Hello everyone. Well I need to know what tastes good for others. As of Sunday everything started tasting horrible and after my Dr. visit today it looks as though the mucositis is here or atleast well on it's way because he just kept saying "when this starts hurting, come and see me." Tapioca pudding and ensure is about all that tastes ok. I just thought I'd check to see what worked for others. I hope everyone is having a good day.

Lee,

It seems to be a little different for each of us -- I pretty much lost all taste during nuking -- Post-nuke, the first taste back was salt and pretty soon everything was tasting too salty -- Now, one year out, I can taste many things but noticed that only lasts for a few bites, then (like a pervasive smell) my taste buds seem to filter it all out and things just taste bland -- I still don't taste sweet stuf well, and chocolate is waaay too dry to be tasty.

lee,

How many Txs have you had?

I went from normal taste to bitter to no taste to a little sweet to some taste to better taste to pretty good taste. My taste didn't start to recover until 3 weeks post Tx. I am now 5 months post and I really taste things well and my dry mouth has improved enough that I actually almost enjoy eating again. I have also started to regain some of my weight back but beer still doesn't do much for me. I have started to enjoy choc chip cookies and donuts which may explain the weight gain? LOL

I'm only 5 rads in and 1 chemo. I've had 2 neck surgeries plus the tonsils removed most recently so my taste have been messed up since 12-26. Everything went bland Sunday. Almost awful tasting. I was very suprised today at how fast my throat changed. I had noticed a little bit of drying or something since my 2nd treatment, but today it went south very quick. I started to feel a little nausea after my visit and my throat really started to change. It feels dry and swolllen inside, but not painful yet. I guess I'm a little freaked out about the sudden change. I DID NOT realize how much I took taste for granted. I Do now. :-)

lee,

I posted this about a month ago for another poster. I hope you find this useful.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Lee,

I am 4+ years out and what David has written is important to digest (no pun intended). Food and water are the most important things you can do to keep energy going and avoid the PEG tube. I ended up on a tube because I lost 10 lbs the first 2 weeks because it just sucked to eat or drink anything. The side effects of radiation hit me quicker than most.

As for the taste, mine did not totally "recover" until 14 months after the radiation Tx. This goes almost hand-in-hand with the amount of saliva. At about that same time, I noticed the saliva had returned to the post surgery amount. I can not tolerate peppers and various hot foods now because it feels like I dump alcohol on an open wound on the tongue.

Anyway, I hope that gives you and long term picture of what you are facing.

Jim

Lee,

My husband just had radiation, no chemo, but the things that he could tolerate (as opposed to tasting good) throughout radiation included, scrambled eggs, blueberry pancakes (with fresh blueberries in them not on them, no salt butter, and NO syrup), pork sausage, ham, dark meat chicken (he used to just eat white meat), fried potatoes, and Boost. For a while during radiation, he was actually eating saut

Lee;
Like you I had seven weeks IMRT with 3X cisplatin. Taste/swallowing progressively went down after about week 3 but I really lost it in week 5 to the point of not swallowing at all. We're all different but until I couldn't swallow at all I had a lot of eggs prepared over easy so the yolks provided moisture. Even after I could eat again the eggs were one of the first foods I could handle. I'm coming up on 4 months post TX now and eggs are still one of my main staples. Every day does get easier and I experiment a lot. Acidic foods and even mildly spicy foods aren't too friendly at all. Breads require a lot of water to wash down so I minimize using them. Barbara hit on the dark meat chicken and she's right, it holds more moisture and seems easier to get down. Red meats provide challenges but I'm to the point that I can handle a small serving (3 ounces or so cut up very small) fairly well. Continue to experiment and continue to eat often. The exercise of the mouth is improtant as well as the nourishment. When I couldn't swallow my weight dropped dramatically, even with constant use of a PEG tube, and now it's been a challenge stablizing. Although I'm eating (what I consider well at this stage) my doctors argue the stablization thing and won't remove the tube at this point. So eat well and eat often. If you can handle milk you might buy some protein powder. GNC has one several to choose from with one type that is like 2,200 calories per serving.

Best wishes and you will improve!!! Hang in there,

Steve

Please run any extra protein powders past your dietician. What a lot of people don't realize, that for your kidneys to "process" all that extra protein, you have to add a LOT of extra water into your diet. If you become dehydrated with that protein added, you run a real risk of renal damage.
I know the protein is important, just be careful with the hydration also.

Andrea

Thanks everyone. I'm having a little luck with eggs for breakfast w/ensure and small chicken snacks through out the day. My mucous is thickening and my throat is tightening up but there is not really any pain. Thanks for the honesty too, I'm tired of hearing the it's all going to be ok's. I know in my heart I can do this but I was unaware that it would be this difficult. I have a great respect for those of you that have been there and thank you for helping me understand what I need to mentally prepare myself for.

lee,

Look into the Carnation Instant Breakfast VHC. It has almost double the calories of Ensure or Boost Plus so you would have to swallow as much when the pain and nausea worsen.

Hang in there. You can do it...you will find the mental strenght. It is your life that you are fighting for and there isn't any better reason than that to show this cancer who's boss.

Todd also has lost taste for all foods. He just had first Chemo and into 2 week of rad. Any suggestions on foods that he can tolerate?

Linda,
I lost all taste for foods at the third week of chemo/rad and, eventually, quit eating altogether and lived solely on my PEG for several months. However, once I began to be able to swallow again my favorites were chocolate milkshakes that I would make at home, and matzo ball soup, which, unbelievably sustained me two meals a day for over a year.
The good news is that in the past couple of years I have regained the ability to swallow and taste just about anything that is not too spicy, even including breads, nuts and even popcorn. (with a lot of water to wash any and all of this stuff down, of course)
My wife and I went out last night for a wonderful Valentine's dinner and I ate a delicious lightly blackened red fish with crabmeat and lime butter. I enjoyed the taste of the salad and of the fish and vegetables as much as I ever did before cancer treatment. Desserts also taste wonderful again. Strangely cokes and Dr. Pepper's taste like unsweetened syrup.
By the way, four and one half years after treatments...I still really like chocolate Hi Protein Boost and always keep it in my office and golf bag for snacks. My golf partners like it too and have taken to pinching Boost from my locker and golf bag!

Best of luck,
Danny G.

Toward the end of my husband's radiation I was buying out the turkey pot pie soup and chicken pot pie soup at the grocery. One is Campbells the other Progresso. Besides scrambled eggs (with milk added for moisture) and boost that was about it. He also liked the Campbells double noodle chicken soups, but the cream ones have more calories.

Again, thanks everyone. I am having luck with the eggs over easy, grits, and shells and cheese really watered down. I see my onc. tomorrow for labs so we'll see how it goes. I am having a little troulble finding the carnation VHC. I'll keep looking. I noticed too, that my jaws are tightening up overnight. I think it is all so odd because it happens over time and not right after a treatment. It's just hard to understand I guess because I'm used to either being sick or not, with this it's just strangely different. Thanks Again. Your posts really helped me find some things to keep my health up as well as encourage me.

Lee,

You have to order the VHC from a pharmacy. My jaw did the same as yours and it still does today. I use a stack of tongue depressors to stretch my jaw a couple of times a day. Some other folks use a device called therabite I think, maybe they'll come along and tell you about it. It's very important that you keep your jaw working properly.

Lee, Tim's right about the jaw issues. I have had a rough time with it as well. I have a close relative who is an oral surgeon, and he made me an acrylic wedge for stretching the jaw muscles. I have also had great success with massage therapy to ease some of the trismus.

After my radiation ended last fall, I was barely able to put one finger between my teeth. After three massages on my jaw, neck, shoulder and upper back, that increased by over 100%.

Even with the improvement, it still gets really stiff if I don't exercise it regularly. The Therabite system works well, but it is several hundred dollars, and I think the tongue depressors or a wedge work equally well, and certainly cost a lot less.
Wayne

Lee,

I found yawning helped stretch my muscles a lot and I learned how to control the yawn when it became painful. I never needed anything else but I didn't have any surgery.

lee33:
I have the same issues with getting my mouth open, especially in the morning or when I've not opened/stretched for a while. I agree with the posts above regarding the tongue depressors and yawning. After seeing a therapist and going through a few massages, and doing some simple exercises for my jaw and tongue, things started getting better. I also started using Biotene moisturizing gum, which has helped me with both my jaw as well as working my tongue. My therapist did say to take it easy with the gum and not over do it for long periods, but I chew a couple pieces a day. I found it neat to chew gum for the first time in over a year even if it wasn't for very long periods. You might want to run that by your Dr. first. Glad to hear the eggs and grits are working for you. I also had luck with some cereals by letting them soak in milk and get mushy first.
Sounds like you're doing great!!
Best Wishes,

Steve

Lee,

I am 10 treatments in and know what you mean! I have lost all taste except for strawberry which I can taste on the outside of my tounge like it is very far away(if that makes sense). I was not quite ready for how fast the pain set in for me, it was literally overnight. Good luck and I hope all goes well for the rest of your treatments!

BILL

Lee - my son also had trouble finding the Carnation VHC. I finally got it online. If you just do a search for Carnation VHC you'll see several sites that supply it. It might be a good idea to only get a small quantity to see if you like it. My son's taste seemed to change quite often sometimes within just a few hours. In the beginning he liked tapioca but that didn't last long, then softly scrambled eggs, milkshakes going from chocolate, strawberry, vanilla to no milkshakes at all. Chicken noodle soups lasted quite a while and grilled cheese with lots of butter. Now he enjoys most everything except not cheese (too sticky) and no chocolate. I guess you just have to try different stuff and see what works. Good luck with your treatment. It's a rough roller coaster ride but you can do it!

Thanks to everyone. I'm still swallowing but have lost mostly all taste in the last week. It's neat, the only thing that is good is plain iceberg salad, cucumbers and baby carrots. I never thought I would like a plain salad. Unfortunately it's not much help calorie wise but it allows me to continue eating as there's plenty of moisture invovled. I think it is now to the drinks mixed with 8 ounces of milk. We'll see how long that lasts, my tonsil area and throat are dry and burning now. I'm almost halfway on my rads and did my second chemo today so I seem to be keeping pace with what seems to be the normal time ranges for the changes. I'm going to look for the VHC though. I lost 12 lbs so far and my dr.s aren't exactly pleased. I still am about 15 lbs away from my ideal weight for my size though. It's been 13 years since I've seen that though. Thanks again.