I was diagnosed with prostate cancer in 2014. Since then I have had radiotherapy and was on a stampede drug trial. The trial ended 2 years ago and I was then put on chemo but that had to be stopped after three weeks as it was having a bad effect on my skin. I was fortunate enough to move on to lu-177 PSMA treatment but again that have to be stopped after four treatments as it was having an adverse effect on my kidneys. Now today I've found out that my PSA has risen from three to nine in just one month and, frankly, I'm scared. On the one hand it looks so the Cancer has come back with avengeance but my options for treatment seem to be limited. I really don't know what to do.
Hello Tim (TimR123)
A warm welcome to the Macmillan Online Prostate Community although I am so sorry to find you here under those circumstances.
I assume that the PSA rises have been taken into account by your team and although you have been through the mill with various treatments - all is not lost.
* Have you had any scans to ascertain where the cancer is - I am assuming you still have a Prostate and haven't had surgery?
* My initial reaction to your post was Hormone Therapy as soon as possible whilst the team find out what's been going on.
Be assured that things have come on in leaps and bounds since 2014 and there are plenty of new tools in the tool box.
I think it would help us here if you could add some details to your profile - PSA history, TNM staging and Gleason Score together with a note of all the treatments you have had (exact chemotherapy drugs used etc) To do this go to your home page and click on the chair (top right) - then "Profile and then Edit". Once you have written something don't forget to press "Save". (You can read my profile by clicking on my avatar).
Best wishes - Brian.
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Hello TimR123
Another warm welcome from a wife whose husband is also on the rollercoaster of recurrence since he was diagnosed in 2020. He has also had EBRT to the whole of the pelvic area, 1st and 2nd generation antiandrogens, 6 cycles of Docetaxel chemotherapy, and recently 5 sessions of targeted SBRT to distant mets and the adrenal glands. He initially reacted badly to the chemotherapy but was given supportive medication along with dose reduction which allowed him to complete the treatment. As Brian has said, things have come on in leaps and bounds since 2014, not only in what is available but in ideas for how to treat treat it with the different sequencing of therapies. Our oncologists strategy is to do a PSMA PET CT scan at each recurrence to find out exactly where the cancer is lurking and then devise a plan, but always looking at 2 steps ahead as well. We are waiting for the results of genetic screening to determine what treatments might be suitable for the future such as Olaparib and PARP inhibitors and we have been advised that Lutetium 177 may be his next treatment, plus immunotherapy has been mentioned. I have also been looking at Bipolar Androgen Therapy BAT to try and resensitise the cancer to hormone therapy (this is still at the trial stage). There is also evidence that you can sequence 2nd generation antiandrogens but it depends on which ones you have already had although it also seems possible to receive the same one that you initially had if you have had a break.
I have attached a link to my go to video for advanced prostate cancer which will give you an idea of the latest thinking. It is about an hour long but stick with it. I have also attached a link to areas of trials and research.
https://youtu.be/-RVVq0uDAEE?si=AaZ-BqpV63LZDQEs
Please come back with any questions and we will try and help. I am a great believer that knowledge is power and allows us to have an informed discussion with the oncologists. We have already been through plans A B C and D and are now looking at E F and G provided my husband can cope with them (he is 81 now). It is going to be balancing quality of life against the rigours of certain treatments.
Hi
Many thanks for your reply. Even though I have my wonderful partner I feel so alone.
I have now filled in my profile so you can see I was on ADT drugs Abiraterone and Enzalutamide (Xanti). I did ask my consultant a while back if there was any merit in trying them again but I don't see why not to try. Has anyone had any experience in restarting these drugs?
Hi Tim.
I have not heard of anyone with experience in restarting Abiraterone or Enzalutamide in the UK but have read that this is being tried in different countries. Like anything, you don't know until you ask. We are seeing our oncologist at the end of the week and it is a question I shall be asking (but we live in Greece). I will also want to know whether Darolutamide or Apalutamide might be a possibility as my husband has also been on Enzalutamide but had to stop due to recurrence.
Rechallenge with ARPIs is discouraged in ESMO and European Association of Urology (EAU) guidelines due to the potential for cross-resistance (101, 111, 112), but in the local guidelines for Germany, Italy, and Japan it is a suggested treatment option (83). Moreover, local reimbursement criteria may preclude rechallenge with a different ARPI – this is the case in Canada, with exceptions in the case of intolerance with the first ARPI or (in some provinces) if chemotherapy was used in between (“sandwich therapy”) (80, 113).
Again, thanks for the reply. I actually moved my treatment to France where I now live because I wanted to access the possibility of lu177 treatment. I'm also seeing the consultant overseeing this treatment but my normal oncologist seems to have disappeared off the face of the earth so I feel a bit left high and dry.
Hello Tim (TimR123 )
I have just read through your profile and the cracking information (as always thank you) from Alwayshope .
As things stands - i know different countries have different thinking - i would be at least for trying the 2nd generation hormone Therapies to see how well they work and you have always got Chemotherapy again too.
As with everyone here we aren't medically qualified but from a layman's point of view that's what I would try. There may well be reasons why you can't go down these routes and I would be asking the question "why not".
Best wishes - Brian.
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One thing I forgot to add is that the genetic testing my husband is having on his initial biopsy samples covers 32 different genes and recombinants plus, due to the heterogeneity of the cancer it is being recommended that a blood gene assay is carried out frequently to see how the cancer is reacting to the different treatments.
Hi TimR123
Sorry to see that the treatment you’re on now seems to not have the effect of having your cancer under remission.
Just a question, am I missing something or have you never had any standard hormone therapy; agonists or antagonists as part of your treatment?
Abiraterone can of course help out in stopping the production of testosterone and some studies have shown that it does a very good job in just that, pushing down T-levels to castration levels. But from my knowledge you normally have one of the standard ADT and then you add for example Abiraterone (or any of the other 2nd gen)
Have you had discussions on perhaps using HDR Brachy in prostate or for that matter SBRT to distant mets?
Anyway, I wanted to ask if I’m missing something in your treatment regarding the use of ADT. Hope that your MO / medical team find something in the PC toolbox to put your PC into remission
Best wishes - Ulf
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