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Chris J's Journey

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User
Posted 30 May 2019 at 13:18

That’s brilliant news Chris . You are listening to your body ( and mind ) to make these decisions and I am in awe of your courage.

I know I’ve been lucky with the Prostap regarding physical affects but I have to say I hate what it’s done to my mind ☹️.

if I were you I’d stay off as long as you can. 

Sone of us seem to be more prone to the mental issues with HT. Mine possibly because of my childhood and for others I can’t say but I would be wary because of your existing Bipolar. 

Hope you’ve had those glasses of wine 🍷 🍷....you certainly deserve it.

best of luck for the future.

Phil

User
Posted 02 Jun 2019 at 19:44
Thanks all for replies. Yes I’m a lot perplexed. I genuinely got back from cruise expecting the worse and HT and Chemo start over summer which I think I would have refused. Truth is I’ve not even been offered any other treatment than SRT which I’ve been told is highly unlikely to be successful. He won’t treat something he can’t see. He’s always said that. If it was in my pelvis it would be the size of a tangerine. I’m an utter classic case of oligo mets. All over my body probably but nothing solid yet. I know it’s coming but I don’t think I’ll ever have regrets now I’ve enjoyed totally normal life for 2 yrs. It’s my 52nd Birthday Friday and four years post op on the 15th. Yes the worry never goes away ever , but I’ve booked another cruise end August and just hope nothing crops up in the meantime. Stay well all x
User
Posted 30 Aug 2019 at 10:19

Hi all. Just a quick update. I’m off on a 13 night cruise on my own tomorrow so very excited. Separate hols this year but that’s fine.
I’ve been feeling a bit unwell , bad back , fatigue etc and not due to see Onco for scans etc until November so I went to my GP. He did full bloods and basically everything seems fine within me. My PSA has risen from 82 in December ‘18 to 190 now. As you know I’m not really alarmed or surprised by this , but the doubling time has really dropped back last few times. Used to be 3 monthly doubling and now seems more like 7 monthly. Does anyone have any views on this ??
Anyway still choosing to Watchful Wait until any scans show anything up or I feel ill. Really enjoying QOL

Edited by member 30 Aug 2019 at 14:31  | Reason: Not specified

User
Posted 30 Aug 2019 at 11:45

Hi Chris

My theory as regards the doubling time is that when we treat the cancer in the hope of eliminating it, we may kill some of the less mature cells but the remainder mutate and become more agressive and shortening the doubling time as happened to me after Chemo which I now regret, as my quality of life now is not the best, and my doubling time has reduced from 2-3 months then to less than a month now. I admire the way you are approaching this but I would probably want a scan earlier as there maybe something showing up that can be eliminated via a curative process rather than trying to suppress it. By not treating via chemo and HT the cancer has not being threatened and therefore not mutating into a more agressive form. This is only my personal opinion though. Enjoy your holiday and keep us informed.

All the best

Roy

User
Posted 30 Aug 2019 at 12:03
Thanks Roy. I had CT and bone both in Jan and May. Can’t have any more till Nov re kidney damage from contrasts etc. Strangely although I’ve had two PET scans , they aren’t offering another. Cheers
User
Posted 30 Aug 2019 at 14:21

CJ

Have a great time. Thanks Chris

User
Posted 30 Aug 2019 at 23:08

Enjoy the cruise Chris.

 

Ido4

User
Posted 30 Aug 2019 at 23:24
Probably all that lego you lug around!

Enjoy the cruise, my friend :-)

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

User
Posted 31 Aug 2019 at 06:55
Still admiring your approach Chris. Hope the cruise helps with the fatigue etc. Enjoy.

All the best

Cheers

Bill

User
Posted 31 Aug 2019 at 09:27
I am NOT still admiring the approach, or at least I won't be come November / December. I think you should have another scan (maybe a different one - worth contacting the FACBC trial people?) and then start HT regardless - it is clear from your social media that little P is the light of your life so at what point does sex become less important than his need to have his dad around as he grows up (or at least grows up a bit more)?

You are a clever man and you know first hand that later stage PCa can be horrific. There wouldn't be much sex with lymphodema, organ failure, jaundice, bone pain, etc. Have à wonderful cruise and then it will be Christmas - perhaps then a new year / new approach?

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

User
Posted 31 Aug 2019 at 13:54

Lyn has some valid comments. Enjoy the cruise.

User
Posted 31 Aug 2019 at 15:29
I’d just like to add that I haven’t actually been OFFERED HT or Chemo yet because I’ve refused RT ( which you agree Lyn is pointless ) , and I don’t think they can move foreword without visual evidence I have advanced PCa. Yes I know psa is showing that but there isn’t any visual evidence to speak of. I’m being scanned as often as is safe to my body.
User
Posted 31 Aug 2019 at 17:12
It is a crazy situation, isn’t it? If you were newly diagnosed right now with a PSA that high, they would have you on HT before you could blink regardless of whether they could pinpoint it on a scan. To be fair to your onco, you have been consistent with the QOL message so he probably doesn’t dare mention it to you 😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Sep 2019 at 08:15
Enjoy your cruise, Chris. I really would urge you to go on HT. For me the side-effects of it haven’t been too bad at all, and there’s no doubt that it would get your PSA right down.

Very best wishes,

Chris

User
Posted 04 Sep 2019 at 16:42

Hi Chris, just go and enjoy yourself as much as you can. No one can tell you what to do , only you know your feelings, your body and your relationship with your family.

I’ve been on here saying how few side affects I have on Prostap but after my last one in October I am determined to never go back on it whatever happens. It has completely decimated my mind and I so badly want to get get back to some kind of normality. I know my issues are historical from childhood but I understand you suffer with the mental side of things too and I wonder if HT would also cause problems for you, or maybe not, no one will know till you have to try it.

I suppose all I’m saying is if you & your family are happy with your decisions then don’t have any regrets.

Hope you have a fantastic time.

 

User
Posted 08 Oct 2019 at 13:02

I sat reflecting last night at my situation and the loss of a few members recently. It sank in that a fair few of the members who had been on here a couple of years before me , are now gone or very poorly. And I’m 4 1/2 yrs into this journey G9T4N1MX.
All I’ve had is RP and a small stint of Bicalutamide and at present on zero treatment with psa 190.
All this journey I have been symptom-free. In fact if anything the problems I have all started post surgery. Anyway scans at the end of this month and I’m convinced they must find something surely now ??? I have chronic lower back pain and full length leg pain in each leg. I guess in a way I’ve been ( lucky ) to get this far with very little intervention and that has made me quite nonchalant about it all , but I know a nasty surprise is just around the corner and I intend to fight it all the way.
Best wishes to us all !!

Edited by member 09 Oct 2019 at 10:00  | Reason: Not specified

User
Posted 08 Oct 2019 at 14:56

Hi Chris, I wish you the best for your upcoming scans. I get the feeling you’d like to know the reasons for the back and leg pains ?

I hope you can stay off the HT for as long as possible as I know how much it can mess with your mind especially with pre-existing issues I.e. Bi-Polar.

Its funny I almost feel like one of the oldies now....started my journey in July ‘17 with a final diagnosis in December of that year.

My final HT injection on the 18th of this month and then the difficult wait to see if the treatment has worked and also that all the bits start working as they did before 😆😆.

So again best of luck for the scans. It’s a very brave path you tread .

Phil

User
Posted 08 Oct 2019 at 15:26
Hi Chris,

Sorry to hear that you are concerned about the latest tests. It's understandable anxiety especially in light of the sad losses recently of men who have been here for a while now.

I hope that there isn't a nasty surprise around the corner, and you have nothing to fear or face. But, you continue to be an inspiration and a constant source of support and encouragement to many others.

Good luck to you and my best wishes to your family.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 08 Oct 2019 at 17:24

Wishing you all the best for the next set of scans Chris. I think you’re right to expect something to show up sooner or later with your PSA level as it is. You have made your treatment choices with QOL in mind, I wonder sometimes whether I have gone at treatment too enthusiastically but that was my choice.

I follow your journey and am with you all the way.

 

Ido4

User
Posted 08 Oct 2019 at 20:15

Hi Chris ,

i changed my avatar back just for you 😉. 

So scores on the doors aren’t brilliant but your journey so far has been so different from the norm.  You have all of the tools left in the bag . You have got this .

Good luck with scans .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Nov 2019 at 11:46
Onco visit this morning reviewing both scans

Evidence of two possible tumors on lower spine via the bone scan.

Two lymph nodes abnormal in rear of abdomen.

Only treatment offered is injectable HT and Chemo. Although early Chemo is now the norm he says new evidence shows it isn’t as effective for people like me who have a long established PCa. It’s better for newly diagnosed people. So I have the choice really of earlier or later.

Treatment can start now or he will rescan in 3 months to confirm advanced stage and then start treatment. I think that sounds best as I don’t want to disrupt a pleasant family Xmas with my wife and children.

Although he is sure this is now advanced he says not a matter of direct urgency.

Cheers all x

User
Posted 15 Nov 2019 at 12:04
Chris don't you find the "two possible tumours" diagnosis too vague to make a decision on? You've either got tumours or you haven't. Can't they investigate further?
User
Posted 15 Nov 2019 at 12:18
Will rescan and make a decision. I’ve had 5 bone scans in total so they’ve definitely seen a difference
User
Posted 15 Nov 2019 at 15:58
Chris re "people like you" and not responding as well to combined therapy.

You are hardly a textbook case as you probably have more in common with the newly diagnosed with high PSA group (minus a prostate of course) than someone who has been on HT for years.

Did you consultant say what research he was referring to?

User
Posted 15 Nov 2019 at 19:18
No sorry he didn’t , but was quite convincing. My wife and I have utter trust in him and his dealing with my case both mental and physical. At the end of the day he is a professor of medicinal oncology and head of immunology here at Southampton, so I guess he knows his onions. I’ve not given up , but my quest for research has died off significantly tbh.
User
Posted 15 Nov 2019 at 20:21

CJ

Not what we wanted to hear but I suppose it was to be expected.  Good that you have confidence in your onco. Take care.

Thanks Chris.

User
Posted 15 Nov 2019 at 20:23

Ok Mr Lemons ,

You can pack this in right now . 

Possible mets means exactly that , you don’t know that and obviously your oncologist doesn’t either . 

We could all possibly get run over by a bus tomorrow, possibly means nothing . I could possibly be a millionaire this time next year 😉.

I get that we have lost a few long time members recently and that has hit hard but hey if I had crumbled every time  we had got a possible well I wouldn’t be able to give you a what the feck is possible shove up the back side .

So if you was newly diagnosed they would offer Chemo WTF , I don’t get that , that can’t be right so if you where diagnosed yesterday with the same diagnosis then that would be ok ? 

Come on Chris you have come this far don’t let this get you low , you have your gorgeous lady and your little boy to fight for . You have all of the tools still in the bag . 

I am absolutely rooting for you . 

BFN 

Julie XXX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Nov 2019 at 20:52
I think that the 'early chemo' thing has run a bit wild and a lot of oncos are using it quite differently to the way it emerged from the trials 4 or 5 years ago. It would be more precise to refer to it as hormone naive chemo.

Your onco knows you well and knows that you have consistently placed QOL above all else. To be honest, in that context it seems to me that in a choice between treatment now with a marred Christmas v no treatment at all v treatment but only after a nice Christmas, it is a no brainer.

At least they have found it at last!

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

User
Posted 16 Nov 2019 at 08:55

Am attempting to find a positive response to you, but with my limited knowledge of this illness I am finding it very difficult. Your faith in your Oncologist is well known and is to be applauded, but it is your strength of character that has served you so well so far on your difficult journey. I feel sure that with the help of your family you will continue to fight this nasty illness all the way and that whatever decision(s) you make in the future it will be what’s best for you. It’s so easy for me to say it, but please Stay Strong, Chris.

User
Posted 16 Nov 2019 at 14:48

I think you are wise to leave treatment till after the festivities Chris.

But in the New Year it’s time for HT plus hormone naive chemotherapy I think.

If that’s what you decide of course, I have massive respect for the way you have approached things.

 

 

Ido4

User
Posted 16 Nov 2019 at 15:33
Whatever your decision about treatment is, I wish you the very best, Chris.

User
Posted 16 Nov 2019 at 20:50

Wow. Difficult one. I am instinctively sympathetic to your Quality of Life approach but you are a relatively young man so length of life has to be a consideration as well.

I'm not going to offer advice except that I'm going through a series of scans right now as my PSA has started to climb post EBRT in May 2016. I could well be seeing the oncologist early next month. With Christmas coming I am very much minded to delay any treatment until the New Year but I will have the treatment. I sense that might be your approach as well.

Good luck Chris whatever you decide.

User
Posted 17 Nov 2019 at 12:28
Thanks to each of you that have replied. I believe my wife and I have become a little behind the developments these last few years as have just been living a totally normal life. Sometimes we still find it kind of surreal that I have cancer at all :-((

We are not sure what Hormone naive Chemo means , nor are we sure what the gold standard is these days for moving forwards with advanced cancer etc , eg early Abi etc. Any advice welcome as ever and gratefully received.

User
Posted 17 Nov 2019 at 13:46
Chris, sorry I can't offer advice I wish I could because your advice to me over the past couple of years has helped me considerably.

I can however wish you all the best whichever way you decide to go.

I hope what ever you chose goes well for you and that your highly valued QoL is not compromised to much.

Good Luck

Cheers

Bill

User
Posted 17 Nov 2019 at 15:38

Hi Chris, hormone naive just means the cancer cells will shrink (some will die too) and react well to hormone therapy. The opposite would be castrate resistant which means the cells do not respond to hormone therapy.

The latest research shows giving chemotherapy before castrate resistance develops prolongs life.

Hope that makes sense.

 

 

Ido4

User
Posted 17 Nov 2019 at 16:18

Hi Chris, sorry that you may have some progression now.

wait until after Xmas, hell yes, after that I would throw whatever at it. Some men have a hard time on docetaxl, many don’t, I ran 2 marathons during it so don’t be scared of  qol issues. 

If doing something now does not preclude you having it again later what’s to lose, if you can’t get on with it then stop it but if it works happy days 

take care mate, rooting for you whatever your choice.

Kev 

 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 17 Nov 2019 at 22:08

Thinking of you, Chris.

Ulsterman

User
Posted 18 Nov 2019 at 11:54
Best wishes to you Chris.

Always appreciate your amazing support

Clare x

User
Posted 19 Nov 2019 at 13:00
Chris,

You are constantly on my mind!

Sending you a virtual "man hug"!!

Pablo

User
Posted 19 Nov 2019 at 16:35
Have a great xmas then regroup and decide which direction you are going to go.

Take care

Bri

User
Posted 19 Nov 2019 at 23:16

Enjoy your Christmas and I hope all goes well for you next year. There seems to be different ideas on the order in which treatments are given.

Thinking of you and your family.

User
Posted 07 Jan 2020 at 17:21
Thanks as ever to anyone that has followed my story. I’m feeling really fragile right now , knowing that on the 20th Jan I’ll be having my Third set of Bone and full body CT scans in a 12 month period. And it’s to confirm progression to lymph’s and spine. I’m not terrified but just simply dreading moving on after 4 1/2 yrs full recovery post op. It feels so surreal as I feel so fine and am living a totally normal life in every way. I was told HT would be for the rest of my life and after reading all your stories it just haunts me that my life will change forever again. And then whether to have Chemo up front or not. My mental stability is dodgy at the best of times , and work is so important to me as is my love life. Just scared guys and very sad. That’s all :-((
User
Posted 07 Jan 2020 at 17:52

Chris, really feeling for you, and hoping for best possible news, whatever that is.

User
Posted 07 Jan 2020 at 18:57

So sorry you are feeling this fragile Chris. We are all with you, though that is scant reassurance as you wait on these next scans and results.

I hope you can find a way forward, you are stronger than you give yourself credit for.

Your friend,

Ian

Ido4

User
Posted 07 Jan 2020 at 18:57

Rooting for you mate.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Jan 2020 at 19:26

CJ

Difficult decisions to be made, not dwelling on it but conscious that my next PSA test may lead to further treatment. Keep going mate all the best.

Thanks Chris 

 

User
Posted 07 Jan 2020 at 19:49

Thinking of you Chris and praying for the very best news following your scans.  Keep going, you might feel stronger tomorrow. xx

User
Posted 08 Jan 2020 at 12:40

We are all rooting for you Chris.

I know you are terrified of the Hormone Therapy. I can only tell you my experience of Prostap. I didn’t put on any weight , carried on down the gym and did a 5k Tough Mudder. I get slight hot flushes but nothing to worry about and no fatigue. I also didn’t lose all my libido and the 5mg Ciallis means I still get the night/morning arousal. It’s not like it was before and obviously I’m hoping it will get better when my HT wears off. 100mg Viagra worked perfectly but didn’t like the non spontaneity but I’m not ruling it out in the future as I didn’t get any side effects from it , or the Ciallis.

My biggest issue with the Prostap was it seemed to cause me to open up my memory of things I’d buried long ago. I don’t fully understand why. I don’t know what my experience would be without those childhood traumas but I suspect I would have just felt a little depressed. But as you know there is treatment for that. It’s funny but I’ve also remembered loads of good things from my childhood that I’d buried along with the bad, and I’ve reconnected with some old school friends. So there’s a small silver lining 😆. I do understand your fears due to the Bi-Polar but it seems many men get no mental issues at all and you may well be one.

We do all seem to have different side effects on the HT and you may find they are more manageable than you are imagining. There are a couple of different types of HT and you may need to trial them to get what suits you if need be.

I wish you all the best and hope all goes as well as can be on the 20th.

I think I need to plan another fund raising this year to help with PCa UK research into better and less debilitating treatments.

Take care

Phil

Edited by member 08 Jan 2020 at 12:42  | Reason: Not specified

User
Posted 08 Jan 2020 at 15:54

Chris, Support being sent over the ether, lots of about for you, and well deserved it is too. 

I can’t how difficult it is for you... and your family.

 

leila ( stop singing that song)😉

 

 

 

Edited by member 08 Jan 2020 at 15:59  | Reason: Not specified

User
Posted 08 Jan 2020 at 16:38

Hi Chris,

I have followed your progress from 2016 when i was first diagnosed and you come across as a positive man that has helped many of us here with advice and knowledge to move forward what question to ask at oncology and specialist meetings.I don't think you realise how valuable you assistance has been to us all.

Good luck with your next appointment we are all thinking of you.

Regards John & Pat.

 

 

 
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