Bazza - seriously bad news. Seriously

Really sorry to read this Bazza.

Like Kevin I have no words.

B

Sorry to hear your latest news, Keep going mate.

Thanks Chris

Bazza, words fail me but my heart goes out to you.  Amusez-vous bien en France, un des Plus beau pays du monde.

Ulsterman

Bazza

Sorry to hear this. Got a lump in my throat reading it. You are a brave man.

I third the suggestions made about a second (UK) opinion plus trials. Not only have you had issues with the French medics (are they really putting all the options on the table?) but prognosis like these are a guess. The gave my friend until Xmas 2018 and she is still going on. Keep digging out options and fighting. You’ve got this far and you will go further.

Edited by member 29 May 2019 at 05:21  | Reason: Not specified

Hi Bazza, 

I'm so sorry to hear your news.  I worry enough given my situation so I can only imagine how you're feeling now.

Thinking of you. 

Steve 

Whether you take the advice to come home for a short trip & a second opinion or not (and somehow I doubt you will), I will reiterate my comment on the other thread. Make sure that you have had proper advice about your will, etc. The rules for Brits living in France are different to here - you are not necessarily allowed to leave your money to whoever you like. I don't know whether you want to cut out the girls completely for not speaking to you (hopefully not) but if you die intestate, they will automatically get 66% of whatever you leave.

If not already done so, you can write a will stating that you want your will to be dealt with under British law but you need to do it while you are still well.

https://www.expatica.com/fr/finance/taxes/when-does-french-inheritance-law-and-tax-apply-to-your-assets-101812/ 

A short trip home wouldn't kill you - not popping home could.

Edited by member 29 May 2019 at 12:03  | Reason: hyperlink

Bazza, that's sh*t news to be told, and I feel sad to hear it.

I also feel it's a very defeatist position for your consultant to take, really I do.

Your treatment at Guys was excellent I seem to remember (it is a centre of excellence), so I think you owe it to yourself and your partner to give them a call.  Malaga?

Flexi

Hi Bazza,

I am a bit of a newby having been diagnosed in Dec 2018 and having had RARP 6 weeks ago.  However, I have enjoyed your company through your posts and responses in the last few 'difficult' months and was 'gutted' to read your post of today.  I don't have the words unfortunately, and those words I have would not do justice.

What I will say is that perhaps without knowing it you have helped probably hundreds, if not thousands of fellow Pca sufferers over time and for that you should be warmly applauded and celebrated.

Have a good glass of wine tonight and just think of thousands of us in the Uk raising a glass to you tonight and applauding.  Don't give up and take the great advice of your many, many friends on this forum.

Best wishes,

Steven

I’m not giving up or in Lyn. The Budwig is not just diet. The centre in Malaga offers all kinds of palliative non invasive and importantly ‘no wild claim’ treatments/therapies which, if they do nothing physiologically, do much good mentally for advanced patients. It’s also just a few hours over the border for me, easier than flying and offers if nothing else, a very pleasant change of scenery with wine, tapas and sea. 

To be mentioned alongside the forum legends you named was amazing but, and although the odds are stacked against me, I’m going to do my best to avoid the club for as long as possible. My onco is not specialist, she didn’t even know what Sipeleucal-T was. When I purposely asked her if I’d be here in a year’s time, she very typically in a French manner, shrugged her shoulders. It would have been the same had I asked her two, three or four years. So I am taking her unqualified head shrug with a proverbial pinch of salt, am going to take care of my body best I can, rest when tired, do everything I would normally do but within my limitations and enjoy every sun soaked minute here with my loving wife. 

If, along the months ahead, my posts stop, you will sort of know I’ve popped off to see my Nan and am no longer around - but I will have made it ten years which in my book is no mean feat. Apart from my swollen leg, I really feel fit and well and my minds eye cannot even envisage the prospect of me being anywhere near death yet. 

Yes, tears flow for what will inevitably be but we allow those tears rightful passage and space to mourn what will be a loss for myself and Jo, my beautiful wife. The fat lady hasn’t even stood up yet, but in the distant corridors of a dimly lit theatre, I can hear her gargling. It’s a horrible effing sound! 

With love to you and yours.

bazza xxxx

Edited by member 30 May 2019 at 06:59  | Reason: Not specified

Bazza, so sorry to hear this news. I know nothing of the possible treatments at this stage, maybe I have this to come. 

Hoping that you get more time with your wife Jo than they are suggesting. We all know how many on here have beaten the odds.

Sat outside my counsellors waiting to go in, so best wipe my tears away now.

Very best of luck, will be thinking of you.

Phil

But Lyn, that was in answer to a direct question. The woman hates us, a) because we’re both English and b) because she doesn’t want to answer an intelligent question posed by a patient because in France, there is NO bedside manner (think very very carefully before you decide to live here! And, c) because she simply didn’t know.

given March 29th had a PSA of 19 and May 28th, 90 - or Jan 7th a starting PSA pre chemo of 40, what’s the best date line to work out a doubling time. That might at least give me some indication of etd. Not that any of us ever know, right until the end. Your wise counsel would be appreciated here.

oh, just one thing I didn’t mention, I’ve always had the same four lymph’s involved. I now have some other activity. I quote: Ventilatory disorders in the form of bands of atelectasis located in the right lower lobe that may be consecutive to an episode of recent inflammatory infection and.....

No mediastinal or hilar adenomegaly but presence of left subclavian adenomegaly whose small axis is measured at 13 mm 

what do you make of these plus the doubling time query?

Those three dates Lyn

Results

Doubling Time = 3.61 month
Doubling Time = 0.3 years
Velocity = 8.52 ng/ml/month

Lyn, phosphotase alkaline level was 101 u/l which I understand is normal. Does this sound right as I was worrying about bonage

No but serious night sweats and a high temp for five days. I put it down to SEs of chemo Lyn.

I know but look how far you have come. 9 years ago you were saying that you would never cope if you had a recurrence; you have said more recently that if / when you got to the 'no more treatment' stage you wouldn't be able to cope. Now look at you; you are happy after many years of feeling sad and unsupported / you are ready to kick ass with alternative treatments / there is some possibility that you are not yet at the 'no treatment' point after all.

You are, and always have been, stronger than you think. Get some clarification of your results, perhaps?

Edited by member 31 May 2019 at 22:14  | Reason: Not specified