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Ever Decreasing Circles part three

User
Posted 20 Jan 2015 at 12:33
Very good to hear Paul, keep it up xx
User
Posted 20 Jan 2015 at 12:43

Brilliant news Paul, Trevor did very well on the Casodex bearing in mind his high starting point at 13000 going down to 15 so if it works like that for you and it looks like it might then you should be in the 0000 before you no it.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2015 at 12:51
Brilliant news Paul. I added Casodex to the mix a month ago and also enjoyed seeing an 83% decline in PSA. Long may all therapy permutations help each one of us!
User
Posted 20 Jan 2015 at 13:19

Thanks Steve, Allison, Bri Bazza and Paul for the kind words, I have been pleasantly surprised by this.

Si, I was asked by the dietician to tell her what I ate the previous day, thank goodness I had beans on toast last night. Loads of succulent roast lamb, roast potatoes to die for, roast veg, Yorkshire pudding, rich gravy etc etc may not have gone down well. She said I should try using a smaller plate, I would have needed thre plates to balance that wonderful meal!

Julie, that was an amazing drop for Trevor, so I feel better about casodex now than I did when I started. I was (am) concerned about its negative press and increasing side effects but two weeks in I have not noticed any difference.....yet. I have calculated that if I have the same proportional response it will be a very small number indeed. Lowest I got was 1.56 after diagnosis and HT started and it has risen, very slowly over the three years. I assume my bone mets must be behaving themselves!

Edited by member 20 Jan 2015 at 13:20  | Reason: Not specified

User
Posted 20 Jan 2015 at 14:19

I shall be having a whopping slab of fruit cake to celebrate your news !!


 


Fiona. x

User
Posted 20 Jan 2015 at 15:12
Paul great news, I will dedicate my gym session this afternoon to you and celebrate my HBAIC of 41 with a glass of diet bitter cranberry xxx
Mandy Mo
User
Posted 20 Jan 2015 at 15:40

Now fruit cake or diet bitter cranberry? I'll leave the fruitcake to Fiona and the cranberry juice to Mandy but thanks for your messages! Now where's that chocolate!

User
Posted 20 Jan 2015 at 17:29

Diabetic chocolate, of course :-0

All that research about diet being the reason that men in the Far East have less PCa .... I wonder if your long trip is the real reason for falling PSA although I guess you would have had to eat an awful lot of sushi. Congratulations my dear - this is indeed a good day!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jan 2015 at 00:11

I am now about 18 weeks from my last UTI and I wondered about that but it seems too coincidental and such a big swing it must be the casodex!

User
Posted 21 Jan 2015 at 10:10

Paul,

For whatever the reason long may the good days continue.

Ray

User
Posted 21 Jan 2015 at 13:35

Thanks Ray

User
Posted 21 Jan 2015 at 18:13

Glad it's going well for you Paul. Long may it continue

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Feb 2015 at 20:25

I was looking at a medscape summary of a discussion which shows that:

"Men with a history of testicular cancer not only have a greater risk of developing prostate cancer, the disease is more likely to be of intermediate to high risk when it does develop, a registry analysis shows.

The study was presented during a press conference ahead of the Genitourinary Cancers Symposium (GUCS) 2015, in Orlando, Florida.

"Further validation studies are needed to confirm these findings based on other cohorts to determine if men with testicular cancer should have closer [than usual] screening for prostate cancer," Mohummad Minhaj SIddiqui, MD, University of Maryland School of Medicine, Baltimore, told the press conference.

"But based on these findings, we believe that men with a history of testicular cancer should consider a discussion regarding the risks and benefits of prostate cancer screening with their physician," he added."

It can be found here: http://www.medscape.com/viewarticle/840285?src=wnl_edit_tpal&uac=201270MR

Although too late for me it is interesting that I had testicular Cancer in 1982 and now have PCa with bone mets yet no medic had any discussion with me about PCa. Sometimes prevention can be deceptively easy but often medical discovery focuses on high end high cost treatments and the simple stuff gets ignored. I get that this research is recent but surely given the proximity of the two cancers I might have at least been given intelligence about PSA etc. C'est la vie I guess.

Edited by member 25 Feb 2015 at 20:26  | Reason: Not specified

User
Posted 25 Feb 2015 at 21:34
Paul
I am so sorry that , in line with your own medical history, this research has potentially shown something which I suspect you have always considered a probability. I know you are a wonderful person who never seems to have any bitternees or angst about the things that have happened in your life. Indeed on finding this the first thing you do is share it so anyone who knows anyone that has had testicular cancer can also make them aware.
I rather think that there will be more and more evidence of other genetic or chemical links from one cancer to another and more manifestations of a new primary cancer being related but not the same as the first. Although that is a bit frightening it could also be seen as a warning sign for prevention as you so rightly point out.

I know you will pass this off as "there but for" but I still want to say that I feel for you right now my friend.
xx
Mo

User
Posted 25 Feb 2015 at 21:48

Both interesting posts...is there some genetic link or are some people unlucky or a mixture of both...

I'm still a little concerned that my GP is sending me for an endoscopy with the words "I don't think it will be stomach cancer" ringing in my ears....is he aware of possible links. ...unlikely but hey ho...

Thanks for sharing Paul

Bri

User
Posted 25 Feb 2015 at 22:42

Paul, I think that a link between the two seems likely now but how direct might that be? Certainly, our understanding of hormonal cancers has come on significantly in 32 years and what is known now could not have been imagined then (I just had that conversation with my children this evening about FaceTime - when I was young, tv portrayals of people using hand held communications where you could see the caller's face were reserved for Doctor Who or sci-fi films).

It strikes me that a man treated for testicular cancer must have a more consistent testosterone level due to medication than others whose T rises with maturity and then drops with age - could this increase the aggressiveness of what would otherwise be a pussy cat? In my mind, yes this must be a possibility. My guess is that if a young man is offered testosterone to enable him to be 'normal' but with the warning that this may increase his risk of another cancer many years in the future, that young man may conclude it is a risk worth taking. You came to supplementary T late on and maybe would have taken a different view if you had known.

Edited by member 26 Feb 2015 at 00:37  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2015 at 10:03

Thanks Mo appreciate your thoughts. I am as you suggest not fazed by this. I can see no useful purpose in imagining What if in my own circumstances. I am where I am and need to focus on that rather than thinking back to what might have been.

Lyn, it's interesting that the first conversation I had about testosterone was in 2011, just 29 years after my right orchidectomy. Even though I had conversations about ED for about ten years testosterone never featured in the conversation until I got a referral to my diabetes consultant. So I certainly wasn't,t offered any supplemental treatment and thus I probably had a low testosterone level for many years, contributing to ED and loss of libido but maybe also impacting positively on the cancer in the prostate. I do think that my reactions to HT have been manageable in ways it does not seem to happen for many others as I have not felt an extreme change as a result of complete testosterone blockage even with casodex over the past few weeks. My T level was about 3 when tested in mid 2011 so was already very low and although causing me problems was maybe a protective factor too.

I remember being discharged after ten years from my testicular cancer oversight, so around 1992/3, and at that time I think testicle removal was probably a key treatment for Prostate cancer but there was no pep talk about testosterone, PCa or anything else. In fact I was told only one thing that my chances of getting Cancer again was no greater or no less than anyone else!

User
Posted 26 Feb 2015 at 22:13

Really interesting post Paul, how many times do we hear that some  who has been cured of cancer many years ago and then it pops up some where else. The old adage that lightening doesn't strike twice certainly seems to be inaccurate where cancer is concerned. I firmly believe that hormones have a much bigger part to play in lots of different types of cancer, who knows maybe all cancers.


I have just read an interesting article on neutering male and female dogs at an early age. (I was researching this for a totally different reason) and one of the findings was that early removal of either testes or fallopian tubes and there by stopping production of Testosterone and Estrogene had a detrimental affect on bone growth platletes .  Here is the interesting bit , I would have assumed that by stopping the relevant hormones the bone growth would also stop but this was found not to be the case and these hormones in fact play a very important part in telling the body to stop growing after puberty. The outcome was that early neutering (reducing hormone levels to early ) results in bone growth growing out of control and multiplying without a stop sign and that is exactly what cancer does. There was also a higher incidence in later life  of cancers in dogs that had been neutered before they had reached sexual maturity.


So I know this is a bit out there but when you think that when boys are born there testicles are swollen due to an influx of female hormones from mum and girls are born with there ovary's complete with all of there eggs and we are all only here for one thing to reproduce then hormones are so important and yet so fragile. How easily that can upset the balance of our bodies.


Wow I said all of that without a smiley face.


BFN


Julie X


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Mar 2015 at 13:05

Interesting stuff Julie!

On another note I have succumbed to my first UTI for nearly six months which is a bit disappointing. I have been taking a prophylactic dose of an anti biotic which has been keeping the UTIs at bay. On Thursday of last week I noticed my urine was a little cloudy and thought a UTI was on its way. For the next two days it seems to have battled with the anti biotics in my body and it stayed peripheral. My dip stick test revealed no nitrates. Suddenly in the night on Saturday the infection won this little battle with a vengeance. Painfully I was up at 2 am with pain and the urge to pee and a very poorly looking urine colour and plenty of nitrates. I started medicating immediately and painkillers and continued yesterday and it has beaten it back somewhat but I shall continue for a few days before reverting to the prophylactic dose.

On Friday I had my blood test for my check up next Monday. I do hope this incipient infection will not have distorted the results. At least the timing of the consultation means we can discuss the re-emergence of the UTI and discuss next steps. I still self catherise so I am not entirely surprised that after such a good run it has returned. However my general level of tiredness which was increasing has if anything got less in the last few months and I was now thinking that the UTI was a major contributor to my feelings of tiredness not just the HT. I have a busy week this week so hope I can maintain the energy levels.

User
Posted 02 Mar 2015 at 13:22
Paul
I am really sorry you have had/got another UTI. You must be quite fed up having thought you had got to the root of the problem and managing it so well for 6 months or so. Sounds like you have this one under control.
As to your test results I do not think it would skew the PSA/ALP figures in themself but you will possibly get some marginally errant readings in what I call the Ium values, potassium, calcium etc. Maybe CRP/ESR if they measure those for inflammation and raised protein levels.
I think the angst all you Men on here go through pre test and during the time that you wait for those results has an impact on your general well being.
I will be thinking of you as I always do and hoping that you get everything back to your version of normal asap.

xx
Mo
 
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