What side effects did you experience on Xtandi?

Thank you for sharing your experience and being proactive about safety while on Xtandi. Many community members have found that connecting with others who understand this treatment journey can provide valuable insights about managing side effects and creating a safer home environment. The experiences shared here often help others feel less alone and more prepared to discuss concerns with their healthcare teams.

Hi, I am just on hormone injections for my stage 4 prostate cancer. I have 6 monthly injections of Decapeptyl. Since my last injection I have been really struggling with tiredness and hot sweats. Have you had radiotherapy or chemotherapy? I can't have either due to over medical conditions.

I take orgovyx and erleada. Erleada replaced xtandi, which caused horrible fatigue. Sadly, I pretty much tell the doctors what I want to take. I was on hormone therapy for 20 months and decided to take a holiday. I took the holiday from February 1st to July 15th. My testosterone and psa started to slowly climb but at an acceptable level. However, when psa doubled on July 7th bloodwork and my alkaline phosphatase rose, I went back on meds. As of August 3rd, my testosterone went from 480 to 15. Psa went from 1.52 to 0.26, which was a quick result. My alkaline phosphatase bone specific test came back with an 81.6 reading, which was high. Urologists think it will come down over the next couple of months. He said that after 3 to 6 months, I will probably be able to take another holiday. I am very proactive with my health care, or I would be gone. I have a PMSA pet scheduled for the 20th and an appointment with my radiation oncologist on September 2nd. There is some activity with the bones, but the pet scan will pinpoint it, and we will determine if we wait to zap it as long as it is not near my bowels. I was diagnosed on May 28, 2024, with prostate cancer stage 4. My 1st oncologist gave me a year to year and a half years. I went from 198lbs to 148lbs and truly looked like a cancer patient. I'm now up to 185 lbs and moving forward. Keep a positive outlook and be involved with your care. God bless you if you need more information. I will gladly share my experiences Kevin

hi

Good morning

Thaw thing I hated were the hot flashes I hope you don’t get them after you’ve been on it for a while

What medications are you on. Kevin

Hi, I have Neuroendocrine Carcinoid Tumor. I'm currently doing Lutathera Radiation and was doing Laneriotide Chemo. The shots are too expensive and my oncologist stopped them. My insurance pays 80% and the other 20% is mine to pay. Now, I'm stuck with two bills and can't afford them. If I don't get the money to pay my portion, they will stop my treatments. My Radiation oncologist said the Lutathera and Laneriotide go hand in hand. I've even set up a GoFundMe to assist with medical, but no one is really donating. I've only raised 720 which I'm grateful for the ones that did donate, but my question is, "Does anyone know of any places I can contact to continue my treatments?" Thank you in advance‼️ 🙏🏾🙏🏾🙌🏾🙌🏾 I'm in desperate need of assistance.

I’m not on any meds but I sure was on that my numbers doubled now back to Northwestern for a pet scan

Ida- have you looked into getting financial help from cancer- specific support groups? My ex had leaukemia and got a grant from one of those groups as his co-pay for meds was in the thousnds of dollars. Just acthought.

I just went off my 18 months of Xtandi and Orgovyx. Side effects for me was fatigue, hot flashes, freezing at times, waking at 3-4 am wide awake and ready to go, some short term memory loss. I kept my protein intake up, tried walking every day, stayed as active as I could pushing hard to accomplish. Made it through all of it pretty well and go in end of this month for first PSA since stopping my meds. By the way I was stage 4B advanced prostate cancer. Tumors on my spine and had radiation treatments.

Get bloodwork monthly, which should consist of psa, testosterone & cmp. My oncologist said bloodwork every 3 months, and she is no longer my oncologist. I told my urologist that I wanted bloodwork every month so as not to let anything sneak up on me. He agreed, so I get it monthly. You must be your own advocate if you plan to survive. I took a 5.5 month holiday from my medications, which were orgovyx and erleada. Bloodwork on July 7th showed my psa was 1.52 and testosterone 490. Also, an elevated alkaline phosphatase blood level. I had bloodwork on August 10th, psa 0.26 Testosterone 15. Alkaline phosphatase was elevated on the cmp test and also on a bone specific test. Urologists said the bone activity should come down in 2 to 3 months. I'm not waiting so I have a pet scan August 20th and a radiation oncologist appointment September 2nd at that point will make a determination to wait and if the bone activity decreases or we zap it with radiation. Kevin

I am on orgovyx and erleada I restarted them on July 15th after a 5.5 month holiday

My psa went from 1.52 to 0.26 and my testosterone went from 480 to 15 in 3 weeks. I was on xtandi but it caused to much fatigue. So I switched to erleada and I'm the one that requested the change Kevin