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Ever Decreasing Circles part three

User
Posted 30 December 2014 10:25:25(UTC)
I have decided to move my thread from the newly named 'End of Life Issues' into this conversation. I was happy being in a thread called 'Dying from Prostate cancer' as it had the merit of being clear and descriptive of my situation but as my personal progress is at the moment surviving with first line hormone treatment I was more uncomfortable in 'end of life issues' so I have decided to start this thread in a new place. For those interested in my previous thread it can be found at http://community.prostat...asing-Circles#post118200 or my original thread is in the archives and could be accessed at http://community.prostat...easing-circles#post9555.

TO REVIEW MY JOURNEY SO FAR:

So at the cusp of the new year I find myself awaiting my latest PSA results on 2nd January wondering whether this will be the year I start that reluctant journey towards second and third line treatments. I was diagnosed nearly three years ago with bone met spread but I have so far managed to continue successfully on hormone treatment, prostap to be precise. I have had a continual problem with urinary tract infections and partial urine retention (I self catherise three times a day at least) but at the moment I am enjoying a period free of UTIs as at my last appointment in October the consultant started me on a prophylactic dose of anti biotics which has kept infections away since. Whilst I have been travelling abroad for work in the last eight weeks I have felt energised and well. I am sure the relief from UTIs has made a difference! Whether it makes a difference to my PSA I shall find out this Friday!

Three years on HT has been good to me though side effects have mounted. I am lucky not to have suffered hot flushes but I suffer more and more from fatique though am still working as long as I manage periods of tiredness. My work colleagues have been great at recognising this and being supportive. Of course I have the obvious side effect of no libido and no sexual functioning but the two combined means it gives me a sense of calm which actually makes life easier to deal with.

So for those new to my journey this brings you up to date with the illness and my progress. But the real benefit for me of the past three years and despite the realities of all this I do believe it is a benefit, is the sense of life and living I have experienced. I spent a lot of time early on talking, reflecting and thinking about death and dying. This has helped me come to terms with that and my past threads document some of my reflections. I did not expect still to be here yet somehow I am, still reasonably well, still working, still enjoying life and still looking for new experiences and new memories. This year may see me progress down the treatment hierarchy towards chemo and beyond but I do so, learning from everyone here and from the courageous journeys of such wonderful characters as Mick and Barry (TopGun) and before them Ben (Nimenton) and the many others, too many to name but never forgotten, who have succumbed in the last three years. As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me.

I wish everyone a happy new year wherever you are in the course of treatment or in support of those suffering from PCa. There will be good times and bad times this year but with the support of this wonderful forum we can cope with this together! happy New Year.
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User
Posted 14 February 2016 10:02:19(UTC)

When I was finally diagnosed with incurable PCa I first told my two children. They had known the cancer diagnosis but we had been hopeful after a CT Scan that it would be on the cureable side. This was abruptly ended when the bone scan revealed bone mets in a number of places. My daughter, naturally upset, confused, angry, came up from London that same evening. The following day I was due to take my son to a wedding reception. I suggested to my daughter that we find a restaurant near to the reception and enjoy a relaxed meal and chat. This was the first visit to a little place in Humberside, Barton upon Humber. We had a lovely meal, shared emerging thoughts about the future, cried, and began the process of getting our collective head around what faced us. I said that night we should return here once a year to mark the passage of time, not knowing how many I could achieve as the prognosis had been 18months to 2 years.

Last night the three of us returned to Barton for the fifth time, celebrating four years survival, enjoying probably our best meal ever and still here, still battling, still living. It also marked the end of the worst couple of weeks I have experienced, the tumour flare, now definitively in remission, just normal aches, pains and tiredness. I hope I can build up my resilience once again.

So four years on and still counting. I have said before I am not under any illusions that this will last forever. I know my circles are decreasing and I know too what Bazza calls the uncertain certainty of the end game will arrive one day. But each year I have a dinner date to remind me I am still going strong and as long as we can we will book our annual dinner, always around Valentines, always in Barton, always at Elio's, to mark the passage of time, the accumulated memories of another year. I am glad of two things here, the restaurant remains open (it is a most inconvenient journey of about one hour from home but it's just fate) and it serves good food, fancy revisiting a place where the food was poor! Appropriately valentines as I am with the two loves of my life, my two children!

Have a good day everyone!

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User
Posted 18 May 2016 12:46:54(UTC)

In case anyone is interested I was interviewed on BBC Radio Sheffield today talking about. 'My life so far'. This was a general interview around my retirement from the university but did focus on my cancer quite a bit. Anyway it can be found here at 2 hours 10 minutes in and lasts for about 15 minutes. http://www.bbc.co.uk/programmes/p03tpnf7#play Let me know if the link does not work.

Thanked 6 times
User
Posted 30 December 2014 10:25:25(UTC)
I have decided to move my thread from the newly named 'End of Life Issues' into this conversation. I was happy being in a thread called 'Dying from Prostate cancer' as it had the merit of being clear and descriptive of my situation but as my personal progress is at the moment surviving with first line hormone treatment I was more uncomfortable in 'end of life issues' so I have decided to start this thread in a new place. For those interested in my previous thread it can be found at http://community.prostat...asing-Circles#post118200 or my original thread is in the archives and could be accessed at http://community.prostat...easing-circles#post9555.

TO REVIEW MY JOURNEY SO FAR:

So at the cusp of the new year I find myself awaiting my latest PSA results on 2nd January wondering whether this will be the year I start that reluctant journey towards second and third line treatments. I was diagnosed nearly three years ago with bone met spread but I have so far managed to continue successfully on hormone treatment, prostap to be precise. I have had a continual problem with urinary tract infections and partial urine retention (I self catherise three times a day at least) but at the moment I am enjoying a period free of UTIs as at my last appointment in October the consultant started me on a prophylactic dose of anti biotics which has kept infections away since. Whilst I have been travelling abroad for work in the last eight weeks I have felt energised and well. I am sure the relief from UTIs has made a difference! Whether it makes a difference to my PSA I shall find out this Friday!

Three years on HT has been good to me though side effects have mounted. I am lucky not to have suffered hot flushes but I suffer more and more from fatique though am still working as long as I manage periods of tiredness. My work colleagues have been great at recognising this and being supportive. Of course I have the obvious side effect of no libido and no sexual functioning but the two combined means it gives me a sense of calm which actually makes life easier to deal with.

So for those new to my journey this brings you up to date with the illness and my progress. But the real benefit for me of the past three years and despite the realities of all this I do believe it is a benefit, is the sense of life and living I have experienced. I spent a lot of time early on talking, reflecting and thinking about death and dying. This has helped me come to terms with that and my past threads document some of my reflections. I did not expect still to be here yet somehow I am, still reasonably well, still working, still enjoying life and still looking for new experiences and new memories. This year may see me progress down the treatment hierarchy towards chemo and beyond but I do so, learning from everyone here and from the courageous journeys of such wonderful characters as Mick and Barry (TopGun) and before them Ben (Nimenton) and the many others, too many to name but never forgotten, who have succumbed in the last three years. As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me.

I wish everyone a happy new year wherever you are in the course of treatment or in support of those suffering from PCa. There will be good times and bad times this year but with the support of this wonderful forum we can cope with this together! happy New Year.
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User
Posted 30 December 2014 12:21:39(UTC)

I think you are right to move the thread to a new place as you still have so much life in you. 2014 has been a great year for you - trips back to HK after a long time wondering whether you would ever get there again and like John, you have given your daughter away. Blessings x

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


User
Posted 30 December 2014 12:37:54(UTC)
Paul
what a great idea moving out of the dying from section, your acceptance of the fact that you probably will (course there is always a slight chance something else will come along and take you) is plenty for now you can return there when you feel it is appropriate, hopefully a very long time away. Meantime you are very much living with prostate cancer. Your mental and emotional journey so far has been superbly documented, honesty, reality and calm reflection are your forte, sometimes not understood or appreciated. I have got to know you fairly well over the last 18 months meeting up with the gang, going to functions and chatting on here or facebook with you regularly. Not cancer related stuff but the joy of family weddings, travelling to lovely places, photography and the happiness that can bring to mention just a few topics.. I love that you can talk and write so eloquently but more importantly you listen a quality which escapes some who occasionally get carried away and are more interested in what they have to say than what they can learn from by listening and absorbing.
I doubt a day goes by now that I do not think of you and all the other friends I have made through this forum and our commonality with PCa. I know everything I have experienced, read, heard, been taught and thought about in the last 18 months have made me a stronger and better person.
I hope you and your family have a wonderful and prosperous New Year
xx
Mandy Mo
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User
Posted 30 December 2014 19:05:32(UTC)

I also think you are right to move your thread Paul, dying from pca yes but certainly not yet you have too much life yet to live. You still have many options left on your journey and I for one hope that you have many years yet. I am really glad the new medication is bringing a respite to the UTIs that you have had, it must be such a relief for you.

As always I will be thinking of you next week for your results.

Happy New Year

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 December 2014 20:53:32(UTC)

Appropriate relocation. Hope HT continues to do a good job for you. Well done for not letting your inconveniences prevent you from doing what you do.

Happy New Year.

Barry
User
Posted 30 December 2014 23:15:17(UTC)
Always articulate and able to express heartfelt emotions in a rational way. Paul, you are a top man, I know a certain Top Gun would second that.


Much love and wishing you continued good health in 2015
Love Allison xxx
User
Posted 30 December 2014 23:15:52(UTC)

Very positive, Paul. I hope 2015 brings you everything you hope for!

Paul

Stay Calm And Carry On.
User
Posted 31 December 2014 08:02:39(UTC)

Great post as always Paul. Definitely the right decision to move the thread. Perhaps there should be a section named 'living life to the full' as many men and their families are on this forum.
Everything crossed for the PSA results on the 2nd. Just a thought but if it has risen will you be getting a scan? If so and this shows identifiable mets it may be worth discussing a bit of RT to zap them. Si is having this in the new year.

Anyway here's to a successful and healthy new year. Speak soon

Bri

User
Posted 31 December 2014 12:32:39(UTC)

Paul, good decision to move post, fingers crossed next PSA is around where you expected it to be..

To you and all I hope the New year will be all that you want it to be

Good luck, keep strong and keep fighting

Ray

User
Posted 31 December 2014 13:34:10(UTC)

Many of my favourite female correspondents, Lyn, Mandy, Allison and Julie saying such lovely things. Thanks so much it's good to get your support and of course everyone else who has responded. Sometimes the journey can get a little lonely and it's good to know when I need it most will come out and support me whatever their own travails. This is the great thing about this community and the people here. Mutual support makes almost anything more bearable.

User
Posted 02 January 2015 15:05:07(UTC)

Hi Paul,

Three years on HT and you still jetting round the world, you have my full respect mate.

I agree about moving out of the dying one, once they renamed it i was gone like a shot, but Julie is still there , so one of us is going to have to go back and get her 

Now someone said they like your new avatar but to me it looks like you are standing in the dock awaiting sentence, are you sure you was a good boy in HK.

Seeing Mandy tomorrow to sort out the January bash

See you soon mate.

Love from Ness & the Girls

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 January 2015 15:29:08(UTC)

January bash? More info???

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


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User
Posted 02 January 2015 16:16:41(UTC)

Well it started last year in Newark its called the "no hope triathlon"

It started as just a bit of fun and i am pleased to announce that our first event was won by Paul (yorkhull)

But then it becomes quite competitive, Mo is now at the gym 5 times a week, Brian has gone away for altitude training and Dave gets suspended from the site ( cant wait to hear why)

So after the 10k swim and the 20k bike ride we finish of with a gentle 10k road race, we then all meet in a local vegetarian restaurant for some nice cabbage soup followed by a delicious Tofu dish all washed down with a glass or two of water.

Lyn you are more than welcome to join us, but i must say what started as a fun event has now turned quite competitive.

If i can find some pictures i will post them up

 

Si xx

 

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 January 2015 17:13:03(UTC)

Well after three years my CIRCLES just got a little smaller. Had my appointment today, met a new uro who confirmed that my PSA had now risen to 42 and the threatened casodex (50g) starts from tomorrow. It was a bit of a jolt at first as I had been to eight successive appointments in three years and, despite the ups and downs, treatment had continued unchanged. Now I am starting down the road a bit it was a shock though I had half expected it. My main worry relates to the additional side effects and having avoided hot flushes so far whether they might now rear their head or that my level of fatigue might increase impacting on my work. Still I guess I have to suck it and see!

Interestingly this new guy went on to say if/when casodex fails I would move onto aberiterone next not chemo which I had anticipated. It was his view that this is now the preferred approach? Not sure, any views? Anyway he has also referred me to the oncologist so I will pick that up with her when that appointment comes through.

I find it unsettling to have another uro, my third in three successive consultations, and I am unsure of my new one, simply because I don't really know him and his ideas seem to take a different path.

Anyway there it is, life moves forward and in 2015 looks like it will be a bit more complicated for me.

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User
Posted 02 January 2015 18:06:25(UTC)

Hi Paul,

Sorry to hear about the rise in PSA,

Having had both treatments and had good results with both. I would go with Abbi every time.

All the best

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 January 2015 23:34:36(UTC)

Paul, did the uro offer you any RT to the breasts before you start? Do you feel brave enough to put the casodex off until you have seen the onco? I feel anxious for you that the casodex route is being determined by someone who only just met you :-(

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


User
Posted 03 January 2015 01:03:43(UTC)

Paul

Good luck with your treatment. Hope it does what it says on the tin!

Paul

Stay Calm And Carry On.
User
Posted 03 January 2015 09:42:16(UTC)

Hi Lyn,

I guess this has been on the cards since last June and I did resist on the last two appointments. I was not offered RT for the breasts, not sure I would want to go there unless problems get considerably worse. Have had sore nipples for last couple of years but it has been manageable. I found it more difficult because he did not really review my last three years at least with me. He may of course have thoroughly read my file and he is following what I discussed with two previous uro's. Overall I think it is time to try this medication. I was pleased that he was happy to facilitate aa appointment with an onco, which I haven't had. He also wants to see me in two months so this change will get checked out quickly.

User
Posted 03 January 2015 12:24:05(UTC)

Hi love, I was thinking more that we only found out too late that RT doesn't work unless it is done before the casodex begins :-( I am pleased that you are finally seeing an onco though - I find it mind boggling that you have had to wait this long!

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


User
Posted 03 January 2015 17:31:47(UTC)
Paul
May I add to what Lyn says. john now has very large lady style breasts and was never offered RT, he absolutely hates them and it makes his life a misery as they are so large and pointy. I'm not being funny, it's grim stuff trying to hide them. We have tried elastic bandages and tight vests (it all hurts) and have now invested in expensive waistcoats a size larger than needed, to cover them. It's not nice for a man to have boobs, they are NOT Moobs, they are full on lady breasts. Just a warning. Mind you they have been made far worse by the Stillbestrill. He is hopeful that chemo will make them go away, but I suspect not.

On the subject of Abbi over chemo. Many people believe that chemo is best done whilst well and then followed by Abbi or enzalutimide. Many believe that Abbi should be offered first but the way we feel is that if we go down the chemo route, we still have Abbi or Enzalutimide to come whereas if we go down the Abbi route we only have chemo because Enzalutimide might not be available (not sure about the latest NICE guidance on it after Abbi). It's a minefield.

PS did I read that right? Your PSA is 42?

Best wishes
Allison
User
Posted 03 January 2015 18:22:07(UTC)

Thanks Allison,

I think my ,boobs' cannot get much more pronounced anyway and I don't feel too concerned about them. I am a big guy so it's par for the course really. I have started casodex so I will see if it develops or changes at all!

I think the decision re Abby first or not is something I had not anticipated as at my previous meeting with a different consultant he had said chemo next! I suppose I did not know whether this new guy was more up-to-date or was new to this work as a new consultant. He has come from Birmingham so he may be bringing new ideas. Anyway I shall await a meeting with an onco and chat it through with her and then go back to him in two months. The casodex journey has begun!



And yes my PSA is 42? Is that an issue?
User
Posted 03 January 2015 21:14:41(UTC)
Hi Paul
Well it is much higher than John's was even on diagnosis (25) and I don't think John's has gone higher than around 12 before Casodex was introduced, might even have been 9. It's currently around 7.7 I think ( or was before this latest issue). Yours seems to have been allowed to get very high before changing treatment. I remember thinking that last time I read your update. Any reason why it has been allowed to get so high?

I'm sure your own consultant will have taken your previous history into account and maybe your wish to continue working has been a factor. Casodex can knock your socks off even further than just the jab. I wish you well my friend, just thought it was a bit high personally, but we are all different.

Love
Allison
User
Posted 03 January 2015 21:49:40(UTC)
Paul
I am a ittle sad to see that you have to have casodex added to the mix, as you know MIck could not get along with it at all it made him like a teenage girl with PMT as well as tired and much worse muscle aches. Having said that it is almost certain he was hormone resistant from the get go so adding Casodex just did not help it was just another drug to blame for the myriad of side effects he was having at the time. You will know quite quickly if you do not take to it well and at least there are lots of other options. Judging by this site many more men have a good response to it than those that do not.
As for Abbi before chemo, if the Oncologist agrees (when you see her) and if casodex does not do the trick which I think it probably will for you, then I would go down that route. Chemo is more likely to affect your abilty to work and would definitey prevent you travelling during the treatment.
I am finally back at home and about to post a new thread re the Newark get togehter, first I want to ring Julie so it may be late when i do post.
looking at second weekend in February.
xxx
Mandy Mo
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User
Posted 03 January 2015 23:07:29(UTC)

Thank you, Paul. Your post meant a lot to me.

Best regards,
Lawrence

"I am not young enough to know everything."

Oscar Wilde

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User
Posted 03 January 2015 23:16:52(UTC)
Allison,

I think the chronology makes it more explicable. In June 2014 I had a PSA of just under 20. We talked of casodex then and I was reluctant. I was well, had no signs or symptoms relating to the illness itself and my double time was upwards of 7/8 months, also because of UTIs there was concern the PSA was not fully accurate. Given that we decided to wait and see. Come October I had only gone up to 27 so my consultant was happy to wait. I was more than happy with this as I had my daughter,s wedding and then a seven week work trip to HK and NZ. I thought that casodex might jeopardise this. He agreed. So it's only this continued rise which has forced the issue now,

I had a PSA of 7.5 on diagnosis and though it went down to 1.06 after the initial HT it is has slowly risen over the following nearly three years. I had a bone scan in May 2013 which showed a slight reduction in bone met spread so I guess there was a belief that things were reasonably settled. I have always assumed that my PSA would rise as I still have my diseased Prostate as they do nothing to it as you know if you have bone mets and therefore the PSA would always show. I thought I might have more scans but so far they have resisted this, saying that my own wellness and my PSA are sufficient markers. I will discuss this with an onco when I get an appointment.

It's hard to make a judgment but I feel that the slow rate of increase and it's still only doubling every seven months or so has influenced the treatments. Be grateful for any further thoughts.
User
Posted 03 January 2015 23:26:20(UTC)

Thanks Mandy. I am a little nervous of casodex given its fairly bad press on here, though I guess if it causes no problems people do not talk about that. More than that I guess it's a slight movement forward towards castrate resistance and the sticky road after that. So that is unsettling but for now I can continue as before unless or until side effects grow!

As to Abby before chemo the debate on this does seem very confused. I can see the 'benefit' of chemo whilst you are still well as it may be better tolerated. From my point of view I would take time off work (for six months this is on full pay) and see it through. I would then have Abby or enzo in the box. Having said this if Abby gave me another year or more before chemo there are attractions to that if medically this is now the better option. But I have now heard views both ways, not least from my two uro's so it's hard to know what is best.

Look forward to hearing from about the meet up too.

User
Posted 03 January 2015 23:38:40(UTC)

From my limited experience it seems in Doncaster and Sheffield that the emphasis is on velocity rather than the numeric value of the PSA.
The oncologist told me they would rather avoid the toxicity of HT until it is definitely required.
From what you have said about your rate of increase Paul that sounds about right. However, I would ask for a scan as that does seem overdue.
Going to send you a message

Bri

User
Posted 04 January 2015 09:03:43(UTC)

Hi Paul,

Some data on Abiraterone, it is two years old but still interesting reading.

Si

 

On average Zytiga works for 1 year.

When used earlier in the treatment of prostate cancer before chemotherapy the trials showed that Zytiga worked for an average of 2 years.

If used before chemotherapy Zytiga works for 2 years.


The longest Zytiga survivor is 8 years from the Phase I clinical trials in 2004.

There are several 6 year survivors still taking Zytiga from the Phase II clinical trials.

There are hundreds of 4 year survivors on Zytiga from the 1000 cohort of the Phase III trials.

I hope this helps you to understand the soughts of responses that you get with Zytiga

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 January 2015 09:58:23(UTC)
Paul
I think for us, since a friend had chemo and then was well on Abby for about 2 years (he sadly died of a cardiac arrest, possibly caused by the Abby, hard to be sure) this seems the right route. Rob has mentioned a few times that HT can start to work again after chemo, and the big issue for us is that maybe by the time chemo is over there will be more data as to whether abby or enza is the right course of action. It's a tough decision, but ours is made, John is now 65 and has been on HT from four years, we'd rather he faced chemo now than later. You pays your money and takes your chances I suppose.

On the PSA issue, I guess I felt nervous because of Top Gun, he left his to get to 54 (admittedly he was on intermittent HT and was off it at the time) before he went back on and then became ill. I don't know what his doubling time was but John's is 6-7 months, he is a Gleason 10 so it is assumed that the Cancer that is growing is likely to be the bad kind. Does anyone know if doubling time and Gleason score have any correlation?

John was well on Dec 1st at our Onco appointment and became unwell around Xmas eve, though there were indications that his Prostate was once again growing (nocturnal visits) during December. He has already had Casodex (didn't work at all) and been on Stillbestrill for 15 months.

Anyway Paul, I suspect Casodex will work for you and I sincerley hope you can continue with your work. As we have discussed, your consultant knows your case very well and their advice is the one you need to heed. Good luck my friend, please let us know what happens at your next test.

Lots of love
Allison
User
Posted 04 January 2015 12:05:40(UTC)

John hated the casodex enough to stop early but was in a very different situation to you and I suspect the side effects that he struggled so much with have already become your new 'normal' Paul. As far as I can remember from past members, adding casodex to existing HT tended to show itself as an increase in breathlessness rather than anything else.

Who goes to your appointments with you? Do you want Mo and I to come along to intimidate the uro for you?

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


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Posted 04 January 2015 13:41:56(UTC)
Ha Paul that would be some shock for your Uro/onco xxx
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User
Posted 04 January 2015 13:47:53(UTC)

Formidable 😬

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


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User
Posted 04 January 2015 16:21:40(UTC)

Sorry for not replying earlier I was getting over the mental image of Mo and Lyn confronting my uro! It disturbs the mind! Interestingly for an assertive man at work I am quite quiet and reserved in front of doctors. But for the moment I will keep that one in the locker! I go on my own. I did not want my children to have to go through this though Hannah would have rivalled Lyn for assertiveness. joe would say little!

If I am dilatory in reply it's because I am spending considerable time travelling down to suffolk. My mum, who is 91, had a bad fall just as I was returning to the UK and so first hospital, now respite care has meant frequent trips down the A1. As my brother is away for a month I shall be doing this regularly for Jan and Feb. Just hope the casodex does not strike me down!

If I get no satisfaction from my medics I think just threat of you two would be enough! But I may take you up on it one day!

User
Posted 04 January 2015 21:41:54(UTC)

Hi Paul,

I am sorry to read about your PSA rise, not what you wanted to here but as you say you had half suspected as much. I have been a bit slack on the forum and have only just caught up . I cannot offer advice on the different treatments but I would gladly join Lyn and Mandy in a show down with your Uro. .

Sorry to hear about your Mum it is always a worry when they get to such a grand age and then have a fall. Life always seems to throw everything at once at you.

Don't forget if you would like the three Muskateers at your next appointment you only have to ask.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 January 2015 17:29:42(UTC)

Just spotted your response Julie, thanks so much given you have more pressing problems. Perhaps I could send all three of you and not go myself!

User
Posted 20 January 2015 11:26:02(UTC)

GOOD NEWS DAY!! I had my routine diabetes appointment today which unfortunately showed another rise to 59 so I was despatched to the dietician for a lecture on healthy eating. Although when she weighed me I had lost half a stone since I had last been there so I put her on the back foot. All my other measures were fine!

So my wonderful consultant always takes an interest in my PCa and has a PSA test done alongside his tests. It was just 13 days since starting casodex so I was hoping that the rise might have begun to slow down or stop. What a surprise to learn it had gone from 42.87 down to 22.67, almost halving in less than two weeks. I feel like having a double portion of salad for lunch! Six more weeks before I go back to my uro so hopefully this trend might continue. Not bad outcome though!

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User
Posted 20 January 2015 11:52:56(UTC)

Great news Paul,

Now you mention the salad after i forced  you to eat a roast lamb Sunday dinner.

Salad it is next time.

Si 

Don't deny the diagnosis; try to defy the verdict
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User
Posted 20 January 2015 11:54:11(UTC)

Really Great News Paul,

Hope it continues.

Best Wishes

Steve

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User
Posted 20 January 2015 12:27:37(UTC)

Excellent. Keep it up!

Stay Calm And Carry On.
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User
Posted 20 January 2015 12:31:23(UTC)

Brilliant Paul...I will raise a glass of slimline tonic for you ;-)

Now the challenge is too get it lower than your starting PSA at dx

Bri

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User
Posted 20 January 2015 12:33:42(UTC)
Very good to hear Paul, keep it up xx
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User
Posted 20 January 2015 12:43:59(UTC)

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
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User
Posted 20 January 2015 12:51:59(UTC)
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!
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
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User
Posted 20 January 2015 13:19:55(UTC)

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!

User
Posted 20 January 2015 14:19:30(UTC)

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

 

Fiona. x

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User
Posted 20 January 2015 15:12:06(UTC)
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 January 2015 15:40:57(UTC)

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 January 2015 17:29:10(UTC)

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 January 2015 00:11:05(UTC)

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 January 2015 10:10:42(UTC)

Paul,

For whatever the reason long may the good days continue.

Ray

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