December 2019
Hi Bill, My husband had 30 radiation treatments and 2 rounds of Cisplatin, so quite a bit less than you. His cancer was found after having a tooth pulled. He had surgery to remove a couple more teeth and bone in his upper jaw and palate. There is a large opening up to the sinus cavity and must wear an obturator to cover it so he can drink and have ensure. He had the horrible sores in his mouth, loss if taste, the thick stringy mucous, and worst of all the lack of saliva. Everything has cleared up except the saliva. It took about 2-3 months from the end of treatment. He has been treated at Memorial Sloan Kettering . They tell him the saliva should start to come back in 12 months post treatment, maybe longer, but will probably not be 100%. He still drinks ensure 3-4 times a day and has gained back some of the weight he lost. He cannot eat meats or anything starchy like potatoes, bread, beans, rice because of the lack of saliva and enzymes to break it down. He is able to eat fruits and vegetables and they taste good. And of all things, he just had a hip replacement surgery last week. I was very worried that he wasn’t in good enough shape for it, but he is doing better than I expected. I hope things will turn around for you very soon and I will be praying for that.
... View more
September 2019
1 Kudo
He does drink ensure with 350 calories and 13g protein (4 daily along with 8 oz. of whole milk each time). The lack of saliva is what bothers him the most. His 3 month post treatment PET scan showed no cancer. Also his dr. was not surprised about the saliva. He said he should see some improvement by 6 months. He is trying acupuncture as suggested by the speech and swallow therapist.
... View more
September 2019
Does anyone currently have an obturator to cover the opening to the sinus cavity. My husband had surgery in March 2019 to remove cancer from his upper gum along with several teeth and part of the roof of the mouth. He is getting very frustrated with trying to eat.
... View more
September 2019
Hi JoeAZtrucker Good to know about the ginger tablets. I forgot we had them for my son years ago for nausea.
... View more
September 2019
Hi Bill My husband had chemo his first and third week of radiation. The chemo dr. Gave him olanzapine and ondansetron for nausea. He had to start taking one of them the night before chemo and the next three nights. He also got some anti nausea med in his IV before the cisplatin. He was never nauseous, but he did have to take laxatives and drink a lot of water. Radiation left him with no appetite, no taste and the mucositis. His last radiation was June 11. He has gotten his taste back completely but not his appetite. He now has a severe lack of saliva, and says it is getting worse. He is going to try acupuncture as suggested by his speech and swallow therapist. Hopefully that helps because he is still only able to eat soup once a day and several ensures. I’m not sure if you are in the USA, but hopefully your dr can prescribe something for your nausea.
... View more
September 2019
My husband finished radiation June 11. He has gotten his sense of taste back but still has no appetite. He drinks 4 ensure each day and a glass of milk with each. He has gained back 5-7 pounds if the 20 he lost post surgery and during radiation and chemo. He also eats a bowl of soup each day (minestrone). I feel he isn’t getting enough protein. He doesn’t have enough saliva to chew and break down the foods and then swallow them, especially meats. He has tried products with xylitol and drinking water or milk but says it doesn’t help get the food down. Does anyone have any other suggestions?
... View more
July 2019
1 Kudo
Hi Mandy, I was thinking it would take awhile for his hair to grow back. He is using biotene rinse for dry mouth and distilled water to flush out his dry and stuffy nose. Thankfully a nurse told him not to use tap water for that. He can taste sweet things almost normal and other foods taste ok. It is hard for him to chew and swallow meat and potatoes and fish even with drinking to wash it down. His weight is stable for several weeks now and actually gained a pound. (He lost a total of 40 lbs since the end of February when he was diagnosed) I hope you will be feeling better soon
... View more
July 2019
1 Kudo
For oral cancer, my husband finished radiation June 11. He had two high dose cisplatin May 1&2 and again May 20&21. He hasn’t lost all his hair but is getting rather thin and he is losing a fair amount. Has anyone used biotin or anything else to help it grow back? He is still drinking 4-5 ensure a day along with milk and tea with honey. He is trying various foods and most taste okay. Mucositis is gone for the lost part but his nose is quite dry and stuffy.
... View more
June 2019
Hi JoeTrucker, That’s good to hear. A lot of what I’ve heard was a longer time so this is hopeful for my husband. He just finished radiation today and his neck is so burned and sore and has sores inside his mouth and down his throat. Only able to get him to drink three ensure plus per day along with at least a quart of milk. Since he had surgery first back in March, he has an obturator that he removes at night before bed. He is hoping to have a surgery to reconstruct his hard palate and upper part of jaw. His cancer was in his upper gum so several teeth were removed along with some of the hard palate and 40 lymph nodes in his neck. He had chemo the first week of radiation and the third week. Bloodwork was not good after that so they didn’t do the third round of chemo. Some days I wonder which is worse - the cancer or the treatment.
... View more
June 2019
Thank you for the quick response. My husband isn’t having the proton therapy like you did, but I was wondering how long before the mouth sores cleared up.
... View more
