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Terrified of what the future holds

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User
Posted 03 Oct 2022 at 16:11

I have been diagnosed advance prostate cancer on the 28th September. My PSA is 174 and my Gleeson score is 9  cancer in the pelvic lymph nodes and one spot on my spine . All my organs are clear . I have started on prostap injections and at the end of this month I will be on Emzalutamide as well. Their was talk of a trial at the Marsden Chelsea. My question is has anyone here had exsperience of clinical trials . The trail sounds quite promising . 

User
Posted 03 Oct 2022 at 17:43

Hi Rob

I was also diagnosed with apc about 6 months ago with a starting psa of 2100..gleason 4 +4  N1 M1 I am now on my 9th week of Enzalutamide and coming upto 2nd 3 monthly prostap injection my psa is now 0.508 unfortunately I cannot comment on the trial you are asking about but as far as the enza/prostap route goes it's looking good for me at mo and hopefully for you too.

Regards Phil 

User
Posted 03 Oct 2022 at 18:12

Hi Robert, sorry to hear about the diagnosis. At 70 you were more likely to have cancer than not have it, but for it to be advanced is unfortunate.

With hormone treatment and enzulutamide you have every chance of living a number of years possibly over a decade.

I don't know if we have any contributors on clinical trials at the moment. Quite often trials are looking at small differences in treatment options, for example with RT halving the number of treatments but using twice the dose. After a few years they find whether people lived longer or shorter as a result. 

A trial will always try and give you at least as good a treatment as what is currently available, but you do need to accept you may live less or have worse side effects as a result of the trial.

I am all for trials we wouldn't be where we are today without them. If you find yourself in the last chance saloon (you aren't there yet) then any trial is a good idea. If you aren't in the last chance saloon, then view a trial as more likely to benefit future generations than yourself, if your feeling lucky go for it.

Dave

User
Posted 19 Oct 2022 at 17:13

Thank you for your message of support Mathew. I am off to the Marsden Chelsea next week . I am on postal injections and I have my second one next week, and as far as I know I will be put on Emzalutamide next week as well. It's still hard coming to turns with especially as I feel so well . I hope everything is going well for you . Take care. 

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User
Posted 03 Oct 2022 at 17:43

Hi Rob

I was also diagnosed with apc about 6 months ago with a starting psa of 2100..gleason 4 +4  N1 M1 I am now on my 9th week of Enzalutamide and coming upto 2nd 3 monthly prostap injection my psa is now 0.508 unfortunately I cannot comment on the trial you are asking about but as far as the enza/prostap route goes it's looking good for me at mo and hopefully for you too.

Regards Phil 

User
Posted 03 Oct 2022 at 17:50

Thanks for your reply Phil . I guess I was exspecting a lot more in regards to treatment . I am very happy Emzalutamide is working for you, I hope it does the same for me . The waiting between the appointments is very hard to deal with . Thanks again for your reply we will stay in touch . 

User
Posted 03 Oct 2022 at 18:12

Hi Robert, sorry to hear about the diagnosis. At 70 you were more likely to have cancer than not have it, but for it to be advanced is unfortunate.

With hormone treatment and enzulutamide you have every chance of living a number of years possibly over a decade.

I don't know if we have any contributors on clinical trials at the moment. Quite often trials are looking at small differences in treatment options, for example with RT halving the number of treatments but using twice the dose. After a few years they find whether people lived longer or shorter as a result. 

A trial will always try and give you at least as good a treatment as what is currently available, but you do need to accept you may live less or have worse side effects as a result of the trial.

I am all for trials we wouldn't be where we are today without them. If you find yourself in the last chance saloon (you aren't there yet) then any trial is a good idea. If you aren't in the last chance saloon, then view a trial as more likely to benefit future generations than yourself, if your feeling lucky go for it.

Dave

User
Posted 03 Oct 2022 at 18:31

Thanks for your reply Dave ,that is a very balanced way of looking at it. I will think carefully before committing to a trail . At the moment I am feeling very well and have no symptoms or pain . I have read that 3 monthly prostap injections and Emzalutamide is the gold standard for where I am now. The clinical oncologist spoke very enthusiastically about the trail . I will let you know what I decide . We are still struggling with the diagnosis . 

User
Posted 03 Oct 2022 at 20:30

Hi Rob

I know exactly where your coming from emotionally but I can assure you it will get easier,don't get me wrong you will have bad moments as I still do,but your early in your journey and you have many more years to come.

Stay strong 💪 

User
Posted 03 Oct 2022 at 20:52

Hi Phil I had bowel cancer 10 years ago which was successfully treated. This is like winning the lottery twice in reverse. This seems so much more complicated . I will put my trust in the doctors ,and do what ever I have to do to survive, and hope to be around for a while yet. Its so hard writing those words . At the moment I am having trouble sleeping . I will try to take your excellent advice thank you  Take care 

User
Posted 18 Oct 2022 at 23:48

Hi Robert and everyone,

I wanted to echo the empathetic and knowledgeable advice I feel you’ve been given. I was diagnosed at age 52 in April 22 with aPC T4 N0 M1b, PSA 61, stage 4 Gleason 9…no symptoms. Just completed chemotherapy 7 weeks ago. Feeling good physically. 

I immediately started with Prostrap 3 injections that brought my PSA in 12 weeks down to 0.6 but in recent weeks it’s risen to 1.3 last week and this week 1.5. 

I may need to join you chaps with Enzalutamide, Abiraterone or Apalutamide if the PSA rise continues. Recent CT scan results show no spread from the original x2 mets in T5 vertebrae and pubic bone.

Try and hold it together. You’re stronger than you realise and you’re in safe hands. Your emotions and thinking will stabilise and your purposeful life will resume in good time. 

All the best,

Matthew

Edited by member 19 Oct 2022 at 00:21  | Reason: Not specified

User
Posted 19 Oct 2022 at 08:19
Re the trial one benefit not mentioned here is that you get more contact with medical professionals and possibly easier access to state of the art diagnostics. If you see this as a benefit a trial may help even if you are on the placebo arm..
User
Posted 19 Oct 2022 at 13:18

I'm 5 weeks localised cancer post surgery and on a recovery trial with Guy's Hospital London. The trial means I can either have a specific treatment or a placebo. So I still have the regular treatment and follow up by the Hospital where I had surgery. One benefit is meeting a Doctor every week for 8 weeks after surgery, plus a specific (or not) treatment. It means that you can talk face to face with a Specialist even if you are in the placebo group. I find it can also support you mentally.

The Royal Marsden London is a Centre of Excellence for research and treatment of Prostate Cancer so it is worth checking what trial they offer you.

User
Posted 19 Oct 2022 at 17:13

Thank you for your message of support Mathew. I am off to the Marsden Chelsea next week . I am on postal injections and I have my second one next week, and as far as I know I will be put on Emzalutamide next week as well. It's still hard coming to turns with especially as I feel so well . I hope everything is going well for you . Take care. 

User
Posted 19 Oct 2022 at 17:17
Do you mean “Prostap” injections, Robert? Spelling “correction” at work, I suspect.

Chris

User
Posted 19 Oct 2022 at 19:38

Yes thanks Chris my computer did that all on its own . Prostap injections every 3 months and Emzalutamide ,which I will be starting next week . 

User
Posted 19 Oct 2022 at 19:43

Thanks for your reply Eric . I live in Wimbledon so the Marsden in Chelsea and in Sutton, fortunately is not that far away . I will keep you posted . I am still struggling with my diagnosis 

User
Posted 19 Oct 2022 at 19:44

Thanks for your reply, that's what I am hoping for . 

 
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