Newly diagnosed - Stampede trial - Being diagnosed with prostate cancer

User

Posted 26 Jan 2016 at 12:22

I suppose my journey began in August 2012 when I had a DRE followed by a blood test which revealed a PSA level of 3 which was ok for my age at the time. I am now 61 but was 58 then. My GP diagnosed an enlarged prostate and prescribed Tamsulosin Hydrochloride which I have been taking ever since.

Towards the end of 2015, my brother,who is 10 years older than me,advised that he had just been diagnosed with Advanced Prostate Cancer with a PSA level in the 3,000s. I thought I'd better have my PSA checked, although there had been no change in my symptoms. and was staggered when I was told my PSA was 26.1 and I was referred for further tests, MRI scan. Bone scan and biopsy.

On Christmas Eve I was advised that I had Locally Advanced Prostate Cancer which was treatable but not curable. All ten samples taken at the biopsy were positive for cancer and my Gleason Score was 4 + 5 = 9. the cancer had spread to both sides of the pelvic area and into the seminal glands. The cancer was classed as T3b.

I was given Cyproterone tablets to start taking immediately and as I was off to Tenerife on holiday on 27th December I was advised not to drink alcohol which as you can imagine is difficult when your world has just been turned upside down.

I had my first Prostap injection, 3 monthly dose, on 13th January and was yesterday offerred a place on the Stampede trial.

As my disease is non metastatic there are only two options available to me. one is basically the standard treatment and the other one is standard hormone therapy with Abiraterone and Enzalutamide. I would be particularly interested to hear from people who are currently on this arm of the trial for their experiences to date. My initial thoughts are to stay with the standard treatment having discussed the matter with my family.

Any help would be greatly appreciated.

Mick 1954

User

Posted 26 Jan 2016 at 12:28

Hello Mick and welcome although I'm sorry to see you here.

I have no personal knowledge of the hormone therapies but I do not that a number of other have and I also know they will be happy to advise you so please wait until somebody comes along.

In the meantime, all the best. You've come to the right place.

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 26 Jan 2016 at 14:32

Hello Mick

I had a diagnosis similar but not exactly the same as yours. I was diagnosed with Locally Advanced Agressive Prostate Cancer which had spread outside of the prostate. T3b NO MO Gleason 8 TRUS biopsy shows right lobe 2/3 cores involved Gleason 4+4=8 and left lobe 3/3 cores involved Gleason 4+4=8. Gleason score 8 both lobes, PSA 408. MRI scan shows large tumour invading left half of gland with ECS and bilateral SV invasion and bilateral hydronephrosis no enlarged lymph notes Bone scan normal. TRUS volume 34cc DRE. Had Tamsulosin then started Hormone Therapy (Prostap) injections in Janary 2013.

I had a TURP operation as I had a catheter fitted for a while, followed by 37 sessions of radiotherapy.

Have a look at my full profile and I hope this will encourage you.

Best wishes

Arthur

User

Posted 27 Jan 2016 at 10:03

Thanks Sandra and Arthur for your prompt responses.

Thankfully I have a wife who like you Sandra is very supportive and is going to be with me every step of the way. Even at this early stage I don't know what I would have done without her.

I was very interested to read your profile Arthur and it has given me some hope. I am delighted that things are going well for you three years down the line. I haven't had a PSA test since my original blood test on 16th November and as my next Prostap injection isn't until early April I'm wondering whether I should be asking for a further PSA test a little bit sooner. Its only two weeks since I had my first injection and to date I havent sufferred any hot flushes. Is it too early or am I just going to be lucky?

I look forward to following your respective journeys for many years to come.

Best wishes

Mick

User

Posted 27 Jan 2016 at 12:30

Hello Mick
I'm sorry you are here but you'll certainly get plenty of help and advice.

I was diagnosed in December 2014 with psa of 199 which up to 235 by the time the test results came in after Christmas. Gleason 3+4, staged T3a. The PC has spread to left pelvis and I was told that I could only have treatment to slow the growth. At that time I was worried stiff.
I started Prostap in January 2015 and agreed to participate in Stamped Trial. I was randomised onto group J which was Abiraterone and Enzalutamide. I had some bowel issues with the Abiraterone so with agreement of onco stopped taking it in March. I'm still taking enzaalutamide and Prostap. My psa has been bumbling along around 0.07 for the last 6+ months.
I have to say that the support from the stampede team has been excellent and the frequency of visits reassuring. They think I'm doing ok so have extended my consultation from 4-6 weeks to 12 weekly. I do have side effects which are not debilitating however more of a nuisance. The increased fatigue is more challenging.
I am eating very healthily (all organic, no red meat, dairy etc) and exercise frequently, my onco says that I am doing the right things.

Everybody is different however and Abiraterone for example has been very good for some even tho for me it didn't.

If you need fuller details please check my profile and if you've any questions at all please ask.

Paul

User

Posted 27 Jan 2016 at 21:36

Hi Paul

Very pleased to hear from you with your experience of Abiraterone and Enzalutamide and pleased to see that your PSA has come down so far. Your profile certainly makes interesting reading and you seem to have been having your PSA checked on a very regular basis. Was that because you were on the trial or were you asking them for it? Before my knees went, I ran the GNR 19 times. How I wish I was still able to.

I like the idea of the more intense monitoring from the Stampede trial but am concerned about the potential side effects of Arm J. I'm expecting a call from the hospital in the next day or so by which time I have to have made a decision. At this stage I'm still undecided but may ring the helpline for further advice. Were you told to avoid alcohol at all costs or were you still able to drink as previously. I'm certainly not a regular drinker but find a couple of pints helps to relieve the stresses of my recent diagnosis.

Thanks for your help and I'll continue to monitor your journey.

Best wishes

Mick

User

Posted 28 Jan 2016 at 00:27

Hi Mick

I started on the stampede trial arm J in June 2015. My Circumstances are different in that I have spread to lymph nodes and bones so my reasoning for going on the trial was to hit the cancer with as much as possible early on. While early days so far so good. I find the extra monitoring (every month at the moment) very reassuring. I'm normally seen by a specialist trial nurse but the oncologist is usually around if I have any questions. As far as side effects go its not been to bad at all just the usual hormone treatment stuff, I get a bit more tired than I used to, hot flushes every now then and muscles have got a bit weaker. As far as alcohol goes I was told if drunk in moderation it will not have any effect on the treatment, which suits me as I like a few beers at weekend :-)

I hope you find this useful, please look at my profile for my progress so far

User

Posted 28 Jan 2016 at 09:59

Hi Kenny

Your post is really helpful, thanks for that.

I am pleased to see you are making good progress with the treatment and that your PSA is now almost negligible. When I got my diagnosis on Christmas Eve, the thing that scared me most was when I was told it was aggressive, Gleason 4 + 5, but I notice that yours was the same yet your progress to date has been excellent. That gives me some hope.

Good Luck with your continued treatment. I'm sure we'll speak again.

Best wishes

Mick

User

Posted 28 Jan 2016 at 10:00

Dear Mick

Welcome to the site.

My OH was diagnosed in November 2011 with PSA 3.6 Gleason 3+4 T3b N1 M0.

He took part in the Stampede trial, which at that point was Arm G offering the standard treatment plus Abiraterone.

The standard treatment was Prostap and Radiotherapy.

Apart from taking a lot of pills every day, and the usual side effects of fatigue, weight gain, etc the trial was manageable.

It meant a lot of additional appointments which meant that a good relationship was built up between ourselves and the nurses/ oncologist. It also meant that any other 'niggles' we're sorted promptly at these appointments rather than having to go back to the GP. We found it most helpful to get advice straight from the specialist. Examples include regular bone scans ( to monitor any weakening from the hormone treatment ) and regular heart ECG tests etc plus some hearing tests when my OH had problems in that area.

Of course, I do not know if all hospitals are as thorough, but everyone that I have spoken to regarding the trial has stated that the levels of care have been high.

In terms of the Abiraterone, which was taken with a steroid, this caused my OH blood pressure to increase which he was given tablets for. His Potassium also started to get low so supplements of this were given. These issues were monitored carefully at appointments.

He took the Abiraterone for 2 years and continued on HT for 3.5 years.

If you have the time for the additional appointments, fortnightly then monthly then 6 weekly etc over a period of 2 years I would advise that you go for it! But of course everyone's circumstances are different and it is entirely up to you.

Remember that if you are not happy you can stop the trial at any time.

Best wishes with your decision

Alison

User

Posted 28 Jan 2016 at 12:05

Dear Alison

Many thanks for your post which is very helpful and, together with those from Paul and Kenny, has persuaded me that I'd be foolish not to give the Stampede trial a go. As you say you can opt out at any time and anyway I may just be randomised onto the standard treatment and not the Abiraterone and Enzalutamide arm of the trial.

Once again many thanks for your help.

Best wishes to you and your OH.

Mick

User

Posted 28 Jan 2016 at 17:12

Hi Mick

Good luck with the randomisation, let us know how you get on

Ian

User

Posted 28 Jan 2016 at 22:38

Mick
In answer to your questions the frequency of the psa checks is part of the Stampede monitoring, I've never needed to ask for any (other than my very first one pre diagnosis).
One of my side effects is weakening of muscles & fatigue which is affecting running.
Well done with completing 19 GNR's And sorry to hear about your knees. Me, I wish I'd started serious running much earlier in my life.

Best of luck with the randomisation and I hope you get the Group you want. Whichever you get at least you get the extra monitoring and that's what swung it for me.

Paul

User

Posted 28 Jan 2016 at 23:02

Hello
Just another point, I don't know if all blood tests are as detailed as the Stampede Trial blood tests but mine consist of 32 items in addition to my psa level. So if you drink too much it might show ias a raised liver condition measure (ALT or ALP). I also have blood count, kidney condition, bone profile etc. blood pressure, oxygenation frequently in first 6 months. I also requested addition items to be added and my onco agreed. I get copies of my blood results before I go in for consultation so I can understand what's happening and therefore ask the right questions.

It's not a piece of cake any of it but it's handleable. I still enjoy the odd pint and glasses of wine and bacon buttie and my life goes on.

Good luck again and do let us know

Paul

User

Posted 28 Jan 2016 at 23:44

Hi Paul/Ian

Thanks for your further comments.

A nurse from the trial rang me for my decision today and I confirmed that I had decided to go ahead. She reckons it will be two weeks before I get an appointment to go through the consent forms then a further few weeks before I get to know which arm I' ll be on. I asked her about how often my PSA would be checked and she indicated three monthly or more often at the Oncologist's discretion. I was a little surprised by that.

As regards drinking Paul I'm really not a big drinker. I can go weeks at a time without touching anything but on the odd special occasion or night out I have been known to partake of a few. My wife and I tend to spend 6/8 weeks abroad on holiday each year and on such occasions I would have a drink every day. The nurse did explain that my liver would be checked every fortnight or so for the first few months so I'll clarify what I can and can't do with her.

Best wishes

Mick

User

Posted 04 Feb 2016 at 10:36

Hi Mick

I joined the STAMPEDE trial (allocated Zometa) in March 2008 with advanced metastatic disease spread to bone (everywhere). Still here almost eight years later and living a fairly normal existence. Best decision I ever made http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User

Posted 07 Feb 2016 at 20:43

Hi Allister

You've had quite a journey to date having looked at your profile.

Thanks for your positivity it really helps.

All the best to you going forward.

Regards

Mick

User

Posted 22 Feb 2016 at 09:29

Hello all,

I started the Stampede trial at the beginning of January 2015 when after an MRI scan, I was diagnosed with advanced secondary bone cancer which was later confirmed as originating from the prostate. My cancer lives in my spine, ribs and shoulders. Apart from a persistent shoulder pain for the two years before diagnosis, I had no other symptoms. I am on Prostrap3 and after a round of radiotherapy sessions my psa dropped to 2.2 from its original 141. After a rise in my psa, I'm now having chemotherapy and that seems to be stable now at 15.

In the last thirteen months I have experienced all sorts of things, met all kinds of wonderful people and continue to be amazed at the care, progress and testimonials from everyone I meet on this journey.

Happy days!

Terry

User

Posted 22 Feb 2016 at 12:22

Dear Mick,

As you know, there are no certainties using PSA as a screening marker for prostate cancer but your story illustrates a particular worry those of us heavily involved with screening and early diagnosis have. With a PSA of 3 at age 58 many specialists would have recommended a PSA every year as you were right on the borderline of normality but this type of "specialist " knowledge is not readily available or understood in primary care. Hopefully the Prostate Cancer UK Consensus Statements and the updated Prostate Cancer Risk Management Programme due for launch in March will get this message across.

With yourself and your brother both having prostate cancer, you should aim to get any sons you may have into a prostate cancer screening programme from the age of 40.

Good luck with your treatment.

Chris

User

Posted 22 Feb 2016 at 20:29

Hi Chris

Thanks for taking the time to reply to my posts as its useful to hear the thoughts of a professional.

At the time of my first PSA test I was completely ignorant of what it really meant. However, following my brother's diagnosis in mid 2015 I did a lot of research to see what sort of future he faced- little realising at the time that the same future lay ahead of me. My thoughts as a layman were that as I was right on the PSA limit for a man of my age at 58, it would have been sensible to review it annually. I have, incidentally, been having blood tests every three months for the last few years as I had an ongoing problem with my iron levels.

However, I can't afford to dwell on the past and must focus all my energy on the future.

I have a son of 25 who I have made very aware of what he needs to do in the future although I hope that in 15 years Prostate Cancer will no longer be the killer it is today.

Once again thanks for your post

Best wishes

Mick

User

Posted 22 Feb 2016 at 21:26

You can do better than that Mick - encourage him to start thinking now about a prostate-healthy diet, reducing the amount of processed foods and red meat he eats, making sure that food isn't charred black on the barbecue, eating lots of tomatoes (preferably cooked so ketchup and pasta sauces are good) & garlic, and if he is really up for it, oily fish! I have changed our son's diet dramatically, bit by bit - the only thing i am losing a battle on is milk & cheese - he just loves his dairy stuff :-(

Our onco and surgeon - and my gastro-enterologist - all say that the only way we are going to eradicate PCa is to change the diets of 5 year old boys. But 20 years late is better than never!

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

User

Posted 25 Feb 2016 at 14:09

Lyn - You have really given me food for thought there.

I have 2 young boys aged 7 and 4 and their daddy most likely had PCa when they were conceived.

So I am going to take your Oncos advice and change their diets. Why not? it could only help.

One is allergic to dairy ( funny how that happened out of the blue ) so a good start for him, but will take all advice on board otherwise.

Thank you.

Alison

User

Posted 25 Feb 2016 at 18:46

Alison, if you haven't done so already, consider buying the prostate care cook book from Amazon, published by Prostate Cancer Research , a UK organisation. It is split into 2 sections - menus obviously but also some explanations of the research and how some foods protect or harm the prosate. What I liked about it was that these are scientists and it isn't too extreme.

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

User

Posted 03 Mar 2016 at 10:09

Hi Everyone

Following a meeting with my oncologist on Monday 29th February, my allocated nurse from Sunderland Royal Hospital has rang me today to advise that I have been allocated to treatment group J of the Stampede Trial which means the addition of Enzalutamide and Abiraterone to the standard treatment. I am now awaiting a further appointment when I will be giving additional information and commence the new treatment.

I had my first PSA check since diagnosis and was delighted to hear that it had dropped from 26.1 to 1.04 after just 7 weeks of hormone therapy. Needless to say, I am delighted with the result and feel the most positive I have felt since being diagnosed.

I will update people with how my treatment progresses but would like to hear particularly from others who are on this arm of the trial.

Thanks

Mick

User

Posted 03 Mar 2016 at 10:49

Thanks for the info Lyn.
Being a cheapskate, I've ordered a used copy from Amazon for a penny, plus £2.80 p&p.
New it costs 12.99.

Might have made a booboo mind you as we go away for a weeks holiday on Friday and it might not arrive until the Saturday. OOPS !
the other half will not be pleased if it's left on the doorstep for a week. Good job I'm on friendly terms with the neighbours.

We can't control the winds - but we can adjust our sails

User

Posted 03 Mar 2016 at 23:56

Hello Mick
i am on the same Stampede Group J as previously posted.
When I was selected I felt really relieved, I think it was because the decision had been made (and that it was the group I wanted). That coupled with the significant drop of psa made my day.
I'm now 14 months on though having dropped the abiraterone because of bowel issues.
The only side effects I have are hot flushes, loss of body hair and fatigue. I have no mood swings.
My wife helps me greatly by just treating things as being normal.
I don't think much about the disease and certainly don't let it get me down.
I'm still running though and generally run 7 miles every Sunday so it's not too bad. I've just done my first competition 10K of the year but must admit to struggling up the hills.

My last psa was about .07 I think and my next consultation (which have gone up to 3 monthly now) is in 2 weeks.

If I were to advise you I'd say just carry on as normal enjoy life and take it as it comes.

Keep posting or send me personal messages I'd be pleased to exchange my experiences as I follow the same path.

All the best
Paul

User

Posted 04 Mar 2016 at 12:55

Hi Paul

Nice to hear from you again.

Like you, I felt relieved when I was randomised onto the arm of the trial I wanted. I know you have spoken of the additional checks you receive but to date no one has mentioned these to me although I haven't yet started on the additional treatment. I believe I've been lucky as up to now the only side effects from the hormone treatment have been some tiredness issues and hot flushes haven't been an issue. Maybe the additional tablets will change that.

I'll keep in touch and continue to review your posts/profile as our journey continues.

Best of luck going forward

Mick

User

Posted 14 Mar 2016 at 20:10

Hi Alastair - just read your note - this gives me much hope for my husband diagnosed around Xmas time with much the same thing as you - he has just started STAMPEDE - arm j - with all good wishes - jackie

User

Posted 15 Mar 2016 at 12:04

My husband, Pete went on Stampede trial in October 2013 He had Gleason score of 3 +4 and PSA of 290. Went on to 3 monthly Prostap injections, then Casodex for3 months. PSA still going up, so started on Abiraterone in July 2014. PSA started to decrease then up again to 110. In July 2015. Had 2nd opinion at Marsden Hospital. Saw Professor de Bono, who recommnded he took Dexamethosone as well as the Abby's. PSA went down again. Main problem with steroids is weight gain and more tiredness. Otherwise quite well, although PSA creeping up slowly. So glad we went on trial. Fabulous specialist nurse and good monitoring. Hope this helps.

Edited by member 15 Mar 2016 at 12:06 | Reason: Not specified

User

Posted 16 Mar 2016 at 14:31

Hi Jenny, that is so useful and helpful. You are so kind to write to me - I have been in a whirl since diagnosis in December - first injection 24 December - what a Xmas time. He is settling down well - PSA originally 4,000n or so I nearly fell off the Chair when they told us - I told them he couldn't have it he has been too well looked after - am an old fashioned girl you see. Don't know what they thought of me. Anyway, PSA dropped to 76 which is wonderful and he is doing well on the drugs. Had bone scan yesterday he had to owing to the requirements of the Trial Drug people. Yes, our staff have been amazing too this end. Thank you again,

User

Posted 11 Sep 2016 at 20:57

Well, six months into the Stampede Trial, Arm J Enzalutamide and Abiraterone, my PSA is now down to 0.013. Other than developing high blood pressure as a result of the new tablets I haven't suffered any further side effects. I find tiredness the biggest issue but there are lots of people out there with far worse problems than that. Recently started RT and have completed 3 of 37 sessions at the Northern Centre for Cancer Care in Newcastle. Coping with the physical issues isn't too much of a problem but dealing with it mentally is a real struggle. I have days where I am completely overwhelmed by the disease and find it tough to cope although on other days I can feel quite positive. I suppose it's the uncertainty of everything which gets to me from time to time. Never mind the results have all been good so far so I'll concentrate on that. I do follow the stories on this site but tend not to post very regularly. I'll provide further updates as my journey with PCA continues.

Mick

User

Posted 11 Sep 2016 at 22:58

Hi Mick
It's good to hear from you again.
Good to see your low psa values but I'm sorry to hear you are struggling mentally with the side effects. Which ones are bothering you most or is it everything.
I've just posted my status on stampede J, I've done 20 months now just on the prostap and Enza tabs and am plodding along taking things as they come. For me that's the best way as I could really freak out if I thought too much about the worst cases. My wife helps tremendously.
I see you have high blood pressure. I'd ask your on I whether that could be due to the abiraterone cos mine said it can affect the heart whereas Enza doesn't. You can drop the abbi and stay on the trial, I did and felt much better for it.
How is it you are also having RT as my on one said I couldn't as long as I'm on the Stampede Trial. This might be something new.

At the moment I'm struggling with the hot flushes due to the high temperatures in southern France.
But hey in every hour I get 58 minutes without them to drink cold beer and enjoy the sun.

Paul

User

Posted 12 Sep 2016 at 17:20

Hi Paul

Nice to hear from you again and hope you are enjoying your break in France.

I think the whole cancer thing just gets on top of me from time to time. Twelve months ago I thought I had 20 years plus to enjoy my retirement and now I haven't a clue whether it might only be 20 months. It just washes over me occasionally and I wallow in self pity despite telling myself to be positive and enjoy every day. I've been told the high blood pressure is as a direct result of the Abiraterone so I've bought myself a blood pressure monitor to keep a check on things. I've also been prescribed Ramipril which seems to have done the trick. To be honest Paul other than the high blood pressure I've felt OK with both abi and enzo so will keep going with both as long as the good results continue.

I think RT is standard treatment in arm J if you are non metastatic which is what I'm told I am. I was told that a few years ago they wouldn't have considered RT with node involvement but the machines they use now can target the cancer more specifically than previously and with less damage to surrounding areas so hopefully less severe side effects. Fingers crossed on that.

I do keep a watch on your profile and will continue to do so. Good luck with everything going forward.

Mick

User

Posted 12 Sep 2016 at 17:52

Hi Mick,

It does take a long time to accept that we have cancer, I know I found it very hard going but in time it will get easier. Just remember that you are getting good treatment and lots can be done.

I hope RT goes well for you.

Keep in touch.

All the Best,

Steve

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