Posted by ccgirl on Dec 13, 2018 8:54 am
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!
Posted by ChrissyK on Dec 13, 2018 1:16 pm
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.
Posted by Twiggy96 on Dec 31, 2018 11:03 pm
Posted by Jillie on Jan 25, 2019 10:49 am
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.
Posted by ccgirl on Jan 25, 2019 11:19 am
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.
Posted by maui2000 on Jan 30, 2019 10:30 am
Posted by Lacey_adminCCS on Jan 30, 2019 10:42 am
Posted by ccgirl on Jan 30, 2019 12:24 pm
Posted by maui2000 on Jan 30, 2019 3:59 pm
Posted by maui2000 on Mar 4, 2019 1:50 pm
Posted by maui2000 on Mar 4, 2019 1:58 pm