Taste Change Advice

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crikklekay
Posts: 65
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Taste Change Advice

Postby crikklekay » Fri Jun 15, 2018 10:13 am

My own words are coming back to haunt me, considering I put up a post a while ago asking if having no symptoms means the chemo isn't working and now within a span of 3 weeks it seems all the chemo symptoms finally caught up with him. The mouth sores and hand/foot syndrome issues are bad but manageable, but the worst part is his taste changes. It was mild at first, some meats bothered him but he could eat most other things. Then it was no meat but grains/fruits/veggies were fine. Now it seems like his taste buds are reacting to meat, some fruit & veggies, eggs and all grains. He's eating so little because there isn't much he can eat that doesn't give him a bad taste, the weight is falling off and it scares me. He's living on applesauce, Ensures, bananas, yogurt, tomato soup and fruit smoothies. I bought some whey protein powder to add to the smoothies and tonight I'm going to buy some veggies to see if I can add them as well. I called the nurse and she said there isn't much you can do other than stay hydrated and rinse with a baking soda/water mixture but that hasn't really helped.

Does anyone have any tips? I'm getting desperate. It's really wearing on him mentally too, he's so upset that he's hungry and there isn't much he can eat that doesn't make him want to gag. We have 4 more cycles to go through so we have to manage somehow for another month and a half at least.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Taste Change Advice

Postby dauofcamom » Fri Jun 15, 2018 10:45 am

Staying hydrated is most important. My mom had severe side effects after her first round and ended up in the hospital for eight days. She hasn’t eaten in two weeks and she won’t barely drink anything. She’s complaining about the taste. She had to go back to the hospital yesterday to get an IV of hydration. She knows she needs to but just doesn’t seem to be willing to eat or drink. We all feel utterly helpless watching her waste away.

I hope your husband can manage. It sounds like he has a strong mind though. Bless you both.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

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LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Taste Change Advice

Postby LPL » Fri Jun 15, 2018 12:27 pm

crikklekay,
Years ago, and in another cancer forum, I read & saved the following:

“Some cancer drugs can affect the taste.”
A lady wrote that she tried all kinds of food (for example an egg or a slice of ham) but ’everything’ tasted like ”moldy clay” (she said that of course she had never eaten that but it was her best description).
Her daughter was a Dietitian and she had read about this phenomenon. She tried to season/spice egg and ham with a little(!) sugar. Yes it does sound very odd! But when her mother tried that it all of a sudden tasted like egg and ham again, and not like ‘moldy clay’.
She also wrote that not everyone’s taste might be affected like this. Some may experience that salty or sweet&sour food taste fine but not their ’normal’ food.

Maybe worth a try?

(My DH did not experience any change in taste so this has not been tested in our home)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

martd
Posts: 56
Joined: Tue Nov 21, 2017 3:48 pm

Re: Taste Change Advice

Postby martd » Fri Jun 15, 2018 3:46 pm

Pasta works good for me, with alot of sauce. Or any sauce type food. It seems any dry type food makes it hard to eat. Advise my oncologist gave me was if you find something that works even be it McDonald's just eat that. Another tip I found works good for me is the red and white peppermint candy. It takes the awful taste away. Works good for drinking also. I have one in my mouth while drinking, makes it much more bearable. Hope it gets better for him.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

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mobrouser
Posts: 99
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Taste Change Advice

Postby mobrouser » Fri Jun 15, 2018 7:13 pm

I stopped eating meat after my surgery and live on a diet similar to your husband, however I am able to eat some vegetables and whole wheat bread. I lost about 25lb in the 6 weeks between surgery and chemo, but have been able to maintain my weight since then. Just started #9 of 12 Folfox infusions today.
Basically if food has an odour while cooking or after it is cooked I can't eat it, with the exception of tomato sauces. If meat has any odour or texture I can't eat it. I have found that meatballs cooked in tomato sauce are tolerable though. Small amounts of seafood are also tolerable.
Plain salads with no onions, etc and just a touch of dressing are ok, but I have avoided romaine because of all the e-coli scares.
What he is eating is relatively well-balanced especially if he can drink the smoothies with whey protein, so you just need to find something appealing that is high in calories but isn't necessarily very nutritious. You could also try shredded cheese in the tomato soup and stir it well so that it blends in.
A couple of pieces of dark chocolate with almonds each day is my cheat.

8) mob

Edited to add - I found my appetite and tolerance is higher in the morning and early afternoon, so eat most then and just have yogurt at dinner with the family.
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Taste Change Advice

Postby orlar » Sat Jun 16, 2018 12:16 am

Sometimes, I still go through the "what's going to taste good today" routine. For me the cooking smells set the tone. On several occasions I had my wife stop cooking (even microwaving) due to the smell as I wouldn't eat it when finished. I have found out some of my favorites before chemo are barely tolerable still (chicken breast is one). My ONC says calories count, even the not so healthy ones when weight an appetite are an issue. During my worst days, ice cream, crackers, tuna, banana, salad, some cereals, pasta, nuts, raw veggies, and turkey were my goto. Luckily, my smell and taste have improved after stopping Folfox (even being on Folfiri now) and pretty much eat anything again.

Before dinner prep starts, somedays I do request something else or just fend for my self when something doesn't sound good. I still go through taste swings every once in awhile. Today veggies are great, next week no thanks. Same for meats, nuts, fruits, etc. We try to have several options on hand (including frozen) and a lot of times just the simple act of my wife mentioning 2-3 things will run across something that sounds good and is tasty.

P.S. With the mouth sores, if he's using the magic mouth wash that may affect his taste for the good or bad depending and how close to a meal he's using it.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Taste Change Advice

Postby hawkowl » Sat Jun 16, 2018 1:23 am

For me, bland foods tasted metallic and even putrid, but spicy food such as Thai and Indian tasted good. Oral marinol really helped make food more appealing
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

zephyr
Posts: 137
Joined: Thu Aug 18, 2016 7:31 am

Re: Taste Change Advice

Postby zephyr » Sat Jun 16, 2018 1:13 pm

I haven't experienced taste change but I have an 89 year old neighbor who has pretty much lost his sense of taste, possibly just an age issue but also maybe medication. We haven't solved the problem but we've figured out how to keep his weight steady: find one or two things he likes and make that the base. I had a colleague who once mentioned that if you find a sauce you like, you can eat anything ... so we figured out that, for example, he likes & can taste peanut butter so peanut sauces are a hit. The sugar thing LPL mentioned sounds like something worth trying too.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Taste Change Advice

Postby Caat55 » Sat Jun 16, 2018 2:16 pm

I have a funny feeling on my tongue. Sweets taste awful, savory foods taste good. Nausea.
The food preferences got better but never went away, even after 6 week break. My old friend chocolate doesn't cut it for me anymore, so sad.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

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LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Taste Change Advice

Postby LPL » Sat Jun 16, 2018 3:09 pm

I don’t know if this can give some advice.
But it is an article titled:
Understanding Taste and Smell Changes
Information for people affected by cancer
https://www.cancerwa.asn.au/resources/2 ... hanges.pdf
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

Re: Taste Change Advice

Postby NHMike » Sat Jun 16, 2018 8:28 pm

I was driving my wife crazy as I'd eat something for a few days and then suddenly not want to eat it. She asked me what she should make and I responded that I didn't know. Things changed from hour to hour. Some foods that I normally love made me nauseous if put in front of me. I made up for it on the off chemo week. It was the Oxaliplatin that killed taste for me and things got better as it faded.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

crikklekay
Posts: 65
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Taste Change Advice

Postby crikklekay » Sun Jun 17, 2018 3:47 pm

Guys, thank you so much for your responses!

LPL, we tried the sugar thing and it actually made a difference, kinda. He added some syrup to his grits and it helped but he had to add so much syrup to make a difference that I think the grits were more syrup than grits. Stil, I might try banana pancakes and load it up with syrup, maybe that will work! It would be nice to add something other than yogurt and smoothies for breakfast.

martd pasta used to be safe but recently it’s been on the no list, except for the small noodles in chicken noodle soup. He says they go down so fast his tastebuds don’t really detect it. I love the idea of a mint though, I’ll pick some up and give that a try!

mobrouser your story does sound really similar, he has said some foods don’t necessarily taste bad but the texture is all wrong like with scrambled eggs and frozen yogurt. Hopefully we can find a high calorie option he can nosh on to help keep his weight up.

orlar it’s good to know his taste can come back, though this is his off week so it has been surprising that his taste got so bad so quickly when it should be getting better. He is on some sort of medical special mouthwash, maybe that is making things worse like you said?

hawkowl I was planning on making some butter chicken today to see if spicy can help where sweet couldn’t quite make it. I’ll look up the oral marinol, thanks!

NHMike, I’m definitely that frustrated wife! We thought we had found things he could eat so I bought them in bulk but now they sit in the shelf unused. He got worse during his off week for some reason, but maybe as orlar suggested it’s the prescription mouthwash. Right now we’re just trying to roll with it and keep sampling different things to see what works.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

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kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Taste Change Advice

Postby kellywin » Mon Jun 18, 2018 5:02 pm

I agree that things are going to probably change from day to day and/or infusion to infusion. At times, I couldn't even stand the taste of water, I tried different bottled waters trying to find ones that tastes "less worse" than others. One thing that I could eat that helped me keep down other pills (like Xeloda, Zofran, etc.) were mini donuts, the Hostess ones, I could pop a couple and take my meds with them. Seemed to settle ok. Sometimes it was only a couple of plain saltine crackers. At this point, it's trial and error. There's no way I could have eaten fruit, smoothies, yogurt or any of the things you've listed, I would have gagged. He just has to keep trying. Calories are more important than 'healthy' foods, so if it has calories and he'll eat it, that's more important.

Good luck to your husband.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Taste Change Advice

Postby Caat55 » Mon Jun 18, 2018 5:33 pm

kellywin wrote:I agree that things are going to probably change from day to day and/or infusion to infusion. At times, I couldn't even stand the taste of water, I tried different bottled waters trying to find ones that tastes "less worse" than others. One thing that I could eat that helped me keep down other pills (like Xeloda, Zofran, etc.) were mini donuts, the Hostess ones, I could pop a couple and take my meds with them. Seemed to settle ok. Sometimes it was only a couple of plain saltine crackers. At this point, it's trial and error. There's no way I could have eaten fruit, smoothies, yogurt or any of the things you've listed, I would have gagged. He just has to keep trying. Calories are more important than 'healthy' foods, so if it has calories and he'll eat it, that's more important.

Good luck to your husband.

I enjoyed Annie Bunny Shells and cheese, first thing that tasted right. I eat because I have to, not because anything tastes good.

Tongue feels so weird, visiting oncologist tells me it is normal, will go away in time.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

martd
Posts: 56
Joined: Tue Nov 21, 2017 3:48 pm

Re: Taste Change Advice

Postby martd » Mon Jun 18, 2018 9:53 pm

The winner for this infusion was rice , chicken, chicken gravy, and a can of mixed veggies everything mixed together. The chicken didn't go down very well but the rest was surprisingly good.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7


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