My name is Vernon and I have tongue cancer. It is at the base of my tongue and has moved into my lymph nodes in jaw. I am on week three of chemo and radiation. Things have gone as well as can be expected. I am starting to lose my taste for food. Any good ideas? I am very happy this was found early.
Welcome to OCF, Vernon! Sorry you are dealing with oral cancer but Im glad you found our forum. We will help you get thru the nest few months.
Here is a list of foods that have a smoother texture and are less spicy. They should be easier for you to eat during and after your treatments.
List of Easy to East Foods. I cant stress enough how important your intake is. Its the one thing you can control. It is also what will determine how hard this journey is for you. Every single day from today thru at least the first year after you finish rads you need to hit these minimums. EVER SINGLE DAY! No skimping one day thinking you can make it up the next as that quickly turns into a cycle of playing "catch up", which never happens. Every day even if you have to push yourself, take in at least 2500 calories and 48-60 oz of water. Water is especially important with getting chemo to flush it from your body to avoid kidney damage. The day before, on chemo day and the day after push your water intake a little higher. I know the hospital gives you fluids with chemo but the extra water is still a good idea. You can also get a prescription from your doc for hydration in the chemo lab a few times a week. This helps you to feel much better.
Hang in there, this battle can be a rough one but we are in your corner and will help you every step of the way.
Welcome Vernon,
Unfortunately, there isn't much that can be done in regards to taste until after treatment, and you begin recovering. That could be in phases. I say at 3 months, 6 months, a year and two years, I noticed significant changes in taste, eating ability, and it progressively improved, but I still have some altered taste, but work around it, and can say I can taste most everything since I avoid those I don't, like sweet, can't chew or swallow. I assume you are having Chemoradiation, both which kill fast acting cells like your taste buds, and nerve invertation to transmit taste signals to the brain, and the nausea, certain smells, taste can be off putting from treatment. I used canned nutrition during my treatments to avoid some issues, so maybe that helped. A number of factors that may lessen the severity of taste loss are taken into account, and there are some proactive, reactive measures that can help.
It depends on the amount, and location of radiation, and the type, amount of chrmo, and assume you are having Cisplstin, If the salivary glands are spared or have reduced radiation, and if being radiated on one or both sides of the head and neck that one side of the salivary glands still produce saliva, which is also integral in taste.
Keeping the mouth clean, well hydrated will help improve taste, brushing the tongue, treating any mucocitis, which is likely to occurr, and thrush, a fungal infection, can cause bad taste in the mouth. Avoiding foods that are too hot, taste better, and not to cause injury, as well as spicy, sharp textured, and acidic foods. The typical rinse of salt water, baking soda will help, and my last treatment I used NeutraSal, a prescription powder rinse you mix with water to help with mucocitis and dry mouth. I also had my mouth sprayed daily at the radiation center to get any gunk out, and both improved my taste, helped with mucocitis, and controlling thrush after I had to use a Nyststin swish and swallow rinse.
Improved saliva will help with taste by chewing gum, drinking water, milk replicates saliva, sugar increases saliva, but then there is the cavity issue. Drinking lemon water, smelling lemons, hard citric candy produce saliva, as well as OTC, and prescription medications to improve saliva.
Fat increases taste, and with sugar, you want to eat more, and is why it's in most junk food, and also canned nutrition.
Zinc may help with taste, but right now, it may be irritable to your tongue, so ask your doctor.
Even with all this, I didn't even try many of these, and just did my time knowing I would have taste again, which took time. I would order like 10 dishes to see what I could eat, go to a buffet, which saves money too instead of cooking and wasting it.
Another thing, taste involves more than just eating. It involves seeing, smelling. hearing, texture, and memory, besides taste which include 6 tastes, not 4, to include salt, sweet, sour, bitter, umami, and mouth feel, from fat. Use all these when ready to improve your taste.
I hope this helps, and good luck.
I have sent you a PM. Just click on the flashing icon.
Welcome aboard Vernon. As Christine said, food and water intake are crucial to getting through this. And this forum is a huge help as well. Do you have a feeding tube? Some make it through without but I don't think I could have. Good luck to you.
Hi Vernon - welcome to the family. Several times it was mentioned above to maintain your food and liquid intake. While we are/were all told this at the beginning of our journey one important factor is often unknown until it's too late, and that is why is food intake so important.
There's two things going on here, 1. cancer and the treatments for it are hyper-metabolic. That means that the disease and the treatment are high calorie consumers. It's like the pregnant woman who is eating for two; well you are eating for three. After the disease and the treatment get their daily portion if there is anything left, that's what you get, so you literally have to double (maybe even triple) your daily intake.
2. With the loss of taste that we all go through, the loss of appetite also comes. You just don't have any desire to eat. Imagine how devastating that can be to your health, to not eat and then the little bit that you do eat to be consumed by the disease and treatment. It doesn't get said a lot around here, but it's easy to become malnourished to the point of requiring hospitalization.
I'm one of those people who think it's important for people to know the why of what we're doing, not just the what. To me it just makes everything more understandable to know why.
I managed to choke down usually 3/4 of what I needed on a daily basis throughout treatment. Still I lost 44 pounds overall. Now, I was a plump little dumpling before treatment began, so I had some extra to be able to lose. If you started out skinny like a bean pole, it will be super important for you to eat during treatment.
Hang in there and welcome to the family. We will help you get through this.
Tony
Hi welcome you've gotten lots of great advice.
hugs.
Thank you very much! Everything just tastes like metal right now. The lemon water works well and mixed frozen vegys still taste ok. Someone offered the use of aloe juice as a rinse. It tastes bad but seem to keep the soreness down. Still searching!!! Blessed to have a chance!!
Thanks!!!! Week 3 chemo/ radiation. Vernon
My RO told me to buy the drinkable aloe vera juice and use it every day; seems it has had numerous medical studies done on it with positive results reported often.
Most of the time I felt like I had a mouth full of copper pennies. Eventually it does get better. And I found sucking on lemon drops helped also.
Yes My Doctor advised I get it early. I have been trying to work but my voice I use at work and I don't know if I will have that use after this week. It seems my tongue is swelling, making eating and talking harder. I get a pep talk from my DR about use it or lose it! So I am drinking water and eating as much as I can. My teeth are in good shape and I have fluoride trays. Only issue is they gag me most of the time and I sometimes throw up the food I have eaten. Thanks for letting me speak about daily issues!! I hate to complain to my family. They are really worried.
Thanks I am a 55 year old at 225 pounds. Lost four pounds last week. Your comments really explain what it takes. I am ready for this!! Best to you!!!
At some point you may lose ALL taste... then it's just nothing. Which I suppose is better than metal. I found that natural foods. In their natural form tasted best. SO no processed foods with crap added. Fresh veggies (fruits were acidic and had NO sweetness so they were very bitter - still are) I'm a vegetarian so I can't speak to the meat but the less chemicals added the better the taste. Sores - you can try manuka honey it may help.
Hugs
Thanks funny watermelon seems the best right now. We did try pasta tonight. Whatever it is I just have to keep eating!!! I cranked up the water intake today, chemo on WED!
Yeah watermellon is cool and usually sweet and bland so great - enjoy
Watermelon is also one of the best sources of potassium you will be using a lot of on this journey. Enjoy it! Experiment with some smoothies. You may need them eventually. Watermelon works well in those too.
I have been trying to figure out this HPV thing. I have been married to the same wife for 32 years. I am not a participant ever in what I am reading this is caused by. Where did this come from? Regardless, I will have this the rest of my life. My question is, will I ever be able to kiss my family again? I have avoided all physical contact with my family until I know what to do to protect them.
Things changing rapidly.
Vernon - The short answer is most everybody gets it and for many, the immune system clears it on its own. Specifically re kissing:
<<Oral HPV is not casually transmitted by sharing drinks or simple kissing on the lips. It is unknown if penetrating type kissing (French kissing) is capable of transferring an infection.
HPV is not transferred by intimate objects such as sharing a spoon or on surfaces such as doorknobs.>>
The above quote is found at the HPV link noted in your post above and if you go to the link about patients' questions re HPV, there is a wealth of information and all types of questions answered. I have had no direct experience with HPV but you will probably hear forms others who have. Meanwhile - I think you should keep kissing your wife - especially if you are good at it.
As far as HPV goes, there is still much that is unknown about this disease. It is known to cause not only cancer of the oropharynx but also anal, cervical as well and genital warts. If between the ages of 12 and 26, the guardisil shot is available in a series of 3 shots. Getting children vaccinated prior to them reaching sexual maturity is their best bet at being protected against these diseases. Studies are being conducted to determine if the shot would help older, already exposed patients. Also a study is being done to see if lesser treatments can be given to HPV+ OC patients as they generally respond much better to certain OC treatments than non HPV patients. There is still so much to learn about HPV.
HPV is a sexually transmitted disease. It is also potentially transmittable via oral sex. Warts are a form of HPV. We get them on our hands and feet by simple contact. They are not necessarily the same strain as the OC or Anal, cervical cancer strain is, but it is a form of it.
There area lot of unknowns. Unless you are completely celibate, and a virgin, with history of NO sexual play ( we all know that you don't have to actually have SEX to get a STD ) they you have faced potential exposure, so it isn't confined to a certain type of behavior.
If your partner is the only person you've ever been with, or you've only had standard missionary sex once in your life, you still have been open to exposure - even with protection (I say this because an open sore can exist even outside the area a condom covers.
hope this helps somewhat - though I suspect I may have just muddied the waters.
hugs.
Thank you! I had a great talk with my Dr. He explained my situation well. My mouth has changed alot as I finish week three today. I was told to take robatusin for mucus. I have a special mouthwash and liquid hydrocod. Man that stuff works good!! . What type of protein substitute should i use for replacement or will peg food cover my needs completely? my weight is still constant but i feel a few inches coming off the belt. vg
I personally am a vegetarian - so I go for the non whey based proteins made from ancient grains etc. They have no sugar added. You need to up your protein to help promote healing. A health food store should have a variety of powdered protein. One scoop even added to an ensure will help. Hugs
Be aware extra protein can contribute to loss of appetite. There is a great vegetarian protein made by Vega Sport. About 25 grams a scoop. Your body may not benefit beyond about 26 grams every couple of hours. Best to stretch that out if possible.
Also, if the Robitussin burns to much ask specifically for Siltussin SA. It has the same ingredient you need, guafenesin but it is mostly for diabetics and folks with sore throats with no alcohol or sugar. Prescription only.
I have had some issues finding anything that does not taste like metal. We went to panera bread and the only thing that looked good was the kids meal butter on pasta. All that great food and bread and knowing i can't eat it. I got my samples of peg food. I guess I will try that tomorrow. I went walking with my wife at the shopping centers just three hours and i completely ran out of gas. I have a few things still to work out!! sorry for this rambling. Got some quiche for dinner and I was able to get it down. little victories!!!!
Treasure those little victories! You will find many along this journey. It's odd how everyone has pretty common things going on with taste but each of us are different. For me, it was cardboard. It still is for chocolate most of the time, 11 years later.
Same with the running out of gas. It's like walking carrying something on your back and each week someone's adding weight for some and nothing for others.
Vernon, even if the food doesnt taste like it should its still a good idea to keep trying to eat by mouth. I know its not easy to eat things that dont taste good. By continuing to swallow all the way thru treatments will do wonders in helping you later when its time to recover. The swallowing function if not used will quickly forget how to work correctly.
Hang in there!
Thanks just having down day! Today is a new day!!!
Thanks I am sure things will get better. The first three weeks went so well it took me back when things changed so much, The chemo day on wed. kind of makes the metal thing happen mostly to Thursday. This week it stayed with me a few more days. I just need to adjust what i do. You guys are great! Thanks again.
Reading this thread gives me a grin. I never got either the PEG or the Metallic taste, I just lost my entire sense of taste completely; exactly like there was a switch in the line between the taste sensor and the brain; and someone abruptly turned that to "Off." That was sometime in Sept, '09.
There was one plus to this, I was given a case of Jevity (the liquid nutritional mix given through a PEG) which I doubt I could have tolerated due to the taste, which fortuitously for me, was not an issue at the time.
In the year that I had no recurrences, taste returned somewhat, starting with Chocolate (which has faded in and out over the time since my first recurrence in Feb, '11) I attribute this to the large amount of chemo I got in those following years up to mid-'13 when Xeloda (5FU) stopped working for me.
Oddly enough, while I could taste chocolate in food or drink, eating a chocolate bar was like eating wax. Milkshakes, on the other hand, yummmmmm...!
In the last year, I had only radiation and my taste returned to something >90%. Some meats lose their taste after a number of bites and some foods seem to have permanently altered tastes, but by and large, I'm as close to "Normal" as I ever was wrt taste.
I never had a PEG but I remember a couple of weeks after rad began my taste went yuck. Nothing tasted the same or even edible for the most part. Eventually just about all my taste was gone except some sweetness which to this day remains my strongest taste.
I seem to not be able to swallow at all now. Taking the mouthwash and liquid pain killer does not much help. Going to 5 cans of food a day thru peg. Is that too much a day? It is becoming a every two hour process. I guess getting weighed to today will tell. As long as I don't swallow the day goes by ok. The roof and back of throat stays raw. Chemo and radiation today. I have some things to ask my dr. Cheers
Thanks so much!!!
Vernon,
Can you add a Signature Line so posters can better address their remarks?
Please continue to use your swallowing muscles each and every day. Those muscles quickly forget their purpose.
Where in Va are you?
Ive resent you the PM with info on how to make a signature.
Vernon... is your not able to swallow related to pain? If so try using the magic mouthwash to numb then sip water, or something (ensure) 5 feeds a day is great. If you want to try running a couple overnight on a slow drip then it may take away being hooked up every few hours during the day and give you more freedom. (you could probably fit it about 4-5 cans in one bag and just let it run very slowly)
You should continue to try and swallow even just a little fluid. I get that it's painful but suck it up and do even a little - radiation burns the crap out of your throat etc... you do not want the muscles in your neck to atrophy and to be stuck on a peg for life. This can happen. So it is important to maintain the swallowing reflex.. Hugs and keep on pushing through. The end will come soon enough.
We live in the Tidewater part of Virginia. York County
Thanks and sorry for not adding a signature to the post.
Thanks The Dr gave some better pain medicine and I was able to drink and eat some food today. Lost 4 pound from last week. If 5 cans is the need then That what will happen. 3 chemos and 17 radiations to go. I won a drawing for free Jimmy Buffett tickets for this Saturday night in VA Beach Va. Things are going great!!!
Thanks The way I am trying to work this out is it is just a few weeks stop thinking about so much about what you don't have and more about what you do have. The hair started coming out on sat and I got my daughter to shave it off. When I went to Chemo today I felt more like the family
of fighters. Thanks
[quote=Vernon]Thanks The way I am trying to work this out is it is just a few weeks stop thinking about so much about what you don't have and more about what you do have. The hair started coming out on sat and I got my daughter to shave it off. When I went to Chemo today I felt more like the family
of fighters. Thanks[/quote]
Hi Vernon,
If you incorporate that as your basic philosophy, I promise you that your life will improve markedly. It's the philosophy of the Warrior.
Thinking about what you've lost is avoiding the reality that is now your only reality. Good things seldom result from attempting to avoid that.
And it may change many more times before your final sunset.