I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Bazza - seriously bad news. Seriously

User
Posted 28 May 2019 at 14:36

So, bad news has never been this bad for me. Myself and Jo are devastated.

Had a CT scan this morning after finishing chemo on 23rd April. My scan previous to that was on 29th March and indicated PSA 50% lower at 19, three of the four lymph nodes reduced and all indications that chemo had done a good job.

Fast forward to today, all lymph’s massively increased, PSA rocketed to 90. In the words of the oncologist, huge progression with a projected death timeframe of within one year.

There are no further treatment options here, just palliative pain relief.

I am devastated. No, we are both devastated and the tears haven’t stopped flowing. I don’t know how to cope. Spartacus’ time for battle will soon be over. I am just devastated having found my one true love again so late in life, to be leaving her again so soon. This wasn’t in the script.

It’s really weird you know. When I first joined this forum back in 2010, I was so alone, so vulnerable, so uninformed. Yet great men saw me through my darkest moments, many of whom new members may not know: SpursSpark, Alathys, a number of Barry’s and others too numerous to mention. Over the years, I watched them bravely, stoically move on to that great place in the sky never once dreaming I may face the same fate. I was always going to beat this disease - yet deep down, I knew that I wasn’t. Still, as long as I had the friends on here: men much more experienced than I to advise and console, I knew I’d be alright. Well, I’ve kind of reached that stage now myself having hopefully helped a few over the years, all the old names moved on and just Bazza being a remnant of the past. Who knows? I may still last a few more years - yet the odds against my doing so decrease as time passes. Today, I feel just as alone, afraid and vulnerable as I once was all those years ago - yet also bouyed in the knowledge that I have lasted almost ten years since diagnosis and even in a time where drug treatments have improved, that’s no mean feat. 

Time will move on as time it must and in years to come, maybe some will remember me as I have remembered those who helped me so much. I hope they do. I have always tried not to interfere nor be a blanket poster, choosing my moments to post and on occasions, unashamedly posting about my own fears. But I know that in doing so, just the fact of wearing my heart in my sleeve as I invariably do, I have helped some others take or deal with their own demons.

Today has been a day of sad news for me personally, yet I know that in the long line of men out there, I am among many. Each will find levels of bravery and stoicism they never thought possible, many will also be scared as children. I waved between both. All I will say, to old and new, men and their ladies whose paths I have crossed and mine theirs, celebrate life when you can with those you love, smile but also spend time crying loudly for crying is a great antioxidant for the soul. Cry oceans if you have to. But whatever you do, breathe in the fragrance of each new day filling it with whatever floats your boat, whether that’s watching mindless TV, working, gardening, holidaying, travelling or some such. Just do your thing and let cancer call at your door after you have ignored the doorbell as many times as you dare. Thank you.

 

Bazza

 

 

 

Edited by member 28 May 2019 at 17:45  | Reason: Not specified

User
Posted 28 May 2019 at 21:54

I am so sorry. My oh was diagnosed in 2010 too and has had various treatments and scans since then - currently on arberatitone and steroid and zoladex. At the moment that is the plan as long as he stays stable but we have no idea how long this will be. All I can say is to live every day with love and rejoice in the little things.I will keep you in my prayers and hope that you will be able to enjoy as much as you possibly can. Do what you can and live for each day. I agree that tears are good and release some of the pressure. Since this pc took hold of our lives we have lived with tears always a moment away. Things move you more, you become different in attitude and love means everything. My love to your partner too. Praying there still is hope of some kind for you. 

 

User
Posted 30 May 2019 at 21:05
My PSA was over 1000 3 weeks ago and I am by no means dead. Hang on in there!
Show Most Thanked Posts
User
Posted 28 May 2019 at 16:55

So sorry to read this Bazza, no words. 

 

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 28 May 2019 at 17:24
So sorry to read your update Bazza. Thoughts are with you at this difficult time.

You've been an inspiration to many on here, hope they keep the pain under control so you're able to get the best from the summer months.

John

User
Posted 28 May 2019 at 18:12
So sorry to hear this Bazza. You’ve helped me immensely over the years and are still helping me in decision making with your progress and journey to this day. You take care as best you can and get some red down you.

If life gives you lemons , then make lemonade

User
Posted 28 May 2019 at 18:16

Really sorry to read this Bazza.

Like Kevin I have no words.

Ido4

User
Posted 28 May 2019 at 18:40

So sorry to read this Bazza

John was diagnosed at the tail end of 2010 too, his PSA also jumped to 91 at the end of chemo in Dec and his disease had spread rapidly too. He however has been put on enzalutimide and has done well, apart from a nasty bout of sepsis of course. No one has put a time frame on his life span but I know things aren’t great. Quality of life has diminished greatly the last six months but I remember how we used to say that the fat lady was locked in the cellar for Alastair and that’s where we need to keep her, for your sake and for John’s.

Your post was wonderfully put, so many memories came flooding back for me, old friends through this forum, now long gone. Bless them all, they made my life so much better by knowing them.

Take care dear Bazza and please don’t give up.

with love 

Devonmaid xxxx

User
Posted 28 May 2019 at 18:43
Awful news, Bazza. So sorry to hear it.

Chris

User
Posted 28 May 2019 at 18:59
Really sorry to hear your devastating news Bazza.

I hope you can find the strength to have some good times through the summer.

Cheers

Bill

User
Posted 28 May 2019 at 19:00
Bazza

So sad to read. Hope you take every moment of happiness going.

Ray

User
Posted 28 May 2019 at 19:57
I am so sorry to hear your news, make every minute count, stay strong and enjoy every moment you can with your beloved.

barbara x

User
Posted 28 May 2019 at 21:29
Barry I know you said you would struggle but is it time for a 2nd opinion regarding treatment options back in the UK

Bri

User
Posted 28 May 2019 at 21:40
I totally agree with Bri’s post. Definitely a second opinion, and find out what clinical trials might be available. Good luck and best wishes, DW
User
Posted 28 May 2019 at 21:47

B

Sorry to hear your latest news, Keep going mate.

Thanks Chris

User
Posted 28 May 2019 at 21:54

I am so sorry. My oh was diagnosed in 2010 too and has had various treatments and scans since then - currently on arberatitone and steroid and zoladex. At the moment that is the plan as long as he stays stable but we have no idea how long this will be. All I can say is to live every day with love and rejoice in the little things.I will keep you in my prayers and hope that you will be able to enjoy as much as you possibly can. Do what you can and live for each day. I agree that tears are good and release some of the pressure. Since this pc took hold of our lives we have lived with tears always a moment away. Things move you more, you become different in attitude and love means everything. My love to your partner too. Praying there still is hope of some kind for you. 

 

User
Posted 28 May 2019 at 22:25

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

Ulsterman

User
Posted 28 May 2019 at 22:25
Bazza,

I am so very sorry that your news is so bad. I believe you said in a previous post that you were not up to traveling back to the UK for a consultation but I do wonder if you could discuss your situation with another oncologist (perhaps a UK one), over the telephone to check whether there may be some other treatment that could be tried having prepared a summery of your histology and various treatments to date?

Barry
User
Posted 28 May 2019 at 22:28

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

User
Posted 29 May 2019 at 06:41
Nothing anyone can say to help, but I'm saddened to read this latest news.

Hopefully all the help and assistance you require will be provided.

And with constant and rapid progress in research, who knows what may be found that may help. We have to hope.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 29 May 2019 at 06:52

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 

User
Posted 29 May 2019 at 11:31

Hi Bazza

i agree with others, you need to get a second opinion and ask about possible trials available either in France or the UK. I don't know if you have read the threads I have posted regarding PSMA LU-177, ACC225 or thorium 227 which look promising if your cancer express PSMA. There are maybe trials either in the UK or Europe you can access, and if not and your finances allow you can have the treatment privately in Germany, Australia etc.

Dont give up the fight Spartacus.

All the best 

Roy

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

User
Posted 30 May 2019 at 18:41

Those three dates Lyn

Results

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

 

User
Posted 30 May 2019 at 18:55

A 1000 in 2020. I’ll be dead surely?

User
Posted 30 May 2019 at 20:31
Hi Bazza ,

not much that I can add , stay strong

Barry

I hope I make ten I am on 8&1/2 at the moment

User
Posted 30 May 2019 at 21:05
My PSA was over 1000 3 weeks ago and I am by no means dead. Hang on in there!
User
Posted 31 May 2019 at 17:37

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

User
Posted 31 May 2019 at 18:10
Normal reading so it seems there is no particular activity going on in your bones or liver (I would have been more worried about your liver, tbh).

Have you had a bad chest infection recently? Just wondering about the comment that you have some signs of collapsed lung indicative of recent infection. Maybe the 90 reading is erroneous?

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

User
Posted 31 May 2019 at 18:27

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

User
Posted 31 May 2019 at 18:52

These were also bloods taken as the hosp which I’ve never had before, always just a separate blood centre. When do you reckon I should have a blood centre PSA for comparison? I so hope you’re right.

this is a surreal few days - oceans of tears, tons of close cuddles, so much love between Jo and I and an overwhelming feeling of being robbed because of our age and our situation and that everything is so perfect between us. She really was my first true love and despite 34 years with another, my mind obviously never expunged her memory. She is a truly beautiful woman inside and out and I cannot imagine my life without her in it or hers without mine. This is so effing tough Lyn.

 

 

User
Posted 31 May 2019 at 19:42

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

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

User
Posted 01 Jun 2019 at 05:46

Thanks Lyn xxx

 
Forum Jump  
©2021 Prostate Cancer UK