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lzzie
@lzzie

Posts: 11
Joined: Apr 07, 2016

Mouth sores, no taste and no saliva and other side effects

Posted by @lzzie, Apr 7, 2016

I was diagnosed with Squamous Cell Carcinoma of base of tongue. Level II and Level III nodes less than 1cm. in October 2015. I started a course of chemotherapy/radiation for seven weeks. 37 Treatments of radiation and was on Sysplatin for a week then had to change to Caboplatin and Pacitaxel as I had a bad reaction to sysplatin. It has now been 10 weeks since treatment finished but I still have ulcers on my tongue and it hurts to swallow. I have got a dewlap which I was told would go away in about three months but it is still there and at the moment there seems to be no sign of the fluid draining away. I was told that this is what is causing me having this choking feeling all the time. I have no taste and no saliva. My question is, is there anyway I can help to regain some saliva glands and is there anything to help for these ulcers to go away. I have quite a bit of pain on the left side of my face and it seems to have gone to my ear and feels like earache all the time. Just wondering if someone has some suggestions for me.

Liked by mrsjhagen18

REPLY

Hi @lzzie, welcome to Connect.
Wow cisplatin was really rough on you. It’s a tough drug. Here’s some information about treatments for mouth ulcers http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486?pg=2

While it must be so painful, it is really important to keep the mouth clean because these sores will want to attract germs and can cause serious infection. What treatment have you tried so far?

I forgot to mention @lzzie. I moved your message to the Cancer group because I think you might get more replies from other members here.

@colleenyoung

Hi @lzzie, welcome to Connect.
Wow cisplatin was really rough on you. It’s a tough drug. Here’s some information about treatments for mouth ulcers http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486?pg=2

While it must be so painful, it is really important to keep the mouth clean because these sores will want to attract germs and can cause serious infection. What treatment have you tried so far?

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Hi Colleen
Thanks for your reply. I have been using salt and baking soda mouth wash. Today I was given NeutraFluor 5000 plus toothpaste which has a stronger fluoride 5000ppm fluoride professional toothpaste and I have also been using a gel

@colleenyoung

I forgot to mention @lzzie. I moved your message to the Cancer group because I think you might get more replies from other members here.

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Thank you for that

I have squeamous cell carcinoma of the tonsil. I am today on 2nd chemo treatment. Dr wanting to do 3 chemo since tumor is responding to it. Then will be doing 7 weeks – 35 radiation treatments. Was told to do a baking soda/salt in spray bottle in mouth every chance i get to keep mouth clean. No mouth sores for me so far.

Welcome @mrsjhagen18. Keep up the good oral hygiene. Sometimes treatment can have a cumulative effect. Here are some great resources from NIH about prevention and what you might expect.

– Chemotherapy and your mouth http://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/ChemotherapyYourMouth.htm
– Head and Neck Radiation Treatment and Your Mouth http://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/HeadNeckRadiation.htm

Often a visit to the dentist is recommended before you start treatment. Have you visited your dentist lately or made an appointment to see one before radiation?

Hey, @lzzie. We haven’t heard from you for a while. How are you doing? Would love to get an update.

@mrsjhagen18

I have squeamous cell carcinoma of the tonsil. I am today on 2nd chemo treatment. Dr wanting to do 3 chemo since tumor is responding to it. Then will be doing 7 weeks – 35 radiation treatments. Was told to do a baking soda/salt in spray bottle in mouth every chance i get to keep mouth clean. No mouth sores for me so far.

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Hi @mrsjhagen18, in reply to your response regarding mouth washes. I am very thorough regarding my mouthwashes and have been since my treatment started until now which I am seven mouths out since treatment. I clean my teeth four times a day and have a salt/baking soda mouth wash after every clean. I had ulcers in my mouth for over 16 weeks after treatment so my oncologist gave me medication to help the healing process of them. I am also very unusual as I had my spleen removed in 1980 due to ITP which now with no spleen my immune system is very low and when I got chemoradiation my immune system was even lower. I am now recovering we The last month I had another lot of ulcers which I went to my GP who prescribed pennicilan and also Amphotericin for the thrush in my mouth. The medication helped the ulcers and thrush but last week I had another lot of ulcers so rung my oncologist who said that I should not have been given the tablets for thrush instead I should have been given the liquid as the tablets actually dry my mouth out even more and create ulcers. I am always learning. My ulcers have now slowly started to heal again. I go to the ENT specialist in a week so will be asking him about these ulcers that I have been getting. I have also put myself on to Multi Vitamins and also a Probiotic to help me with my immune system so I do hope this helps. I would like to wish you all the best for your journey over the next few weeks and hope that all goes well for you.
Take care
Liz

Hi Colleen
Yes I have been a bit slack with my updates. I am progressing slowly but am so much better. Still have a struggle with no saliva glands but that is a small price to pay. I have been very good with my mouth hygiene cleaning my teeth four times a day and salt/baking soda mouth washes after every clean. Had a visit to my dentist last week and they were so impressed with how clean and white my teeth were. They said that I have been doing everything right but it still has not stopped me from getting ulcers. I have had two lots in the last four weeks and the second lot is just starting to heal thank goodness. I don’t know if it will be an ongoing thing but at times I blame me for not having a spleen which I had removed in 1980 due to ITP which I have got a very low immune system and having the chemoradiation it has reduced my immune system even more. At the moment my GP is keeping an eye on my thyroid as it is underactive at the moment probably due to treatment. I have another blood test at the beginning of September to see if it has got any better so I am hoping it has but the way I feel at the moment I don’t think so as I am quite tired but I feel good.

Great to hear from you again Lzzie. I think most people could imagine the struggle it can be to live without saliva glands. We just take that function for granted. What has been the toughest adjustment with no saliva glands and what do you do to overcome it?

I did go to a dentist..was recommended before radiation. Said all is ok. Gave me biotene and spry products to use as well as my mouth rinses recommended by the radiologist.

@mrsjhagen18

I have squeamous cell carcinoma of the tonsil. I am today on 2nd chemo treatment. Dr wanting to do 3 chemo since tumor is responding to it. Then will be doing 7 weeks – 35 radiation treatments. Was told to do a baking soda/salt in spray bottle in mouth every chance i get to keep mouth clean. No mouth sores for me so far.

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Izzie, sorry to hear about all the complications you have to deal with. My husband was recently diagnosed with throat cancer, stage 2. He will start chemo and 7 weeks of radiation at the Proton Radiation treatment center in San Diego. Although we live near Stanford cancer treatment center in Northern California, we decided we would avoid the IMRT radiation (x-Ray version) and chose Proton and hope to spare the surrounding healthy tissues and minimize the long terms side effects. I am very concerned about the upcoming treatment though. I heard dry mouth, mouth sore, fatigue and not able to swallow are the big issues for patients with head and neck cancer. My husband is 56 and is in excellent health so I pray that he would get through treatment with a positive outcome. Stay strong and you are in our prayers.

@colleenyoung

Great to hear from you again Lzzie. I think most people could imagine the struggle it can be to live without saliva glands. We just take that function for granted. What has been the toughest adjustment with no saliva glands and what do you do to overcome it?

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The toughest adjustment for me with no saliva glands has been swallowing food . As my tastes are totally different to what I use to know has also been a struggle. I loved cooking but now I have to ask my partner whrn I am cooking how does this taste then I alter the food to his taste. With no saliva glands I now eat much softer foods. I really enjoy apple pie and cream i have to have the cream as it helps the food go down much better. I always carry a drink bottle with me. I have found that eating sugar free chewing gum has helped. I also carry a gel for dry mouth and take that quite often. I feel I have adjusted quite well to having no saliva glands. What I find hard is having no taste or little taste. Hopefully that will improve over the next couple years. I dont eat steak now and I dont like ice cream. But as i have told people it is a small price to pay as I am still alive

Do you think that i could get biotene and spry in new zealand. I am not sure what it is

@mrsjhagen18

I have squeamous cell carcinoma of the tonsil. I am today on 2nd chemo treatment. Dr wanting to do 3 chemo since tumor is responding to it. Then will be doing 7 weeks – 35 radiation treatments. Was told to do a baking soda/salt in spray bottle in mouth every chance i get to keep mouth clean. No mouth sores for me so far.

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Hi Lisa, I live in Invercargill New Zealand and I never had a choice of what treatment I was to get. I have not heard of Proton so if it is going to help spare the surrounding healthy tissues and minimize the side effects that is great. I am pretty good now just have the slight issue with no saliva glands and taste is no where like it use to but I am guessing this is because of the lack of saliva glands. but I have learnt to live with that. I would like to wish you and your husband all the best for this new journey and I am sure it will be a positive outcome for you both

@mrsjhagen18

I have squeamous cell carcinoma of the tonsil. I am today on 2nd chemo treatment. Dr wanting to do 3 chemo since tumor is responding to it. Then will be doing 7 weeks – 35 radiation treatments. Was told to do a baking soda/salt in spray bottle in mouth every chance i get to keep mouth clean. No mouth sores for me so far.

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Lzzie, thank you for the reply! This is very encouraging! I am hopeful as well. I will do what I can to help him through this difficult journey. In the meantime, stay strong and stay healthy! All the best to you, Lisa.

Liked by lzzie

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