what next? Really need your advice. - Advanced Prostate...

Advanced Prostate Cancer

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what next? Really need your advice.

A596 profile image
A596
12 Replies

Hi after some advice. Quick background. Husband diagnosed with Metastatic Prostrate cancer in Dec 20. Mets to spine and ribs. PSA 130. Straight away put on meds and PSA came down to 14 before he started docetaxel in march 21. 6 sessions PSA came down to 7 at end. Has been having some muscle pain in ribs and 3 month check today PSA up to 23. We are in the UK and I had asked right at the start about triple therapy but they said not approved yet in UK. So didn’t see the main man today saw one of his team who said they wanted to now put him on more chemo Cabazitaxel. He is self employed and is due to start a new contract next week so I had to push the guy to ask if zytiga would be an option (I’ve read lots on here about it) so he could still work. He said yes and has give us reading material to go away and think about it but he was really trying to push us down chemo route. Can anybody offer any advice on this. So worried as wasn’t expecting us to be in this position so soon 🥲. Thx

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A596 profile image
A596
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12 Replies
meowlicious99 profile image
meowlicious99

Can they give you enzalutamide ?

How old is the patient?

A596 profile image
A596 in reply tomeowlicious99

yes choice of 3

A596 profile image
A596 in reply toA596

he is a young 62. Date wrong in my original post. Was last December diagnosed so Dec 21

dhccpa profile image
dhccpa in reply tomeowlicious99

why enzalutmide instead of Zytiga?

meowlicious99 profile image
meowlicious99 in reply todhccpa

something to do with UK NHS. I am not 100% sure.

David1567 profile image
David1567

My hubby (55) seems to be on the exact timeline, same diagnosis maybe? (Read our bio to confirm). My husband started zoladex (Adt) Feb, chemo March to June and Zytiga (abiraterone) in July.

Just confirming your husband is on ADT also? He did the 6 sessions of doxetaxel, he could have tolerated more but his PSA was rising. MO says to keep ahead of the cancer to keep confusing it and he would not benefit from more chemo at this time.

We thought more chemo to eradicate all cancer? But now I understand better the plan, It comes from all the reading i have done here. Great advice from these pc warriors.

So if able, push for zytiga or Enzaludimide as next treatment choice and save more chemo for later. And in some cases These 2 drugs can be used again (later in) after chemo.

Best of luck, Tracey

A596 profile image
A596 in reply toDavid1567

Hi Tracey thank you so much for your reply and yes seems we are I the same ‘boat’ so to speak and yes On ADT. Feel like I am on the worst roller coaster ever and really struggling this week. My husband is super positive and I’m really hoping we can some stability for a while and try and enjoy life. I’ve read your husbands bio. What next for you now? So many stories on here of positive responses to treatment and I’m really hoping that our men get this soon. Keep strong Ange x

larry_dammit profile image
larry_dammit

no advice as I’m not a doctor but , after chemo my doctor put me on a regiment of ADT ( anti hormones) and Xtandi. That was 6 years ago. PSA went down to 0.05 and has stayed there ever since. Just saying

A596 profile image
A596 in reply tolarry_dammit

Thank you for your reply. Gosh I am praying we get this type of response 🙏 Did your chemo work?

Mrtroxely profile image
Mrtroxely

im in UK, I'm 49, I'm sole trader, electrician, advanced stage 4 prostate cancer, Gleason 9, mets in pelvis(possibly more places.

halfway through 1st cycle doxetaxel.

'had' work contracts to fulfill......

Cabazitaxel is seems offered in UK if had doxetaxel as you have, and having chemo again......

triplet not, but that's chemo, ADT and arbitorone, applutimide, enzalutamide (I had couple weeks on enzalutamide.....for me was awful)

ive done little bits work in this cycle of chemo,

i cracked cusomers glass door, forgot safe issolation, left a fuse on table while having lunch break and could finish job.....had run to loo for pooh(thehouse had no running water.....pooh still there today!!!!)

SERIOUSLY JUST GETTING UP AT REGULAR TIME WITH DISTURBED SLEEP IS HARD ENOUGH..... Chemo fog, and physically not being able do what I did before.

Stress will feed the cancer........

You guys want chat, feel free to message.

call the Macmillan citizens advice and look for financial support, hubby on limited time frame, need care for them bones now. Really need look after your time together and cut out things what feed the cancer, look for what's important. Tell his work mates his possition and get understanding and just do what hes able do.

i do not want spend my last days on planet with a full wallet and dead in somebody's loft.....

hopefully I'll go whilst out picking blackberry's, in a feild with a friend, kids, family member or my partner.

hope yourasgood as you can be.

Ps, look after you(wifey)

Keep him pointing forward

and massive well-done for finding this site.



lcfcpolo profile image
lcfcpolo

Some good advice. UK here as well. If your husband has a private pension plan then call them , they will pay out as stage , which may take away some stress (they will tell you which forms or letters your consultant needs to complete). Also speak to MacMillan as mentioned as he should qualify for some benefits.

I'm on Enzalutamide which has worked ok so far, just some fatigue before I get up. People do seem to carry on working ok, this is my first line treatment. Good luck. Your a great wife by the way.

A596 profile image
A596 in reply tolcfcpolo

Thanks for your reply. Thats good you are taking enzalutamide and it’s working for you and I think this is what he is going to opt for. They have said that in the first couple of months only can swap over to Zytiga if any major problems and then later on do the chemo again. He doesn’t want to give up work yet as he really enjoys it. Pensions all sorted so no stress there 🙏

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