Advanced Diagnosis

Thank you Brian,

The link was really helpful.

 I have a few gaps in my understanding of the process I’m now part of. I suspect that sometimes it’s as you all have stressed on here many times, everyone is different.

thank you 

Chris

Hi Chrispea.

No probs my friend, yes that was the same as me with regards to the Prosap Injections. 

I was also told that chemo was my only next step but as the HT has worked so well hopefully that will be some time off.

You are well within your rights to look elsewhere and I don't blame you for looking towards the private sector.

I do hope that you find something more suited and please let me know how things go???

Yes I am clinging onto the idea that a new treatment/treatments will come along in time for me.

If this isn't the case then it will be for the next generation as I am currently working with "Prostate Cancer UK" to bring around "MUCH NEEDED CHANGE"

Please don't feel sorry as I can feel your pain!!!

You don't sound ungrateful or impatient from where I am sitting.

Prostate Worrier.

Hello Chris (Chrispea) 

There is another link you may find useful and here it is

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

i agree - we all have a different journey but we all strive to get to the same destination.

if you can think of anything else just give me a shout.

Best wishes - Brian.

Hi Chrispea

I know exactly how you are feeling as I had a Prostate cancer diagnosis back in October 2023. At 54 and having this diagnosis was a very big shock just couldn't believe it. I was started on hormone treatment Prostap Injections, Darolutamide tablets and also I had 6 cycles of Docetaxel chemotherapy. I joined the Macmillan forum last year and the support was brilliant. Everyone here are like a big family and support each other. I now myself try to help and support people on here so pleass always remember we are here for you. As for me I get checked every 3 months and so far my PSA levels are down going from 129 in October 2023 to 0.2 June 2024. I am on Prostap every 3 months and taking Darolutamide tablets every day. I am being very positive and this is the best way to be. Take care

Good afternoon Ash.

I am really pleased to hear that you are so positive, especially as I know that you had a bad time with the chemotherapy, and a 0.2 PSA has shown an enormous drop. It is good to support each other during both the good and the bad times so look forward to hearing more from you, particularly as you are on one of the newer treatments with the Triplet Therapy and have a lot to offer those who are starting on the same route.

Well done and keep posting.

Hi Ash, thanks for the kind message of encouragement. 

Following the PSMA scan results, showing bone mets, I have now seen three different oncologists, who have offered me different treatment plans. Today, (25.7) I was given the option of the triplet treatment followed by RT to the prostate and lymph node areas.

I will see this guy again in two weeks to review my thoughts and look at the bloods. He said at this stage there is no real evidence of the triplet showing positive outcomes, if you are young and fit enough he would suggest that individuals should consider it.

So like yourself and a few other men on here who have decided on the triplet route, I was interested to hear everyone’s journey 

I have been reading with considerable interest all the blogs relating to my particular diagnosis and how you all are coping. Plus the amazing source of support and advice from Alwayshope and many others.

We were planning a holiday before decision time but today’s Oncology meeting he suggested sooner rather than later.

I will keep posting and look forward to reading about everyone’s personal journeys they are so inspiring and help so much.

Thanks again.

Chris.

Hi Chris

I think if you are offered the triplet treatment followed by RT then if you feel you can tolerate it then that's a good option to try. I took the triplet treatment and I will take anything else I am offered to have the best chance of control of this cancer. New drugs will come as alot of trials are being done so I am being hopeful the oncologist will try other treatments if there is any change with me in the future. At the moment my PSA levels are down which is good, hope they stay down. I did say to my doctor I am open to trials if any come up in the future. You will get the typical side affects of chemotherapy which I had and took pain relief when I needed it. I hope all goes well for you.

Hey Chris, my dad has a very similar diagnosis to you. Starting triplet therapy tomorrow. 
He is 66, fit and healthy so we felt like it was the best option at the moment for him. 
xx

Good evening Chris.

If you are thinking of having Triplet Therapy then there is some evidence that it should be started within 12 weeks of having the HT injection/implant. From the attached review it also suggests that the chemotherapy should be started at the same time as the second generation antiandrogens, or failing that the chemotherapy should be started before the tablets and not the other way round. This review dated April 2024 states it is the first real world review which indicates the improved outcome in terms of time to biochemical recurrence.

https://www.clinical-genitourinary-cancer.com/article/S1558-7673(24)00002-8/fulltext

The interesting comment I also got out of it is the possibility of coming off the second generation antiandrogen if the patient demonstrates a good response to the treatment.

Cat I also point you in the direction of this video on Chemotherapy which can give you more questions to possibly ask. Interestingly, when my husband had his chemotherapy last year the treatment and supportive drugs followed the same protocol as the one indicated but I understand that it is not universal in the UK.

https://youtu.be/kb2k8g1Lwns?si=yYL_4rnlSugy2OYA

I have also found this video by Dr Scholz which talks more specifically about triplet therapy and when it should be used. The jury still seems to be out on small metastases which are only picked up by PSMA PET CT scans and not by conventional methods, but I would say that the video is over a year old.

https://youtu.be/YYLWZXtkM7o?si=4PpbM49jhNgYPpkR