xtandi

[Warriorthree]

I was diagnosed with Advanced Prostate Cancer in November 2020, my PSA at that time was2600, had it not been for Covid I would have had Chemo but I was lucky enough to be put on Xtandi, four tablets a day, had the usual side effects, restless legs, hot sweats etc but I persevered and now 2 years later my PSA has remained at 0.02 and I speak to my Consultant in May have no side effects and it is just a practice I perform at 5-00 clock every day. I am so grateful to be in this situation thank god for the NHS

[RyderLake1]

Hello,

I feel the same way. I was put on Xtandi (enzalutamide) back in September, 2017. It worked for over five years with very few side effects other than fatigue. I hope you have similar results to mine. Recently, I replaced Xtandi with Zytiga (abiraterone). I hope to get another five years but that might be wishful thinking. I am guessing you are writing from England. If so, sorry about the Three Lions losing to France. Harry Kane will never forget missing that penalty shot ten minutes from the end.

[Warriorthree in reply to RyderLake1]

Thank you wish you every success for the next 5 and beyond as for Harry Kane he should never have taken it Marcus Rashford had placed the ball and he would have scored but good luck to France

[CAMPSOUPS]

That's great news. May you continue for more years to come having these results.

[CrocodileShoes]

Where are you receiving treatment? I'm at St James in Leeds. My PSA was considerably lower than yours (6) but Bicalutamide had stopped working. I asked my onco if I could do quarter dose Xtandi and he agreed. PSA has steadily declined to 1.3 and my hope is that I may be able to stay on it longer. I'd be happy with your 5 years, especially since there are a few horses left in the race...I was first diagnosed in 2009, and I've been so grateful for the NHS, despite government underfunding it!

[Warriorthree in reply to CrocodileShoes]

I’m so grateful for the N H S to be able to take just 4 tablets and now after 2 years no side effects and life is good

[PSA680]

Good morning Warriorthree - I was in a very similar position; UK, NHS, psa=680, distant mets on diagnosis, new first line SoC during pandemic - ADT (Firmagon) & Enzalutamide. PSA reduced to undetectable in 8 months & 2 years on from this is still undetectable, getting CT scan annually just to check & this shows tumours are shrinking. I get quite a lot of SEs but on balance have a good QOL. Good luck for many more years at undetectable my friend Merry Christmas Darren

[Warriorthree in reply to PSA680]

Good that is great long may it continue

[A-rat-22]

is there anything other than medication that you are doing to get these great results? Just curious and looking for ideas to share with my dad (recently diagnosed with advanced PC)

[tarzantass in reply to A-rat-22]

Doing exercise (weightlifting, situp, squatting, etc.) on a daily basis is a must. Strict diet is also important. No red meat, no diary including milk, egg yolk, cheese, and alcoholic drink should be refrained. Have smoothies (including beetroot, carrot, onion, ginger, broccoli sprout, lemon, walnut, frozen cranberry, apple...) twice a day, once in the morning and once in the evening. And most importantly, say a little prayer. I pray to God every night before going to bed, asking Him to cure me of this disease completely.

[Warriorthree in reply to tarzantass]

I honestly believe there will be some encouraging news in the next few years

[Warriorthree in reply to A-rat-22]

not for me just take 4 tablets a day and life is good

[Warriorthree in reply to A-rat-22]

no nothing at all just 4 tablets a day life is good

[PSA680 in reply to A-rat-22]

Good morning A-rat-22 over 2 years 9 months since my APCa dx - heck of a day. I’d like to share the things I do to try to stay happy & as healthy as possible. Some I’ve been blessed with & others I’ve incorporated since dx. Some have no medical provenance but I just feel they help(in no particular order):1. Take your medications as directed by your oncologist (once you’ve understood them & consented to their use). Develop a good working (2 way) relationship with your oncologist. Prepare fully for each consultation.2. Spend time with your family & friends.3. Exercise, exercise, exercise - I walk (lots) & do light resistance training.4. Try to keep your weight down -ADT will challenge this.5. Eat a sensible diet - mostly plant based but including chicken & fish - keep your calcium up if you’re on ADT. I also take Sage tablets for hot flushes, vitamin D3 & glucosamine additives but have no medical evidence they work.6. Cut back on alcohol but enjoy a pint, glass when you fancy one.7. Drink lots of water.8. Learn as much about your condition, APCa , treatments & future developments as possible.9. Use this forum to get invaluable support & knowledge you won’t get from family & friends & medical team - an almost infinite source of information & comradeship. You are not alone & (usually) there are others a lot worse off than you.10. Get your affairs in order.11. If you’re fortunate enough to be able to , retire.12. Live each day as it comes - smell the roses & ride the punches. Try to take gratitude from simple things & accept you won’t necessarily be able to do everything you did pre dx.13. Prey for a cure in your now limited lifetime & try to keep going with this hope in your heart.14. Get enough quality sleep.15. Try to have something to look forward to on the near horizon.16. Get a sausage dog 😀.17. Try not to obsess over PSA results (& if you can do this pls advise me how you do it 😂).18. Be lucky with the response to your treatments. A few sayings I’ve seen (not mine) whichI feel have helped:Never borrow tomorrow’s sorrow.Never give up ,never give in.The longer you live, the longer you live.I realise I’m still in the ‘honeymoon’ period of this horrible disease but these simple things have helped me & hope some may help some of you on your journeys.Good luck my friends & thanks for your support ♥️Darren& remember there is no winner in this fight it’ll be a draw in the end, when you die so will the cancer-just try to go as many rounds as you can 🥊🥊🥊

Hope this helps a little

[Warriorthree in reply to PSA680]

what a brilliant piece of information in relation to you that’s why I love this site people are so resolutefull and so optimistic absolutely fantastic

[tarzantass]

You are right about it when you said you were lucky not to take chemo because of COVID. An urologist in Taiwan said chemo is not on his list of diagnosis of PCa. Till this day after six years of diagnosis, I haven't had chemo, just lupron and Xtandi. My PSA has remained undetected till this day. When I was first found out I had PCa, my PSA was 180.

[pakb in reply to tarzantass]

Chemo (docetaxel) at the start with ADT was great for my husband. Currently triplet therapy (docetaxel + abiraterone + adt) at diagnosis is showing the best results when metastatic. Others have found success with diff treatments- but chemo is not a bad choice.

[Warriorthree in reply to tarzantass]

Lovely that’s great news I love this site so much positivity

[Warriorthree in reply to tarzantass]

That’s brilliant and I’m so glad I didn’t have chemo , must admit that is a fantastic regime but don’t think I could stick to it all but good luck to you

[larry_dammit]

great news, been on Xtandi now for 6 years myself. No complaints here except for the cost. Never give in Warrior 🙏🙏🙏

[Warriorthree in reply to larry_dammit]

great news and thanks for the fantastic NHS no cost to me

[Finlay66]

Good to hear. Well done especially as I'm one of the many that has found Xtandi failing.

[Warriorthree in reply to Finlay66]

Sprry to hear that hope you find something that suits you

[pakb]

So glad you've had great news! My husband's first treatments at diagnosis were chemo and ADT then added zytiga (abiraterone). Chemo went very well for him. He's had great success with that start the last 5.5 years. Always good to hear success from any treatment.

[Warriorthree in reply to pakb]

This is a lovely inspiring web site

[SteveTheJ]

It's nice to hear someone who's persevering. Keep it up.

[Warriorthree]

thank you

[positive-thoughts]

Had Chemo which worked reducing PSA from 160 but after seven hospital trips PSA started to rise. Stopped course andput on Xtandi and PSA has dropped to 9 but I do experience side effects which I wonder if are common? Legs and feet by late afternoon feel a bit numb, (I sit at a desk a lot) also I get occasional hearing block as if I've been in the swimming pool. It goes when I lay down and may have nothing to do with the drug? Good to read people with long term experience of Xtandi have found it sucessful. Do you take it two tablets at a time or four spaced out?

[Warriorthree in reply to positive-thoughts]

I take four all together at 5-pm no problem at all feel a little fatigue but not much been on them 2 years now had slight side affects irritable legs and hot flushes but they have all gone now PSA started off 2600 now 0.02 and been the same ever since speak to my Consultant in May 2023 life is good

[positive-thoughts]

Thats encouraging. I rarely get hot flushes but I have read that oxytoxic drugs can affect the hearing. Never had a hearing problem before but I do spend time listening to vut tube items with ear phones so, maybe..........