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Chris J's Journey

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
 
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