Need help understanding Enzalutamide

I’m a wife of a PCa fella, 75 yrs old…married 53 yrs. I do all the research, then give info to him. He decides what he (we) will do with treatments.

His history…diagnosed with biopsy in 2009…1 of 12 core samples with small amount of cancer. 3+3 with a PSA of 8. He decided to watch and wait. Reality, he waited but would not have any part of watching. In 2021, he and his GP thought he had kidney stones with extreme pain. X-RAYS showed bone Mets with a stage 4 prostate cancer dx. He must have given up as he slept 23 out of 24 hrs and had extreme pain we couldn’t get a handle on. Nightmare. He was leaving this life very quickly. We were saying our goodbyes. Was so weak I had to hold his arm to sign legal papers. We talked of end of life requests, fears, questions, etc. for the hours he wasn’t sleeping. We cried, laughed hysterically at times, and shared things we didn’t know about each other after 50 years of marriage. It was terrifying although heartwarming at the same time. Then our Dr called one night and said he didn’t have to die right now. He had called his Urologist Surgeon colleague who ended up taking Pete as a patient on his next lunch hour. 2 days later he got a shot of degarilix and his life returned. His pain immediately disappeared and 2 1/2 years later he still has no pain (might have been my constant prayers helped with that 😊)

Degarilix failed after 7 months, started with a wonderful MO who put him on Lupron shot and abiraderone/prednisone. Although all the terrible SE, he been doing very well until recently. Sleeps 80% of the time.

Now it appears the abiraderone is failing with the PSA starting to rise to 3.2. Saw DR today and in November after new bone scan and CT, he will most likely take him off Abi and start the next step… Enzalutamide.

I am on this site to not only help Pete make some decisions in his care, but I can sleep after reading all the varied situations you all have shared. Until I found you all, I was lost and all alone and terrified about the future. Now, when I’m feeling scared, I dial in to all of you, walking the same path of this terrible disease. I cry and laugh and read and that calms me. Some times I read to Pete some of the funny interpretations of your journey. He laughs so hard.

I’ve left out a lot of details…those you all have experienced.

Thank you all for sharing.

Help us understand what to expect with the SE of Enzalutamide.

Soapchick

[Tall_Allen]

Instead of enzalutamide, I recommend you follow the PRESIDE protocol:

prostatecancer.news/2022/10...

Enzalutamide (Xtandi) will only work for a short time, but will work much longer and prevent pain if he combines it with Taxotere.

[Hidden in reply to Tall_Allen]

Thanks Tall_Allen for your quick response. I’ll do some homework on the PRESIDE protocol.

[Blueribbon63 in reply to Tall_Allen]

Enzalutamide is now in my immediate horizon, I just googled Taxotere! I don't think I've seen such a long list of possible SE's. I am fighting this fight all by myself, none of my dear ones on my side! SE's make me sick (pun intended) I am going to talk with MO about adding Taxotere, see what he thinks.

[Tall_Allen in reply to Blueribbon63]

Potential side effects doesn't mean you will get them. Most can be controlled.

[TEBozo in reply to Tall_Allen]

Tall, any differences between Xtandi and Nubeqa?

[Tall_Allen in reply to TEBozo]

They've never been tested head-to-head.

[Kaliber]

hi soapchick …. a warm welcome to the group. The technical medical cancer knowledge here is top drawer …. even if it’s just a place for you to come and “ unload “ on , when you need an ear to listen to you …. there are always people here willing to listen. community of brothers and sisters - caregivers to lean on if you need to. I hope the group can continue to lift your and Pete’s spirits. That’s what the camaraderie of this group is all about.

The fact that you are here strongly advocating for Pete means he is lucky to have you at his side … hopefully the group can continue to support you to make that job a little easier. You are definitely not alone here.

❤️❤️❤️

[Magnus1964]

You story touched me. It reminded me of my own early years of dealing with this disease.

Since I don't know the details of his bone Mets I don't know if external beam radiation is in order or if multiple sites where Xofigo might be an option.

You could save xtandi for later.

Magnus

[EdBar]

Predominant SE is fatigue, but it is manageable. Other SE’s include headaches, cognitive issues, muscle weakness, BP issues. These sound bad but they are manageable with exercise, getting plenty of rest, and knowing your limitations. I’ve been on Xtandi for about 9 years now, I started in the same place your husband did (you can read my profile). I’ve also had Taxotere chemotherapy early on, I found it to be very difficult but worthwhile in the long run. I underwent 6 infusions and it really took a lot out of me.

Ed

[pakb]

Sorry you have to be here- I feel the same way. This group has kept me sane in many ways. You've already gotten great help in above comments. Hoping this next line of treatments work well for you both!

[Benkaymel]

I've been on Xtandi for a year and main SEs are fatigue, hot flushes and muscle wastage. Some of this is probably due to ADT but it's hard to differentiate. I also currently have constant lower back pain needing pain killers - this only came on a month or so ago after a round of RT to a rear rib met. As mentioned, exercise is very important but I'm a compromised with this back pain.

[TEBozo in reply to Benkaymel]

Were you on Lupron, too?

[Hidden in reply to TEBozo]

Yes, he’s still on Lupron..3 month injection as well as an injection for his bones

[Benkaymel in reply to TEBozo]

Yes still on Prostap which is the same as lupron.

[Miccoman]

I was on Xtandi for 7 years before it failed. Daily exercise is the key to overcoming fatigue, in my opinion. I did a half hour on a stationary bike every day and it really did help. Keeping active helps mental attitude as well. Good luck on your journey.

[j-o-h-n]

Greetings............ Now let us in on the secret........ Did Pete give you that UserID after you kept dropping the soap (on purpose maybe?) in the shower these 53 years?

I'm sorry but you gotta take the bad with the good here....... Keep Posting and regards to Peter......and to you......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/09/2023 1:22 PM DST

[Hidden in reply to j-o-h-n]

Hey there j-o-h-n

Your humor brings a smile…you are quite the character!

Keep your imagination going on the soapchick ID. 53 years is a long journey in marriage and to make it this long a couple needs to write their own handbook! This chapter we would have rather skipped over, tho.

Thanks for sharing (and responding)

[j-o-h-n in reply to Hidden]

Like you two..... I'd like to skip over the current chapter too....... and a few more that the CIA know about oops and I almost forgot the one about Jimmy Hoffa and his hiding place......

Stay Well and Keep your chins up....... (I know, hard to after 53 years of wedded bliss (smiley face).....

Good Luck, Good Health and Good Humor.d

j-o-h-n Sunday 09/10/2023 2:43 PM DST

[Lunbo]

I have been thru Zytiga, Erleada, Xtandi & Nubeqa (latter two didn't work), then chemo and most recently Pluvicto which was highly effective after 3 infusions ( PSA dropped 95%). Investigate this. Good luck!

5