Im 3 months out of radiation and chemo for oral cancer. I am new at this and looking for someone to talk too. I do not have a support group in my area for this type of cancer. I am experiencing a lot of pain at tumor sight and my hearing has been deeply impaired. The dry mouth is really taking a toll on my mood. Feel miserable anyone out there to chat with would be great help. Im 63 and retired military.Thank you
Bill, There is a SPOHNC, Support for people with oral head and neck cancer, in Seattle, WA. With any pain, your doctors should be told, and rule out cancer, which can simply be done by exam, not 100%, but ruled out many of my concerns until my post treatment scan. Three months is still early, and can take up to two years to recover, some things never, and some things recover sooner. It takes time, basically. Keep doing what you did during treatment, not sure what, but there are many things to do that may lessen the severity if you don't know or may be doing already. Sounds like you may have had Cisplatin?
You can make your own post in "introduction" or this one moved, so you can get more responses. Good luck.
Paul Thank You. I pulled a name at random as I dont know how to use chat rooms. Not sure how to send this message out to everyone. Im aware of a group in Seattle but Im a hundred miles away and also had a mild stroke prior to treatment beginning. Unable to drive that distance without help. Not a good year!
Sorry to hear Bill, that is rough. Use any name you want, just don't use mine lol. I'll ask ChristineB, an OCF administrator, and cancer survivor, fighter, to move it, if applicable, wherever, being it's your first post. We do add to other posts, but sometimes it carries on and on, which is called hijacking lol, and can take away from the original poster, and guilty of it many times myself. I post on the new responses, not knowing it's not part of the thread sometimes, No big deal occasionally.
ChristineB usually reads the posts, but will IM. Sorry for hijacking
Bill, I'm a little more than one year out of treatment for BOT Cancer and I'm 70. I just started getting a little saliva last week. No saliva IS really depressing. They tell you ahead of time but until you experience it you don't realize how important saliva is. My radiation Oncologist said that everyone recovers differently but also said that any recovery of saliva and taste will take place in the first 6 months. Mine didn't and did start just recently. Others on this forum relate changes after two years.
The reality is that everyone IS different and you'll just have to wait and see.
The other depressing thing is that it seems that every Doctor has a somewhat different, or radically different, opinion.
My ENT Doc really gave me little hope of saliva improvement but he did prescribe pilocarpine which helped some.
I use XyliMelts at night.
I'd also recommend that you take 2000mg of American Ginseng a day. Mayo did a clinical study on Chemo patients and it helped with their energy levels. Helped me for that and other things.
There are clinical studies by reputable cancer treatment providers (MD Anderson, Sloan-Kettering, Mayo)that show that acupuncture helps in starting saliva flow. I've communicated with cancer treatment survivors for whom it has worked but I tried four different protocols and none worked for me. I have not been able to find out how age affects the acupuncture effectiveness or for how long the saliva continues to be produced. One of my correspondents had success but had to keep up with the treatment and when she could no longer afford to the saliva decreased.
Having only one set of molars left after the others were pulled for fear the radiation would harm them, having no saliva, and having taste greatly affected, everything tastes really salty, I'm on a primary diet of drinking Boost VHC combined with Scandishake three times a day. That has gotten very old.
All I can say is what others on this board have said: hang in there and hope for the best.
Thanks! Needed hear this from others. Had all the teeth removed for same reasons prior to stroke. Ill keep reading and gather info to try and stay on top of this.
Hi Bill, welcome to OCF! You are not alone in this. We will help you with your recovery.
As a survivor Ive been where you are and I know how frustrating recovery can be. Seems like every time you have a couple better days that a set back hits. Everyone is different, you will hear that over and over. Even a few others the same age with the same diagnosis and treatment plan as you can have very different results and recoveries.
A complete recovery can take every bit of 2 years. Im sure if you look back to when you first finished rads you are doing alot better than back then. Recovery is full of ups and downs. Try to focus on what you can control which is your intake and attitude. Every single day for at least the first year of recovery you need to take in a minimum of 2500 calories and 48-80 oz of water daily. Dont skimp and try to play catch up the next day as tomorrow your catch up usually will never happen. Do you have a feeding tube? If so you should have a pump, if not ask for a prescription to get one from a medical supply company. If you dont have a feeding tube push yourself to drink more. Ive gone thru it and know its not easy but you must force yourself to drink to get well. Your intake will help you to bounce back. If losing weight is an issue you need to bump up the daily calories to a minimum of 3500 daily. I know it sounds like too much but after what your body has been thru it is necessary in order to rebuild your battered body.
Try this milkshake out. Its loaded with calories and tastes pretty good. Dont be afraid to drink 2 or even 3 of these per day without fear of gaining a ton of weight. many weeks I drank 2 or 3 and never gained an ounce.
Easy to Eat Food List (All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
Hang in there, things really will get better.
Hi Bill - another big welcome to the family, because that's what you just joined. It's a big one and many, many are here to help.
Like others have said, everyone is different, we all have different symptoms and recover at different rates. But the one thing that stays constant regardless is that maintaining a positive attitude makes all the difference in the world.
I'm not that far behind you, but having lost all taste I'm pretty much surviving on Boost and Ensure. I know how boring eating only that can get. I also have a horrible taste in my mouth about 90% of the time. Another cancer survivor gave me a heads up to get some lemon drops and keep one in your mouth, so far it seems to be helping. Since I let them dissolve slowly I got the sugar free kind so I wouldn't do further damage to teeth.
Likewise do you have any fluoride trays for your teeth? I hear you need to do daily fluoride treatments for the next several years as the radiation demineralizes the teeth.
Somebody else told me get used to the idea of carrying a water bottle with you everywhere you go, sipping on water continuously may be all you can do for the dry mouth right now. I have some of the old formula Biotene Dry Mouth Rinse, but so far that hasn't been that helpful.
Lastly, what branch and what did you do in the service. I flew B-52's as a bombardier back in the day.
Thank you for your service. Now, let's get this recovery thing whipped.
Tony
Hi Tony, I retired in 89 as AECS. As elecrrican worked on P-3 A-7 F-14 EA6B aircraft and on a lot of carriers.
just finished a feeding as I still have a tube. looking forward to A good report on my biopsy Mon. AM By the way, I do have semi OK taste. some are stronger than others.
Welcome, Bill, sorry you have to go through this.
FWIW, I'm 74.
Dry mouth can be greatly alleviated by chewing any gum sweetened with Xylitol. If you get used to checking the ingredients on the package of everything you put in your mouth, (you should) you'll find others, but I've used Trident tropical mix/blast/whateverinhell they call it. Also, Icebreaker mints makes several products, but like all mints, the benefit stop when the mint is all gone.
I try to ensure that there is always a pack of each (mints and gum) close when I'm driving anywhere.
I've met a couple of guys who've been through this, they both said it took them 5 years to recover taste fully.
In the past 6 years, I had three recurrences and have been successful at beating it back each time, but each time has involved prolonged chemo and that has always cost me a chunk of the gains in recovering taste, so my taste is still only about 60% recovered overall.
Some foods are strange, like Steak. With steak, the taste is fully developed, but only for about the first 4 or 5 bites. After than, it VERY quickly becomes tasteless.
Bill, adding my welcome and so sorry you're going through this by yourself. You've got a new family here though, and I hope you'll keep on posting with us about every little thing. The dry mouth can be awful and I hope yours will improve. Folks have offered some good suggestions.
Sometimes biting gently on the sides of your tongue - assuming there are no issues there - can help stimulate saliva. It used to work for me when I was a flute player.
Thinking of you and sending positive vibes.
Hi Bill, I am about 3 years out of treatment. I would say it took about a year before I could really taste food. Still to this day I need what I call food lube to help moisturize food to facilitate easier swallowing. My fridge is never without mild salsa, mustard. Ketchup, BBQ sauce and light Italian and ranch salad dressing. Not to mention, I wouldnt even attempt eating without a drink within reach. It's I guess the new normal. It's doable. No complaints here.
thanks Bart! Had to have my teeth pulled so cant chew anything. Ive tried mint but it comes on very strong and cant keep in mouth. Im a little more than 3 months out of treatment and pain is tiring. my hearing has also been greatly impaired from chemo. Really helps to see how many are going through this and their stories.
Thanks for the advice. It sure helps seeing others who are going through this and their stories.
Thanks 3 month out of treatment. The pain is tiring. had both chemo and radiation for 7 wks. Been on feeding tube since June 11. starting to introduce a few smoothies just difficult to get down. It sure helps reading about others going through this and their stories.
Here is a link with dry mouth info. Pain can be from mutiple factors including radiation, chemo injury, food injuries, mucosictis, bacterial, fungal, like thrush, and viral infections, which need to be treated with appropriate medication, impecable oral care, pain meds, changing type of foods etaen not to cause injury like non sharp textured, spicy, hot temperature, acidid foods.
http://www.oley.org/lifeline/Managing_the_Symptoms_of_Dry_Mouth.htmlGood luck