Treatment Options Following Recurrence

Hi Excavator 

Sorry to hear about the recurrence.

I have not a lot of knowledge on HT and chemo so will leave to the others but just to say could be worth looking at immunotherapy or parp inhibitors or a mixture of the two , supposed to be good for metastatic cancer.

Either a clinical trial or possibly some NHS sites may do them as have been around for a few years now.

Def could be worth reading up on them.

Hope things work out and keep us posted 

Best wishes 

Steve 

Thanks Steve, I'll have a look into that. 

Derek.

Ok Derek, do let us know if u go down that route,have read about it over the past few years and it does look possibly an interesting alternative and all of us never know if the PC is gonna come back

Good luck

Steve 

Hello Derek (excavator) 

You know me of old and I have followed your journey with interest. (interested because I am a T3aN0M0 Initial PSA of 182 and a Gleason 9). I am on a "Curative Pathway" but I know this bastard can re-appear,

I an 29 months into a 3 year HT/RT journey and my lowest PSA is 0.33 - nadir reading due this August so yes I am interested in your personal journey - I hope to gosh my HT/RT will have worked but I have that feeling - you know that nagging feeling - yes I trust my team and yes I am a happy bunny - "a lucky boy" even.

Right to you - as you know I have been around the community for a couple of years - a Community Champion for 9 months - I read every post on the Prostate Forum - and I work on other forums too

Personal opinion at your age - option 3 - hit it hard - hit it fast and hit it now.

Sorry if you think it's a bit harsh - but that's my personal opinion - but I think you are right.

Best wishes - Brian.

A difficult decision for anyone to make. The mechanism of what causes the recurrence is still not fully understood, particularly once the second generation antiandrogens like Darolutamide and Enzalutamide are added in to the mix. There is also work going on to see whether they can be used sequentially so what may be recommended now could be superceded following trial results. One school of thought is that delaying the use of second generation antiandrogens with Docetaxel can prolong the time before recurrence whereas other trials show that the triplet approach gives better cancer control. At present the UK approach for recurrence seems to work through the Chemotherapy with ADT and a second generation antiandrogen but your revised Gleason with several groin lymph mets means that the cancer has entered the lymph superhighway and may have seeded to other parts of the body. The other treatments are usually left for a subsequent recurrence and again are offered sequentially eg. Lutetium 177, Immunotherapy, PARP inhibitors, Radium 223 ( bone mets), further Docetaxel or Cabazitaxel. To open up your options I would ask for a gene test (which can take several months) so that you are ahead of the game for the future. You have been told that SABR is not an option at the moment - I believe the UK criteria is a maximum of 5. The Chemotherapy may deal with these making SBRT a possibility in the future. My husband has just had 10 distant lymph nodes, plus 2 adrenal glands zapped in this way and we are waiting for MRI scans next month to see how successful it was - we do not live in the UK. Hubby has already been through EBRT, Bicalutamide, Enzalutamide, Chemotherapy and SBRT but his initial diagnosis was T4. He is now 80 and still eligible health wise for future treatments despite having CKD and a history of TIA's so there aren't many conditions which may preclude treatment in the future. Hubby was dreading chemotherapy but actually said it was not as bad as expected.

Thank you Alwayshope for your encouraging and comprehensive reply, including your husband's experiences which provide reassurance, these are very helpful. I'll follow up when I see my consultant, he has mentioned various trials including involving the triplet approach and use Darolutamide with Docetaxel and tells me this can provide good results for cases such as mine.

I'll also follow up your suggestion of a gene test for the future.

10 years ago when I had lung cancer I went for adjuvant chemotherapy which was unpleasant to say the least. This was said to provide only about 5 extra percentage points on long term survival (sadly not high for that type of cancer) but I grasped the opportunity to take everything I could have to improve my chances. I'll never know if it was really necessary but, 10 years on, it still looks like a good decision.

My attitude hasn't changed, so I will probably go for everything I can get this time too.

Many thanks again,

Derek.

Thanks Brian, that's very useful.

It's not harsh at all, I've gone for the maximum options before so it's not surprising that I'm leaning heavily that way again. I have a few things to ask at my next appointment but think I've already more or less decided to go for it.

I know exactly what that nagging doubt feels like and, like you, I feel I've been a lucky boy so far and hopefully that will continue for us all.

I'll let you all know the final decision after my appointment.

Thanks again,

Derek.

OK, I've decided on the triple treatment, saw consultant yesterday and started taking the bicalutamide this morning. First chemo will be on 3rd July.

I've done chemo before - cisplatin and vinorelbine in 2014 for a diferent cancer - which were quite difficult so keeping everything crossed for a reasonably incident free journey through this one.

Thanks all for input.

Good Luck with the Triplet Therapy. Keep us posted.

Best Wishes - Brian.