Advanced prostate cancer diagnosis

Hello Daughter93 

A warm welcome to the group - it's fine to be a "lurker" as we appreciate not everyone is at ease with having their medical issues on a public forum. You are no doubt aware I am Brian one of the Community Champions here, in fact I am on my personal Prostate Cancer journey.

Triplet Therapy is the newest treatment for advanced Prostate Cancer and has been around for about 12/15 months. It works best when started around 12 weeks from diagnosis. We have a couple of Community members who have been on either Triplet or Chemotherapy and they have been blogging their journey and here's the links:

 Prostate Cancer Recurrence - Triple Therapy 

 Grant’s prostrate cancer Chemo blog 

I don't have personal experience of Chemotherapy (click on my avatar or user name for my journey) but I hope the above helps. I am sure further helpful posts will follow.

Feel free to ask anything, we are a decent bunch and you will get answers.

Best wishes - Brian.

Hello Daughter93 and welcome from a wife whose husband has advanced prostate cancer diagnosed in July 2020 and is still going strong. You have obviously been doing your homework. Whether your father will be offered Triplet Therapy or Doublet therapy is usually determined by the spread of the cancer and whether there are aggressive features but generally high volume prostate cancer is treated with Triplet Therapy and low volume with Doublet Therapy. Within these two protocols there are different variations but to give you an idea I have attached a link.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10028133/

Please come back with any questions and we will try and help.

Thanks Millibob , your story was actually one of the first I read on here with a high PSA which gave me hope but unfortunately my Dad’s has spread.

He is expecting to see Oncology at the end of January/early Feb based on timelines given by the Urology nurse so this would be within the 12 weeks.

Thank you - no doubt there will be more questions and you’ll hear from me again! 

Hi Daughter93 I started my own PCa journey 7 years ago and was put onto a palliative pathway, although now we prefer to call it ‘treatable’.  In those days the triplet therapy wasn’t really in mainstream, so I had chemo and then RT alongside 3 monthly Zoladex.  My PSA stayed low for a number of years and was monitored quarterly.  Gradually it started to increase and treatment restarted.  Oncologist is confident that she has more options left.  Lots of different pathways and many depend on how well you seem to respond to them.  Eventually it is a question of quality vs quantity but what it teaches you is to live life to the full.  Stay fit and keep positive are definitely the main messages for him.  Hope that helps.  Best wishes, David

Thanks Alwayshope glad to hear your husband is still soldiering on and doing well. Yes I have been trying to read up - there was nice summaries of stampede trials which are a bit easier to read than some of the other papers  My family are choosing not to look online (which may not be the worst idea) but knowing what options there are makes me feel like we have at least a tiny bit of control.

When we got the biopsy results, I asked about RT and the nurse suggested this may not be an option with the spots in the ribs as it had to be “low volume”. Is the low/high volume split the same for chemo? Does it go on areas rather than number of mets or is it a combination? 

Thanks for sharing the link, it looks like there are multiple options now which are proving to be effective which is good news. Have you come across any studies which compare chemo (probably doublet therapy) against the use of Enzalutamide or Abiraterone? It looks like the time these drugs work for people can vary hugely so my concern is being put on one of these which doesn’t work for as long as hoped and subsequent chemo not being as effective as it would be at the beginning.

As a wider comment to the forum - it would be good to hear if anyone with a similar diagnosis (bone mets) has been on hormone therapy successfully for a number of years?

Thanks David2017  - after a couple of very tough weeks, “treatable” is definitely a better way of trying to look at it than not curable. Glad to hear your first treatment was successful for a number of years. 

If you don’t mind me asking, how did you find the initial course of chemo? I’m aware that this can be pretty tough going on the body too!

As you say, one thing I have taken from reading some posts on the forum is the number of options available. I am very much hoping my Dad get’s a good oncologist with the same views. He is 67 and healthy so hoping his body can put up a good fight

 Daughter93 I didn’t tolerate the chemo well, but others seem to manage ok. We are all different. You can read my profile by clicking on my name (or the picture of the beach). I use the profile as my diary. Please ask any questions as you go on this journey. David

Hello again.

I think the Enzamet trial gives you the information you are looking for.

https://www.sciencedirect.com/science/article/pii/S1470204523000633#:~:text=Although%20testosterone%20suppression%20plus%20abiraterone,no%20benefit%20in%20those%20with

Targeted Radiotherapy is usually suitable for those with oligometastatic disease (low numbers) but is often left until later on. The hormone therapy will usually reduce the size of the metastases and cancer in the prostate making them an easier target for radiotherapy with less periferal damage. Radiotherapy is often given to the prostate on its own for men with advanced prostate cancer in order to deal with the 'mothership' alongside the ADT and second generation antiandrogens but also some oncologists will suggest whole pelvic radiotherapy which is what my husband had.

Chemotherapy in the hormone sensitive, synchronous situation is normally reserved for multiple sites of metastases.

Please remember that none of us are medically trained and the information we share is only our understanding of what we have learnt along the way.

Just to add on to David David2017  on the question of chemotherapy. My husband had 6 cycles last year and his report said 'The patient tolerated the treatment well'. No, it was not easy but bearable and hubby was 79 at the time. There is no way to tell how the cancer will react to the treatment or how well the patient will tolerate it but the oncologists keep a very close eye on each cycle and can adjust things or give supportive drugs when necessary to reduce side effects.

Thanks Alwayshope . I am aware the cancer has spread to his pelvis and the nurse mentioned some ‘spots’ on his ribs but I don’t know any more detail on the extent (number of mets etc). Definitely one that I will put on the list to ask the oncologist about - hoping they are open to a good discussion on the various options unless they are firmly recommending one based on my Dad’s case.

Thanks for your help. I appreciate it is just sharing what you have learned so far but definitely good to hear from others who have been in a similar position  hopefully with some more insights on how Enz and Abi has worked for others, I will feel a bit better equipped but it’s tough when as you say, the treatment can be different for everyone. A bit of a minefield!