Stampede Arm J my update

User

Posted 16 Aug 2017 at 06:06

Hi Glyn
Yes I agree with what Lyn says
My own PSA has varied between .04 and .07. Strangely my .07 readings also had a high bone phosphate reading which went back into spec later.
I don't worry about such variations.
Paul

User

Posted 16 Aug 2017 at 15:29

Hi Healey and Lyn

Thanks very much for your responses makes me feel a lot better. My hospital measures 0.003 as the lowest measure able so above that is an increase. It is obvious that different hospitals work differently when measuring PSA levels. You all know that when something changes and although I am very laid back - horizontal my wife says - the old mind goes into overdrive and it's the end lol. Next blood test 3 weeks Monday so will see how it pans out. Once again many thanks.

User

Posted 16 Aug 2017 at 15:34

Hi Paul ,garys doing really well with treatment ,mainly just fatigue .he's still getting up at 6am every morning to go to work .
Since having our two gorgeous grandsons Gary seems to have got renewed energy . I think I'm with you as in pushing for a scan update even just for my mental wellbeing ! Gary never asks questions unlike me .
I've booked two holidays ,one in October sailing the med which Gary will have to relax on and a transpacific cruise in April which I've had many a sleepless nights over as have I booked to far ahead . Are your bloods only taken every 3/4 months because of the trial ending ?
Keep us updated on your progress
Best wishes
Debby

User

Posted 16 Aug 2017 at 20:33

Hi Debbie

I hope you enjoy your seafaring trips.

We've just done (April) a transpacific from Sydney to San Francisco and we both enjoyed it. Now planning Our next grand adventure.

When I first started on Stampede the blood tests and appointments were about every week but as time went they rose to 2 weeks then 1 month , 2 months. This year they have been 12 weeks but now they are up to 4 months.

My Onco is very helpful with agreeing appointments to suit our holiday arrangements as we can be abroad for long periods. In fact I' get blood tests and Prostap injections abroad sometimes.

I think my Onco is happy with all the results and so is happy to extend the time between appointments.

6am Work? What's that 😱

Paul

User

Posted 16 Aug 2017 at 21:24

Thanks for that info ,our trip is Tokyo to Vancouver stopping at Russia ,not looking forward to the flights but Heyho will be worth it.
Best wishes
Debby

Edited by member 17 Aug 2017 at 04:42 | Reason: Not specified

User

Posted 17 Aug 2017 at 09:20

Hi Debby

Pleased to see Gary is coping well and still working. It really is best to keep active and positive. Holidays are essential we have recently had a cruise in the med. and also a week in Corfu. We are off on a short break in this country next month. Just a piece of info. for you - I don't know who you use for travel insurance but it can be expensive. We use " Insurancewith " who are very reasonable. You can find them online but it is best to ring them - bit of a wait - they do ask a lot of questions lol. The company was started by a lady who had cancer but could not get insurance - the staff are well trained, polite and helpful. Hope you don't mind me passing on this info. All the best to you and Gary.

User

Posted 17 Aug 2017 at 15:57

Hi Glyn thankyou for info ,at the moment I'm with nationwide flex plus account which is £10 a month ,when I told them garys info they charged us just £129 extra a year world wide .but if it gets to expensive then I will certainly give it a try .
Hope all of your treatment is going well .
Enjoy your next holiday
Best wishes
Debby

User

Posted 18 Aug 2017 at 05:21

My wife has travel insurance as part of her current account which also covers me.
We've kept them informed of all my conditions.
We've just added angina and the cost has just gone up to £140 per year.

User

Posted 20 Aug 2017 at 19:06

I had insurance with my account at Lloyds but they would not cover me - not Lloyds fault it was Axa who provided the cover.

User

Posted 01 Mar 2018 at 09:13

Still pretty good news on the Stampede Trial I'm still on

It's now 37 months since I started on enzalutamide plus the standard Ht (Prostap) with a psa of 235.

I've just been for my quarterly review and my psa is still at .06 so fingers crossed the cancer is still under control.

My onco asked if I still want to carry on with the trial. I'm of the opinion that if it works don't try to fix it so am staying on.

I'm now going onto 6 monthly consultation which is great. It means I only get apprehensive twice a year.

I hope this helps folk starting on the journey.

Paul

User

Posted 01 Mar 2018 at 09:45

Congratulations.

Thank you for the update Paul.

They are always good for giving people a lift

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

User

Posted 01 Mar 2018 at 09:57

Great news Paul.

If life gives you lemons , then make lemonade

User

Posted 01 Mar 2018 at 13:21

That’s very encouraging news Paul. Best wishes, Ian.

Ido4

User

Posted 01 Mar 2018 at 16:56

Great news as Gary’s on the same trial ,as with you he’ll being staying on it all the time it keeps it under control .
Not sure about the 6 monthly app after going every 8 weeks it sounds a bit scary !!
Best wishes
Debby

User

Posted 01 Mar 2018 at 18:27

Hiya Paul,

This is really good news mate. I'd certainly greet 6 monthly appointments with positivity, especially when you can put apprehension on hold and relax in that knowledge. Plus....springtime will soon be upon us to make a lot of us feel better. Take care.

Paul

User

Posted 01 Mar 2018 at 20:31

That's wonderful news, Paul. You deserve it.

User

Posted 01 Mar 2018 at 23:30

Great news Paul. Am also on stampede trial arm J. Now 36 months on HT Zoladex, enzalutimide and abiraterone. PSA reading still undetectable. There are obviously big differences area to area as I have not seen my onco since I was diagnosed. Also I have blood test every 4 weeks and attend clinic every 4 weeks and complete a “lifestyle” questionnaire every 3 months. Like Debby I don’t think I would be happy with 6 monthly appts. You would think as this is a clinical trial that all hospitals would follow the same procedures but it is obvious from the posts on this site that they don’t.

User

Posted 02 Mar 2018 at 11:46

Gary currently has 4 weekly blood tests with onco every 8 ,and as with Glyn fills in a lifestyle questionnaire,as well as extra bloods and mouth swabs going to the trial for research (DNA I think) .he had been told that he will eventually be on 3 monthly then 6 monthly onco apps but not really sure if the blood will continue to be taken every 4 .its a couple of months till the 2 year trial milestone so maybe that’s when it will change .
Best wishes to all on trial and it’s great to hear follow ups
Debby

User

Posted 02 Mar 2018 at 19:38

Thanks everybody for your inputs.
Seems like this trial is having some good results
I've likewise had the mouth swab for a DNA project and complete a questionnaire every visit.
I see the increase of the time between consultations as a show of confidence from the onco and her team.
I understood that the clinical trial actually only ran for 2 years but one can continue on the medication till they stop working or decide to cease taking due to the side effects.
I was told I could reduce the dosage of enzalutamide but couldn't then go back to a full dose so I decided to continue as is. I might review this agin in 6 months

How is everyone handling the side effects
Mine are 3 hourly hot flushes which last about 1-2 minutes.
Loss of strength in legs
Tiredness

What about exercises
I'm trying to get back to jogging/running but at the moment just hike 6/10 miles twice a week
Nikon Steve and irun are my inspiration

Edited by member 03 Mar 2018 at 09:52 | Reason: Not specified

User

Posted 02 Mar 2018 at 20:32

Gary still working full time and suffers with fatigue but finds that working does help keep him going ,as for flushes he still gets them daily but strangely after I moaned about having to change the bedding more often he started to wear PJ’s and has found they’ve stopped at night !! Only gets really hot feet .a small price to pay for the results he’s getting at the moment ,long may it continue
Debby

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