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What is stampede??

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User
Posted 14 Mar 2015 at 09:31

Hi, 

Thank you for the support for the last message.

My husband (47) and I (35) are new on here, (see last thread). He has T3 N1 M0 gleason 9. original PSA 46. although a recent CT scan shows a 'suspicious area' higher-up in abdomen (waiting to find out what this means, where exactly- bone? node?) He has had a Radical prostatectomy as at that point they thought from the scans it was contained. Found it had spread to 1 node and bladder neck, seminal vesicles during surgery. the plan was RT, but now they have found the 'suspicious area' they are initially just starting him on hormone therapy. taking tablets at mo, injection in 2 weeks. Post op PSA 0.9.

Any way, it's all a bit new and overwhelming at the mo, especially having a 5 year old daughter.

What I wanted to find out about, is what are these 'stampede ' trials I see people discussing? Just wondered if it's something we should be asking about?

Many thanks- off to 3 children's birthday parties in a bit- 3!!!!

x

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 14 Mar 2015 at 09:31

Hi, 

Thank you for the support for the last message.

My husband (47) and I (35) are new on here, (see last thread). He has T3 N1 M0 gleason 9. original PSA 46. although a recent CT scan shows a 'suspicious area' higher-up in abdomen (waiting to find out what this means, where exactly- bone? node?) He has had a Radical prostatectomy as at that point they thought from the scans it was contained. Found it had spread to 1 node and bladder neck, seminal vesicles during surgery. the plan was RT, but now they have found the 'suspicious area' they are initially just starting him on hormone therapy. taking tablets at mo, injection in 2 weeks. Post op PSA 0.9.

Any way, it's all a bit new and overwhelming at the mo, especially having a 5 year old daughter.

What I wanted to find out about, is what are these 'stampede ' trials I see people discussing? Just wondered if it's something we should be asking about?

Many thanks- off to 3 children's birthday parties in a bit- 3!!!!

x

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 14 Mar 2015 at 16:54
Ali

hi glad that you have found us, we are a friendly bunch.

I did not ost on your opening thead because I have been out of internet world for a couple of days, I will catch up on that soon.

Stampede is a massive ongoing clinical trial for Prostate Cancer, if you want to you can google it and get some idea of what it is all about. The various arms of the trial are alphabetically progreessive.

It is a while since I checked just how far this is up to so I am not able to advise you specifically.

There are several other ongoing trials so the best way to find out is to ask your medical team or google search for them and then check what might be available in your area with Peter's medical team.

I think the way you are handling this news and trying to keep your little girl informed and yet protected is wonderful. We have several other members here with young children so I am sure you will get lots of advice from them too.

xx

Mo

User
Posted 14 Mar 2015 at 17:00

Hi,
A stampede is where you run as fast as you can away from the hospital, screaming is optional.

Just kidding :)

A stampede trial is where a drug is either new to the marker or possibly could be used in a different way is trailed on us guinea pigs.
You need to fit the criteria that they lay down in order for the trial team to gain useful data from the trial. There are 'arms' which are different treatments paths. The early arms A B C etc. are now closed but new arms open as time progresses. I think the newest arm is J, couk be wrong on that details though.

I'm on arm G, now closed to newcomers, which used Abiraterone pre chemo along with RT.
I'm around 3/4 through the trial.
Apart from the treatment benefits it offers better monitoring which is useful.

You will need to chat with your oncologist to see if you fit the acceptance criteria.

All the best

Kevin

User
Posted 14 Mar 2015 at 17:57

HI Ali

I only noticed your thread this afternoon and wanted to reply but had a play date booked for my son - so have had to wait.

I wanted to say that I was 38 when my OH was diagnosed with PCa and I had a toddler and  another baby due 2 weeks later.

It was a very dark and difficult time (at what should have been a joyous one).

So - I do understand the additional/different problems that this presents and the worries and fears that you will have.

Others have given great advice on your other thread but I wanted to say that there are some younger wives on here too who can offer and need support like yourself.

Of course you have the 'any more children' scenario to think about as well as the other worries (freezing sperm is an option - but I expect that you have been told about all this).

I have just seen your thread on STAMPEDE.

In brief my OH was diagnosed G7 N1 M0 similar to your husband and after much consideration we opted for the trial.

We got lots of additional appointments and monitoring and if I am honest I think the Drs and nurses felt sorry for us (as I had a newborn with me at the hospital)...so we got lots of additional time and help.

All our questions were answered, we had extra blood tests and all ailments were checked out immediately at the hospital (whether they were PCa related or not).

Not all hospitals do the trial, but it is worth asking. Whatever happens you get the same standard treatment and maybe a few extra drugs on top ( they are comparing the use of these drugs at the beginning of treatment as opposed to using the additional drugs later). Of course with the extra drugs are the additional side effects, we had high bp and low Potassium which meant that even more tablets were needed. But if your hubbie is generally otherwise fit and strong he may be able to cope with these extra drugs in an effort to give the Ca a very strong blast at the beginning, coupled with the RT.

You may want to look at the Jane Plant dietary advice too at some point. We follow it to some degree but not religiously as many other do on here, but it is certainly an interesting read.

Please come back if you have any questions, there is so much to take in that it is daunting.

All the best

 

Alison x

 

Edited by member 14 Mar 2015 at 22:28  | Reason: Not specified

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User
Posted 14 Mar 2015 at 16:54
Ali

hi glad that you have found us, we are a friendly bunch.

I did not ost on your opening thead because I have been out of internet world for a couple of days, I will catch up on that soon.

Stampede is a massive ongoing clinical trial for Prostate Cancer, if you want to you can google it and get some idea of what it is all about. The various arms of the trial are alphabetically progreessive.

It is a while since I checked just how far this is up to so I am not able to advise you specifically.

There are several other ongoing trials so the best way to find out is to ask your medical team or google search for them and then check what might be available in your area with Peter's medical team.

I think the way you are handling this news and trying to keep your little girl informed and yet protected is wonderful. We have several other members here with young children so I am sure you will get lots of advice from them too.

xx

Mo

User
Posted 14 Mar 2015 at 17:00

Hi,
A stampede is where you run as fast as you can away from the hospital, screaming is optional.

Just kidding :)

A stampede trial is where a drug is either new to the marker or possibly could be used in a different way is trailed on us guinea pigs.
You need to fit the criteria that they lay down in order for the trial team to gain useful data from the trial. There are 'arms' which are different treatments paths. The early arms A B C etc. are now closed but new arms open as time progresses. I think the newest arm is J, couk be wrong on that details though.

I'm on arm G, now closed to newcomers, which used Abiraterone pre chemo along with RT.
I'm around 3/4 through the trial.
Apart from the treatment benefits it offers better monitoring which is useful.

You will need to chat with your oncologist to see if you fit the acceptance criteria.

All the best

Kevin

User
Posted 14 Mar 2015 at 17:57

HI Ali

I only noticed your thread this afternoon and wanted to reply but had a play date booked for my son - so have had to wait.

I wanted to say that I was 38 when my OH was diagnosed with PCa and I had a toddler and  another baby due 2 weeks later.

It was a very dark and difficult time (at what should have been a joyous one).

So - I do understand the additional/different problems that this presents and the worries and fears that you will have.

Others have given great advice on your other thread but I wanted to say that there are some younger wives on here too who can offer and need support like yourself.

Of course you have the 'any more children' scenario to think about as well as the other worries (freezing sperm is an option - but I expect that you have been told about all this).

I have just seen your thread on STAMPEDE.

In brief my OH was diagnosed G7 N1 M0 similar to your husband and after much consideration we opted for the trial.

We got lots of additional appointments and monitoring and if I am honest I think the Drs and nurses felt sorry for us (as I had a newborn with me at the hospital)...so we got lots of additional time and help.

All our questions were answered, we had extra blood tests and all ailments were checked out immediately at the hospital (whether they were PCa related or not).

Not all hospitals do the trial, but it is worth asking. Whatever happens you get the same standard treatment and maybe a few extra drugs on top ( they are comparing the use of these drugs at the beginning of treatment as opposed to using the additional drugs later). Of course with the extra drugs are the additional side effects, we had high bp and low Potassium which meant that even more tablets were needed. But if your hubbie is generally otherwise fit and strong he may be able to cope with these extra drugs in an effort to give the Ca a very strong blast at the beginning, coupled with the RT.

You may want to look at the Jane Plant dietary advice too at some point. We follow it to some degree but not religiously as many other do on here, but it is certainly an interesting read.

Please come back if you have any questions, there is so much to take in that it is daunting.

All the best

 

Alison x

 

Edited by member 14 Mar 2015 at 22:28  | Reason: Not specified

User
Posted 14 Mar 2015 at 22:54

Thank you to all, and to Alison- it is good to know (if it can I can put it like that?) there are other younger couples with children going through this. I will read your story on your profile.

It's a crazy time, but we hope to make PCa fit in to our lives, rather than make our lives fit around the cancer.... that's the aim anyway!

x

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 14 Mar 2015 at 23:01
Hi Ali,

Sorry to hear about your OH.

I was diagnosed with metastatic PCa in September. PSA of 914 and mets to spine, ribs and pelvis Gleason (4+4)=8

After all of the scans I decided to join the STAMPEDE trial. following further investigations I was accepted. I was randomised by computer which determined the arm for me. I am on arm J which means I continue with my decapeptyl 3 monthly injections but now receive abiraterone tablets, enzalutamide capsules and prednisolone tabs. One of the big advantages is that I am seen by the oncologist every month and the research nurse every two weeks. This for the first three months then 3 monthly by the onco but monthly by the nurse. It is completely voluntary and I can come off the trial at any time I feel like it.

Each time I am seen there are blood works done. All of this is very reassuring and good relationships have been developed.

The three arms currently available are

1. Continue on HT only.

2. Continue with HT plus RT

3.Continue with HT plus the extre drugs.

The main advantage is that whilst you remain on the trial you get the extra monitoring and remain under the care of Oncology.

I hope this is of help to you and your OH.

Kind regards

Davey

User
Posted 15 Mar 2015 at 00:29

Just to be clear Ali, your OH probably doesn't meet the criteria for STAMPEDE at the minute so you might get some funny looks when you ask the consultant about it

Edited by member 15 Mar 2015 at 03:35  | Reason: Not specified

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

User
Posted 15 Mar 2015 at 10:44

Hi Ali

I think Lyn is right. As your OH has had the operation already I think that the STAMPEDE will not be for him, at this stage.

There are lots of other trials in the pipeline, no doubt, and lots of drugs coming up.

Glad to hear that you are feeling a little more re-assured and I hope that the news about the other 'suspicious' area is good.

Keep in touch as and when you have time!

Not always easy with a little one!

Alison x

 
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