Afraid to take Xtandi

[Madbeach]

My hubby has been prescribed Xtandi but is afraid to take it due to the side effects. He wonders if the Eligard he started getting and the radiation he will start getting next week will be enough to help his situation. Had a radical prostatectomy in 2004, 38 radiation treatments in 2010. Now his recent PSA is 3.0 and bone Mets in the pelvic area. I am frightened for him too, not only if he starts taking Xtandi but also if he doesn’t. He’ll be 77 this year and has A-fib, leg stents, neuropathy and high blood pressure. Also on meds for high cholesterol and triglycerides. Not in the best overall health before getting the recurrent prostate cancer news a few weeks ago. Had a PET and bone scan last month…

[Kaliber]

Xtandi has been having a high success rate with group users in recent times …… prolonging life for many for several years or more. It’s working miracles in my life. I suggest you go ahead and give it a try and see if the side effects are anywhere near as bad as you anticipate. Most Xtandi users don’t have the bad side effects ( unlike me, mine are the worse , but I wouldn’t change a thing because my results are so good ). Nothing lost to trying and a whopping lot to gain …..Xtandi might give you many years of xtra time. If it’s too difficult, then think about an alternative.

Just say’in 💪💪💪❤️❤️❤️

[Tall_Allen]

Side effects, if they occur at all, only last as long as he takes it. He has nothing to lose and everything to gain by trying it.

[dhccpa in reply to Tall_Allen]

Why is one prescribed Xtandi instead of Zytiga?

[Tall_Allen in reply to dhccpa]

Progression-free survival is longer if one starts with Zytiga and then takes Xtandi. No one knows if that translates to a survival increase.

[dhccpa in reply to Tall_Allen]

I would tend to take survival without progression than with, but maybe I'm missing something.

Zytiga also seems a lot cheaper.

[carbide in reply to dhccpa]

Zitiga is $15K/mo List price.With Part D insurance $15K/year.

How much more can Xtandi be?

Total rip-off.

[dhccpa in reply to carbide]

I believe generic version of Zytiga is about $215 for 120 tablets on GoodRx. I've never purchased but I thought I saw that price.

[carbide in reply to dhccpa]

You missed a comma. 😁

Zytiga price GoodRx

[dhccpa in reply to carbide]

I am not now, nor have I ever been, a Commanist, Senator.

See link below. I'm not expert on GoodRx, but that seemed to me the same product. I'm in Florida, if that makes a difference.

goodrx.com/zytiga

[carbide in reply to dhccpa]

I'm in Surprise, Arizona.I am on Zytiga for 3 years.

Zytiga is another big profit drug for Bid Pharma Cartil.

Are generic equal has been approved but not the market yet hope it comes soon.

Best health by brother.

😉

[mcp1941 in reply to carbide]

My Part D co-pay for Zytiga is $90 month.

[carbide in reply to mcp1941]

Very cheap, what insurance do you have?Seems everyone pays a different price.

Thx

[mcp1941 in reply to carbide]

Horizon BC/BS. I get the generic version of Zytiga. No difference in drugs

[carbide in reply to mcp1941]

I have BC/BS in Surprise, Arizona.I did not know the generic was available.

Thx's

[Kaliber in reply to dhccpa]

“ survival without progression “ ….. I second that 👍👍👍❤️❤️❤️

[RyderLake2]

Hello, If your oncologist is recommending Xtandi (enzalutamide) then take it. I am roughly the same age as your husband and I have been taking Xtandi for four years. No serious side effects unless you are counting loss of libido, loss of body hair (not on the head), and some peripheral neuropathy. I can tolerate all of those in order to get a few more years of life. At your husband's age and stage of life it's the old story "nothing ventured, nothing gained!" You have to be a bit of a Mississippi gambler. Good luck. You can always quit if Xtandi doesn't work.

[Madbeach in reply to RyderLake2]

My hubby already has the neuropathy. So I imagine Xtandi may make it worse….

[Magnus1964 in reply to Madbeach]

I have had neuropathy and xtandi did not make it any worse.

[Madbeach in reply to Magnus1964]

Thank u for ur reply. The very best to you.

[jhrocket in reply to Madbeach]

Hello there are several non pharmacological approaches that help neuropathy. You might try a topical called capsaicin. It helped by dad. Use the roll on ...don't get it on your fingers and touch your eyes. Benfotiamine is a form of vitamin B1 that is used to treat neuropathy. He's already taking a hand full of pharmaceuticals.

[tallguy2]

Not to throw cold water on this but be aware of the risk of seizure with Xtandi vs. Zytiga. Every drug has side effects and must be managed on an individual basis.

[MateoBeach]

Fear of side effects is usually much worse than the actual side effects. Go forward with it and the fear is gone. If SEs are too bad, he can just stop it. He’s too far along in life to let fear be a factor IMO. From one M-beach to another. 🙏🏻💕

[Ianrs]

I have been on xtandi for 3 months and on my 4 th month of zolodox. No uncomfortable side effects but PSA down from the initial 64 to 0.33 to 0.16. Testosterone below 0.05 . I will have RT later in the year. I take a whole bunch of supplements including apricot kernels and apart from tiredness have not felt better in years. If I did not know I was ill I would not know it. I am 67. Diagnosed late January 2021. 2 mets in pelvis and 1 in shoulder, 2 of which are tiny.

[London441]

I hope he will heed the advice here. Not the advice that he should take it so much as setting aside the fear. Especially with a drug like Xtandi that can really help and doesn’t have lasting side effects when discontinued.

Refusing a drug based on folklore or confirmation bias is a mistake.

[larry_dammit]

😢. What a warrior, the side effects can be bad but they can also be tolerated. I’ve been on Xtandi now for almost 5 years and am doing well, the side effects can be lessened if taken at night and watch the other meds that he takes. Xtandi has a full time group of pharmacist on call ,if needed they can help with any issues. Just saying. 🙏🙏🙏

[Turt713171]

Why not zytiga?

[Jaguarxj]

I think I have followed your husband's footsteps in life. Had a RP when I was 54, cancer came back had the radiation 6 years later, all has been good for 12 years and it's back. For 2 years I have done nothing but keep an eye on my PSA and it stayed between 1 to 1.5 during that time. Then suddenly my PSA was at 5 and a week later at 6 and so on till 8. Had to do something so I went on Casodex for 1 month, brought it down to .02 . Then for added measure started Zolidex which is very easy to take once every 3 months, got off the Casodex, and started Xtandi. I have now been on Xtandi for 1 month & yes I was apprehensive taking a drug that starts off with 4 huge pills at once but, what's the alternative. If you believe in your doctor then you do what he thinks is best for you. When you board an airplane you put your life in the hands of the pilot flying it. My oncologist is now my pilot. In the beginning of taking Xtandi there were a few negatives but I have adjusted to them and I am grateful that we have a drug available like this to see maybe better days. Don't be afraid if your doctor ordered it, take it, the only thing I would suggest is taking it in the evening instead of in the morning as it does make you very drowsy in the beginning. Best of luck to you👍

[33947]

I've been on Xtandi since last October. Fatigue developed as a real problem over the first two months but PSA dropped dramatically over that time. In December my MO proposed that we try reducing the standard dosage from 4 pills (160 mg) and see how I responded. I am now down to two pills (80 mg) and the PSA has continued to decline and the fatigue is largely gone,

[Pinkpeanuts07]

Hi my dad was just very reluctant to start Xtandi because of the side effects. However, we persuaded him and his Onc thought he should give it a go- they halved the dose (2 tablets not 4) and the side effects minimal ( runny nose some days) but it’s lowered his PSA. He’s 93 and has rt shoulder and left hip mets. The former was v painful but not since starting Xtandi 4 months ago. Take each day at a time. Note that they monitor patients v closely. Good luck .

[Napper01]

Don’t be scared, I’ve been on Xtandi for six years, started on four tabs daily and fatigue was a huge issue but it was the only real side effect apart from weight gain, I dropped to three tabs after two years and now on two tabs daily. Energy to burn now and PSA steady at 0.01. I also concentrate on diet, exercise and take Isotonix daily. Best thing is to keep positive, active and stay working! I’m 63. I also get a Lucrin jab at 3/12 interval.

[afab]

I have been on Xtandi for over 5 years and Elegard/Lupron for 7.4 years and still in durable remission. I also have afib, HBP and high cholesterol.

Quality of life negatives: loss of libido, brain fog, and minor neuropathy.

I smoke a cigar and have one to two fingers of single malt scotch every other day.

I’m enjoying time with my wife, kids and grandchildren and living in the present.

When Xtandi fails my onc.will try something else; she’s the Kaiser pc go to person. There are lots of options out there.

I’m also writing my autobiography. It’s freeing.

I wish you and your hubby well. Stay positive! Art

[afab in reply to afab]

PS my current age is 81.

[Madbeach in reply to afab]

Wow, thx for the info. I’m hoping my husband does as well as you have. I wish you the very best.

[Kevinski65]

I was diagnosed in 2012 , I’m now 70. I was psa 31, stage M1, Gleason 9, doubling time 5 months. I had depression at the time. I was on Prozac but they added desimpramine. I started with lupron and casodex for flair. They stopped casodex after 2 weeks. I went 2.5 years on lupron only. During that time I took lots of supplements. Aspirin was the main one. I also ate pomegranates, too lycopene, I literally drank tomato sauce , ate blueberries, raspberries, apples , broccoli and other things I read would help. Kitchen sink 8 supplements at a time. I later read that desimpramine slowed down prostate cancer. I was in a clinical trial at NIH . They were comparing lupron ( or degarilx) with Xtandi; or prostvac sp ( a fowl pox vaccine) and Xtandi alone. These were 2 arms. I got in Xtandi alone group. I went 7 years this way. Almost 10 years out 2.5 on lupron , diagnosed at age 59, in 2012 now 70 . I took many supplements, I don’t know if they did anything. NIH flies you back and forth, I retired so no problem. They closed the study after 10 years. They found that prostvac with Xtandi didn’t increase survival. I don’t know if the supplements did anything… In the USA if you make less than 80000 a year you can apply for free Xtandi. It’s available in capsule or pill form now . You go through Astro Zeneca. My psa registers low at .04 or .1 depending on the regent being used . I just take leuporide , Xtandi and zyflamend whole body now. I still take some aspirin but was cautioned about this lowering platelets , and prostaglandins . The anti depressants desimpramine and prozac helps . Fatigue, insomnia, loss of muscle mass, breast enlargement, belly enlargement are side effects. Loss of body hair, libido , shrinking gonads are all there and part of the territory. With stage 4 and M 1, Gleason 9 and Psa 31 with 3 distant bone Mets at diagnosis, I’ve been told im doing pretty good with a now low psa and shrinking mets. If ever there is a mutation I’ll be scrambling. Good luck to those fighting this disease, it’s no bowl of plumbs .