Dry mouth and taste buds

Posted by maui2000 on Mar 4, 2019 1:50 pm

This week I will have scans to see if I still have cancer or can hear those great words "Cancer Free".  Fingers crossed and many prayers.  Still dealing with the dry mouth and mouth sores.  Can't tolerate most flavors or spices.  Mint in toothpaste burns as well.  Some days are good and some not so good.  Surgery was 15 months ago and radiation was 8 months ago.  I am learning to be patient for things to settle and return to the new normal.  I hear lots of people say it takes 1 -2 years for recovery from radiation/chemo.  Some days my throat is so sore I worry and than the next day it is not sore.  Swallowing is almost always an issue but looking back now I can chew and swallow most foods.  The last few weeks of radiation and months to follow I could only tolerate soft foods and choking was not uncommon. It is a slow process and sometimes frustrating but I am moving forward.  I am grateful for all who share and it helps me realize I am not alone.
 

Re: Dry mouth and taste buds

Posted by maui2000 on Mar 4, 2019 1:58 pm

I can't say I was prepared enough.  The oncology office skims the surface but doesn't get into the meat of it until you have the issues.  Perhaps because not everyone does or they don't want to alarm patients.  I would rather know what might or is going to happen than to wake up one day with surprises.  My greatest surprise was how difficult swallowing became and how much my skin would deteriorate during radiation.  The first 2-3 weeks were such a breeze it knocked my socks off when things got tough because I thought it would all be easy as week 1-3.  Week 5 was the real break down.  My oncology office recommended a cream called Camwell that you can get through Amazon for the burn.  It worked better than the prescription medications.