Connect
When will food taste good again after chemo and radiation?
My husband was diagnosed with a Stage 4 bladder tumor in early Feb of 2020. He started with 4 rounds of chemo in March and a heavy dose of radiation in March, at Mayo in Rochester, MN. After they determined this was the correct treatment, he began 5 weeks of daily radiation concurrent with Cisplatin chemo two days of each of those five weeks. He never felt nauseated. Never got sores in his mouth. However, his taste buds went haywire. Everything under the sun tasted disgusting.
The odd thing is that he is now just about 3 months past his last Cisplatin chemo treatment and radiation, yet his taste has gotten worse. He can't stand even looking at food. He has dropped 25 pounds since treatment started. The dietician told me to give him six small meals a day. He can't even stand to put something in his mouth once a day.
Sometimes I can get a quarter cup of cottage cheese with canned peaches in him. Other times a half cup of mashed potatoes. Bran cereal in the morning. But no matter what I try he says it's torture getting it down because it all tastes so terrible. I am having him drink Boost 20 gr protein drinks 3 times a day and an considering pushing 4 a day on him. He hates them, too, because they are way too sweet, but he can gulp them down quickly. However, he has to immediately follow the drink with three green olives, to get the sweet taste out of his mouth.
I've tried everything... gargling with water/baking soda/salt before eating. Gargling with black tea before eating. Giving him sauerkraut and other non-sweet foods. (He absolutely hates any meat because he has to chew it). I've given him bean with bacon soup but I have to puree it first, so he can quickly drink it down.
I've been on the phone so many times with dieticians and doctors from Mayo, and they all say this won't last forever. But when his treatment ended they said, "Expect another month or so when your taste is still bad." It's been three months, and I swear, it's gotten worse the last few weeks.
Has anyone ever gone this long with tastebuds totally messed up? My husband is beginning to think this is going to be what it's like for the rest of his life!
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Connect
@pa145k @baz10, so hard to your sons have to go through cancer and loss of income.
As a stop gap, perhaps Find Help can help https://www.findhelp.org/
Find Help is a search engine that can help find financial assistance, food pantries, medical care, and other free or reduced-cost help in your local area by entering your zip code.
I have just finished doing 35 radiation treatments and 3 chemo...for throat cancer and lymph nodes... Not a fun way to loose weight I lost 18 kg...
As other people have said you loose your taste buds ...I think it was week 2 of the treatment for me
Nothing you put in your mouth is your friend ...It hurts to swallow it hurts to chew and the texture of food is repulsive .....I'm now 2 months pass my treatment waiting for a Pet scan to see if they knocked the cancer on the head .... i would say about 5 or 6 weeks before i had any taste back and that would be about 10% if I'm lucky But the last few days i have noticed every thing is starting to go back to Having a hard time swallowing and lack of taste+no saliva ....i have been told this can happen for many months if not years ...every one is different
All i can say to the people who are reading this Stay strong in your mind .....and remember your not the only one going through this
Love and light
-
Like -
Helpful -
Hug
2 ReactionsI had trouble with no saliva as well. I used something called Biotene to help. I used the mouthwash to help saliva production in general, and the spray particular incidents. My taste and smell gradually came back, but it’s two steps forward and one back, like everything involved in healing post chemo.
-
Like -
Helpful -
Hug
2 Reactions@duffster48, I invite you to also follow the discussions in the Head & Neck Cancers group here: https://connect.mayoclinic.org/group/head-neck-cancer/
-
Like -
Helpful -
Hug
1 ReactionI have had 33 radiation treatments and 6 chemo. I had cancer in the base of my tongue and my neck. My last radiation was exactly 12 days ago. I have a feeding tube also. I walked in weighing 190 and now weigh 150. The saliva in my mouth is so thick and the flem that I have to cough up is non stop. I have no taste or it's absolutely disgusting. I just started to swallow ice chips and spoon fulls of water. I want to get back to work but can't because of this feeding tube and how weak I am. It is hard to keep a positive attitude all the time. Everybody always asking how are you ? At least your treatments are done! Nobody understands except if you been there.
-
Like -
Helpful -
Hug
3 Reactions@tirk, come join the discussions in the Head & Neck Cancers support group here: https://connect.mayoclinic.org/group/head-neck-cancer/
Here you’ll meet many who have been there and understand.
Please can you reach out to me I live in Australia. I’ve just been told I have a tumour in the back of my tongue and neck and I’m so scared you’re a warrior I can’t believe what you’ve been through. It sounds awful. I’m really scared about losing weight as well.
Try using plastic utensils, plastic bowels, that seem to help with me
Hi
I have scc maxillary sinus cancer
I will have had three cycles of induction chemo and now they recommend partial maxillectomy surgery for May 2 The ct scan after 2 cycles showed a great reduction on the tumor but they say surgery they need for complete margins. My question is radiation post surgery. if they get all the visible cancer which they are confident. My concern are long term effects of radiation and is it worth it for preventative recurrence Do patients regret it
Is it worth the quality of living fee if preventative. Please respond as I am desperate for advice thank u
After 10 treatments of radiation o my spin and then 5 additional treatments to my ribs I could barley eat and I had no taste what so ever. I lost 25-30lbs during radiation. It was worst compared to 10 cycles of Docetaxel Chemotherapy. My taste and ability to eat more came back 2-4 weeks after completing radiation. With Chemo my taste came back quicker, but I also had no issues with eating during chemo.
As far as regret. I have none with regards to radiation or chemo. I did have some radiation damage to my right lung but it is minor and I do not even feel and issues. The doctors call it radiologic changes. Radiation kills cancer and so does chemo. ADT and 2nd generate hold cancer down but does not kill it as fast as radiation and chemo.
I'm in "Deep Remission" so no regrets. But, radiation is very difficult. As far as chemo, everyone is different. I did not have any side effect except the need for sleeping by Friday afternoon when the chemo started killing everything in my body. I had a bloody nose from time to time (which is normal) and hair loss but no Neuropathy because I iced my hands and feet during every treatment cycle.
It is my opinion that the more you can handle radiation and chemo the better chance you have of remission. But, with that said, some men just cannot go through it or the have severe side effects. We all respond differently.
My wife makes fun of me saying, "you can go through 10 chemo cycles" but you are afraid to take a child's does of Claritin.
I do not regret it. No
-
Like -
Helpful -
Hug
2 Reactions