after Zytiga stops

Hi again 

I'm just 'bumping' this post back to the top of the discussion list in case anyone in the group has experience of treatment after Zytiga has stopped working.

Has your dad spoken to his CNS or oncologist as they should know what might be offered next?

You could also post your question in the ask a nurse section of the online community and one of the specialist nurses will aim to reply within 3 working days. If this is something that you'd like to do, clicking on the link I've created will take you straight there.

It would be great if you could pop something about your dad's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi ja32, If he is able to tolerate it and hasn’t had cabazitaxel chemotherapy, might be worth asking. If he has spread to his spine, radium223 or lutetium 177 are used to attack bone mets. 
Some people try an older hormone therapy drug called Stilbestrol which sometimes works well.

Stilbestrol

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cabazitaxel

Hi ja32

My husband has been taking Zytiga for the past 10 months but for the past 2 months his PSA levels have been rising and he's been getting more aches and pains around his ribs, back and hip.

His consultant has just proposed giving him 6 doses of Radium 223. She was weighing up whether further chemo or the Radium 223 would be best at this point but decided that she'd rather keep the chemo in reserve. I guess everyone is different and I'm still reading up and trying to work out the implications. I'm a little concerned that there seem to be reports suggesting Radium 223 should not be used alongside Zytiga because of increased risk of fractures but she's also prescribed a bone health agent (Zoledronic Acid) which seems to reduce the risk of fractures following Radium 223.

Backstory - My husband is 55 and was diagnosed with advanced prostate cancer in January 2019 which had metastised to bones and lymph nodes (PSA 2000). He had a short period on bicalutamide before starting on decapeptyl hormone injections and 10 rounds of docetaxyl chemotherapy from Feb - Oct 2019 -  followed by 36 rounds of radiotherapy which ended in Feb 2020. His PSA levels came down to around 50 but by last May had risen again to 600. The Zytiga seemed to be working well until a couple of months ago when he started to get more back ache and aching around his ribs and his PSA levels started to rise again.

My husband's consultant is always very positive and we trust that she is doing her best to give him the most time and best quality of life possible. I am convinced that her optimism has helped my husband to stay positive and that in turn has helped him to continue to embrace and enjoy life since his diagnosis. We are afraid but try to stay focussed on the present and deal with what comes along at each stage.

I hope your dad is able to have a similar positive relationship with his consultant and to keep on keeping on.

Wishing you all the best

Patience P.

Finally a reply with facts and proper info, Dad was at 10,000+ PSA. Got a face to face meet with onco end of May. Letter they sent out seems she hinting at chemo again. Yes i heard the Radium223 can cause it to spread and bones get very weak. Our onco seems an idiot to be honest not caring blunt just a horrible person. She gives no signs of hope even when PSA came down from 10,000+ to 132. You'd think she'd smile say things was going great all she said is "well it should be single figures". I snapped and said "we started at 10,000+". Then she checked her laptop and said "oh yes". She still thinks his PSA was first noted at 1,000. Honestly i caught her making 4 mistakes so far. If it was a man i would of knocked him out by now. Thanks so much for a proper informed reply. Means so much knowing there is at least one more option. Im so scared i watched mum pass from breast cancer she was 57. It was horrific i don't know why people say the shit "passed peacefully away" I have been there with mum,uncle,auntie and nan all cancer there is nothing peaceful at all. It's brutal slow torcher. I think i may have a heart attack before end of May i can't go through this again and this time im all alone. What must poor old dad be going through.

Thanks so much for a great reply CHEERS, GOOD LUCK, STAY STRONG.

So sorry to hear all you've been through already and are going through now with your dad. Just a few more pointers for further info - I've found the Prostate UK website quite helpful for outlining potential treatment options  for metastisised hormone resistant (or relapsed) prostate cancer (mHRPC)

https://shop.prostatecanceruk.org/advanced-prostate-cancer

The NHS NICE guidelines for medical professionals can give you some idea what constraints and options they're working with.

https://bnf.nice.org.uk/treatment-summary/prostate-cancer.html

I've also found the nurses on the Macmillan helpline really helpful in explaining treatments and giving guidance at times when we were unsure whether or not to seek medical help urgently for certain symptoms.

My husband's consultant has been very open with us about some of the NHS constraints she has to work within - what treatments are allowed/not allowed in certain circumstances, when she has to make a special case for extra rounds of chemo or radiotherapy beyond the standard, what seems to be coming out of the latest unpublished research that differs from current practice in terms of combinations or sequencing of treatments.

Does your dad have the option of asking to see a different consultant if you're not happy with his current one? Again Macmillan helpline may be able to advise you on your rights.

Hope these suggestions might be able to give you a little more idea of possible options. This forum can be a real help although sometimes it's hard to find someone else in a similar situation. 

Keep in touch.

Patience P