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Newly diagnosed - Stampede trial

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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 19:57

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 21:58

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 16:20

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 16:52

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

User

Posted 13 Sep 2016 at 16:44

Hi Steve

Thanks for the positivity. I've had a look at your profile and my journey to date has been a walk in the park compared to yours. I wish you all the best for the future and hope you have many years enjoying your grandchildren. I have two myself, a boy 3 1/2 and a girl whose nearly 6 months. Good luck.

Mick

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