Taste Issues and finger neuropathy on Xtandi( enzalutamide) ?

[bandgeek]

In order to participate in a clinical trial (FOR46 at UCSF) I had to switch from Nubeqa (darolutamide) to enzalutamide. Previously on abiraterone. Did really well on both medications.

Now 4 months on enzalutamide and my 5th research infusion, I'm experiencing some side effects.

Trying to determine if they are a result of the medication or the infusion.

Most disconcerting is problems with my taste....dysgeusia. and finger

neuropathy. Just wondering who else may have suffered these side effects and and what action they took.

I read a medication holiday and taking the med at night instead of morning can help.

1st hand experience?

Thanks,

Bradley

[tango65]

My understanding is that FOR46 causes neuropathy,

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It is a problem with this trial and I won't be surprised if they didn't tell you anything about this side effect when you applied to the trial. I will expect they will try to minimize your symptoms.

I was in a trial which caused me a peripheral neuropathy and they refused to accept the med was causing it despite of all the evidence, then they try to minimize my symptoms etc etc. I eventually dropped from the trial.

The symptoms of neuropathy can be controlled with gabapentin, but it could be a difficult condition to bear.

I forgot to mention that Xtandi can also cause neuropathy.

accessdata.fda.gov/drugsatf...

[Kaliber]

yes, I’ve been on enzalutamide - Lupron for over 5 years now … it has destroyed, or nearly so, my taste buds . I also have substantial neuropathy up to my knees … and some ischemic, small vessel, white matter brain damage from Xtandi. Not a lot , but some.

Considering that enzalutamide saved me “ literally “ from the doors to hospice , I’m not bothered by these changes much. A trade off well worth it to me. It’s a very personal thing for each of us, but IMHO, I’d never take a “ vacation “ from ADT ….which risks having the cancer wake back up and start eating again. Only the toughest, most resistant, bugs survive adt, waking them back up in me is not something I want to happen. Everyone would probably have various views on this.

❤️❤️❤️

[j-o-h-n in reply to Kaliber]

Nice to see you again Dr. Kal,

As the east coast rat said to the west coast rat:

This one is right up your alley!!!

So this elderly woman is sitting on a crowed city bus while her dog is sitting in her lap when they come to a scheduled stop. A mid 50's guy boards the bus and sits in a vacant seat next to the woman. After a few minutes the guy pulls out a cigar and starts smoking. The woman says to him "Sir, smoking is not permitted on a city bus" The guy looks at her and says "mind your own business lady and by the way dogs are not permitted on a city bus". The woman gets so irate that she grabs the guy's cigar and throws it out the window. With that the guy grabs the woman's dog and throws it out the window. They start yelling at each other as the other riders are now paying attention to the ruckus. All of a sudden a passenger yells out, "oh my god the dog is running after the bus". With that everyone's attention is directed toward the dog running after the bus as the woman yells for the bus driver "to stop the bus". With that the bus driver starts to slow down the bus as the dog get nearer and nearer to the bus. The dog, still running his heart out gets about a block away from the bus when someone on the bus yells out that the dog has something in it's mouth. With that the woman says "what's in my dog's mouth?" OKAY, KAL THE ANSWER IS???

Good Luck, Good Health and Good Humor.

j-o-h-n

[Kaliber in reply to j-o-h-n]

Easy:

The bus driver stops the bus and opens the door as the dog runs up to the bus with a cigar in its mouth.

The woman, relieved to see her dog safe, grabs the cigar and scolds the guy for putting her dog in danger.

The guy, feeling guilty, apologizes and promises to never smoke on the bus again.

The other passengers applaud the woman for standing up for her dog and the bus continues on its route with a much more peaceful atmosphere.

❤️❤️❤️

[j-o-h-n in reply to Kaliber]

Nope.........It's the BRICK....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Kaliber in reply to j-o-h-n]

Yayahahahaya.

The meaning of "it's the brick" can change depending on the tone in which it is used. For example, if you said it in a positive or admiring tone, it could mean that something is solid, reliable, or impressive. But if you said it in a negative or dismissive tone, it could mean that something is unattractive, unappealing, or heavy. The context and the speaker's tone play a crucial role in determining the intended meaning of the phrase.

In this instance the meaning is ambiguous due to lack of context.

Just say’in

❤️❤️❤️

[j-o-h-n]

You disappointed me, cause I guess you forgot this post and would have picked up on it with THE BRICK (NO CIGAR). Shucks!!!

So this home owner goes to a brickyard and orders 1,000 bricks and says to the delivery man that he wants exactly 1,000 bricks....No less, no more. If there aren't exactly 1,000 bricks I will cancel the order.... So the driver double counts the bricks and loads them into the back of his truck. While driving to the the home owner's house the driver runs over a speed bump and sure enough a brick falls off the back of the truck. Driver delivers the bricks and sure enough there's only 999 bricks and the home owner cancels the order. Get it?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/14/2024 7:55 PM EST

Good Luck, Good Health and Good Humor.

j-o-h-n

[Kaliber in reply to j-o-h-n]

Oh dear …. Yes I did forget yayayay yay and with my short term memory loss I’m lucky to remember that I forgot what I forgot to remember ….sometimes, I think….. right ??? Yayaha yayay.

Just say’in

😂😂😂😂

[j-o-h-n in reply to Kaliber]

Went over like a lead balloon.......

Good Luck, Good Health and Good Humor.

j-o-h-n

[Kaliber in reply to j-o-h-n]

😥

Still love ya buddy

❤️❤️❤️

[j-o-h-n in reply to Kaliber]

Ditto.......

Good Luck, Good Health and Good Humor.

j-o-h-n