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Choosing to take part in trials

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User
Posted 26 Mar 2015 at 13:06

Hi, this is my first post. I am feeling a bit lost to be honest.  My lovely Dad was diagnosed with prostate cancer in 2004 and has been fortunate to have been offered lots of different but effective treatment which has controlled it until recently.  He was advised by his Consultant that they now now longer have anything to offer him.  This came as a shock to us.  We were lucky enough to be referred to the Royal Marsden who felt that there may be options but a CT scan has shown the cancer is not only in his bones but also his liver.  The Royal Marsden may be able to offer Phase 1 clinical trials but as it's a 9 hour round trip, it would be a huge commitment for our family.  I don't want to feel like we have given up and are just waiting for what seems to be inevitable but I don't want to commit my Dad to something that may give him quantity rather than quality of life.  Has anyone been in our shoes and how did they decide what to do? Thanks.

User
Posted 26 Mar 2015 at 18:40

Hi,

This is a difficult one and the decision must be made by your father with input from family. To help him make this decision, I would find out as much as possible about the trial and how often he would have to attend the Marsden. Maybe some monitoring could be done by way of a telephone appointment with some aspects like PSA testing done locally. This is the arrangement I have with the Marsden as I am down in Devon, though I did have to have a special MRI scan done at the Marsden quite recently and although monitored by them I am not taking part in a trial under their auspices. However, the Marsden have referred me to University College London Hospital who are doing a study (trial) for men who have failed RT by treating them with either Cryotherapy or HIFU. I have been told I will be accepted into the study provided 3 kinds of scans show no spread. My situation is therefore rather different but I am still having to travel from Devon to London for these scans and hopefully for the operation and will doubtless have to return to UCLH for check ups. Close monitoring is part of the package and you take part in what may turn out to be beneficial and advanced treatment but only time will tell.

Barry
User
Posted 26 Mar 2015 at 20:48

Very difficult as Barry says but something many of us will have to face at some point.

As you probably know Phase one trials are right at the experimental end where a med has been put forward for trial but correct dosage and side effects likely are unknown. There may be a placebo element - I don't know. Long way to go if ended up with placebo , so that would be first question.

As you are probably aware liver involvement is usually late stage & patients often look at months , not years ahead of them. Sorry to say it but that's the usual case.

What we don't know are your Dad's details : age, previous treatments, how long in the bones. If the diagnosis was very advanced in 2004 then he has done very well. How robust is he otherwise ?

 

Trials are important for testing new medications. Does your Dad want to help with this ?

User
Posted 27 Mar 2015 at 19:41

Might be worth checking that Diethstilbestrol +Blood thinner + Dexamethasone has been tried after chemo. Although an older treatment it has worked for some in a similar position. Not for that long I must add but certainly a reasonable response. And better than no treatments.

That is if you decide not to pursue the trial of course.

User
Posted 14 Apr 2015 at 21:40

Hi Michelle,

Yours is a difficult post to answer for many on here but I for one completley understand your dilema, we are also not in the cure camp and one day will be facing similar choices. Sometimes as you say should we choose quantity over quality, this would be a gruelling regime for even a young fit person but I am sure that you and your family will make the right choice. 

Thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2015 at 00:47

Hi Michelle, I think that even when the liver is affected and there is no treatment, the prognosis can be dramatically variable. I don't think it is gloomy to recognise that you could be moving in to the phase where it is really important to gather happy moments, memories that you can hug to yourself later, photos of the good days. It is also important to keep saying the things in your heart - to leave no loving words unspoken and nothing to regret later. You mention that dad still looks well and so perhaps he will be with you for many months yet - I do hope so as a beautiful summer will give you lots of opportunities to do things as a family and store up those special times.

If not already considered, do ask the nurse about a referral to your local hospice (many offer day services, drop ins, massage & aromatherapy as well as counselling & emotional support for you and if needed later, the all-important specialist pain relief that hospitals sometimes struggle to manage well) or Macmillan nurses. Financial advice might be useful to dad - has he arranged his will, for example? And this may sound harsh but have you talked as a family about end of life care? In my experience, it is much easier to talk about this early on, long before you get to the stage where it would be frightening to the person who is ill ... staying at home, being in a hospice - some people have quite strong views and not necessarily the same ones as their closest family members.

Difficult times but perhaps not imminent - be strong

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

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User
Posted 26 Mar 2015 at 18:40

Hi,

This is a difficult one and the decision must be made by your father with input from family. To help him make this decision, I would find out as much as possible about the trial and how often he would have to attend the Marsden. Maybe some monitoring could be done by way of a telephone appointment with some aspects like PSA testing done locally. This is the arrangement I have with the Marsden as I am down in Devon, though I did have to have a special MRI scan done at the Marsden quite recently and although monitored by them I am not taking part in a trial under their auspices. However, the Marsden have referred me to University College London Hospital who are doing a study (trial) for men who have failed RT by treating them with either Cryotherapy or HIFU. I have been told I will be accepted into the study provided 3 kinds of scans show no spread. My situation is therefore rather different but I am still having to travel from Devon to London for these scans and hopefully for the operation and will doubtless have to return to UCLH for check ups. Close monitoring is part of the package and you take part in what may turn out to be beneficial and advanced treatment but only time will tell.

Barry
User
Posted 26 Mar 2015 at 20:48

Very difficult as Barry says but something many of us will have to face at some point.

As you probably know Phase one trials are right at the experimental end where a med has been put forward for trial but correct dosage and side effects likely are unknown. There may be a placebo element - I don't know. Long way to go if ended up with placebo , so that would be first question.

As you are probably aware liver involvement is usually late stage & patients often look at months , not years ahead of them. Sorry to say it but that's the usual case.

What we don't know are your Dad's details : age, previous treatments, how long in the bones. If the diagnosis was very advanced in 2004 then he has done very well. How robust is he otherwise ?

 

Trials are important for testing new medications. Does your Dad want to help with this ?

User
Posted 27 Mar 2015 at 10:35

Many thanks for the replies.  Dad is 73 and seemingly fit and healthy to an outsider.  This has probably made it harder for us as he was only really unwell when he had chemo and that was for a week after each dose.

He's had everything that was going at the local hospital including Xtandi, Abiratone and three lots of chemo.  I don't have a complete list of everything but we were told by his consultant that he has had more than the average patient.

It came as a shock that we had run out of treatments but I am cautious about the trials.  It's selfish but maybe we are looking at quality over quantity of life.

We are trying to find out more about what trials may be considered and what his commitment would be.

Michelle

 

User
Posted 27 Mar 2015 at 19:41

Might be worth checking that Diethstilbestrol +Blood thinner + Dexamethasone has been tried after chemo. Although an older treatment it has worked for some in a similar position. Not for that long I must add but certainly a reasonable response. And better than no treatments.

That is if you decide not to pursue the trial of course.

User
Posted 14 Apr 2015 at 10:56

Just thought I would add what seems like the final part to the discussion. Spoke to one of the Dr's at the Royal Marsden who explained that his cancer is extensive and that the blood test taken on our visit showed abnormalities which they would anticipate would now be worse. They may be able to offer early stage trials but it would be 2 to 3 visits a week for 2 to 3 months.

Dad felt that this was too much travelling for him so declined. He is still hopeful that something might become available and I'm glad he's optimistic but my glass is half empty and I am worried about how long we have him for and am watching him for any signs of decline.

It's tough at the moment, don't know what to say to family and friends as I don't know if I am doom and gloom unnecessarily or whether I am being unrealistic. Trying to get hold of his cancer nurse for an update though and am hoping that might make things clearer.

User
Posted 14 Apr 2015 at 21:40

Hi Michelle,

Yours is a difficult post to answer for many on here but I for one completley understand your dilema, we are also not in the cure camp and one day will be facing similar choices. Sometimes as you say should we choose quantity over quality, this would be a gruelling regime for even a young fit person but I am sure that you and your family will make the right choice. 

Thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2015 at 00:47

Hi Michelle, I think that even when the liver is affected and there is no treatment, the prognosis can be dramatically variable. I don't think it is gloomy to recognise that you could be moving in to the phase where it is really important to gather happy moments, memories that you can hug to yourself later, photos of the good days. It is also important to keep saying the things in your heart - to leave no loving words unspoken and nothing to regret later. You mention that dad still looks well and so perhaps he will be with you for many months yet - I do hope so as a beautiful summer will give you lots of opportunities to do things as a family and store up those special times.

If not already considered, do ask the nurse about a referral to your local hospice (many offer day services, drop ins, massage & aromatherapy as well as counselling & emotional support for you and if needed later, the all-important specialist pain relief that hospitals sometimes struggle to manage well) or Macmillan nurses. Financial advice might be useful to dad - has he arranged his will, for example? And this may sound harsh but have you talked as a family about end of life care? In my experience, it is much easier to talk about this early on, long before you get to the stage where it would be frightening to the person who is ill ... staying at home, being in a hospice - some people have quite strong views and not necessarily the same ones as their closest family members.

Difficult times but perhaps not imminent - be strong

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

 
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