Re: A new member with advanced and aggressive PC says hi

[Guest guest]

Steve, feel free to vent anytime you feel the need. We're here to hear you, and many of the members of the club no one really wants to belong to may have ideas that will help.

Mike C.

Subject: A new member with advanced and aggressive PC says hiTo: ProstateCancerSupport Date: Friday, October 15, 2010, 11:53 AM

Hello to all in the group.My name is Steve Keel living in Somerset England and at the age of 54 I've just been diagnosed with PC.My initial PSA (following a visit to the local doctor's surgery, approx 5 weeks ago) was 710. Everything was pretty speedy from then on - I was referred to the Urology dept. in Bath RUH and was told that in all likelihood I had advanced and probably aggressive PC.The way it was handled was extremely good - A Macmillan nurse explained everything and made sure I had literature to read up about all the jargon, tests, etc..I then had an appointment with a consultant who did a rectal examination and explained to me that the likelihood was that I had advanced PC.My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the 12 I had been expecting

but apparently that wasn't necessary.Results came a bit less than a week later, confirming what I had been led to expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.A bone scan was next on the list - apparently they just call them Nuclear Medicine scans ( an injection of radioactive tracer) - the technician then sent me straight down to Radiology for an X-Ray.Next was the CT scan.Pretty obvious to me by now that there was indeed metastases in the bones. Talking to the Macmillan nurse she explained that there appeared to be extensive metastases in the bone and possibly in some lymph nodes though the CT showed no evidence of tumours in the lungs, liver or kidneys.I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial (having already talked to the Specialist nurse about it.Sorry if I've waffled on, Take care

everyone,Steve------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change the title if the content requires it

[Guest guest]

Steve, feel free to vent anytime you feel the need. We're here to hear you, and many of the members of the club no one really wants to belong to may have ideas that will help.

Mike C.

Subject: A new member with advanced and aggressive PC says hiTo: ProstateCancerSupport Date: Friday, October 15, 2010, 11:53 AM

Hello to all in the group.My name is Steve Keel living in Somerset England and at the age of 54 I've just been diagnosed with PC.My initial PSA (following a visit to the local doctor's surgery, approx 5 weeks ago) was 710. Everything was pretty speedy from then on - I was referred to the Urology dept. in Bath RUH and was told that in all likelihood I had advanced and probably aggressive PC.The way it was handled was extremely good - A Macmillan nurse explained everything and made sure I had literature to read up about all the jargon, tests, etc..I then had an appointment with a consultant who did a rectal examination and explained to me that the likelihood was that I had advanced PC.My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the 12 I had been expecting

but apparently that wasn't necessary.Results came a bit less than a week later, confirming what I had been led to expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.A bone scan was next on the list - apparently they just call them Nuclear Medicine scans ( an injection of radioactive tracer) - the technician then sent me straight down to Radiology for an X-Ray.Next was the CT scan.Pretty obvious to me by now that there was indeed metastases in the bones. Talking to the Macmillan nurse she explained that there appeared to be extensive metastases in the bone and possibly in some lymph nodes though the CT showed no evidence of tumours in the lungs, liver or kidneys.I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial (having already talked to the Specialist nurse about it.Sorry if I've waffled on, Take care

everyone,Steve------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change the title if the content requires it

[Guest guest]

Hello Steve,

I'm sorry to hear about your diagnosis. The cancer appears to be

pretty advanced and very dangerous. I assume you have already

experienced some symptoms that brought you in to the doctor's

office.

There are several possible treatments available, some standard,

some experimental. How well you will do with them is impossible

to predict until you've tried them. Cancer develops differently

in different people. Some prostate cancers are very hormone

sensitive. Androgen deprivation therapy (ADT) can hold them down

for many years. Others are not very hormone sensitive and the

drugs are only good for a few months. Some are very sensitive

to chemotherapy and some are not.

Given your young age, if I were you I think I would ask the

oncologist they refer you to about getting the most aggressive

available treatment. You are probably young and strong enough to

stand the side effects, and have enough potential years ahead of

you that it could be worth putting up with side effects if the

treatment gives you more time.

For example, here in the U.S. most patients are treated with

simple ADT and, when that fails, more complex ADT, then what that

fails, chemotherapy. However some oncologists are now combining

ADT with chemotherapy and possibly other drugs to try to hit the

cancer as hard as possible with everything at once. Whether that

would help you, I'm not qualified to say, but your oncologist may

have an opinion.

There are no known cures at this time. Even the most aggressive

of the currently available treatments are likely to stop working

eventually. But there are men in this group who have had

metastatic prostate cancer for more than 10 years and are still

alive and still getting up and going to work in the morning. In

fact, the former President of France, Francois Mitterand, lived

15 years after his diagnosis of metastatic prostate cancer,

including all eight years of his Presidency.

Best of luck to you.

Alan

A new member with advanced and aggressive PC

>says hi

>

> Hello to all in the group.

> My name is Steve Keel living in Somerset England and at the age of 54 I've

> just been diagnosed with PC.

> My initial PSA (following a visit to the local doctor's surgery, approx 5

> weeks ago) was 710. Everything was pretty speedy from then on - I was referred

> to the Urology dept. in Bath RUH and was told that in all likelihood I had

> advanced and probably aggressive PC.

> The way it was handled was extremely good - A Macmillan nurse explained

> everything and made sure I had literature to read up about all the jargon,

> tests, etc..

> I then had an appointment with a consultant who did a rectal examination and

> explained to me that the likelihood was that I had advanced PC.

> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a

> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the

> 12 I had been expecting but apparently that wasn't necessary.

> Results came a bit less than a week later, confirming what I had been led to

> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.

> A bone scan was next on the list - apparently they just call them Nuclear

> Medicine scans ( an injection of radioactive tracer) - the technician then

> sent me straight down to Radiology for an X-Ray.

> Next was the CT scan.

> Pretty obvious to me by now that there was indeed metastases in the bones.

> Talking to the Macmillan nurse she explained that there appeared to be

> extensive metastases in the bone and possibly in some lymph nodes though the

> CT showed no evidence of tumours in the lungs, liver or kidneys.

> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial

> (having already talked to the Specialist nurse about it.

>

> Sorry if I've waffled on,

> Take care everyone,

> Steve

[Guest guest]

Hello Steve,

I'm sorry to hear about your diagnosis. The cancer appears to be

pretty advanced and very dangerous. I assume you have already

experienced some symptoms that brought you in to the doctor's

office.

There are several possible treatments available, some standard,

some experimental. How well you will do with them is impossible

to predict until you've tried them. Cancer develops differently

in different people. Some prostate cancers are very hormone

sensitive. Androgen deprivation therapy (ADT) can hold them down

for many years. Others are not very hormone sensitive and the

drugs are only good for a few months. Some are very sensitive

to chemotherapy and some are not.

Given your young age, if I were you I think I would ask the

oncologist they refer you to about getting the most aggressive

available treatment. You are probably young and strong enough to

stand the side effects, and have enough potential years ahead of

you that it could be worth putting up with side effects if the

treatment gives you more time.

For example, here in the U.S. most patients are treated with

simple ADT and, when that fails, more complex ADT, then what that

fails, chemotherapy. However some oncologists are now combining

ADT with chemotherapy and possibly other drugs to try to hit the

cancer as hard as possible with everything at once. Whether that

would help you, I'm not qualified to say, but your oncologist may

have an opinion.

There are no known cures at this time. Even the most aggressive

of the currently available treatments are likely to stop working

eventually. But there are men in this group who have had

metastatic prostate cancer for more than 10 years and are still

alive and still getting up and going to work in the morning. In

fact, the former President of France, Francois Mitterand, lived

15 years after his diagnosis of metastatic prostate cancer,

including all eight years of his Presidency.

Best of luck to you.

Alan

A new member with advanced and aggressive PC

>says hi

>

> Hello to all in the group.

> My name is Steve Keel living in Somerset England and at the age of 54 I've

> just been diagnosed with PC.

> My initial PSA (following a visit to the local doctor's surgery, approx 5

> weeks ago) was 710. Everything was pretty speedy from then on - I was referred

> to the Urology dept. in Bath RUH and was told that in all likelihood I had

> advanced and probably aggressive PC.

> The way it was handled was extremely good - A Macmillan nurse explained

> everything and made sure I had literature to read up about all the jargon,

> tests, etc..

> I then had an appointment with a consultant who did a rectal examination and

> explained to me that the likelihood was that I had advanced PC.

> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a

> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the

> 12 I had been expecting but apparently that wasn't necessary.

> Results came a bit less than a week later, confirming what I had been led to

> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.

> A bone scan was next on the list - apparently they just call them Nuclear

> Medicine scans ( an injection of radioactive tracer) - the technician then

> sent me straight down to Radiology for an X-Ray.

> Next was the CT scan.

> Pretty obvious to me by now that there was indeed metastases in the bones.

> Talking to the Macmillan nurse she explained that there appeared to be

> extensive metastases in the bone and possibly in some lymph nodes though the

> CT showed no evidence of tumours in the lungs, liver or kidneys.

> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial

> (having already talked to the Specialist nurse about it.

>

> Sorry if I've waffled on,

> Take care everyone,

> Steve

[Guest guest]

That is the norm over here in the UK Alan

Best wishes Steve

I'm in Yorkshire somewhat north of you.

A new member with advanced and aggressive PC >says hi>> Hello to all in the group.> My name is Steve Keel living in Somerset England and at the age of 54 I've> just been diagnosed with PC.> My initial PSA (following a visit to the local doctor's surgery, approx 5> weeks ago) was 710. Everything was pretty speedy from then on - I was referred> to the Urology dept. in Bath RUH and was told that in all likelihood I had> advanced and probably aggressive PC.> The way it was handled was extremely good - A Macmillan nurse explained> everything and made sure I had literature to read up about all the jargon,> tests, etc..> I then had an appointment with a consultant who did a rectal examination and> explained to me that the likelihood was that I had advanced PC.> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the> 12 I had been expecting but apparently that wasn't necessary.> Results came a bit less than a week later, confirming what I had been led to> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.> A bone scan was next on the list - apparently they just call them Nuclear> Medicine scans ( an injection of radioactive tracer) - the technician then> sent me straight down to Radiology for an X-Ray.> Next was the CT scan.> Pretty obvious to me by now that there was indeed metastases in the bones.> Talking to the Macmillan nurse she explained that there appeared to be> extensive metastases in the bone and possibly in some lymph nodes though the> CT showed no evidence of tumours in the lungs, liver or kidneys.> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial> (having already talked to the Specialist nurse about it.>> Sorry if I've waffled on,> Take care everyone,> Steve

[Guest guest]

Hi Steve,

Sorry to hear the news. Here in the UK you can get on a study called TRAPEZE

that will probably suit your needs as best as medical science can in the case of

advanced PC. They (the study coordinators near you) will probably insist you be

on ADT (zoladex). After that you will be offered chemo in the form of docataxel,

plus systemic radiotherapy in the form of 89-Strontium. It is a pretty good

combo for advanced disease, and you do not have to wait until you are CRPC to

get on the books.

Best of luck!

Sam.

>

> Hello to all in the group.

> My name is Steve Keel living in Somerset England and at the age of 54 I've

> just been diagnosed with PC.

> My initial PSA (following a visit to the local doctor's surgery, approx 5

> weeks ago) was 710. Everything was pretty speedy from then on - I was referred

> to the Urology dept. in Bath RUH and was told that in all likelihood I had

> advanced and probably aggressive PC.

> The way it was handled was extremely good - A Macmillan nurse explained

> everything and made sure I had literature to read up about all the jargon,

> tests, etc..

> I then had an appointment with a consultant who did a rectal examination and

> explained to me that the likelihood was that I had advanced PC.

> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a

> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the

> 12 I had been expecting but apparently that wasn't necessary.

> Results came a bit less than a week later, confirming what I had been led to

> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.

> A bone scan was next on the list - apparently they just call them Nuclear

> Medicine scans ( an injection of radioactive tracer) - the technician then

> sent me straight down to Radiology for an X-Ray.

> Next was the CT scan.

> Pretty obvious to me by now that there was indeed metastases in the bones.

> Talking to the Macmillan nurse she explained that there appeared to be

> extensive metastases in the bone and possibly in some lymph nodes though the

> CT showed no evidence of tumours in the lungs, liver or kidneys.

> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial

> (having already talked to the Specialist nurse about it.

>

> Sorry if I've waffled on,

> Take care everyone,

> Steve

>

[Guest guest]

sammy_bates wrote:

> Sorry to hear the news. Here in the UK you can get on a study

> called TRAPEZE that will probably suit your needs as best as

> medical science can in the case of advanced PC. They (the study

> coordinators near you) will probably insist you be on ADT

> (zoladex). After that you will be offered chemo in the form of

> docataxel, plus systemic radiotherapy in the form of

> 89-Strontium. It is a pretty good combo for advanced disease,

> and you do not have to wait until you are CRPC to get on the

> books.

>

> Best of luck!

I agree with all of that. It sounds like a very aggressive

therapy that may give you your best chance for a long remission.

sammy_bates wrote:

> ... although if you are not symptomatic you may wish to just

> stick with ADT: ...

I agree with that too. ADT alone is a more conservative

approach. Chemotherapy is more toxic and therefore has more side

effects. Radiation also has side effects. Some doctors argue

that a patient should take the least toxic treatment that helps

him, at least until it stops helping.

I'm not qualified to say which approach is better. I'm not sure

anyone is since the use of these combination therapies is fairly

recent and the long term results are not available yet.

What I would do if I were you is call the study sponsors and ask

1) does it look like you might qualify to participate in the trial

and, if so 2) can you meet with them to discuss it.

My experience of clinical trials in the U.S. has been extremely

positive. The doctors I met were particularly knowledgeable and

they care they extended was very good.

> Treatment for all advanced prostate cancer is indeed

> " palliative " and a " cure " is not offered - not yet anyway.

I agree with the idea expressed here though " palliative " may not

be the best word. Purely palliative therapy is therapy intended

to reduce pain and/or improve quality of life, without affecting

the disease. For example, the administration of pain killers is

purely palliative therapy. Bone radiation treatments can be

purely palliative if they reduce bone pain but don't extend life,

though they can actually extend life in those cases where

metastases in the bones is what would actually kill the patient,

as opposed to the usual killers - metastases in vital organs like

the lungs, liver, brain, heart, etc.

It was once thought that ADT doesn't extend life and was purely

palliative, but I understand that it is now believed that it

does extend life. Chemotherapy is also believed to extend life

and radiation in the bones has been shown, in some circumstances,

to extend life. So I don't think we should call these treatments

purely palliative.

I'm hoping that getting all of the above will have a synergistic

effect. The ADT will kill off some cancer cells and weaken

others. The chemo and radiation also kill of cancer cells and

weaken others. Perhaps the combination will enable many of the

cells that would only have been weakened by one of the therapies

to be killed by the combination.

But, I'm not the expert. I recommend you call the people running

the trial.

Best of luck.

Alan

[Guest guest]

Hi Steve. I am very sorry to hear about your diagnosis. My thoughts and

prayers are with you. This is really a great group - I hope you keep us posted

on how your are doing.

Sandy

>

> Hello to all in the group.

> My name is Steve Keel living in Somerset England and at the age of 54 I've

> just been diagnosed with PC.

> My initial PSA (following a visit to the local doctor's surgery, approx 5

> weeks ago) was 710. Everything was pretty speedy from then on - I was referred

> to the Urology dept. in Bath RUH and was told that in all likelihood I had

> advanced and probably aggressive PC.

> The way it was handled was extremely good - A Macmillan nurse explained

> everything and made sure I had literature to read up about all the jargon,

> tests, etc..

> I then had an appointment with a consultant who did a rectal examination and

> explained to me that the likelihood was that I had advanced PC.

> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a

> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the

> 12 I had been expecting but apparently that wasn't necessary.

> Results came a bit less than a week later, confirming what I had been led to

> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.

> A bone scan was next on the list - apparently they just call them Nuclear

> Medicine scans ( an injection of radioactive tracer) - the technician then

> sent me straight down to Radiology for an X-Ray.

> Next was the CT scan.

> Pretty obvious to me by now that there was indeed metastases in the bones.

> Talking to the Macmillan nurse she explained that there appeared to be

> extensive metastases in the bone and possibly in some lymph nodes though the

> CT showed no evidence of tumours in the lungs, liver or kidneys.

> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial

> (having already talked to the Specialist nurse about it.

>

> Sorry if I've waffled on,

> Take care everyone,

> Steve

>

[Guest guest]

Steve, we are keeping you in our prayers.

That is the norm over here in the UK Alan

Best wishes Steve

I'm in Yorkshire somewhat north of you.

A new member with advanced and aggressive PC

>says hi

>

> Hello to all in the group.

> My name is Steve Keel living in Somerset England and at the age of 54 I've

> just been diagnosed with PC.

> My initial PSA (following a visit to the local doctor's surgery, approx 5

> weeks ago) was 710. Everything was pretty speedy from then on - I was referred

> to the Urology dept. in Bath RUH and was told that in all likelihood I had

> advanced and probably aggressive PC.

> The way it was handled was extremely good - A Macmillan nurse explained

> everything and made sure I had literature to read up about all the jargon,

> tests, etc..

> I then had an appointment with a consultant who did a rectal examination and

> explained to me that the likelihood was that I had advanced PC.

> My next appointment was at the TRUS clinic (Trans Rectal Ultrasound) about a

> week later and had 4 biopsy samples taken. I was a bit surprised it wasn't the

> 12 I had been expecting but apparently that wasn't necessary.

> Results came a bit less than a week later, confirming what I had been led to

> expect - Adrenocarcinoma of the prostrate with a Gleason of 4,5 =9.

> A bone scan was next on the list - apparently they just call them Nuclear

> Medicine scans ( an injection of radioactive tracer) - the technician then

> sent me straight down to Radiology for an X-Ray.

> Next was the CT scan.

> Pretty obvious to me by now that there was indeed metastases in the bones.

> Talking to the Macmillan nurse she explained that there appeared to be

> extensive metastases in the bone and possibly in some lymph nodes though the

> CT showed no evidence of tumours in the lungs, liver or kidneys.

> I'm in to see the consultant on Tuesday, perhaps I will be put on a drug trial

> (having already talked to the Specialist nurse about it.

>

> Sorry if I've waffled on,

> Take care everyone,

> Steve