Hi all, My Oncologist took me off of Abiraterone due to my liver enzymes being elevated. Took me off for 2 weeks to see if that helped. It did, but elevated when started again. Started me on Xtandi. Not a fan of Xtandi ! Besides a little more back and muscle pain, I am now experiencing flu like symptoms mainly a head cold all the time. Mostly nasal and throat mucus daily.
Besides that the worst part is I now have lost all sense of taste ! With Abiraterone everything was salty. Now I have no taste at all. No matter what I eat it’s very bland and texture like rubber! Just wondering if anyone else experienced this and any solutions other than changing to another medication.
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Hawaiirainbows
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what I see on the group you might experience is likely to be mild to moderate and can be managed with exercise. If you aren't doing doublet or triplet therapy, staying with a working treatment until it quits saves the next drug to carry you along farther. A person can learn to adapt and persist to about anything , humans are amazing this way …..but death is final. Only you can decide if the prospects of longer life are worth the SEs. Writing off xtandi might be losing some prospects of potential longevity.
To be fair , tho, there are the people that say I’ll never live in misery or severe SEs just to stay alive with a miserable SOC. I get and respect their perspectives as well.
Honestly we all can learn to adapt and have “ work-a-rounds “ for SEs and get on with things. After a while waking up every day using a wheelchair SE , you don’t think about it much ….you just get going. There are “ work-a-rounds “ for about every inconvenient aspect / difficulty of daily croaker life. Most people in wheelchairs can still live a great QOL … meds that manage our SEs can do the rest.
🤔 Mmm. I've read your report on your condition. I've read your post. When I was diagnosed with this beast, all I wanted to do was live and give it as good as it gave me. I was as sick as a dog with SE, I was so tired I could barely function, sometimes I would capitulate and have to sleep, not knowing if I would wake up. I would tremble, stammer, slur, barely be able to put a sentence together, the list is endless.
My body, has been affected, as it would be. But it still functions, I hesitate to say it, but possibly better than some people without the Beast.
I, like many guys looked this Beast in the eye and told it to Foxtrot Oscar.
Have you thought of halving you medication, I did and so have many others. Not to the detriment of the efficiency of the medication, it still works and you might be able to cut down your SE.
I suppose the stark choice is, we either live with the inconvenience of some side effects or we die, just as we need rain to survive, but it means sometimes we get wet.
I’ve been on Xtandi for 10 years. With the caplets it’s 4 pills. Dropped one seem ok. There is fatigue, and other side effects. I take various antidepressants, lipator ,
10 years on one treatment, that's an amazing result. Also it proves yet again that you can tweak your medication and still come out okay.Well done to you, thanks for responding 👍
Kaliber, I'm just replying to you and your message has disappeared 🙄.
You are just like that wonderful old car the Kaliber, lots and lots of layers of paint, keep on polishing it and it still stays there, as bright and shiney, as good as new.
Nothing wrong with your brain cells either, must have been a life time guaranteed battery. Just keep it charged.
Keep rolling on the floor, laughing out loud, but how are you going to get up 🤸♀️🤸♂️ , " O' wise leafy one " will now retire to the cold section of the Supermarket, remaining fresh and ready for action;
lol thank you buddy. I saw you read it and I trimmed off the wilted parts of my message. Prolly shouldn’t leave that stuff up for the newbies to read. Just say’in.
Cool is as cool does , in your leafy abode . You da man brother. I try to make the energizer bunny look like a wanker , lol. Not always easy but I’m “ charging a-head “ 😂😂😂😂 oh dear …. ( sic )
I have been diagnosed with a narrowing of my artery going to a valve. They may put a valve up my leg which pushes the other aside and clicks in. I’m 71 so could be old age, calcium build up or lupron and Xtandi’s effects. I’m gonna push to get this done, but it’s only slight necessity right now. I take atenolol, desimpramine, Wellbutrin, and Prozac. The last three antidepressants. Desimpramine, anecdotally , has a positive effect on prostate cancer. Google it, if you want. I’ve taken zyflamend in the past, hard to know if these things along with Lipitor helped to slow things down. I took quite a bit of aspirin to control inflammation, although it helped it’s anecdotal so not giving medical advice, it was kinda risky what I did but in the early days I was a kitchen sink which I don’t recommend. You could hurt yourself,
Yea …. Us guys from the wireless days , especially from MARS ( not that Johnny come lately NATO stuff ) , yes I still have my official government MARS certification….. and know what this Quebec Sierra Oscar is all about. Rotflol. Add this to your lexicon.
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