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Posts (11)

Sep 11, 2016 · Head and neck cancer in Head & Neck Cancer

Hi
That seems a good outcome and hopefully there is no major side effects for him. When I first finished treatment I totally hated bottled water it had such a horrible taste but I did not like anything with flavor either. Now seven months out from treatment that is all I drink is bottled water. I also find that hot water is quite soothing. Wishing your husband all the best for his recovery on this journey

Aug 28, 2016 · Mouth sores, no taste and no saliva and other side effects in Head & Neck Cancer

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

Aug 28, 2016 · Mouth sores, no taste and no saliva and other side effects in Head & Neck Cancer

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

Aug 28, 2016 · Mouth sores, no taste and no saliva and other side effects in Head & Neck Cancer

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

Aug 27, 2016 · Head and neck cancer in Head & Neck Cancer

Lisa_sj99. The journey for your husband will be tough but you will definitely get a good outcome. I was diagnosed in September 2015 with SCC of the base of the tongue stage II and III. Had chemoradiation and my last three weeks of treatment was double radiation, which was radiation in the morning then again in the afternoon every day. I did get mouth ulcers and loss of saliva glands but if your treatment team are really good they will certainly help your husband through this. I am now seven months since treatment and I am now at my new normal. Your husband will have to listen to his body and just take it easy and rest plenty of rest. Good luck and you are both in my thoughts

Aug 27, 2016 · Mouth sores, no taste and no saliva and other side effects in Head & Neck Cancer

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.

Aug 27, 2016 · Mouth sores, no taste and no saliva and other side effects in Head & Neck Cancer

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