Generic Name: Xtandi for Prostate Cancer (enzalutamide)
"Apparently, have stage 4 prostate cancer. Had radiation, no surgery; went on Lupron for 2 years. Prescribed term ended and then PSA climbed in 3 months from 0.23 to 4-ish. Back on the Lupron. PSA dropped at first, then climbed to 6.4. Started Xtandi (simultaneously on Lupron) almost 2 years ago. PSA rapidly dropped to below 0.02. Been there ever since. No change in side effects from being on Lupron alone: Hot flashes (fewer and less severe over time) and weakness when they occur. Last 30' to a couple of minutes. For me it seems like a miracle drug."
"4 months at 160 mg each day and 1 month at 120 mg a day. PSA was 48 when starting this medicine. PSA dropped to 0.20! Medication did its job. BUT, side effects were extremely painful, tiring, hot flashes, losing my balance, and so much more. I'm 83 years old and had stage 4 prostate cancer. If I get 4 more years or so, it's worth it. Have been off medicine for about 3 months and still having side effects! Rating would be 8."
"The cost of Xtandi is ridiculous, in my opinion, but the options are 0 at this time. My PSA went up to around 50, and I was on Lupron. I was then put on Xtandi, and for almost 4 years, my PSA has been below 1. Side effects, I would say, seem to be tiredness. I also seem to be picking up weight in my legs and around my stomach, but have not gained any pounds since being on the Xtandi. I would have to qualify this as a success with side effect limitations."
"My 69-year-old dad is taking Xtandi for 3 months now. The first month was perfect, PSA went down from 275 to 180, and he was feeling amazing and healthy. At the end of the second month, he started to get pain in his lower back, very burny skin, and he could not even sit. After 2 weeks, he suddenly could not walk anymore on one leg. So he stopped Xtandi for 14 days. In this time, he was able to walk again. Very weak, but slowly walking. But his PSA is now back to 276. He has started Xtandi again. He has stage 4 prostate cancer. Wish him luck. I believe this drug may work very well but can have terrible side effects!"
"My husband is 83 years old. He played golf 3 days a week before taking Xtandi. Last time he tried to play, he fell. I told the doctor he needed off of the medication. I had to find another urologist to tell me it was OK to stop it. My husband is now almost bedfast. Walks with a walker, has home health care. Mentally disabled. Yes, he is 83, but he was playing golf 3 days a week before taking Xtandi. Please pray. I am afraid the damage cannot be reversed."
"Been taking Xtandi now for over a year. I'm 66 years old and have Metastatic Castration-Resistant Prostate Cancer (MCRPC). Very happy with the drug. I do have some side affects but nothing compared to the pain I had before taking Xtandi. I am thankful for the medication I get to live pretty much pain free. I am very concerned what will happen to my quality of life when I can no longer take the medication. Thank You"
"I'm a 63 yr old males who was diagnosed with Stage 4 Prostate cancer and started on Casodex/Lupron. Was good but Casodex stopped working after 6 months. I was switched to 160mg of Xtandi. Dropped my PSA pretty quick, side effects were pretty rough to start with (memory, brain fog, balance issues, hot flashes), after 6 months, doctor lowered dose to 80 MG and side effects lessened. Brain fog reduced greatly, hot flashes, balance issues come and go. PSA has been non-detect for over 2 years now. I also take multiple natural supplements which I have researched. These supplements reportedly block the feeding pathways of my cancer. They can also help extend the effectiveness of the Xtandi. Do your research because the doctors don't look at anything natural. Also change diet and limited carbs to 75gm / Sugar 40gm or less. Lots of vegetables, a whole lot less meat. I have to say, I'll put up with the side effects as this drug really works."
"My dad has prostrate cancer and was doing good with zytiga at that time his PSA was 500, it went up from 250, his dr. Change his meds to Xtandi, which made it worse for him. The uncaring dr, didn't even check on him had several transfusion already and yet he still advised him to take the medicine even if we see that his health is decline faster than usual ever since he started this Xtandi. The side effect was so much worse. I would not recommend this medication and feels like it’s a hoax. My dads psa even got worse."
"My PSA was over 500. Dr put me on Xtandi. Within a few months it had dropped to "undetectable" with almost no side effects. It has been staying this way for over two years. The price of the medicine started out at $7500 a month which I could not afford but I was getting it at no charge to me. All of a sudden the price has gone to over $13,000 and I am told that I am no longer eligible to receive it. I don't understand how ninety little pills could cost so much."
"I've been on Xtandi since May of 2019 along with a shot of Leuprolide every 3 months. I have been taking 4 - 40 mg capsules each day. My PSA almost immediately dropped to below measurable and has remained there. Side effects have been brief hot flashes, aggravated when I get in a warm room, some loss of muscle mass, and loss of taste so that favorite foods are no longer enjoyable. I do taste salt and sweet. I am 75, maintain a relatively active lifestyle, and consider my side effects minimal. I had high risk prostate cancer and underwent a robotic prostatectomy along with adjuvant radiation. I started the Xtandi following the surgery."
"My 88 yo dad was put on Xtandi combined w/hormone shots for prostate cancer (returned after 10 yr remission). I questioned this since his PSA dropped a LOT after just one injection. Dr. felt it was needed to ensure the cancer didn't metastasize. He has been on Xtandi for about 5 months and I've seen an alarming decline in his overall health. He's gotten so weak that he fell yesterday and couldn't even get himself up. He's having bad back pain, lethargy, sleeping long hrs., general malaise/unconcern, loss of appetite, moving at a very slow pace, and now falling. We're taking him OFF Xtandi. While it's an antiandrogen, it seems to work like chemotherapy! "Might" be effective (can't really say), but don't think it's worth the chance he's taking. I just pray all the harm (even more than listed here) this drug has done in this short time will reverse. I'm scared given another review here, though, that the damage will be permanent. Time will tell...only God can heal."
"I just started taking Xtandi 11 days ago, and I feel MUCH BETTER AND STRONGER THAN BEFORE. It surprised me that my health renewal came so suddenly and quickly, and I appreciate it. My PSA had climbed to 1482 before taking Xtandi (along with an Eligard injection - 6 month lasting), and, believe it or not, I felt like my PSA numbers were rapidly dwindling within hours (minutes) of taking it. My leg strength is stronger than before, and I don't feel as feeble as I did before. I take 4 tablets of 40mg Xtandi once a day, usually around 3P.M. I'm supposed to take these 4 tablets all at once too! Easy to swallow actually so it's no problem for me. I just read online that I'm not supposed to eat grapefruit when taking Xtandi so this is the first major drawback with Xtandi for me. Also, I do take, as required, at least 2000 iu of vitamin D3 daily as this somehow is important to do while taking Xtandi. No detrimental side effects observed so far, only amazing healthy benefits."
"My elderly Dad was on this AWFUL drug for a month. Side effects were very severe & debilitating. Has gone from walking around house on his own to now using a walker. Weight loss was very sudden & huge! He’s mentally very sharp & is a doctor himself. Would NOT recommend this drug to ANYONE!!"
"My husband died Nov 22 2017 from small bowl cancer ! He was prescribed Xtandi in June of 2016 and took it for for six months! This is a very rare cancer only 2% of all cancer reported . He had no sign of this cancer in June by scans but was full blown in Now 2016 ! I am wondering if any of you are having this same problem ?"
"Mixed feelings, but it is working for me. It appears to be knocking down some of the cancer, but also need SBRT, Lupron and Zometa to keep PSA below 1.0. 73 years old and continue working part time because I enjoy what I do and it provides my wife and I the funds to enjoy traveling and much needed insurance benefits. That brings me to a major concern. The cost is very expensive at over $14,000 per month if I didn’t have the coverage. No generic available, but there should be since it’s my understanding that this drug was developed using government funding. That aside, I’m thankful that it’s available and works for some. I’m very sorry that it hasn’t worked for everyone. My side effects include painful joints, painful muscles, itching skin, hot flashes and general fatigue. I’m not going to blame that all on this drug that has been a Godsend for me…the Lupron can have similar SEs but they seem to have worsened over time."
"78 years old with stage 4 prostate cancer. I'm on an Eligard injection to my belly fat every six months. PSA has been at point 3 (.3). Was put on Xtandi in addition to Eligard after not being able to tolerate Erleada because of bad headaches and extreme tiredness every time I took it. Had to stop Xtandi after two weeks because of extreme back pain between my shoulder blades that burst across my back if I coughed. I'm done with the add-ons due to quality-of-life issues. Will just stay with Eligard and take my chances."
"Found Xtandi to be a waste of time. Instead of aiding or lowering my PSA, it raised it to 90 from about 15 when starting it. There was severe fatigue and dizziness. Not satisfied."
"Side effects are too harsh and sickening."
"My husband declined after he started this medication and passed away 4 months after he started it. No I would not recommend it."
