Enzalutamide (Xtandi) or not - Advanced Prostate...

Advanced Prostate Cancer

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Enzalutamide (Xtandi) or not

x-rays1 profile image
42 Replies

2012 Robotic Prostatectomy. Gleason 3+4

2015 Salvage Radiation plus 6 months Zoladex

2019 and 2020 PET/CT scans showed 2 mets to spine and one in Ribs plus several in left back lymph nodes.

2020 Rising PSA to 11.8 with 2 mets to spine and one in Ribs plus several in left back lymph nodes

2021 (March) went on 3 monthly shots ADT (Lucrin Depot) since March last year PSA has been undetectable for the past year.

2022 My MO has asked if I would like to go on Enzalutamide and of course continue with the 3 monthly Lucrin shots.

They are as undecided as I am as to whether this is a good idea. I know that some trials have shown a small life increase if started early enough but do the side effects make this worthwhile.

I would like to hear from anyone who is doing this and what they are experiencing and I would appreciate any comments others may have.

Thank you

42 Replies
Nusch profile image
Nusch

I was not in the same, but kind of similar situation: BCR and mets to pelvic lymph nodes only, no bone mets. My doctor recommended Apalutamide (Erleada) in addition to Lupron after IMRT/VMAT. I read all studies available to me and discussed here in this forum. I asked Euge Kwon from Mayo Clinic for a second opinion (I’m living in Europe). The answers were pretty mixed. I have to admit that I was also thinking about potential side effects, more long term on CVS than short term like rush etc. At the end, one year ago, I decided against Apalutamide and my PSA is still undetectable. Was it the right decision? Nobody knows and not even future will really provide an accurate answer. Your situation is different, so I can only recommend to get multiple opinions before making a final decision. Did you also discuss SBRT?

x-rays1 profile image
x-rays1 in reply to Nusch

Thank you for your reply and for your own circumstances/decision. No I have not done SBRT at this stage. I am hoping to get quite a few responses from others who have, or have not, started taking Enzalutamide while still hormone sensitive. Good luck for the future Nusch.

Echotango51 profile image
Echotango51

Hi -rays1

I have been on lupron since 2016 continuously. When my PSA reached 1.09 in June of last year my uro started me on xtandi. I see a medical oncologist at MUSC, he told me to stay the course. The only problem I have had was headaches in the middle of August. URO told me to stop xtandi for five days then take 2 pills and work back up to 4 pills. I started taking 4 pills the first of September. I take 2 between 10:30 and 11 am, then 2 between 10:30 and 11 pm. My PSA has dropped to 0.16, with no problems. When the headaches started I was taking 4 pills at 11pm

Hope this is helpful

ET

x-rays1 profile image
x-rays1 in reply to Echotango51

Thanks ET. Yes I've heard that one of side effects are bad headaches. Did your headaches come back when you went back on it?

Echotango51 profile image
Echotango51 in reply to x-rays1

No headaches since I take the 4 pills , 2 in the morning and 2 at night. MO at MUSC told me xtandi’s 1/2 life is 1 week and I could take the 4 pills anyway I want during the day. It’s easier for me taking the pills twice a day.

Tall_Allen profile image
Tall_Allen

Its not a "small life increase." When started with Lucrin at the beginning, Xtandi reduced risk of death by 34%, and delays radiographic progression by 37%. Most of the side effects of hormone therapy are from the ADT.

x-rays1 profile image
x-rays1 in reply to Tall_Allen

Thank you for your response and useful information TA. It is the increased side effects that worry me and the increased toxicity, but you're indicating that the side effects are not so bad and it sounds as though the benefit far outweighs it. Thanks again.

Tall_Allen profile image
Tall_Allen in reply to x-rays1

Side effects are always very individual. The only way to know is to try it out.

Tinuriel profile image
Tinuriel in reply to Tall_Allen

Same as TA - my husband has been on Xtandi in addition to Lupron with no added ill effects. After one year his PSA is rising again, and we are looking at layering another treatment, but it was a good choice for him.

x-rays1 profile image
x-rays1 in reply to Tinuriel

Thank you Tinuriel for your comments.

londoncyclist48 profile image
londoncyclist48

Take them. I've been on enzalutamide for just over two years. In my experience, the side effects are pretty minimal. But your doctor will know better than me.

Kaliber profile image
Kaliber in reply to londoncyclist48

I’ve been on enzalutamide since 2018 .. 51 months. I experience side effects but headaches are not among them. For me and many other guys here, Xtandi ( enzalutamide ) is particularly effective at longer term life extension for guys that had high PSA’s ( neighborhood of 1000 or more ) when started on it. Rather than “ small life increase “, more like “ long life increases “ seems / sounds more appropriate. Just anecdotal and imho .

londoncyclist48 profile image
londoncyclist48 in reply to Kaliber

I totally understand you. When I was diagnosed, I was told that if I hadn't sought medical attention when I had, I would have been dead within two weeks. I have to say, I think the side effects of enzalutamide are minimal compared to other treatments. I have had chemotherapy for lymphoma recently and my right foot has gone numb.

Kaliber profile image
Kaliber in reply to londoncyclist48

it seems like , like you , most guys have mild or manageable SEs on enzalutamide. And it’s particularly effective as well. I’m , however, one of the small percentage of guys guys that have the most extreme SEs , but it’s been very effective for me. It’s disabled me into a wheelchair tho.

Hospice was my first offer - recommendation of care , Lupron Xtandi Zometa have extended my life 51 months so far , much to the shock and surprise of my medical team. To my shock and gratitude as well yayahahahaya. It’s been a bit rough around the edges but it’s been very effective. It works for me.

London441 profile image
London441

If you are handling the ADT well, Xtandi shouldn’t make much of a difference. I didn’t take Xtandi but I did have courses of Zytiga, IMRT and radiation with ADT throughout. The ADT was the only real challenge.

Was any additional treatment recommended in the 5 years it took your PSA to rise to 11.8?

x-rays1 profile image
x-rays1 in reply to London441

No I was not offered any other treatment. But I'm not sure I would have taken anything else anyway. Thank you for your reply.

larry_dammit profile image
larry_dammit

stage 4 with Mets ,cancer has spread into the bones in several places. Doctor said it would do no good to remove my prostate. When I finished 6 rounds of Taxotere ( chemo ) I was put on Xtandi. That was 6 years ago. Doctor and I are very pleased that my PSA has stayed undetectable since going onto Xtandi. I also get two shots every 28 days. Eligard and Xgeva. Worked for me so far 🙏🙏🙏

x-rays1 profile image
x-rays1 in reply to larry_dammit

Did you go onto Xtandi whilst you were still castrate sensitive?

larry_dammit profile image
larry_dammit in reply to x-rays1

yes, I started the Xtandi as soon as I finished chemo. Have been on the same regiment sense 12/16

Shamrock46 profile image
Shamrock46

My husband has been on Enzalutamide for almost 2 years except for brief periods when it was stopped due to SEs. For the last 6 mos. his dose was reduced to 1/day. His PSA is now doubling and MO coaxed him into going back to 2/day for 6 weeks/next visit. From what I've read from posted experience of others here and 2 other web pages, some don't experience much in SE's and they're the lucky ones. Those like my husband suffer multiple SEs including edema, restless leg syndrome, anxiety, rosacea, muscle/strength loss, trouble sleeping, etc. Honestly, you won't know the pros/cons until you try it. And as the MO said when he started it, "It works until it doesn't" which appears to be now. And when that happens, the PC comes back more aggressively. I believe it afforded him some extra time but everything's a trade off.

Grandpa4 profile image
Grandpa4

I am on both Lupron and Abiraterone. My side effect are

1. Complete lack of interest in sex.

2. Inability to get stronger despite lifting weights and exercising like crazy.

3. Hypertension that responds to medication but I have had to increase the dose over the year I have been on it.

4. Rare hot flashes.

The only one of these that I got specifically from adding abiraterone is hypertension.

Seems like you have nothing to lose by trying it. If it causes side effects that you can’t live with stop it.

Kanka99 profile image
Kanka99

Upon completion of Provenge in October 2022, my psa shot up from 1.1 to 4.3.

My doctor placed me on Xtandi 160mg daily. I have also been on Lupron depot since 2021. The side effects of both Lupron and Xtandi have included fatigue, some back pains and quite serious constipation and stomach gas. However, OTC meds do help with these stomach issues and constipation.

Since I began Xtandi in November 2022, PSA has fallen. It fell to 0. 2 in early December 2022; as at today January 18 2023 PSA is <0.1; that is my good news for the day.

I am considering lowering my daily intake from 160mg to 120mg, considering that my psa has shown a downward trend. To me the side effects of Xtandi have not been too bad, considering the benefits. Best to you my brother, and best to all the brothers and a few sisters in this platform.

Kanka99 profile image
Kanka99

I forgot to add hot flashes as part of the side effects of Xtandi.

RyderLake1 profile image
RyderLake1

Hello,

I had considerable success with Xtandi (enzalutamide). I started taking it in September, 2017 and only recently stopped in November of last year. That’s over five years. Were there side effects? Sure but fortunately they were not serious and nothing I couldn’t handle. In my case loss of body hair (mostly pubic and under the arms but not head), celibacy and at the beginning occasional hot flashes. I would accept your doctor’s recommendation. Give it a try.

x-rays1 profile image
x-rays1 in reply to RyderLake1

When you started Xtandi, were you still castrate sensitive.

RyderLake1 profile image
RyderLake1 in reply to x-rays1

Hello,

Castrate sensitive? Not sure. Before I started on Xtandi (enzalutamide) in September 2017 my PSA had been rising steadily. It went from undetectable a few months earlier to 3.4. My oncologist suggested I try either Xtandi or Zytiga (abiraterone). I opted for Xtandi. Now, five years and a couple of months later, I am on Zytiga. Funny where life takes you. My next step, should my PSA start going up again, is Pluvicto (Lutetium-177).

Proflac profile image
Proflac

Hi. My husband had enza while still hormone sensitive. Unfortunately had bad se - massive fatigue and cognitive issues. They tried half dose but no better so he switched to abiraterone. Was only on enza for 2 months I think so switching was possible. The extreme side effects reduced on abi. As TA says most of the reduction in QOL comes from the ADT but he was certainly better on abi than enza. I guess responses are very individual so you would need to take it and see. My reason for replying is to say that if it is too bad to tolerate in your case then maybe you can move quickly to another second gen. Tx such as abiraterone.

x-rays1 profile image
x-rays1 in reply to Proflac

Thank you for your reply and your useful comments.

Wahoo_ profile image
Wahoo_

When I started taking Xtandi, along with Firmagon injections once a month, I had Mets to three ribs and one in my right hip. This was started a couple of years ago. Since then, my Mets are gone! My PSA is <.01 since. My side effects are the usual as with ADT, but mine are tolerable. I say go with it….what have you got to lose? This is after 2 bone scans!

x-rays1 profile image
x-rays1 in reply to Wahoo_

Thanks Wahoo for your reply and details of your experiences. Can you let me know if you are still castrate sensitive? After reading your reply, I'm certainly moving towards taking them even though I am castrate sensitive.

Wahoo_ profile image
Wahoo_ in reply to x-rays1

yes I am….thankfully!

CharlieBC profile image
CharlieBC

I am on a very similar path. Short version: I am very content with Lupron/Eligard ADT and Xtandi. Inna Gadda Davida version: Diagnosed 2010, RP 2011, salvage radiation 2012. Quieted things down til 2014. PSA rose, so started intermittant ADT/Lupron which knocked down the PSA. 2018 regular 6 month dose of ADT. Tried Bicalutamide (Casodex), made me sick. Tried Zytiga, worked great, made my liver enzymes go out of tolerance. Been on Xtandi since August 2021. Good results, minimal side effects. Good luck to you.

x-rays1 profile image
x-rays1 in reply to CharlieBC

Hi CharlieBC. Thank you for your response and details of your experiences with Xtandi. Can you answer the following question for me, are you still castrate sensitive? I ask this because I'm not sure whether I should not take Xtandi now or wait till I become castrate resistant. thanks again.

Kevinski65 profile image
Kevinski65

I have been diagnosed in 2012. PSA 31 stage M1, doubling time 5 months, Gleason 9. I was just on lupron for 2.5 years, then lupron and xtandi. I was 59.5 when diagnosed and now I'm 70. I believe xtandi extends life. There's a lot they don't know. I've been on xtandi 7.5 years.

john4803 profile image
john4803 in reply to Kevinski65

I have been on Lupron & Apalutamide for 7 months, with few SE's but it may be failing. See my thread: healthunlocked.com/advanced...

x-rays1 profile image
x-rays1 in reply to Kevinski65

Thank you so much for your response to my post. Are you still castrate sensitive? Seems that I have nothing to lose by starting it.

Kevinski65 profile image
Kevinski65 in reply to x-rays1

I guess if you mean ,by castrate sensitive, is xtandi and lupron still working...yes it is. My PSA is .04 ...Which is the lowest they can record. I also took many supplements. Whether they helped , I don't know, but I've been on xtandi and lupron a long time.

x-rays1 profile image
x-rays1 in reply to Kevinski65

That's great. good luck for the future.

x-rays1 profile image
x-rays1 in reply to Kevinski65

Sorry I wasn't very clear with my question. Did you go onto Lupron first and did your PSA start rising again before you went on Xtandi? I am trying to find out if taking the Xtandi whilst I'm still on ADT (Lucrin Depot) and my PSA is not rising, is a good idea or wait till the PSA starts to rise again before starting on the Xtandi. Sorry, I hope that makes sense.

Channelhomec profile image
Channelhomec

Hello x _Ray at what point was your psa when you did salvage radiation . You had such a good response

x-rays1 profile image
x-rays1 in reply to Channelhomec

it was just under 5.0. The Salvage Radiation was only to the prostate bed and I'm not sure how successful it was because all my mets are higher up, spine, ribs etc. my PSA did drop but it could be due to the ADT that I did at the same time for 6 months..

Channelhomec profile image
Channelhomec

Thank you, hoping everything works out for you, this is a long journey, I had a reccurant psa also ,and had salvage radiation .....

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