Early chemotherapy or not?

User

Posted 27 Mar 2022 at 15:28

All the reading I've done suggests that early chemo plus HT is the best course for treatment for Advanced prostate cancer. Especially, having chemo whilst you're still relatively fit and well. Obviously, there are a lot of side effects, but I assume most of these go after the 6 courses of treatment.

I have presumed this treatment gives the best prognosis for staying alive and hopefully with a good quality of life after chemo. However, having read many of the forum posts, it seems that many men are delaying CT until after HT has started to fail and some even waiting until secondary HT fails!

What am I missing? Will chemo not provide sufficient length of good life to outweigh the side effects? How are you all weighing this all up and what have you discovered from your treatment decisions?

Thanks for any opinions.

User

Posted 28 Mar 2022 at 19:52

Hi Forestjohn, I had the upfront 6 chemo with HT in 2019. Consultant also offered Enza if I wanted to pay for it, I thought I would keep it in reserve though. Found the chemo tolerable with no too much in the way of side effects.

Good luck to everyone coping with the insidious big C

User

Posted 31 Mar 2022 at 15:19

I had chemo and HT in 2018 when diagnosed with stage 4 PCa. Continued with HT Prostap every 3 months, another jab yesterday, they don't half come round quickly.

Still get anxious at blood test time and PSA result, next meeting with my Onco is in May.

User

Posted 04 Apr 2022 at 09:20

This is based on my own studies but it came down to you can have your ADT + Docetaxal or Enzalutamide if you wish not both

You can transfer over from Enzalutamide to Aberaterone Actate if you don’t tolerate the Enzalutamide well.
Most recent studies recommend all 3 (the triplet) as in the Peace 1 trials

In the absence of all 3 then my findings were that if you were high volume I would go for Docetaxal and if low volume Enzalutamide

They were my findings as I say

Edited by member 04 Apr 2022 at 09:46 | Reason: Error

User

Posted 17 Apr 2022 at 17:35

Hi guys , just a note to you both which I hope is of help. When I was offered early Enza I literally had to make my mind up in a week in order for the funding to be released ( it’s like £25k per year ). If you don’t take the early Enza within a certain timespan then it’s considered inefficient as ‘ early ‘. I turned it down re comparing my QOL with a friend who accepted it one month before me. He doesn’t regret it re the hope but it’s wiped him out.

I still have the option to use it anytime in the future though.

Best wishes to you both in your journeys and decisions 👍

User

Posted 12 May 2022 at 22:19

Matt, I found it helpful to keep a note of what was hitting me for each day of the cycle? Know what to expect and when for the following cycles 😀

Good luck to everyone coping with the insidious big C

User

Posted 14 May 2022 at 05:45

I think you have to research and ask directly if you want to join a clinical trial and go above standard of care.

when standard of care offers no curative option plus side effects it’s worth seeing what’s on offer in clinical trial as massive advances are being made in each that don’t always get to become SOC.

something like this;

https://clinicaltrials.gov/ct2/show/NCT04839991

User

Posted 27 Mar 2022 at 19:19

Covid is confusing things. For years, chemo has only been used in the end stages as chemo does not kill prostate cancer. About 5 years ago, a large scale trial showed that early chemo can make the HT more effective for longer so it was introduced for men with advanced PCa. More trials showed that enzalutimide is even more effective but NICE refused to approve it for early use due to cost.

Then covid came along and everything changed again - men on chemo are much more vulnerable to infection and it was thought to be too risky to give chemo in a pandemic so NICE changed their guidance temporarily to allow men with advanced PCa to have enzalutimide or apalutimide instead. This is likely to be a temporary concession so I would push for enza or apa now if you can get it, and chemo now if enza isn't available to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Mar 2022 at 23:44

I saw a comment on YouTube about a study in 2021 that said early chemo (Taxatere) is better although I can't find the study.

My search just came up with a comment on this website that it might be 15 months better from a study 6 years ago. Here's a link.

https://prostatecanceruk.org/about-us/projects-and-policies/earlier-docetaxel

The YouTube channel is 'Prostate Cancer Research Institute' in America. There are dozens of videos mainly by a Dr Mark Scholz.

If that's any help. Regards Peter

User

Posted 28 Mar 2022 at 22:17

Hi Matthew2022

No decision yet as they want to wait until 2 months from start of HT. I've a meeting in 4 weeks time, so I'm doing my research to be pre-armed.

Only had my biopsy today so still early stage. Went for general anaesthetic - great decision! Didn't know what indignities they put me through! Plus, no extra pain killers since procedure - perhaps it's good to be relaxed during it!

Edited by member 28 Mar 2022 at 23:20 | Reason: Not specified

User

Posted 29 Mar 2022 at 14:52

Hi Matthew2022

Braver man than me with the biopsy!!

I haven't been offered anything for the prostate gland itself. I think their attitude is that it's already escaped so just treat the whole body!

I must admit I agree a little with you regarding doing something to the prostate, otherwise isn't it just going to be shedding yet more cancerous cells around the body? This doesn't appear to be the concern however! 🤔

User

Posted 29 Mar 2022 at 15:30

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

My Consultant said something about my metastasis was limited to two, possibly three bones, with no soft tissue spread - calling it "low burden" which may be part of the reason radiotherapy was recommended. I'll find out either way tomorrow when I'm with the oncologist.

Hope you and yours are hanging in there.

Matthew

User

Posted 29 Mar 2022 at 15:45

Ouch! I just woke up from a pleasant dream, far more civilized. You're all tougher up north obviously! 😉
I've got more sites in just pelvic area! Having scan in chest area on Thursday to see where else the dreaded space invader has got!

I look forward to hearing what they tell you regarding the prostate and radiotherapy tomorrow to see how Hull NHS varies from Gloucestershire.

I'm not thinking too far forward to maintain sanity at the moment, but wife is very upset. Hope you're all attempting to stay vaguely positive!

Edited by member 29 Mar 2022 at 15:47 | Reason: Not specified

User

Posted 29 Mar 2022 at 18:01

Originally Posted by: Online Community Member

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

Hope you and yours are hanging in there.

Matthew

RP isn't offered to men with advanced PCa because there is absolutely no point inflicting the certain or potential side effects on a man with no hope of cure.

Radical RT in aPCa cases is very new and not available in all parts of the country. Your onco may be offering it but generally, a man would need to be accepted onto a trial to get this.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Mar 2022 at 18:03

Originally Posted by: Online Community Member

Hi Matthew2022

Braver man than me with the biopsy!!

I haven't been offered anything for the prostate gland itself. I think their attitude is that it's already escaped so just treat the whole body!

I must admit I agree a little with you regarding doing something to the prostate, otherwise isn't it just going to be shedding yet more cancerous cells around the body? This doesn't appear to be the concern however! 🤔

It doesn't work like that. Once PCa has moved out of the prostate it will continue to develop and invade regardless of whether the original cells in the prostate are removed. The cancer is fed by testosterone, not by the prostate.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Mar 2022 at 00:56

A couple of recent clinical trials suggest a Triplet of treatments are most effective for newly diagnosed advanced prostate cancer

the PEACE1 trial:

prostatecancer.news/2021/05.

Thw ARASENS trial:

businesswire.com/news/home/...

‘triplet therapy" =

(1) a second generation hormonal
(2) ADT
(3) Chemo

interesting I thought

User

Posted 30 Mar 2022 at 01:10

I believe it was a sub group of the STAMPEDE trial that shows it was worth irradiating the prostate of some men with APC:

‘Prespecified subgroup analysis showed that radiotherapy to the prostate improved overall survival by just over one-third (32%) in the 819 men with a low burden of metastatic disease (HR=0.68, 95% CI 0.52, 0.90).’

Originally Posted by: Online Community Member

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

Hope you and yours are hanging in there.

Matthew

User

Posted 30 Mar 2022 at 01:36

My OH receives monthly degralix injections.. This targets the prostate specifically to shrink and reduce or stop the production of testesterone. My simple view is the tumour in the prostate is the 'the mother ship' and with advanced pca it has already evaded and sadly sent carbon copies (metastases) elsewhere in the body. Then it's trying to control and suppress those blighters for as long as possible. X

User

Posted 31 Mar 2022 at 13:15

Hi John,

He suggested the Marsden and I said, following my research, I would have said the same. We discussed other options but settled on it and today I was told the referral had already been sent. Very pleased with that outcome.

Your attitude is admirable I have to say, a great example. That said, I expect there will be an emotional reckoning for us both from time to time. It’s a grieving process for everyone affected. My diagnosis is nearly 4 weeks old, the first period was numbing and now I’m having to adjust to my new normal.

Like everyone else in this terrible situation, I’m hoping and praying for more quality time - not just for me, but for you and everyone.

You never know, we might be around long enough for a breakthrough treatment that turns this incurable disease into a chronic condition similar to diabetes. We can live in hope!

User

Posted 31 Mar 2022 at 16:06

Yours doing really well Jasper, keep it up!

I'm following your journey.

Cheers

User

Posted 31 Mar 2022 at 17:28

Sounds amazing Matthew. Good result ! Three months after my first injection ( Decapeptyl ) , my psa had fallen dramatically from 990 to 14. Further reductions have continued but not as dramatic. After 15 months I’m now 1.3. Long may it continue I hope

User

Posted 02 Apr 2022 at 15:43

That's an excellent response Matthew 👌

User

Posted 04 Apr 2022 at 19:31

Originally Posted by: Online Community Member

I’m confused isn’t Forestjohn a de novo castrate sensitive man with decision to make of Docetaxal or Enzalutamide ?

Apalutamide is not available at the outset or it certainly wasn’t offered to me.

Am I on the wrong thread ?

If it is Then I blame the Enzalutamide

I don't think ForestJohn has been offered a specific route yet or, if he has, he hasn't posted that the onco asked him to choose chemo or enza - his initial posts were around his assumption based on his research.

I am sorry that you weren't offered apalutimide but it has been approved by NICE and is available to hormone naive men instead of chemo. As with enzalutimide, this is (at the moment) a temporary concession for Covid, to reduce the number of people having chemo. At some point, they will no doubt withdraw permission due to cost .... once (if ever) we have all learnt to live with the pandemic that still seems to be swamping our NHS. Abiraterone has not been approved as a replacement for chemo in hormone naive men.

just to add - confirm my dad who was (initially) diagnosed with advanced PCA, was offered apalutimide upfront. This was just a few weeks back.

User

Posted 05 Apr 2022 at 17:32

Just to reassure you a little bit, it wouldn't be usual to do a PSA test so soon after you have started HT. The chance of you having a hormone resistant cancer is minimal as it would usually have been picked up in your biopsy.

The rest of your story is very disappointing and frustrating but there is no reason to think that chemo will stop your hip surgery from taking place. Infection is a risk with chemo whatever you do - if you wanted to avoid the risk of infection, you would stay home for the next 7 months and see no-one.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2022 at 18:01

I was literally going to ask how things were John. This is bound to be very stressful especially if you don’t feel you’re being supported fully.

Lyn and others here have helped me try to contain my natural fears too in the last few weeks (as you know we’re in a very similar flight path). I totally understand why you’re anxious. This is literally life and death for people like us isn’t it.

If it’s helpful private message me and I can arrange to call you. I’ve done a lot of digging so I am more able to push armed with information. There appears to be a different treatment pathway recommended by NICE for low and high burden metastasis and this may be central to your consultant’s approach.

I hope we both quickly get a second opinion from The Royal Marsden as this will either confirm or challenge the clinical recommendations. This is crucial to settling any worries.

Our stage 4 diagnosis is incredibly tough but remember there is so much compassion, knowledge and support from members of this forum. I am very grateful to everyone.

As we are both in the same boat John, we can help each other make the best out of a bad situation.

User

Posted 17 Apr 2022 at 18:20

I too wondered about surgical castration instead of HT. Not sure what the change in side effects would be re heart issues and bone density etc. At the end of the day my scrotum is non-existent after 15 months on HT so I doubt I’d miss them lol.

I think the issue would be a non-important surgery where there is a huge backlog at present. I’m sure my vet could do it tbh :-)

User

Posted 23 Apr 2022 at 13:27

It’s good to hear you’re not needing hip surgery and you can continue to do what you love with the kids in the great outdoors. I need to also get back into shape to counter the cumulative effects of HT and immediate potential effects of chemotherapy (should I go that route).

Like you John I’m not sure what to do exactly and waiting for second opinions before deciding. It’s not straight forward is it and the window for first line chemo treatment is closing rapidly. I need to take a decision in the next week to ten days. I can hopefully handle the toxicity if it gives me more quality time.

I had another CT scan on Sunday so it’ll be interesting to see if the mets have been affected by the HT.

Hope your bone scan results come back completely clear and you’re told it’s all been a big mistake :)

User

Posted 07 May 2022 at 22:12

Hi Matthew...thank you for your prompt reply. I have read your story and it appears quite similiar to my husband's. I really appreciate your kind words and know that we will get the strength to continue this journey. Its just so new and stressful for us all. Likewise I wish you the very best outcome with your own treatments and will follow your future threads on the forum. Many thanks

Regards Ann

User

Posted 10 May 2022 at 14:48

Great news Matthew. And great spirit 👍

User

Posted 11 May 2022 at 17:17

Sounds very positive Matthew, hope things continue to go well.

Ido4

User

Posted 11 May 2022 at 20:32

Hi Matthew...Great to hear you are feeling good post day 2 of CT. Will be following your updates.

Best wishes Ann

User

Posted 12 May 2022 at 17:30

Thanks Matthew. My PSA was still below 0.1 in March which is great. My next test and oncology review are at the end of June. Stay well.

Ido4

User

Posted 14 May 2022 at 05:51

Just worth noting some staff movement seems to have upgraded UCLH prostate cancer clinical trial offering recently

From their website:

If you would like any more information on clinical trials and your opportunity to participate please speak to your doctor or email the research team at uclh.research@nhs.net or call 020 3447 9320.

User

Posted 14 May 2022 at 06:03

This one seems particularly interesting as you get to know up front at no cost if you have a genetic cause

Magnitude clinical trial

https://clinicaltrials.gov/ct2/show/NCT03748641

Just a thought

User

Posted 14 May 2022 at 09:04

You’re absolutely right John. Every guy will respond differently and there’s no single route. We do our best and take our chances I agree. We will do well to try and live with no regrets. It’s a massive shift emotionally and mentally for not just us as men but everyone around us.

Really wishing you the best mate. You are doing a great job!

Show Most Thanked Posts

User

Posted 27 Mar 2022 at 19:19

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Mar 2022 at 19:41

I started HT injections in Jan 21. I was offered early Enza with it. I may be strange but I’m 54 and have insisted on maintaining a good QOL , so I refused it and am saving it until later as I will with Chemo. At that time I read that the 5 yr survival rate with early Enza was 85% , but without early Enza was 77% , so I decided there wasn’t a lot in it. I’m in close contact with someone that started HT at the same time as myself but included Enza upfront. I think they would admit I’m in a way better place physically and mentally but obviously each case is individual. It’s a tough call but I feel now I’m on an incurable path that I’d rather have better overall health whilst I can than desperately trying to extend my life. Good luck ok 👍

User

Posted 27 Mar 2022 at 23:44

I saw a comment on YouTube about a study in 2021 that said early chemo (Taxatere) is better although I can't find the study.

My search just came up with a comment on this website that it might be 15 months better from a study 6 years ago. Here's a link.

https://prostatecanceruk.org/about-us/projects-and-policies/earlier-docetaxel

The YouTube channel is 'Prostate Cancer Research Institute' in America. There are dozens of videos mainly by a Dr Mark Scholz.

If that's any help. Regards Peter

User

Posted 28 Mar 2022 at 19:01

Hi Forestjohn,

Did you arrive at a decision regarding your treatment selection you’d like to share?

I'm meeting with my Oncologist for the first time on Wednesday to discuss my options with aPC.

Hope you and yours are well.

Matthew

User

Posted 28 Mar 2022 at 19:52

Good luck to everyone coping with the insidious big C

User

Posted 28 Mar 2022 at 22:12

Hi Steve559

Great to hear you've had over 2 years fine since chemo. I was getting worried, as lots of forum entries talked about problems reoccurring after 6 months. Very reassuring - I wonder what the general experience of others actually is?

I suppose everyone reacts to these horrible drugs differently

Edited by member 28 Mar 2022 at 23:33 | Reason: Correction

User

Posted 28 Mar 2022 at 22:17

Hi Matthew2022

No decision yet as they want to wait until 2 months from start of HT. I've a meeting in 4 weeks time, so I'm doing my research to be pre-armed.

Edited by member 28 Mar 2022 at 23:20 | Reason: Not specified

User

Posted 29 Mar 2022 at 09:56

My biopsies were collected under local anesthetic and the procedure wasn't too bad, barring the indignifed birthing chair posture. The staff were brilliant in every way.

Understanding the histology results and your Gleason score will be an important next step for you.

I'm a few weeks ahead of you (see my bio) and will be taking treatment decisions tomorrow when I meet my Oncologist for the first time. I've done a lot of reading and thinking but still unsure which way I'll be guided. I expect it'll be upfront Chemotherapy (Docatoxil), radiotherapy to my gland and see how my HT controls my PSA. They'll probably keep other treatments like Abiraterone and Enzalutamide for later down the track. If I'm offered early Enz I'll definitely consider it. I'd personally like to have the option of a radical prostatectomy even at this stage (the US get the option but in the Uk we don't it appears?)

I'll update this thread tomorrow as it might help Forestjohn and others.

User

Posted 29 Mar 2022 at 14:52

Hi Matthew2022

Braver man than me with the biopsy!!

I haven't been offered anything for the prostate gland itself. I think their attitude is that it's already escaped so just treat the whole body!

User

Posted 29 Mar 2022 at 15:30

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

Hope you and yours are hanging in there.

Matthew

User

Posted 29 Mar 2022 at 15:45

I look forward to hearing what they tell you regarding the prostate and radiotherapy tomorrow to see how Hull NHS varies from Gloucestershire.

I'm not thinking too far forward to maintain sanity at the moment, but wife is very upset. Hope you're all attempting to stay vaguely positive!

Edited by member 29 Mar 2022 at 15:47 | Reason: Not specified

User

Posted 29 Mar 2022 at 18:01

Originally Posted by: Online Community Member

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

Hope you and yours are hanging in there.

Matthew

RP isn't offered to men with advanced PCa because there is absolutely no point inflicting the certain or potential side effects on a man with no hope of cure.

Radical RT in aPCa cases is very new and not available in all parts of the country. Your onco may be offering it but generally, a man would need to be accepted onto a trial to get this.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Mar 2022 at 18:03

Originally Posted by: Online Community Member

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Mar 2022 at 00:56

A couple of recent clinical trials suggest a Triplet of treatments are most effective for newly diagnosed advanced prostate cancer

the PEACE1 trial:

prostatecancer.news/2021/05.

Thw ARASENS trial:

businesswire.com/news/home/...

‘triplet therapy" =

(1) a second generation hormonal
(2) ADT
(3) Chemo

interesting I thought

User

Posted 30 Mar 2022 at 01:10

I believe it was a sub group of the STAMPEDE trial that shows it was worth irradiating the prostate of some men with APC:

Originally Posted by: Online Community Member

Hi Forestjohn

The biopsy was rather medieval 😂.

Perhaps we can both ask the experts if a radical prostatectomy is doable at stage 4, and if not, why not? Maybe forum members will know from their experiences?

Hope you and yours are hanging in there.

Matthew

User

Posted 30 Mar 2022 at 01:36

User

Posted 31 Mar 2022 at 11:00

I met my Oncologist yesterday. He was compassionate and impressive, spending nearly 1.5 hours with my wife and I.

He is referring me to The Royal Marsden for a second and supportive opinion. We agreed upfront Chemotherapy will start in approximately 4 weeks (hoping to have engaged with Marsden before starting). I was offered upfront Enzalutamide or Apelutemide but we agreed to hold those in reserve. The abiraterone option would be available as a second line treatment if / when I become hormone resistant. After chemotherapy I will have Radiotherapy to the prostate and possibly the two bone metastasis.

As I have a low burden with "only" 2 bone metastases he felt this approach was the right one. With a high burden he would have recommended upfront Chemotherapy, HT and Enzalutamide.

Still can't believe this is actually happening in some ways but yesterday for some reason reality hit home. Maybe it was because he asked what my wishes would be should I experience a rapid decline…eg do not resuscitate etc. Took my breath away (forgive the pun) 😅. He explained it was an administrative question relating to the Respect form he has to ask bearing in mind most patients are 20-30 years older than I am. Scary stuff.

Edited by member 31 Mar 2022 at 11:17 | Reason: Forgot to mention Radiotherapy treatment

User

Posted 31 Mar 2022 at 12:11

Hi Matthew

Sounds like a great meeting - a bit more in depth than mine anyway and certainly more willing to discuss other treatments beyond the 'standard'!

Did he suggest the Marsden, or did you mention it? I understand they are one of the best PC centres in the country.

I didn't have the wishes talk, just information on the prognosis - ie average 3 to 5 years.

I agree about not believing it's happening - I've been very blinkered just looking at next appointment. Wobbled a bit yesterday, with reality trying to grab hold. However, better today as I'm out shortly to teach - the kids always cheer you up!

Edited by member 31 Mar 2022 at 21:57 | Reason: Spelling

User

Posted 31 Mar 2022 at 13:15

Hi John,

Like everyone else in this terrible situation, I’m hoping and praying for more quality time - not just for me, but for you and everyone.

You never know, we might be around long enough for a breakthrough treatment that turns this incurable disease into a chronic condition similar to diabetes. We can live in hope!

User

Posted 31 Mar 2022 at 15:19

I had chemo and HT in 2018 when diagnosed with stage 4 PCa. Continued with HT Prostap every 3 months, another jab yesterday, they don't half come round quickly.

Still get anxious at blood test time and PSA result, next meeting with my Onco is in May.

User

Posted 31 Mar 2022 at 16:06

Yours doing really well Jasper, keep it up!

I'm following your journey.

Cheers

User

Posted 31 Mar 2022 at 17:03

Just had my first PSA reading since diagnosis.

PSA on diagnosis was 61, 2weeks after first HT injection down to 4.3.

Is that an expected decrease, seems pretty good to me?

Edited by member 31 Mar 2022 at 17:20 | Reason: Not specified

User

Posted 31 Mar 2022 at 17:28

User

Posted 02 Apr 2022 at 15:43

That's an excellent response Matthew 👌

User

Posted 04 Apr 2022 at 09:20

This is based on my own studies but it came down to you can have your ADT + Docetaxal or Enzalutamide if you wish not both

You can transfer over from Enzalutamide to Aberaterone Actate if you don’t tolerate the Enzalutamide well.
Most recent studies recommend all 3 (the triplet) as in the Peace 1 trials

In the absence of all 3 then my findings were that if you were high volume I would go for Docetaxal and if low volume Enzalutamide

They were my findings as I say

Edited by member 04 Apr 2022 at 09:46 | Reason: Error

User

Posted 04 Apr 2022 at 12:25

Hi aren’t the options Enzalutamide or Aberaterone not Apalutamide ?

User

Posted 04 Apr 2022 at 18:02

Originally Posted by: Online Community Member

Hi aren’t the options Enzalutamide or Aberaterone not Apalutamide ?

No. You are confusing covid alternatives to early chemo with options for castrate resistant prostate cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2022 at 18:06

"You can transfer over from Enzalutamide to Aberaterone Actate if you don’t tolerate the Enzalutamide well."

Only in a very limited set of circumstances :-( And you seem to not be accounting for the approval of apalutimide

Edited by member 04 Apr 2022 at 18:23 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2022 at 18:52

I’m confused isn’t Forestjohn a de novo castrate sensitive man with decision to make of Docetaxal or Enzalutamide ?

Apalutamide is not available at the outset or it certainly wasn’t offered to me.

Am I on the wrong thread ?

If it is Then I blame the Enzalutamide

User

Posted 04 Apr 2022 at 19:08

Originally Posted by: Online Community Member

I’m confused isn’t Forestjohn a de novo castrate sensitive man with decision to make of Docetaxal or Enzalutamide ?

Apalutamide is not available at the outset or it certainly wasn’t offered to me.

Am I on the wrong thread ?

If it is Then I blame the Enzalutamide

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2022 at 19:31

Originally Posted by: Online Community Member

I’m confused isn’t Forestjohn a de novo castrate sensitive man with decision to make of Docetaxal or Enzalutamide ?

Apalutamide is not available at the outset or it certainly wasn’t offered to me.

Am I on the wrong thread ?

If it is Then I blame the Enzalutamide

just to add - confirm my dad who was (initially) diagnosed with advanced PCA, was offered apalutimide upfront. This was just a few weeks back.

User

Posted 04 Apr 2022 at 20:53

It says when you consult the Apalutamide page on this website it can be used by non metastatic men not metastatic

High risk or locally advanced has that stance changed?

Do you have a document showing something different please as it would be better tolerated if I want to go for the triplet than Enzalutamide ?

Thanks and sorry for crashing your thread Forestjohn

User

Posted 04 Apr 2022 at 21:26

Yes - as I have already posted, because of Covid, NICE have agreed a temporary stance that men with advanced PCa may be able to have apa instead of chemo https://prostatecanceruk.org/prostate-information/treatments/apalutamide

However, you have already started enza - you can't swap to apa unless you have serious side effects in the first 8 weeks, I think.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2022 at 23:19

This all sounds great to have options, but for a first line treatment I have just been offered the basic normal protocol for Gloucestershire - Prostap HT and chemotherapy. I mentioned the Peace 1 study and asked about other alternatives and was offered nothing. I asked whether they did PET scans - answer no as it didn't change how they treated the condition. We discussed how I might have a hip replacement, as I have a met in the neck of the femur for which they are telling me I can no longer entertain strenuous activities for fear of a break - dispite this they didn't mention that chemo at the same time would be an issue as it reduces your immune system. I've been on HT since 10/3 but nobody has arranged for a PSA test to see if the therapy is having any effect (I've asked if my GP can do one, as I'd like to know if I've hormone resistant cancer even if the oncologist isn't concerned!)

What I'm basically saying is that this appears to be a bit of a postcode lottery going on here! I'm presently pushing my GP for a second opinion referal to the Royal Marsden, as I don't think my local NHS unit really cares a hoot about me!

It's great having to fight the NHS at the same time as cancer! Sorry feeling despondent and of course more tired than normal due to the bl...y HT!

User

Posted 05 Apr 2022 at 17:32

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2022 at 18:01

I was literally going to ask how things were John. This is bound to be very stressful especially if you don’t feel you’re being supported fully.

I hope we both quickly get a second opinion from The Royal Marsden as this will either confirm or challenge the clinical recommendations. This is crucial to settling any worries.

Our stage 4 diagnosis is incredibly tough but remember there is so much compassion, knowledge and support from members of this forum. I am very grateful to everyone.

As we are both in the same boat John, we can help each other make the best out of a bad situation.

User

Posted 05 Apr 2022 at 19:30

Thanks Matthew

It's great to have someone at a similar stage. I was feeling particularly depressed yesterday with everything. Luckily, working at school this morning was a good tonic!

Finally, got an orthopedic appointment for the 20th April and the consultant actually called to confirm he thinks he can help, has cancer experience and will try to get me in earlier if he can. At last, somebody who helps! He also mentioned that there only needs to be a 3 week window before chemo starts after surgery so that may help. Looks like I may be hobbling around a bit soon!

Hoping to hear from GP tomorrow to discuss possible Royal Marsden opinion.

User

Posted 05 Apr 2022 at 19:35

That’s really good to hear! Sounds to me you’re in good hands there. Very positive indeed

Keep us all posted.

User

Posted 17 Apr 2022 at 07:19

just checking in John, what’s the latest?

User

Posted 17 Apr 2022 at 11:20

Hi Matthew

Sufferinghorrible hot flushes after having a 3 month Prostap injection last week - may ask to go back to 1 monthly next time!

Had another meeting with oncologist Thursday- much better found out Enzalutamide or (apulutamide?) both on offer it I want in preference to chemo start. Waiting until after second opinion from Royal Marsden before choosing - no date for that yet but hopefully soon!

Orthopaedic appointment next Wednesday and after phone call with surgeon he says he may be able to help - so hopeful there.

So overall things moving on, but still nothing final.

How are you doing? Have you got to the Royal Marsden yet?

John

User

Posted 17 Apr 2022 at 12:14

“snap”

Hi John,

We're in almost the same situation. You seem to be getting better support and options recently, thank goodness.

I had my first 3 month prostap injection at the GP surgery last week, shifting from Zoladex administered by the hospital. I had an easy time with Zoladex so was concerned I was introducing uncertainty with a different manufacturer. So far, luckily, I haven't felt any hot flushes, nausea, fatigue etc. The only time I had hot flushes was when taking the initial Cyproterone tablets.

I'm still waiting for The Royal Marsden...are you paying privately for that second opinion?

Treatments wise I've been offered the same alternatives (early chemo dosatoxil / Enzalutamide or Apalutamide) so it would be great if we can exchange notes. Four opinions are better than two! My Oncologist said if I had a high burden metastasis including soft tissue invasion he would recommend Enzalutamide or Apalutamide. As it stands, he has recommended Prostap and Chemotherapy, reserving the other medications for second line treatment. Still not sure what is best - hence the second opinion.

Hopefully you'll get your hip replacement over and done with asap.

Hope you and yours are coping as best you can.

Edited by member 17 Apr 2022 at 12:17 | Reason: Not specified

User

Posted 17 Apr 2022 at 16:24

Hi Matthew

Managed to get GP to refer me under NHS luckily.

Personally not sure where to go with treatment yet. As you say, standard advice is Prostap and chemo. Just hate idea of filling myself with poisonous chemicals. I've even considered surgical castration in preference to the prostap, especially as I'm told HR will be lifelong!

User

Posted 17 Apr 2022 at 17:35

I still have the option to use it anytime in the future though.

Best wishes to you both in your journeys and decisions 👍

User

Posted 17 Apr 2022 at 18:05

Hi John and Chris,

Chris - that’s very good to know, thank you. Glad your decision is proving successful - long may it continue!

John - my referral went from the hospital to The Royal Marsden but when I chased it directly I was told they don’t accept NHS referrals for second opinions, only private. Call them and make sure as you could wait ages only to be told the same and delay your treatment. Details here:

Central Referral Office
The Royal Marsden
Downs Road, Sutton
Surrey SM2 5PT

Tel: 0800 731 2325
Fax: 020 8661 3149

Email: rmh-tr.referrals@nhs.net

Edited by member 17 Apr 2022 at 18:08 | Reason: Not specified

User

Posted 17 Apr 2022 at 18:14

PS: I wondered too if surgical castration is better than a lifetime of drugs. Gosh, only a handful of weeks ago we were both happily oblivious to all of this. Still, we’re fortunate to have treatment options that simply were not around that long ago. Onwards and upwards!

User

Posted 17 Apr 2022 at 18:20

I think the issue would be a non-important surgery where there is a huge backlog at present. I’m sure my vet could do it tbh :-)

User

Posted 17 Apr 2022 at 22:48

Hi Matthew

Definitely going at GPs referral. 🤔

User

Posted 17 Apr 2022 at 22:53

Definitely going to quiz doctors on this point. If it means less chemicals it might be worth it. If we're on lifetime HT, what's the point of keeping your plums! You would hope the side effects are less from surgery? As my wife 'tactfully' said, her friend has all her dogs done and they do better!

User

Posted 18 Apr 2022 at 08:33

Blimey, I felt so sorry for our dog when we said farewell to his bits and bobs. I could have sworn he looked at me with that knowing “it’s your turn buddy” face just now 🤪.

Edited by member 18 Apr 2022 at 08:34 | Reason: Not specified

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