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Bazza - seriously bad news. Seriously

User
Posted 29 May 2019 at 12:02

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

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

User
Posted 29 May 2019 at 12:32

Hi Lyn

Home is here in France. I refuse to believe the bleak, rude onco. I will take a second opinion, visit a cancer centre in Malaga for alternative treatment and my will has been made with Brussels Protocol IV in it so that only English law applies and so my wife receives all and my kids an amount stipulate in it.

re the important stuff, I.e., my cancer, have you a view on why, six weeks ago, the CT scan showed so favourably with marked decrease in lymph size and a 50% reduction in PSA yet now such vastly more aggressive numbers? I’d welcome your views even if in a PM 

xxx

User
Posted 29 May 2019 at 13:23
Hi Bazza

Have you read DaveStuart’s profile, he’s completed 20 bouts of Chemo since 2016 and his PSA is up and down like a yo-yo. Don’t know if this helps, I couldn’t think of anything else to write, other than I’m sorry to read your latest news. I used love reading your long posts when you joined this forum.

Stu

User
Posted 29 May 2019 at 14:09

I have a hotline to friends in high places. I personally know a certain Professor at the leading edge of prostate cancer expertise who has a double barrelled name!? advising him of my precise situation. I do not qualify for UK trials as I’m not resident. There are none here. He has no crystal ball but says my best shot is to try Cazabaxitel or, given it may do nothing or very little except ruin QOL even further, just adopt a positive mental attitude and enjoy my time left. I think I’m going to do the latter. I agree entirely with him. 

User
Posted 29 May 2019 at 14:13

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

 

User
Posted 29 May 2019 at 14:53

Malaga Budwig Centre

User
Posted 29 May 2019 at 15:45

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

 

User
Posted 29 May 2019 at 15:53

Isn’t that a place which specialises in “alternative therapies” (herbal remedies, etc) rather than mainstream medicine, Bazza? Not a place I’d want to go personally for a second opinion!

Best wishes,

Chris

 

User
Posted 29 May 2019 at 23:11
Hi Bazza,

Sorry to hear your lastest news and recognise your post as something I think about all the time. Don’t know how you feel physically or mentally but I know it’s tough. Four years ago my brother in law, ex gp, advised me that you may have cancer and all sorts of treatments ahead but the best is a positive attitude, which as we all know is difficult. I’ve had 16 rounds of chemo along will other sorts of treatment and probably starting another 10 on cabataxal and whatever drug trials. Don’t know how anyone can say how long you have but I’ve tried over the last four years to have a normal life and have fun. (Never bought the Porsche or the fine wines, £10 at the most in Tesco). All I can say is try every avenue and locked door, but as your in France take time out and enjoy the wine!

Good luck

Steven

User
Posted 30 May 2019 at 02:41

Originally Posted by: Online Community Member

Hi Lyn

Home is here in France. I refuse to believe the bleak, rude onco. I will take a second opinion, visit a cancer centre in Malaga for alternative treatment and my will has been made with Brussels Protocol IV in it so that only English law applies and so my wife receives all and my kids an amount stipulate in it.

re the important stuff, I.e., my cancer, have you a view on why, six weeks ago, the CT scan showed so favourably with marked decrease in lymph size and a 50% reduction in PSA yet now such vastly more aggressive numbers? I’d welcome your views even if in a PM 

xxx

I hate that you might waste precious time and effort turning to some quacks pushing a dietary solution that sensible organisations are warning against. It takes a lot for one organisation to criticise another so MSKCC must have pretty strong cause for concern to put such negatives on their website about the Budwig :-( 

As for the rapid change, who knows. The cynic in me wonders whether they looked at the scans properly at the time, or whether something got lost in translation? Or maybe you have one of those cancers that reacts weirdly - there are stories of cancers that become much more prevalent as a result of chemo although I don't know how much evidence there is. 

Let's face it; yours has been a determined and persistent beggar all the way through. To go from clear margins to recurrence & SRT in two years is uncomfortably common on here but since then, your cancer has not followed the rules at all and has marched on regardless. If there was a possibility of testing, I would want to know if there were elements of small cell or one of the other particularly resistant types but it doesn't make any difference to the treatment options now so I guess they will decline to test. Spurspark's story is so similar to yours; the description of his trip with Cabz is on here somewhere and I don't think it gave him much extra time in the end but I will check. 

Do you remember Ben's post about getting the seriously bad news? It was called 'the moon reflects a light' - was one of the most beautiful & heartbreaking things ever written, I think. What has been so hard over the years is seeing that young men seem more likely to have these much more aggressive strains that fight back no matter what treatment is thrown at them. You, Spurspark, Alathays, Old Al, Ben, Candyman and so many others. 

Heartbroken for you both xxx 

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

User
Posted 30 May 2019 at 06:58

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

User
Posted 30 May 2019 at 07:21

Sorry to hear of your current situation Bazza.

My thoughts on these treatments is that when one door closes another one always seems to open.

As mentioned, there are further treatments available.

With regards the PSMA Lutetium 177 treatment, this is now available in the UK at the London Clinic.

This is the link:

https://www.thelondonclinic.co.uk/treatments/lutetium-177-psma-for-advanced-prostate-cancer

I only know this as it is one of the options that my Oncologist had recommended for me.

Kindest regards

 

Dave

 

 

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 May 2019 at 08:18

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

User
Posted 30 May 2019 at 09:37
Bloody hell Bazza, a Gallic shrug in response to your direct question is completely different to the onco coldly stating that you have less than a year!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2019 at 10:04

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?

User
Posted 30 May 2019 at 13:16
Bazza

You have cr*p medical support there. I have no idea if you can request an alternative but you may have a choice here. Decent medical support in the UK which may add years or cr*ppy support in France which probably won’t. As long as you weight these choices up, you will have done your best by yourself .

User
Posted 30 May 2019 at 13:32
You need a third PSA test before you can calculate doubling time :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2019 at 15:20

How about 7/1 pre chemo, 28/3 mid way chemo, 28/5 6 weeks post chemo

User
Posted 30 May 2019 at 17:07
Not really, you need at least three readings taken in comparable circumstances. Chemo in the middle makes the result unreliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2019 at 18:16

okay - with the fall and then rise, the doubling time isn't completely reliable but the velocity graph probably is.

http://www.doubling-time.com/compute-PSA-doubling-time.php

 

It says your current doubling time is 3.58 months. If the velocity graph is correct, your PSA in August will be around 123 and you will break the 1000 mark in July 2020.

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

 
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