Awful, awful, awful taste with Ibrance

[seiler]

Can anyone explain why everything (except chocolate ice cream and hard mint candy, plus about 5 other things) tastes horrible when I take Ibrance, all 7+21 days, and leaves an equally bad aftertaste? Solution? I've taken Ibrance for 4 years and it has made 11 tumors disappear, so I'm not complaining. But I cry nearly every day from the taste. Worst are fruits, vegetables, bread, peanuts, meats, potatoes and nearly everything else.

[MacroMom]

I'm not on Ibrance but was having similar taste changes when I started IV Abraxane. My ND oncologist suggested a zinc supplement. I take 30mg twice a day and I think it's helped with the taste. I also swish several times a day with a salt/baking soda solution; I just make up a solution in the morning and swish with it after meals, when I think of it.... that may be helping too. Eating is one of my favorite things to do, no fun with malfunctioning taste buds! But I'm happy for you that Ibrance is working so well. 4 years!

Patty

[MyMiracle13]

I’m so sorry you have to endure this. You mentioned that you have been in Ibrance for 4 years. That is really great but have been having problems with your taste for 4 years now?

[seiler in reply to MyMiracle13]

Yes, 4 years!!! You can't imagine how frustrated I get. I throw so much food away. I also had acute kidney failure 3 years ago due to all the medication I took for BC over the years. I was incredibly fortunate and my kidney got back to normal after dialysis for 3 months. Now my Potassium level is too high which GREATLY limits what I can eat. I just can't find foods that are low potassium and don't taste like bitter, spoiled garbage. I can't take a chance of damaging my kidneys further.

[MyMiracle13 in reply to seiler]

I don’t know what to suggest but I really feel for you. Has it affected your weight? When I lost weight initially due to the MBC diagnosis, I was prescribed Prosure to stabilize my weight. It’s like a powdered milk drink and comes in different flavors including chocolate. Since chocolate ice cream is something you can eat, maybe the taste of Prosure chocolate flavor will agree with you. It’s made by Abbott. You can probably use this too to supplement your very limited diet.

[seiler in reply to MyMiracle13]

I drink a drink similar to that and it comes in chocolate. It's great! I lost 60 pounds because of the hospitalization and kidney problems. That was too much, but I had no problem gaining 20 back, what with eating lots of chocolate ice cream every evening for around 3 years now! I like the wayI look, now.

[Timtam56]

Hmmmmmm. I've been on ibrance for 2 years now. No bad taste for me. Perhaps a little change in his much I taste things these days. What else are you taking?

[mariootsi]

I find that the new tablets are much worse than the capsules were! They smell and taste so horrible.

Are they still making capsules or just these stupid tablets? Yuck

[BlueEyedC in reply to mariootsi]

Oh, man! I hate them too! but for different reasons. It's so hard to get them out of all the packaging! What were they thinking - these are for 20-year-old weightlifters??? Not to mention the money they must be spending on the packaging - better to devote it to more research! I've been meaning to write to the company who makes them (I have to look up who it is, don't remember) to give them my unsolicited feedback.

[mariootsi in reply to BlueEyedC]

I know! They are made by Pfizer.

[SeattleMom in reply to BlueEyedC]

Totally agree! The new packaging is ridiculous! Although I do like that the days are labeled. I cut around the edges of the seven pills so that pressing them out is a bit easier. What next? 😂😂💗💗

[seiler in reply to BlueEyedC]

I don't hate them because they have definitely saved my life. I know I'd be dead without them. I think they are beginning not to be as effective. The doctor has hinted that I may change to a different medication sometime. I have not received pills in the new packaging. Mine still come in the little plastic bottle. Do you realize 21 pills cost over $11,000.00? My bill is $28.00 because of insurance. I wonder if the cost is the same elsewhere.

[Hidden in reply to seiler]

The cost in Canada is about $8,000.00 for the ibrance .

[SMPG]

May I ask what strength Ibrance you are taking? I am taking the lowest, 75 mg and I have no such symptoms.

[seiler in reply to SMPG]

I took 125 mg. for quite a while but the Dr. lowered that to 75. She said researchers have found that 75 is as effective as 125. I have had no other complications.

[SMPG in reply to seiler]

I wonder then why doctors push the 125 mg first. Also, I am thinking that maybe after years of Ibrance, something in your system has accumulated and that's why you have this bad side effect. Or did you have this bad taste from the beginning? I only started Ibrance in March of this year.

[seiler in reply to SMPG]

The bad taste started on day 1. If the Ibrance stops working, the Oncologist said we'll just try something else. Hope it tastes LOTS better!

[SeattleMom]

Have you tried taking the pill with milk? Swallow quickly and don’t allow it to stay on tongue for more than a second. Hope that resolves this. Has this been going on for four years? Have you considered hypnosis? I sure would! God bless you!

💗💗💗💗💗🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

[seiler]

Everything tastes bad. It makes no difference if the pill touches the taste buds or not. Even water tastes bad. Yes, 4 years. I called the main office of the company that makes Ibrance and the woman said several other people had reported a bad taste, too, but the company doesn't know what the cause is. She said it's an allergy to something in the pill.

[Bishtown]

I took Ibrance for three years until it stopped working. Never had a problem with food not tasting good. Now on verzenio and am having same problem. All food is disgusting and terrible taste in my mouth.