had my first appt

When I had chemo 2 years ago, I had no problems with taste. But since I am going through chemo again now, I get bad changes in taste about 3 days after chemo. Most things taste like wet cardboard. It lasts for about 10 days, then gets better. Even my favorite food in the world, salmon sashimi (when I die, I want to come back as a grizzly bear so I can have all the raw salmon I can eat), tasted awful.
But I discovered that fried calamari and frozen battered fish sticks tasted OK. Also, dairy, like yogurt, cheese, and ice cream. And one night I, too, had a craving for Taco Bell! And it wasn’t bad!🌮

well i just spent 2 days in the hospital because of the nausea/vomiting/constipation etc... i'm back home but lord have mercy, my gut is in misery still....nothing seems to be working to get rid of tastes...or the rest of it...

Oh I’m so sorry! That’s horrible! I hope they can find some way to get that under control. There are many kinds of medications to try to prevent nausea and vomiting. Sometimes it’s a matter of trial and error to find the right regimen for each individual patient. There is good reason to hope.🤞

ok i just need to vent this morning.... i'm frustrated to NO end atm..
nothing tastes "good" if you will, i'm FORCING myself to eat a few bites every hour or so just to keep the guts moving, and not to lose weight but i have NO motivation to move off the couch... my friend D who is "supposed" to be gaining strength for his surgery is weak as water, and almost seems too close to the point of giving up the fight to suit me and i can't keep pulling him along...and it seems like ever since i got out of the hospital my hubby has been constipated and in pain and generally miserable, its like he's experiencing what i was going through that ended me up in the hospital...he's done nothing but whine and complain abut how miserable he is and how much pain he's in and so forth and so on since Thurs and is still going full strength at it this morning...the whining i mean...and i'm sorry but i'm just not able to cook meals atm..or eat them for that matter...and i'm certainly not able to be the rock these men have depended on for months cause i can't get motivated to do jack...and THAT is pissing me off to no end too...i'm TIRED of sitting on the couch or laying in the bed and doing nothing....this is not me but i don't have the energy to do anything
How in the heck did yall manage in cases like this???

Give your husband dulcalex for constipation and order take out or have a friend deliver the take out food. Tell your husband and friend the food has arrived and it is their choice if they want to eat it. Then sit on the couch.
I make a list of things I need to do and tackle what I can. Sometimes I don't leave the couch.
I do what I can and then rest. Some days are better than others.
Take care of you then help others.

Imo, you shouldn’t have to be concerned with anything but feeling better when possible…..no trouble, no tasks, no listening to others pain, nothing but resting and focusing on feeling as good as you can at the moment. I don’t know why you aren’t getting that. Sorry…maybe, they don’t realize how they sound. I have a family member who constantly complains of pain and being sick. She’s done it for many years no matter the circumstances. So frustrating. It’s a difficult situation. Hope it improves.

what is annoying me is i CANT do what i normally would be doing...THAT is making me frustrated...you see i'm the "fixer" and all of a sudden, i'm facing stuff i can't fix and its aggravating me to no end...
on the plus side, hubby is doing better...hopefully tomorrow will continue to improve...i'm just not a person used to "resting and doing nothing"

@mommacandy You came to right place to vent as we all understand how it feels to be diagnosed with cancer, the surgery, the treatments. While I am certainly grateful for the wonderful care I received from my cancer care team I did not want to hear about anyone else's woes or their whining while I was being treated or recovering. It's very possible that your husband doesn't view his whining as complaints. Maybe he believes he's just sharing? You know better than me but when you are the rock and the fixer for everyone else sometimes they just can't get it that you are the one who needs support. I call this "pulling out the cancer card". As in "I can't do that because I'm nauseated from my chemotherapy" or "I don't have the energy to get up and do that because, you know, I have cancer".

I had a conversation with a friend today who was diagnosed with bile duct cancer (cholangiocarcinoma) the same year I was was diagnosed with endometrial cancer. He said he would have been dead had he not had the expert care he received and ultimately a liver transplant. He said he rarely talks about any of this because other than his wife who would he talk to? The listener can express their compassion and empathy but the experience of cancer diagnosis, surgeries, treatments and in his case a transplant is outside the experience of many others. So, we have to ask for what we need and sometimes we have to do that more than once. Or say "no" when we can't do something.

Maybe I'm just blathering on here but I hope that your husband will get it that you are not used to being a person who "rests and does nothing" however for now that is what you need to do.

@mommacandy

I am sorry to hear that you are facing such a huge struggle and that your family has faced so much suffering and loss over the generations. I so appreciate all of your sharing!

I haven't yet seen anyone give tips on living with metallic taste or mouth sores, and I haven't had this experience to date, so did some online research (so much easier to do than when I'm "in it"). What I'm reading is that chemotherapy agents such as carboplatin and paclitaxel target cancer cells, which are ones that divide rapidly. Hair follicles and cells lining the digestive tract (especially in the mouth) also fit that category, and that mouth sores and metallic/bitter/cardboard tastes are often a result.

I'm including some research articles below that outline mouthwash treatments (in one case for those undergoing radiation in the nose/throat area, that includes lidocaine, dexamethasone and vitamin B-12) that reduce oral pain and inflammation, and also promote regeneration of the cells of the tongue and lining the mouth. This concept should also apply to the metallic taste, which I'm reading is a natural consequence of the killing off and re-growth of those cells. Using a mouthwash instead of taking oral vitamin B supplements is worth considering, as you do not want to support re-growth of the cancer cells, only the ones impacted by the chemo that you need in order to tolerate and enjoy eating.
https://pubmed.ncbi.nlm.nih.gov/34154361/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10199211/
Here are also some potentially useful resources regarding mouth sores:
https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/oral-care.html
I like the suggestions of home remedies in the above link.
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486
For metallic taste (some of these are old, but had something of value, so I included them):
https://www.fredhutch.org/en/news/center-news/2014/05/Combating-chemo-mouth-experts-offer-tips.html
https://www.medicalnewstoday.com/articles/how-to-treat-metallic-taste-in-mouth-from-chemo#management
https://www.cancer.org/cancer/managing-cancer/side-effects/eating-problems/taste-smell-changes.html#:~:text=Rinse%20your%20mouth%20with%20a,to%20help%20ease%20bad%20tastes.
I

Oops! I sent accidentally without closing...I am sending care, wishing you well and hoping you manage to get through this intensely tough period to a point where these symptoms no longer plague you, @mommacandy