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Very Frightened

User
Posted 25 Nov 2014 at 21:43

Wow what a bad year old fruit, sympathies.
Just a note about "Stampede"; it has been running in several countries for several years. A computer program assesses your current state of health & fitness, and allocates you to one stream of treatment appropriate to how much your body can stand.
From the statistics of the results, they hope to define the 'gold standards' treatment for various stages of the disease.

So, whatever happens, you contribute to those in the future, you are advancing medical knowledge; you owe that to your fellow man (who may be your son or grandson). It helps you feel useful at least!

I believe some arms of the trial are closed (that is, they have enough to make statistics meaningful), so A, B,C are done already, maybe further now I don't know.

I was enrolled last year on Trial H, which is the fairly routine hormones followed by external beam X-rays, followed by hormones which have been added to due to a small PSA 'Bounce' about 18 months after diagnosis. There are I think other arms to the trials, and there are indeed other trials altogether being run.

One thing's for sure; if my tiny numerical contribution helps to give someone's son (possibly mine) to have an easier time in a few year's time, then my work here is done. Meantime, the extra attention one gets from experts and researchers whilst on the scheme is reassuring.

By the way there is also a genetic survey going on, ask about it, it is only a questionnaire and you have to try and recall all your family history and so on. Doesn't matter you can't remember everything, you just do what you can and as well send a couple of simple swabs of in the post (so they can read your own DNA).

Just being 'useful' can be a lift, go for it and feel smug, it all helps the reality.
Best wishes,
b0b

User
Posted 26 Nov 2014 at 07:25

My OH was on the Abiraterone arm of the STAMPEDE trial and finished the 2 years trial length in the summer.


It did not include the Xtandi though.


It is difficult to say exactly which symptoms came from which drug, be he had low potassium levels due the Abi (and had to take tablets to counteract it. This was monitored very carefully as potassium affects the heart) and also the Abi caused high bp so he had to take tablets to lower that too.


The prednisolone caused the usual steroid type side effects, weight gain and feeling hungry.


My OH found the Abi difficult to swallow too.


Tiredness etc and the usual other effects of the hormones (weight gain, loss of libido).


It was reassuring to get the additional monitoring of the trial though and the 2 years which seemed to have flown by.


I will help with any further information if I can.


All the best


Alison

Edited by member 26 Nov 2014 at 21:18  | Reason: Not specified

User
Posted 26 Nov 2014 at 16:54

I have no experience of Xtandi but I've been on abiraterone and prednisolone for several months, which supplements continued Zoladex.  The abiraterone works, to my perception quite gently and because I have some residual PCa in my urethra, I'm able to see the evidence of shed dead PCa cells from time to time.  The PSA reduction and maintence at a low level is further proof that the stuff works (for me at least).  I can honestly say that the newer two drugs have had no side effects at all.  There is a tendency to weight gain with the steroid, I understand, because it stimulates appetite.  However all of us with PCa and on HRT are wise to keep our diet under control, take plenty of exercise and make sure we don't gain weight.  I've managed to lose 10 lbs in the past six weeks so I know that weight gain is NOT inevitable and that with the willpower weight loss is possible.


We are all different and the only rule with PCa is that there are no rules, so good luck with your choices in  the challenges ahead.


 


OC in Northants

User
Posted 05 Feb 2017 at 11:14
What is the one to one service please?
User
Posted 05 Feb 2017 at 17:08

PenP, It might help your question if you take the quote from the answer you are looking at.


I don't know to what you are referring


 


PS. Have found what I think you were referring to below


 


Quote "Give the clinical nurses a call and also as to speak to the one to one service. The clinical nurses will ask you for more info and they will get someone who is a close match to yourself to call you and you can talk through things.  The important things is you are not alone. The One to One service  is fabulous and the guys on there will keep in touch and help you through this, as will the nurses on the helpline. Ask them to send you a copy of the toolkit."


 


It presumably means that dad, if he wants to, can speak to somebody personally and get some first hand knowlege on how the other person deals with his condition.


 


Hopefully somebody else will be along to either confirm (or shoot me down in flames http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif)

Edited by member 05 Feb 2017 at 17:14  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Feb 2017 at 17:57

Well done Johsan, I looked back over the thread and couldn't find it!

Assuming that is what you were asking about PenP, you can call the nurses at the number on this website 0800 074 8383 and they can put you in touch with someone that has been in a similar situation to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jul 2018 at 09:54

Using complementary or alternative medicine instead of scientifically-based treatment can be an extremely dangerous thing to do. See this article for more information:


https://scienceblog.cancerresearchuk.org/2018/07/20/mixing-complementary-therapy-with-standard-cancer-treatment-could-affect-survival/

User
Posted 20 Jul 2018 at 12:35
Certainly some alternatives to standard approved medicine and procedures may alleviate pain and calm people down but for PCa should not be considered alternatives to the medically approved ones. Indeed, there is a possibility that they may work against rather than with some medically prescribed treatments. If anybody is contemplating complementary medicine it would be well to discuss this with your consultant. Relying on alternative medicine could be dangerous.
Barry
User
Posted 20 Jul 2018 at 13:28

Interesting article in today’s Times headed “ Cancer deaths higher among users of alternative therapies “ from Cancer Research UK. In particular it cites that patients considering alternatives should regard them as complimentary therapies not as alternatives to conventional treatments 

User
Posted 20 Jul 2018 at 13:32

I see that you are living in the Netherlands and that you are interested in prostate cancer rather than having someone being diagnosed as having prostate cancer so perhaps your viewpoint may be a little less relevant perhaps? 

User
Posted 20 Jul 2018 at 14:27
Reported as spam
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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