One patient with glioblastoma still alive nine years later
by Traci9398 on Fri Jan 18, 2008 12:00 AM
Let me introduce myself, my name is Traci and my father, Bob, age 66 has EC, diagnoised in Aug, sugery Dec 19th.
I can't seem to find an answer to the problem he is having. Everything taste horrible to him. Any food or liquid, has a horrible taste and he is only able to gag down a few bites. This seems to have developed after surergy. During chemo, it wasn't a problem. When he was finally able to go on a soft diet about 7 days after surgery, the food still had a pleasant taste. But for the past couple of weeks, he can barely eat a few bites.
Has anyone else experienced this and if so, is there anything he can do to enjoy food again? Is this a passing side effect or possibly a lasting one?
Dr's can't even seem to help, any info you kind folks could provide would be greatly appreciated. Physically and mentally, he is going downhill, and fast. I'm so worried about him!Traci
by Gerri on Fri Jan 18, 2008 12:00 AM
I had surgery in 04 and went throught the same thing. Sometimes I would smell food and get sick to my stomach. Meat was out of the question. I started by eating small bites of cold food. I could never tolerate Ensure, I would have diahrea within an hour. I lost 32 lbs. One day I decided that if I was going to live, I had to eat. So I told my husband I wanted one or two bites of something loaded with calories or protein every hour. Thats the way I started. Sometimes it would be ice cream, sometimes it would be a bite of cheese. Sometimes I would ask for something and I would change my mind before he got it to me. What a jewell he is to put up with me. Now I can eat much more, I was 64 at the time, I am now back at work (Youwould think I would be smart enought to quit, but I am so grateful for my energy that I love work) I have gained 15 of those lost lbs back, I have clear CT's and I still eat very small amounts, but much more than I used to. Food still doesn't taste like it did before surgery, but much better than it did when I was going through your dads present stages.
Please pass this on to your dad and tell him this will get better, but he must get some calories of some kind. Good luck. I will pray for him and everyone who loves him, most especially you.
by Bill1941 on Sun Jan 20, 2008 12:00 AM
I had the surgery in September of 06. Following the surgery, I had additional chemo until January 07. I gradually had my sense of taste change such that there were very few things that I could eat. I couldn't stand beef, coffee, even water. I forced myself to drink Ensure and filled up on snacks and candy that I could stand. The sweeter the better and in some cases, the tarter the better. About 6 months ago, my taste started to come back to normal. Now I enjoy a good steak and just about any of my favorite foods. The only problem I have now is that I cannot eat more than a 1/2 portion of anything. This means that I am always bringing a doggy bag home from the restaurant.
Tell you Dad to hand in there and stick it out. It will get better and in the meantime, eat whatever he can get down, even if it is only snacks and candy.
by Cyclist on Sun Jan 20, 2008 12:00 AM
I had the surgery in mid-2005. I remember food tasting horrible. I couldn't even eat chocolate or drink Mountain Dew!!
What worked for me was to eat spicy - yes, spicy - food. I was able to eat spicy stuff pretty well. It didn't take too long for things to get back to normal. As someone else said, now I can eat anything, just not as much of it.
by Traci9398 on Mon Jan 21, 2008 12:00 AM
Thank you all so much for your responses! I've read them all to my dad and it does give him some hope that he (one day) might be able to eat again and - enjoy it!
How long did it take for each of you to regain your strength. He had the surgery a month ago and still needs a walker to get around. Things like taking a shower completely exhaust him.
Thank you again!
by Cyclist on Tue Jan 22, 2008 12:00 AM
On 1/21/2008 Traci9398 wrote:Thank you all so much for your responses! I've read them all to my dad and it does give him some hope that he (one day) might be able to eat again and - enjoy it! How long did it take for each of you to regain your strength. He had the surgery a month ago and still needs a walker to get around. Things like taking a shower completely exhaust him.Thank you again! Traci
I was able to get around pretty soon after the surgery. I was 54 at the time. Your Dad's a little older.
What I tell everyone is to "keep moving". That's what my surgeon told me and I did it to the extreme. I'm glad I did.
Your Dad will be a little stronger every day. He'll have to wait a little while before running that first marathon though! Be patient.
by angela759 on Tue Jan 22, 2008 12:00 AM
Hi Traci & Traci's dad!
I had surgery in May '07 (resection). Immediately after the surgery, I asked a very young nurse how soon I'd be feeling stronger. She said "Oh, about 6 weeks." (oops,she was very wrong!) The incision was healed quickly, but that was all that happened soon.
Both the surgeon and the oncologist said that it would be AT LEAST 6 months until I felt stronger, less fatigued and my system could establish its "new normal". It actually took about 7 months...but by then I was on chemotherapy and that made me feel fatigued, too.Tell your dad that he will gradually get stronger and he'll be walking without a walker in good time...but he must give his body a chance to heal. Ask doctor about gentle exercise (I used to go for several short walks each day (until the cold weather/snow/ice season hit here). Feeling much better than I did in those weeks following surgery; but still have a long way to go.
About taste.... That terrible aftertaste started with my 2nd chemo infusion (FOLFOX4).Not a metallic taste as some folks describe.... but just a really awful taste especially when I ate even the tiniest amount of sugar...even the natural sugar in fruit/vegetables caused this.Strangely, "Splenda" sweetener did not cause this aftertaste....hmmmm.
Initially this would occur for about 2 days after chemo; then it went away. But by treatment # 5-6, the bad taste didn't go away at all. Suggest dad might experiment with different kinds of food. I've heard lots of people have luck with spicier food. And, since "sour" is the last taste sensation to go, I discovered, quite by accident, that good crunchy dill pickles were about the only food that tasted "normal". Celery with cream cheese was good too. Suggestion made in earlier post of eating many tiny high caloric "meals" thru the day is a good one. The cancer cookbook I was given at cancer center said to avoid any "favorite" foods which make the patient ill. This is so that that smells and tastes of those foods will not become "associated" with feeling sick once the chemo ends.
Hope these things will help you.
by chandainwv on Thu Apr 21, 2011 09:58 PM
On Jan 21, 2008 12:00 AM Traci9398 wrote: Thank you all so much for your responses! I've read them all to my dad and it does give him some hope that he (one day) might be able to eat again and - enjoy it! How long did it take for each of you to regain your strength. He had the surgery a month ago and still needs a walker to get around. Things like taking a shower completely exhaust him.Thank you again! Traci
On Jan 21, 2008 12:00 AM Traci9398 wrote:
I just had surgery wed and wed night all was well but today--everything tasteslike cat poo, even water.
I am told (well I also had radioactive isotopes used in me) that the body /tongue has become acidic, so I am trying alkaline drops and oxygen drops in everythng I drink to see if this quickly comes back to normal.
by mapesuma on Fri Apr 22, 2011 05:19 PM
I had my op in august 2008. Tell your Dad to just hang on in there. It will ALL get better. Don't get hung up on other people's time frames. He will recover at his own pace and he needs to be kind and patient with himself (easier said than done).
My strength and stamina were both slow to come back, Its 2 steps forward, 1 step back, recovery is very inconsistent, but it does go in the right direction. The important thing with stamina is to keep gently pushing yourself. Its impossible to get it just right, and if you do too much you get absolutely exhausted and just have to sit/lie down quietly until you recover. If you don't bother to push yourself things go very slowly so tell him to just keep doing what he can as often as he can. I can now walk 5 miles on the flat, less if its hilly, and have just painted the garage door. Things really do get back, not to normal but to a very good place where he will be able to do most of what he used to, even if in slightly smaller quantities.
If his lungs were affected by the op, try getting him to do some deep breathing exercises, just a few inutes every hour. He may find that this helps if he does it before doing physical things as well.
Taste wise, I have found that most things are back to normal. I even like some things that I didn't used to! Can't eat as much at a sitting but that is countered by the fact that I can graze all day long without getting fat. There is a positive way to look at everything.
Hope things improve soon,
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