Loss of taste: Has anyone else had a... - SHARE Metastatic ...

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Loss of taste

tmills64
tmills64

Has anyone else had a loss if taste on Ibrance and Letrozole. I am on cycle 13, doing really good. I have just noticed things just don't taste good . Looking forward to hearing from you. I was diagnosed with bone mets right out of the gate Oct of 16. Horrible ! I had a spinal cord compression surgery couldn't do much....to much damage I had 10 radiation treatments for my spine, did a great job hardening the bones back up. In Nov of 16 I had a bilateral saddle pulmonary embolism I survived by the grace of God only. I was at my hospital when that hit me another gift from God. Woke up a couple days later in icu. I take a shot daily to keep my blood thin. Not bad. So grateful for so many things I know God ordained or I would not be here. Pretty sure I have the original tumor close to a year before I was diagnosed. Long story !!!! Many trips to my gp of 15 yrs. You are fine it is muscular not!!!. Prayers for you all sweet ladies!!!

18 Replies
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Yes I find my food does not taste the same. It's like I just eat because I am hungry. Do not have cravings for anything special anymore. My husband likes to eat and I feel bad for him that I don't care what we eat.

Clair19
Clair19 in reply to Jerseygirl45

Yes, nothing tastes right except chocolate which I never ate, weird. But I miss my taste buds. Sorry to hear we are in the same boat 🚣‍♀️. Good luck!

I’m just starting to lose my taste and smell. I still eat too much tho wanting to have something good just started so I will probably give up on that soon. I have gained so much weight since being diagnosed 5 years ago in July.

Clair19
Clair19 in reply to Barb5

Wow 5 years and just losing taste and smell. Since off IV Chemo I’m putting on some weight. Maybe just a few pounds. I was considered overweight at 134 and 5.2 inches. So I guess at 123 I’m just slightly over weight. 😮. I wish I had more appite. May I ask what you consider a lot of weight. I hope the Ibrance doesn’t put it on. Good luck with losing weight, just don’t lose to much.

@ tmills64, Ibrance did not work for me but I do have taste issues. With some chemos everything has the same taste and smell....and it's not good! Sort of a chemical/metallic taste. I went about four months living on Ensure and milk only. Lost 50 pounds. First time ever to be thankful for being overweight and happy to now be at a healthy weight. Other chemo side effects that have impacted my interest in eating have been thrush, mouth sores, and excessive dry mouth. I still drink one ensure a day because of the protein and vitamins, plus, I know it will take away my hunger pains.

Clair19
Clair19 in reply to PatSailsbery

I lost over 20, weight 123. However I’m short at 5.2 so I like this weight. I don’t get hungry but know I must eat. Good luck to you...

PatSailsbery
PatSailsbery in reply to Clair19

Thank you Clair19. And good luck to you as well.

Clair19
Clair19 in reply to PatSailsbery

Thanks Pat for saying that, good luck to you.

I too have lost my taste. I look at it as a good thing because it will take some pounds off. I eat during the day at work, and a piece of fruit at dinner with drugs. Not really cooking anymore either. Think my husband is losing weight too!

Clair19
Clair19 in reply to lashinator

I do the opposite, don’t eat in am eat at night so I can take Ibrance. I lost 20+ pounds 123. I’m short at 5.2 so I wish I could get back into the gym. My husband goes 5 days like I was going. I don’t want to be exposed to germs. When my wbc gets over 5 I will return to try and tighten up, that will take 5 years. Man what happens when you get older it use to go right back in shape... Oh well I’m just happy I’m alive and doing better. Good luck to all who are going through this really rough patch.

How many calories do you think you need to have in you when you take ibrance? My pharmacist thinks a piece of fruit isn't enough, but my onc thinks it is.

Clair19
Clair19 in reply to lashinator

Great question! I would not think a piece of fruit would be enough either. My oncologist told me on a full meal, which for me is a large sandwich and ice cream. Don’t always eat ice cream. I don’t cook my husband does some. I bought one of those inside grills, which works great for seafood and vegetables. You have to do what ever works best for you. I’m looking forward to my week off of the Ibrance! Then I can eat a little lighter.

I'm glad to hear this is apparently normal. I've been on Ibrance and letrozole for 9 months (it's working really well for me - yea!) but have started getting weird taste problems which started about 6-8 weeks ago. Sometimes I can't taste anything - a tomato tastes like an apple which tastes like chicken which tastes like bread, etc. Sometimes there's an unpleasant taste on top of that, and sometimes it's not too bad. Savory food is better, but I can't taste sweet. Not only sweet like candy, but the natural sweetness in food: tomato, fruit, that sort of thing. I dream about eating an apple that actually tastes like a nice sweet apple. Oddly, orange juice usually tastes pretty normal; not oranges, just orange juice. I ate a Payday the other day at the movies; I could smell the carmel and peanuts, but absolutely no flavor...just flat. Other than texture, I couldn't taste the difference between the peanuts and the carmel.

This happened to me. I mixed apple cider vinegar, lemon and Honey. This helped bring back my tastebuds within hours.

Southside25
Southside25 in reply to mjmom

I'd certainly try that. What's the "recipe"? How much of each ingridient do you use?

mjmom
mjmom in reply to Southside25

youtu.be/GLrQTKvyWHw

Southside25
Southside25 in reply to mjmom

Thank you. One other question. Does the honey serve any purpose other than making the vinegar more palatable? I have no problem drinking vinegar/water straight. Of course, if I ever get my taste buds functional again, that may change!

seiler
seiler in reply to mjmom

Oh, my, my, my. Thanks for the tip. I will try it in the morning (it's almost 1 am now}

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