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PC metastatic - stampede trials

User
Posted 09 Jun 2016 at 16:23

Hello all.  My 79 year father was diagnosed with PC last week, had the body scan Thursday and we were told yesterday that he has metastatic PC and offered the stampede trials.  The cancer has spread to his pelvis, ribs and lower part of his neck.  He has started the hormone tablets, but I would love to have any advise what so ever.  Dad is interested in the trials but says if his quality of life is affected, he says he has a great life now except for the pain, he would have second thoughts. It has been such a mad week and our heads are spinning, thanking you in advance.

User
Posted 09 Jun 2016 at 17:49

Hormone treatment helps slow the spread of PCa and often reduces the size of tumors. It works for varying lengths of time largely due to type of cancer and how the cancer cells respond to the considerable reduction of Testosterone on which they are dependent, at least for a time. The downside of this is that there can be various side effects to varying degrees which a man on HT should be prepared for. Some of these can mean becoming tired more quickly. muscle cramps, hot flushes, enlarged/tender man boobs nipples, loss of libido and possible ED, weight gain and mood swings. You don't know in advance how severely you will be affected and the symptoms can change over time as the body reacts. If the man boobs become painful or very enlarged sometimes a dose of RT is given to help counteract this aspect but generally there is not a lot that can be done to counteract other symptoms. It becomes easy to do very little but advisable to exercise as much as one reasonably can.

Some men on long HT have a break from it as may be considered appropriate (Hormone Holiday).

Trials mean you are better monitored as an individual and may benefit from treatment that is not generally available other than in the trial. If a patient so decides, he can withdraw from the trial if he finds the treatment or symptoms unacceptable. It comes down to priorities and personal choice.

Barry
User
Posted 10 Jun 2016 at 07:24
Hello

I would definitely consider the trial.

Your Dad will get extra appointments and get to know his care team well.

He will be given a random arm of treatment, some of which use some of the new drugs at the beginning of treatment as opposed to later in the disease. One arm includes the standard treatment ( which he is already getting).

If at any time your Dad feels unhappy he can leave the trial.

My husband had Arm G which was Abiraterone for 2 years plus a steroid, I think this arm is closed to new recruits now but there are plenty of others on here who have participated on other arms and I think the general consensus seems to be that it is worthwhile.

One of the findings on the trial was that early chemo benefited men with advanced disease so well, that some trusts now do it as standard.

Best of luck, this part now deciding is very difficult. Once you have a plan you will feel a little better.

All the best

Alison

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User
Posted 09 Jun 2016 at 16:42

Hi Winks

 

Sorry about your dad.

There are a LOT of guys (and girls) here that could help you and your dad a lot.  There is also other websites dedicated to Prostate Cancer (including a STAMPEDE website) that you can get info about treatments and options available on the NHS.

After you get over the shock......read and learn as much as you can about this bugger.  The MOST IMPORTANT thing is DON'T PANIC.

Also you will be amazed how much support and attention them nurses will give you on STAMPEDE! What trial was it?

Also...You didn't say how old you are.....my guess is around 50-60?  This should be an opportunity for YOU (if you are a Man) also....and to protect yourself for the future (Yearly PSA, Proactive Diet etc...).

This is a long journey...one small step at a time.

 

Regards

Edited by member 09 Jun 2016 at 16:43  | Reason: Not specified

User
Posted 09 Jun 2016 at 17:03

Hi Bill.

Thanks for your quick reply and the suggested websites, just ploughing through them all.  

Regards

User
Posted 09 Jun 2016 at 17:49

Hormone treatment helps slow the spread of PCa and often reduces the size of tumors. It works for varying lengths of time largely due to type of cancer and how the cancer cells respond to the considerable reduction of Testosterone on which they are dependent, at least for a time. The downside of this is that there can be various side effects to varying degrees which a man on HT should be prepared for. Some of these can mean becoming tired more quickly. muscle cramps, hot flushes, enlarged/tender man boobs nipples, loss of libido and possible ED, weight gain and mood swings. You don't know in advance how severely you will be affected and the symptoms can change over time as the body reacts. If the man boobs become painful or very enlarged sometimes a dose of RT is given to help counteract this aspect but generally there is not a lot that can be done to counteract other symptoms. It becomes easy to do very little but advisable to exercise as much as one reasonably can.

Some men on long HT have a break from it as may be considered appropriate (Hormone Holiday).

Trials mean you are better monitored as an individual and may benefit from treatment that is not generally available other than in the trial. If a patient so decides, he can withdraw from the trial if he finds the treatment or symptoms unacceptable. It comes down to priorities and personal choice.

Barry
User
Posted 10 Jun 2016 at 07:24
Hello

I would definitely consider the trial.

Your Dad will get extra appointments and get to know his care team well.

He will be given a random arm of treatment, some of which use some of the new drugs at the beginning of treatment as opposed to later in the disease. One arm includes the standard treatment ( which he is already getting).

If at any time your Dad feels unhappy he can leave the trial.

My husband had Arm G which was Abiraterone for 2 years plus a steroid, I think this arm is closed to new recruits now but there are plenty of others on here who have participated on other arms and I think the general consensus seems to be that it is worthwhile.

One of the findings on the trial was that early chemo benefited men with advanced disease so well, that some trusts now do it as standard.

Best of luck, this part now deciding is very difficult. Once you have a plan you will feel a little better.

All the best

Alison

 
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