Hi everybody this is my first time posting and not really sure what I'm doing. I'm Di a 47 year old woman non drinker or smoker . Started this journey last year with a sore throat and sore tongue saw my GP over 5 weeks and was treated with 2 courses of antibiotics for pharyngitis , no improvement developed trismus , referred to ENT specialists , underwent tonsillectomy and biopsies, diagnosed 1 week later with SCC of left tonsil and surrounding tissue. 30 fractions of radiotherapy and 1 cycle of Cisplatin chemotherapy ( too poorly for second cycle), treatment finished on 4th December 2013 . Was on on NG tube for 9 weeks , there was some occasions when I wondered how I was going to get through , but you just do somehow. Almost 4 months on feeling much better , taste coming back , small amount of saliva, no sigh of cancer a 6 week check up. First scan due 18th March 2014 , feeling frightened . Looking forward to chatting to others and offering support in any way I can.

You got through it... Yay!!! There will always be some fear when it comes to check ups... even though you feel well it seems to hang there - try to put it behind you and focus on feeling well and getting back to the best health you can. hugs and congratulations.

Hi Cheryl, thanks for your message , hope that your doing ok? Struggling with a very dry mouth can't seem to tolerate the saliva sprays , so chewing sugar free gum and sipping water and had 2 acupuncture sessions, if you know of anything else I could try I would be very grateful ? Hugs always welcome they keep you going! X

Welcome to OCF! Its always nice to have survivors join our group. Dry mouth, like everything else with recovery will improve in time. It can take a full 2 years for a complete recovery. A water bottle will be your constant companion for a long time.

Best wishes with your continued recovery.

Hi Di66 - I'm right there with you and the dry mouth challenge. It's quite annoying. The thing that helps me most, other then always having a water bottle or two with me, is trident gum with xylitol, I like tropical twist. I've actually figured out that I can get away with only a half of that little stick. At night I take a half, and stick it under my tongue, or between my bottom teeth and cheek. If I do that I can go all night without a sip of water. I actually hate gum, so go figure. Also I have tried Xylimelts at bedtime, they too were very helpful. It was given to me as a sample so I'm not sure about the cost. The package says you can get them at the rite aid drug store, I'm not sure if you have rite aids where you live.
Hope that helps. And hope we both get more saliva as time goes on!

Hi thank you so much for replying it's so helpful, been feeling a bit lost as though nobody quite understands! The hygienist at my last dental appointment said she can see some saliva in there , so it's given me hope that it may improve. I thought the radiation kills the glands but must be mistaken . Take care xx

Hi Christine , thank you for your message. Yes the water bottle is going to be my constant companion! Finding that mint chewing gum still stings quite a bit the gum also makes my already stuff aching jaw ache more, constantly doing mouth opening exercises as had severe trismus but thankfully it's getting better , also trialled a thera bite gadget thing! Take care xx

Hi Di - welcome to the family. You have a LOT of brothers and sisters here who share your journey and symptoms. I'm 10 weeks post radiation and still have dry mouth, in fact mine seems to be worse now than earlier ... go figure. During the day it's not so bad because I always have a water bottle within arms reach. But at night, it will sometimes wake me up, so bad I can't swallow until I get a sip of water.

Oh well, in the big picture view this isn't nearly as bad as the mucositis was, so I have nothing to complain about.

If some of the flavors of Trident sting your mouth, then definitely avoid the cinnamon flavor, as it will light you up.

Thanks to whoever suggested a half piece under the tongue at night, I'm going to try that one

Hang in there, we will all get through this together.

Tony

Hi Tony, I'm feeling better for being in contact with people, and I thank you for welcoming me it can be pretty lonely and frightening out there. It sure is worse at night the dry mouth I read somewhere about putting biotene gel as a coating at night but I haven't tried it yet. The treatment is very gruelling glad you are through it , and hoping you have plenty of support .I too had a lot of mucositis made me very sick , the whole treatment did , but thankfully not any more! My taste is coming back a bit now , makes a change from everything tasting like a muddy puddle. So glad I found the forum. Wishing you a continued recovery , and strength as I know how difficult it is ..., but do able!

Di66... You only have to chew the gum to get it soft enough to lodge under your tongue on the bottom of your mouth, which is actually for me better then the sides. Since I can't stand chewing gum, I only chew it once in awhile once it's in my mouth. Hopefully the tropical twist might not sting at all...I stay away from any other flavors. I so hope it helps you. I don't know what I would do if I didn't have this little trick, since the water only helps for a second.