Regaining appetite and taste
My tastebuds were shot after just 2 sessions of RT and 0 chemotherapy, but worse was the fact that I developed an aversion to food (and drink) within a couple of weeks. Despite fighting against it, I was soon losing weight, dropping from about 190 to 165 pds in two weeks. I had a port and more recently a PEG which have been used to keep my weight stable.
My question: What experiences do you all have with (a) regaining appetite and wanting to eat again, (b) regaining taste funtions? How long does it all take? Any tricks/advice? No doubt the span is between a few weeks to never, but I would still appreciate some insight into real cases. And you guys are the best for that.
By the way I take my hat off to you all. I appear to have been basically pretty lucky with my treatments - apart from the first dose I had very limited side effects with Cisplatin (apart form the food problem) and limited pain/discomfort and side effects from RT (so it appears from the discussion boards here!). Worst of all has been too much saliva/mucus and the accompanying retching, and of course the whole eating issue. My skin (within and without) seems to have handled it all very well by all accounts - at least up to now. I mention this only to testify to new sufferers that it is not always quite as terrible as "they" say, though even what I had, I would not like to go through ever again!
Good luck to all of you!
Comments
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Welcome
Hi rasselas....
Welcome to the forum, good people here and a lot of experience and people willing to share.
I also had nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU). Then like yours, I had seven weeks of concurrent weeklt Carboplatin and 35 daily rads.
I did have Amifostine Injections before each rad, which main purpose is to help reduce or eliminate the thick ropey mucous you mention. Another benifit is helping to regain salivary function.
I can only say that in my case I believe the Amifostine helped. I never got the thick mucous and both my taste and salivary function have returned to around 90%. Mainly only drying out at night.
It's a very slow process, after first finishing rads, I had to have a bottle of water with me at all times. Each bite of food,a swig of water, every few sentences, a swig of water....
Absolutely no taste for several weeks, eventually both returning a very litttle at a time. Measured more in weeks and months, definitely not days....
During the time of little taste I didn't think of eating that much as I couldn't. I mainly survived off of Ensure Plus, a few sliced peaches to keep the throat working, water and pain meds and solutions..no PEG.
I also had very little complications or side effects from the treatment.
I did record tons of food programs though...couldn't even drool watching them though, LOL...
Once your taste starts returning and any pain subcides, I think your appetite will return. No tricks that I can think of...just time.
Hang in there, glad things went as well as possible....
Best,
John0 -
I second John’s WelcomeSkiffin16 said:Welcome
Hi rasselas....
Welcome to the forum, good people here and a lot of experience and people willing to share.
I also had nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU). Then like yours, I had seven weeks of concurrent weeklt Carboplatin and 35 daily rads.
I did have Amifostine Injections before each rad, which main purpose is to help reduce or eliminate the thick ropey mucous you mention. Another benifit is helping to regain salivary function.
I can only say that in my case I believe the Amifostine helped. I never got the thick mucous and both my taste and salivary function have returned to around 90%. Mainly only drying out at night.
It's a very slow process, after first finishing rads, I had to have a bottle of water with me at all times. Each bite of food,a swig of water, every few sentences, a swig of water....
Absolutely no taste for several weeks, eventually both returning a very litttle at a time. Measured more in weeks and months, definitely not days....
During the time of little taste I didn't think of eating that much as I couldn't. I mainly survived off of Ensure Plus, a few sliced peaches to keep the throat working, water and pain meds and solutions..no PEG.
I also had very little complications or side effects from the treatment.
I did record tons of food programs though...couldn't even drool watching them though, LOL...
Once your taste starts returning and any pain subcides, I think your appetite will return. No tricks that I can think of...just time.
Hang in there, glad things went as well as possible....
Best,
John
Hope you enjoy it hear and plan to stay awhile. Everyone if different so don’t get disappointed if your taste don’t come back as soon as someone else. I had some sensation about a month and half but the real taste did not start till a little over two months.
I like John had Amifostine all the way through my 35 rad treatments, I did not use a PEG tube and lost a lot of weight but was able to eat with no taste during treatment. My Saliva glands are working at 70% of normal but find that using Stoppers4 at night relieves any dry mouth problems.
Take care and again welcome
Hondo0 -
Howdy A third welcomeHondo said:I second John’s Welcome
Hope you enjoy it hear and plan to stay awhile. Everyone if different so don’t get disappointed if your taste don’t come back as soon as someone else. I had some sensation about a month and half but the real taste did not start till a little over two months.
I like John had Amifostine all the way through my 35 rad treatments, I did not use a PEG tube and lost a lot of weight but was able to eat with no taste during treatment. My Saliva glands are working at 70% of normal but find that using Stoppers4 at night relieves any dry mouth problems.
Take care and again welcome
Hondo
I am glad your side effects have been minimal. Like you, i have no appetite and never crave food. I am 14 months post treatment now and am eating quite a lot. However, I am never hungry and can go days without eating I think....My wife tells me to eat and I try to eat a lot of small meals throughout the day. I drink shakes to help add calories too.
I tell people I'd be a millionaire if I knew what stopped my appetite button. People are looking for the diet miracle and we have it!!! I don't think Rads is a good way to lose weight however, lol.
Try what I do, eat a lot of small meals as often as possible. I am holding my weight and some things taste great but I have no craving for food, like you. I am hoping that will come back over time, but for now I take it as my new job, eating. I eat to live as opposed to my old self who lived to eat !!! best of luck in the struggle. But remember, life is still good!
All the best,
Steve0 -
My husband got a peg tube
My husband got a peg tube toward the end of rads and we were so glad since you keep cooking for a few weeks. He would get most of his nutrition with ensure plus and jevity so whether he had an appetite or not that was mandatory. Your body needs lots of calories to heal so push yourself to keep records of your intake and if you are starting to put some weight back on. Then, by mouth try to begin to enjoy and introduce a few new foods a day until you have some nice variety in your day. It will gradually increase.0 -
Thanks to all
Thank you all for these first replies. It is so nice to have contact with fellow travellers!
I am going to start another thread - though probably someone has done it before! - with the best short tips for handling various aspects of treatments, in particular those which I have not yet come across in the basic literature like "Chemo and RT for Dummies" or whatever it is in English. I read it in German!
Thought for the day: It is very difficult sometimes to remember that what is making you so ill during chemo and RT is actually supposed to be making you better. Poor doctors and nurses who have to deal with our grumpiness! It is not a job I would like to have.0 -
rasselasrasselas said:Thanks to all
Thank you all for these first replies. It is so nice to have contact with fellow travellers!
I am going to start another thread - though probably someone has done it before! - with the best short tips for handling various aspects of treatments, in particular those which I have not yet come across in the basic literature like "Chemo and RT for Dummies" or whatever it is in English. I read it in German!
Thought for the day: It is very difficult sometimes to remember that what is making you so ill during chemo and RT is actually supposed to be making you better. Poor doctors and nurses who have to deal with our grumpiness! It is not a job I would like to have.
I second the welcome I also gave you on your other thread. In Germany? We got a couple in England, though they don't make many posts, and one in Thailand, and the Scam in China/Hong Kong, Hawvet in Hawaii and a couple in Canada, but you're the first I know of in Germany, which is cool. Was wondering if there's a German Cancer Society? Not sure how many people there are in Germany, but know it's big enough to have such as that.
As for the "Chemo and RT for Dummies" book- is that really a book that exists in German? I sure coulda used such as that a couple years ago, and don't know of such existing, here, even now. Close as we come to it is Sweet's Superthread, here, to my knowledge. If that book does exist in German- could be the Germans are ahead of us in understanding what the H&N patient goes thru.
kcass0 -
TASTErent foods.
I finished treatments april 25th. As mentioned all cases vary, but I personally am slowly getting my taste back. I keep experimenting with different foods to see what is coming back. Cherry lifesavers came first then brown sugar. i taste canned chili, but only for the 1st few bites. Fewer foods are bad tasting, just bland. I keep my calories up by continuing to drink isosource. This also seems to help with my drymouth too for some reason. I wish you the best of luck in your recovery, I know the lack of taste is very frustrating. Stay positive!!!0 -
hi
hi there best advise i can give anyone on here is speak to yr consultant , it all depends on your dose level and treatment, myself i had 25 daily rad treatments last one morra, like yourself i have lost a hell of alot of weight and still losing , all i can get down me is frosties! i have been told my taste will come back slowly. i love spicy food cant touch it at the moment, good luck to everyobe on here .
ian0 -
Welcome Abroad
Hi Rasselas,
Yes it sounds as though you made it through in relatively good shape. Good for you.
As the taste of food returned, so did my appetite. A few select foods began tasting better (or less bad) after about 2-3 weeks. And it's been a steady progression since. I am 10 months post treatment now and my taste has returned 90-95%. I can eat spicy food now, although not as spicy as before treatment. I have always enjoyed onions, but for some reason they taste really good now.
In my case, the improvement in taste was not an across the board kind of thing. Some things tasted better and others stayed the same. Keep trying different foods to find what is working for you. When I was about 1 month out from treatment, some friends were having pizza, yeah it smelled so good but when I tried it the taste was like stale cardboard. Other things had already started tasting better by then, but not the pizza. Eventually that came back too, I can dig into a deep dish pizza with the best of them now. Cheers
Jimbo0 -
Thank you all
Thanks for all the tips and input. Obviously varies a lot from case to case but it looks like quite a long haul. Never mind, we have all had worse experiences than that and there is more to life than just eating (at least that is what I am telling tell myself ;-)! At least there is an end in sight and perhaps the possibility that rediscovering food will eventually mean it tastes even better than it used to. I shall certainly never take good tasting food for granted in future.
In that connection have a look at this fellow traveller, one of the best chefs in the world who carried on working even while his tastebuds were still out of action. A cool story you must read.
www.npr.org/2011/03/03/134195812/grant-achatz-the-chef-who-lost-his-sense-of-taste
Good luck to everyone!0 -
Six months outrasselas said:Thank you all
Thanks for all the tips and input. Obviously varies a lot from case to case but it looks like quite a long haul. Never mind, we have all had worse experiences than that and there is more to life than just eating (at least that is what I am telling tell myself ;-)! At least there is an end in sight and perhaps the possibility that rediscovering food will eventually mean it tastes even better than it used to. I shall certainly never take good tasting food for granted in future.
In that connection have a look at this fellow traveller, one of the best chefs in the world who carried on working even while his tastebuds were still out of action. A cool story you must read.
www.npr.org/2011/03/03/134195812/grant-achatz-the-chef-who-lost-his-sense-of-taste
Good luck to everyone!
from rads and chemo.
Have gotten almost to where I have "appetite" if I can distinguish that from "hunger". I certainly get the physical hunger pains when the stomach says it wants to eat something. But I am just getting to where I actually want food and this desire its greater than the sort-of food revulsion that I acquired during the months of throwing up and such. It got to where it took real will just to open up and put it in. But that was my job and that was how I was going to survive. I hope you never get quite there.
Have regained great majority of taste with just a few odd things. I can finally taste chocolate right, for example. If I had more saliva it would be even better as they work together. For whatever reason, ice cream doesn't taste right but that is more mechanical as it doesn't feel right and my mouth gets this coating. My wife, DrMary, theorizes that the lack of the specific chemicals in saliva causes these certain foods that depend on those chemicals (enzymes) to be "right". More water helps chewing and swallowing but doesn't replace the chemicals. So she experiments on me with different pseudo-salivas. It's OK. Cancer is more fun for some people than it is for others. Doug0 -
Chemo for DummiesKent Cass said:rasselas
I second the welcome I also gave you on your other thread. In Germany? We got a couple in England, though they don't make many posts, and one in Thailand, and the Scam in China/Hong Kong, Hawvet in Hawaii and a couple in Canada, but you're the first I know of in Germany, which is cool. Was wondering if there's a German Cancer Society? Not sure how many people there are in Germany, but know it's big enough to have such as that.
As for the "Chemo and RT for Dummies" book- is that really a book that exists in German? I sure coulda used such as that a couple years ago, and don't know of such existing, here, even now. Close as we come to it is Sweet's Superthread, here, to my knowledge. If that book does exist in German- could be the Germans are ahead of us in understanding what the H&N patient goes thru.
kcass
Hi Kent,
Sure, the book was originally written in the States. A bit late now for you, you'll know most of it! but great for anyone you know starting on the road. Here is a link. Very practical, down to earth and useful book.
http://www.amazon.com/Chemotherapy-Radiation-Dummies-ebook/dp/B0052O7B6U
Don't forget I am English when you ask about Germany! Germany has a population of 82 million and has a very active cancer society. But I feel more at home chatting in English, especially with Americans who are always so up front, open and practical, and friendly!
Have always been a fan of the US, played a lot of softball in London when there were only about 5 teams in the whole of England. We took on the Petty Officers at a local US navy base, and the security staff at the US ambassadors residence and beat em both! Meatball came by one day and played in a pick up game. Great guy.
I've seen a fair bit of the States too myself but never actually passed through Iowa! Kansas, Missouri, Illinois yes, but Iowa, not yet!
Take care of yourself.
Robert0
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