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Why do some people get offered chemo

User
Posted 25 Feb 2016 at 15:24
While reading a lot of these posts it seems a lot of people have chemo straight away. My dad was diagnosed last April and has spread to his torso. He had one shot of radiotherapy as in pain with his hip. He is on a trial which involves taking tablets and steroids as well as the hormone injections. The doctors have never offered him chemo. Do you think he should ask about this at his next hospital appointment. Also what is a Gleason score neither my mum or dad have said what his is. His psa was 1300 at the start which has come down to 0.04 at last appointment. Any help would be much appreciated thank you.

Anna x

User
Posted 26 Feb 2016 at 09:18

However .....
You don't (now) have to join a trial to get early chemo. As soon as the first trial results were available, late in 2014, some hospitals started offering it to newly diagnosed patients (my husband was one, although it hasn't apparently helped much). Since then, this treatment has now become officially approved and endorsed.

But it is still not offered to every patient. The evidence from the trials related to newly diagnosed patients, and only up to a certain age (70?). It may be that your father's hospital didn't have permission to give early chemo until recently, by which time he would no longer count as "newly diagnosed". Or he may be outside the optimal age range, or have some other health complication that means chemo is not a good idea right now.

Whatever the reason, it sounds as if your Dad is responding very well indeed to the treatment he's having, with that huge reduction in PSA. He could ask about chemo, but they may well say he's no longer at the stage where it's of any proven benefit. He may not even want to undergo what can be an intrusive and tiring few months of treatment with possibly unpleasant side effects - some men who are offered early chemo refuse it.

By all means talk it over with your Dad, but there may be good reasons why he hasn't been offered this treatment. It's not a "silver bullet" , and the treatment he's having already seems to be working well. He may well be offered chemo further down the line, when other drugs start to fail, but that's not something to concern yourself about yet.

User
Posted 26 Feb 2016 at 13:40

What Ian says makes sense to me, Anna. If your Dad is taking part in a clinical trial (probably Stampede) this would be an alternative to early chemo. Tony, my husband, was also offered this option; he chose the chemo because he didn't know which arm of the trial he would be put on (allocation is randomised).

It sounds as if your Dad, like Ian, may be on the Enzalutamide + Abiraterone arm of the trial, which gives him two very effective (and expensive!) drugs, not normally taken together. If this is the case, I think he's getting the best treatment possible at the moment, and it seems to be working well.
Marje

User
Posted 25 Feb 2016 at 20:57

Hi Anna,

Welcome to this forum though sorry for the reason that brings you here.

There are different schools of thought regarding about when chemo should be given and it may well be the your Dad's consultants decided the approach they have opted for is best for him, at least for the time being. Certainly the drop in his PSA is very considerable. One could always ask about chemo but it may well be that with Dad's current response to what may be HT plus steroids, they may be satisfied with what he is having at present.

The Gleason score indicates how far cancer cells have deviated from normal on a scale of 1 to 5. The higher the number, the greater the deviation. Two figures are given, the number of most deviant cells is given first followed by the next greatest number of deviant cancer cells. These two numbers are then added together to arrive at a Gleason score. Thus for example a 4 + 5 = 9 is the same overall Gleason figure as a 5 + 4 = 9 but the latter has more of the further mutated cells. The cancer cells are usually taken from the Prostate in a biopsy to decide Gleason. However, in your Dad's case he has spread and where this is so there is a strong possibility that those cancer cells have further mutated so his original Gleason may not apply if a biopsy was taken from where the cancer had spread, which they are unlikely to biopsy if widespread.

Hope Dad is coping well with his treatment

Edited by member 25 Feb 2016 at 21:01  | Reason: Not specified

Barry
User
Posted 26 Feb 2016 at 12:31

Hi Anna

I was also diagnosed in April 2015 with bone mets, I was offered either standard hormone therapy (3 monthly prostap injections) or the opportunity to go on the STAMPEDE trial. Early chemo was not available at my hospital at the time. I went for the trial and got arm J which sounds like it could possibly be what your dads on. This is the standard injections plus enzolutamide, abiraterone and steroid tablets. I asked my onco a couple of months ago about the possibility of chemo and she said it could be arranged but I would have to come off the trial. As my treatment is currently working well I thought it would be to much of a gamble to come off the trial as the chemo may not work any better than my current treatment, so I've stuck with the trial.

Its always worth asking to give you options, but for his PSA to come down from 1300 to 0,04 shows that his current treatment looks to be working really well.

I hope this helps, all the best Ian 

User
Posted 28 Feb 2016 at 19:46

Wow, what a result! Would that I could have had such a PSA reduction. My nadir was 0.3 and eight years on I'm still going strong. I'd say "go with the flow". The treatment has had a fantastic result. Start planning the next decade of living life to the full!

ACin Northants

User
Posted 28 Feb 2016 at 21:19

Good response AC!! Live life to the full stay positive and deal with things as they occur do not worry about things until they need worrying about.

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 02 Mar 2016 at 18:19

Ah well if he has had a biopsy he can ask the trial nurse what his Gleason score was. Alternatively he could ask the GO next time he is there as it should have been sent to the GP in a letter.

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

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User
Posted 25 Feb 2016 at 20:57

Hi Anna,

Welcome to this forum though sorry for the reason that brings you here.

There are different schools of thought regarding about when chemo should be given and it may well be the your Dad's consultants decided the approach they have opted for is best for him, at least for the time being. Certainly the drop in his PSA is very considerable. One could always ask about chemo but it may well be that with Dad's current response to what may be HT plus steroids, they may be satisfied with what he is having at present.

The Gleason score indicates how far cancer cells have deviated from normal on a scale of 1 to 5. The higher the number, the greater the deviation. Two figures are given, the number of most deviant cells is given first followed by the next greatest number of deviant cancer cells. These two numbers are then added together to arrive at a Gleason score. Thus for example a 4 + 5 = 9 is the same overall Gleason figure as a 5 + 4 = 9 but the latter has more of the further mutated cells. The cancer cells are usually taken from the Prostate in a biopsy to decide Gleason. However, in your Dad's case he has spread and where this is so there is a strong possibility that those cancer cells have further mutated so his original Gleason may not apply if a biopsy was taken from where the cancer had spread, which they are unlikely to biopsy if widespread.

Hope Dad is coping well with his treatment

Edited by member 25 Feb 2016 at 21:01  | Reason: Not specified

Barry
User
Posted 25 Feb 2016 at 23:17

Hello Anna,
there is an idea in society that when people get cancer, they have chemo and hopefully get cured. In reality, it isn't that straightforward and prostate cancer is not a cancer that can be cured with chemo; all it can do is slow progression. Until fairly recently, men only had chemo when they were in the very end stage of their life - it helped to make them more comfortable and hopefully kept them around for a bit longer.

But there has been some recent research that showed a couple of new drugs work for men who in the past would have had no more treatments and would have died. They also discovered that these drugs might work better after the man has had chemo to damage the cells a bit first. From that, some other men went on a trial to have chemo as soon as they were diagnosed and this is looking like it extends life quite well and makes hormone treatments work better. However it is called 'early chemo' the clue being in the name - the trial puts newly diagnosed men with extensive spread straight onto chemo. Presumably your dad didn't have this because he was either a) on a completely different trial or b) was on the same trial but drew a different arm. Whichever, the trial your dad is on is serving him well at the moment and really, you should be relieved that he isn't at the chemo stage because that would be saying his other treatments have stopped working.

As for the question about his Gleason score, his PSA was so high at diagnosis that they probably didn't do a biopsy. There is sometimes no point doing what is quite an invasive procedure if he obviously has prostate cancer. If they don't do a biopsy there is no Gleason result.

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

User
Posted 26 Feb 2016 at 09:18

However .....
You don't (now) have to join a trial to get early chemo. As soon as the first trial results were available, late in 2014, some hospitals started offering it to newly diagnosed patients (my husband was one, although it hasn't apparently helped much). Since then, this treatment has now become officially approved and endorsed.

But it is still not offered to every patient. The evidence from the trials related to newly diagnosed patients, and only up to a certain age (70?). It may be that your father's hospital didn't have permission to give early chemo until recently, by which time he would no longer count as "newly diagnosed". Or he may be outside the optimal age range, or have some other health complication that means chemo is not a good idea right now.

Whatever the reason, it sounds as if your Dad is responding very well indeed to the treatment he's having, with that huge reduction in PSA. He could ask about chemo, but they may well say he's no longer at the stage where it's of any proven benefit. He may not even want to undergo what can be an intrusive and tiring few months of treatment with possibly unpleasant side effects - some men who are offered early chemo refuse it.

By all means talk it over with your Dad, but there may be good reasons why he hasn't been offered this treatment. It's not a "silver bullet" , and the treatment he's having already seems to be working well. He may well be offered chemo further down the line, when other drugs start to fail, but that's not something to concern yourself about yet.

User
Posted 26 Feb 2016 at 12:31

Hi Anna

I was also diagnosed in April 2015 with bone mets, I was offered either standard hormone therapy (3 monthly prostap injections) or the opportunity to go on the STAMPEDE trial. Early chemo was not available at my hospital at the time. I went for the trial and got arm J which sounds like it could possibly be what your dads on. This is the standard injections plus enzolutamide, abiraterone and steroid tablets. I asked my onco a couple of months ago about the possibility of chemo and she said it could be arranged but I would have to come off the trial. As my treatment is currently working well I thought it would be to much of a gamble to come off the trial as the chemo may not work any better than my current treatment, so I've stuck with the trial.

Its always worth asking to give you options, but for his PSA to come down from 1300 to 0,04 shows that his current treatment looks to be working really well.

I hope this helps, all the best Ian 

User
Posted 26 Feb 2016 at 13:40

What Ian says makes sense to me, Anna. If your Dad is taking part in a clinical trial (probably Stampede) this would be an alternative to early chemo. Tony, my husband, was also offered this option; he chose the chemo because he didn't know which arm of the trial he would be put on (allocation is randomised).

It sounds as if your Dad, like Ian, may be on the Enzalutamide + Abiraterone arm of the trial, which gives him two very effective (and expensive!) drugs, not normally taken together. If this is the case, I think he's getting the best treatment possible at the moment, and it seems to be working well.
Marje

User
Posted 28 Feb 2016 at 19:46

Wow, what a result! Would that I could have had such a PSA reduction. My nadir was 0.3 and eight years on I'm still going strong. I'd say "go with the flow". The treatment has had a fantastic result. Start planning the next decade of living life to the full!

ACin Northants

User
Posted 28 Feb 2016 at 21:19

Good response AC!! Live life to the full stay positive and deal with things as they occur do not worry about things until they need worrying about.

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 02 Mar 2016 at 17:26
Thank you for that Lynn he did have a biopsy, but that was because he decided to go on the trial and for that you had to have all the scans, biopsy and an ECG. And thankfully yes at the moment the treatment he's on does seem to be working well. Let's hope that it works well for other men too.

Anna x

User
Posted 02 Mar 2016 at 17:32
Hi Ian yes it sounds like the trial you are on is the same as my dads. He had to have bloods and blood pressure every 2 weeks at first , then I think it was monthly. At Christmas they said they didn't want to see him till March. That can only be a good thing.

I wish you well with your treatment.

Anna

User
Posted 02 Mar 2016 at 17:37

Thank you everyone for taking the time to reply to my post you all really are very informative. I prefer to know things, my mum would rather not think about it which is fine. My dad doesn't really talk about it which is also fine. I guess I just like to know things and what other options are available, all the people on here are so knowledgable it's good to ask you all. Thanks for all your help.

Anna xxx

User
Posted 02 Mar 2016 at 18:19

Ah well if he has had a biopsy he can ask the trial nurse what his Gleason score was. Alternatively he could ask the GO next time he is there as it should have been sent to the GP in a letter.

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

User
Posted 19 Mar 2016 at 19:48
Just thought I would update on my dad. He had

a onco appointment Tuesday, as usual not much information. His blood results where all fine. He has been getting pain in his side which had been worrying him. The doc had a feel on both sides but couldn't feel anything so didn't know what was causing it and didn't seem to be bothered about it. Mum asked about biosphonates but he said they wouldn't use them till the pain comes back more worse. Next time he's doing a saliva test to check if it's genetic I think. Back in 12 weeks so for a change very positive.

Anna

 
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