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

Posted by lzzie @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.

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@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.

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@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

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

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@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

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@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.

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@lzzie

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

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Lzzie, my husband Doctor also give him Biotene. You can buy this online. I found a website in New Zealand that carries this. Biotene supposes to help with dry mouth. I am not sure about Spry. Here is the link to the website for Biotene.

https://www.ibuypharmacy.co.nz/biotene-dry-mouth-mouthwash-470ml
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@lzzie

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

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Thank you Lisa I will try it

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@lzzie

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

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Biotene and others are sold over the counter at drug stores in the U.S. Look in your store with the toothpastes, mouthwashes, etc. You can also purchase through Amazon.com. Look for "dry mouth products."

My husband uses Biotene gel and the baking soda/salt rinse (.25 teaspoon each in 1 cup of water).

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