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 … most Xtandi users have mild to moderate SEs with Xtandi. Many say that regular moderate exercise helps moderate those. Just from what I see here , most Xtandi users do not experience the “ severe “ Xtandi SEs. Unfortunately , I’m one of the Xtandi users that experience the extremely harsh , intensely serious Xtandi SEs. I’m nearly crippled by it and it’s put me in a wheelchair ( along with lots of aPCa bone damage.
Having said this , I’m considered a “ super responder “ to Xtandi and my severe SEs are no surprise under the circumstances. My last oncologist ( retired in December past ) said I was her luckiest patient that she had in 40 years of practice. My current oncologist says my continuing to persist is literally miraculous. Never seen a patient like me before. All attributed to Lupron Xtandi and my body chemistry I guess. My initial DX was inpatient hospice……. However I’ve persisted , 6 years this month , in pallitive care…. past my hospice DX. All of it I believe can be attributed to Lupron Xtandi. Just IMHO and strictly based on my probable unusual case. I willingly trade the SEs for additional life, staying alive my goal at about any cost.
So basically , ( imho ) the SEs you might experience are 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. Fight to survive is my personal perspective.
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 “ and get on with things. After a while waking up every day using a wheelchair , you don’t think about it much ….you just get going. There are “ work-a-rounds “ for about every inconvenient aspect / difficulty of daily life. Most people in wheelchairs can still live a great QOL … meds that manage our SEs do the rest. For me they work very well. Possibly the cleansing effects of ischemic small vessel, white matter damage ( xtandi memory impact ) helps a LOT too rotflol. 😂😂😂😂😂😂 this all just my personal thoughts/ experience. Boy howdy….. a truckload of other perspectives do exist as well.
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