I've just been prescribed Xtandi. I was wondering if anyone else is on it and what have been your results so far. And what did you have side effect wise, if any.
Hi , I’m sorry no one has popped into answer your post with their personal experience. I didn’t want your post to sit unanswered while the site is in read only mode. You might want to try and put Xtandi into the search bar on the site, I did and it came up with a number of posts.
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My dad has just started Xtandi 4 days ago, so interested to see how you are getting on with it?
We are hoping as he had no side effects from the hormone implant, the side effects will be low with Xtandi- but as complete'newbies' as such with all of this, we havent a clue!
Hi Dave 1234 . Been on Xtandi for 3 weeks now . Haven't experienced any side effects so far. Meet the oncologist next week for a review and bloods. Was only on Decapeptyl injections (just had my second 1).
PSA on diagnosis 46.7
Diagnosed T4N1M1
PSA dropped to 0.4 after 3 months which was a pleasant Christmas present. Be interesting to see what it's dropped to next week after 1 month of combined treatment.
I’ve been on Xtandi for over a year now, at first I was given four tablets to take, which sent my head spinning, after a discussion with my oncologist we dropped to two then three then back to four, which I can now handle, the tablets do take it out of you more tired and fatigued bones ache a touch more, but it’s worth it if it keeps me here with my wife.
Hi I am going through the same treatment plan as you are, from having a PSA 168 on diagnosis in April 2021 to a PSA of 0.01 now and long may it stay that way, Like Joe I would agree it takes it out of you
The Pain I was having in my spine and hips has returned so I am a pain killer junkie, the sweats are getting more regular and I am loosing my masculinity and my muscle is turning to fat, and my body hair is thinning.
But as Joe says it is keeping me with my wife longer so I can't complain
I've been on it three months, so early days. Another blood test tomorrow to see whether or not my now low PSA has been maintained.
A most recent side effect has been a rash on both arms, some cracked feet and returning Eczema. I can only assume this is down to a reduction in hormones.
Hot flushes and fatigue are generally manageable there have been some rather comical moments of confusion. Like putting a porridge in the microwave this morning with no milk! Burnt porridge oats is not an altogether unpleasant smell however!
Hi, I;m new to this blog. I've been on Xtandi for about 3 years. Discovered my prostate cancer 26 years ago and had surgery. For about 21 yrs my psa was basically 0. It then stated to creep up and when it hit 3.0 + I started hormone therapy. I get a shot of Eligard every 3 months and have no discomfort from the shot. Originally I took 4 60mg tabs of Erleada once a day. Developed a rash and my oncologist switched me to Xtandi--4 60mg per day. I've had few side effects. Maybe some fatigue. I would be on the pill for 6 mos the the psa would go down. I then would stop the pill and about 6 mos later my psa would go up, Back on the pill and psa would go down, until Nov 2020. Had a PSMA pet scan and found 5 llymph nodes in lower abdomen had cancer. Dr. said the cancer cells found out a way to get around Xtandi. Choices were: Do nothing (I;m 83), chemo therpy or try and new pill that works differently. No radiation as nodes were to far apart.. I am trying the medication called Zytiga. Same type of treatment different method. If it works --great. If it doesn't then chemotherapy ..
Hi dave1234 I was diagnosed in January 21 put on Xtandi in early March, all the usual side effects, worst one is loss of manhood as there is around a 40 % reduction in size. But hey I am alive, and wife is not bothered, to old and married to long to go changing now. PSA was 25.1 now 0.0089.
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Hi Roy, My psa was usually less than.01 until about 5 yrs ago I’m not sure what ultrasensitive is so I assume mine was not. My Gleason score back in 1996 was seven. I haven’t started the new drug but should we go in the next couple of weeks. It’s similar to Xtandi but uses a different approach. I don’t know what the different approach is but that’s what the doctors tell me. I feel positive that it will work for a while but my doctor says eventually I will need to consider chemo. It depends on how long the drug works and what kind of shape I’m in at the time. Except for cancer I am in very good health. I need to lose about 50 pounds but other wise in good health. Good luck to you. Taylor (Papaw)
