On going

Sorry to hear David’s PSA has gone up again . Let’s hope it doesn’t go up anymore as it’s only just above the 2.1 they say is ‘normal’…

January is a long wait for his next consultation and I’d keep trying to bring it forward. Hope they will have some options ready then in case David’s PSA does rise again.

Thinking of you both .

Phil

I didn’t know that heart problems restricted use of HT. Thats quite a blow and I understand your worries. Hopefully you’ll get into see the consultant before Christmas  and they’ll have some plan to move forward.

I must say the Zoladex is doing it’s job . Feels very different to the Prostap. I think more physical side effects but not so bad on my mind, so I’m grateful for that.

Take care

Phil

Trevor Boothe had serious heart problems including two heart attacks while on HT but they never stopped prescribing it. Steve has also had HT after a heart attack.

So, David saw the urologist and he recommended a PSMA pet scan as the PSA has gone up to 2.3. David then receives a letter from the urologist apologising, and informing David he had been told David has to have a CT scan and an MRI scan before a PSMA pet scan will be considered. It seems the urologist has been overridden. I know his PSA is still low, but it was low at diagnosis which is the concern.
Now trying to get a quick discussion with the urologist to ascertain what’s the best move, cut to the chase and pay for a PSMA thingy, have the CT and MRI scan offered and see what happens. CT scan next week, MRI mid December.
Getting to discuss options with the urologist is not easy.
This is a pain, he’s recovered well from the heart attack, feels well and he has a lot of living to do. What he doesn’t want is a second rate service due to budgetary restraints or consultants pulling rank.

David hates hospitals with a vengeance and situations like this leave him running for the hills.
I’m trying to logically assess the best way forward as its my role.

Suggestions welcome.

Leila.

Edited by member 27 Nov 2021 at 16:31  | Reason: Not specified

Dave, you’ve made my day! Peppa Pig World it is then. 

We have been chatting and decided to try and talk to the urologist  calling his secretary Monday morning. 

What we want to know is will having both scans and the PSMA scan over load  him with radio waves. I don’t want a glow in the dark husband. 😉

Leila 

Edited by member 27 Nov 2021 at 15:17  | Reason: Not specified

Tomorrow is the third scan, David’s has had a CT,MRI and tomorrow he’s having an radioistropic scan. He seems to have recovered well from his heart attack in July, and been signed off. I hope one day the different medical teams will talk to each other, this doesn’t seem to happen now, sadly. His last PSA was 2.3, we hope to see the urologist in January to discuss the outcomes of his three scans. Fingers crossed for a good outcome and the appointment not being cancelled again. 

We have been doing all our usual stuff, David feels well, and we are planning a small but good Christmas with a few celebrations. 
We have been part of this group for over five years, a group that given us smiles tears, support, good advice and clear information.

So, may we wish you all a Merry Christmas and a Happy New Year, and a heathly, 2022 to  each one of us.

Thanks for being there all of you.

Leila x

Thanks Lyn, We are planning a pleasant sociable safe Christmas, leaving all the scan stuff till next year.

I hope you and yours have a Safe Sociable and Happy Christmas.

Thanks for holding us together, your advice, common sense, and practical approach amongst all the emotional angst that can sometimes swamp us is invaluable. 

oh, I forgot the blessed humour and dry wit. 

Leila 

I’m sure you are the right gal for the job. I’m not practicing these days or having to make such decisions. I’m doing some supervision and other bits…. It’s hard times Lyn, keep doing the right thing.
Leila

Edited by member 20 Dec 2021 at 22:01  | Reason: Not specified

Quite, and we always will

Leila x

David had his PSMA pet scan last week, and yesterday he had a call from the urologist. The cancer has woken up sadly and spread to his lymph nodes. His situation will be discussed at the next MDT mtg and he will be referred to an oncologist. 
Not what he wanted to hear. It seems treatment options are doxetaxel with hormone treatment of some sort, or enzalutamide. The urologist wasn’t sure if enzalutamide is funded in Wales, anyone know? 

David is not keen on chemo, he’s seen what it can do,but it will be discussed with the oncologist.
The scan results report will be posted to us, and we can have a good read, as the phone consultation is hard going, we were not prepared, and it was a bit difficult to digest all the information  with the emotional feelings washing about.

The urologist is good, but he dashes off his answers, takes questions and responds, but it’s hard to take it all in an unplanned call. 
I'm not sure why the urologist is recommending enzalutamide as David was doing well on prostrap for three yrs, it seems it is usually for castrate  resistant men, he was not resistant to prostrap at anytime.He is not an oncologist so, we have to wait and discuss when we can.

Im am pi##@d off and upset, but gathering my thoughts and questions.

Thanks for being there all.

Leila 

Thanks Phil, these lymph nodes are a pain aren’t they. Seems you ‘boys’ are on a similar path. Please let us know how you get on.
Keep in touch and stay strong 💪 you G9 lads are magic.

Leila  

Sorry to hear this news Leila, it really is a rollercoaster ride.

When Rob (hubby) was initially diagnosed with advanced PCa he was put straight onto prostap. When we spoke with oncology they offered him docetaxel or enzalutimide to have along the prostap.

My understanding was it was an alternative to chemo and it was for Rob to decide which he wanted first. I remember Lyn advised me at the time that because of covid they were offering enza instead of chemo because of risk of catching the virus….before this enza wouldn’t have been offered because of cost.

Wishing you both all the very best with all future treatment.

Elaine

Hi Lyn, Thanks for that. I'm hoping he can access the enzo, as I doubt he'd cope with the chemo very well. He gets a jippy tummy very easily, skin rashes, he is a sensitive soul, unlike me. 😉Now in the waiting game for MDT to discuss options.

Currently wishing I was still a smoker, but thankfully I have none in the house!I gave up 25yrs ago. The craving seems strong today. I might have to go into town and stand downwind.

Thanks again.

Leila 

Thanks, for the replies 

David is  worried about is the toxicity, and side effects of chemo,and the effects on him.He's had  the scan and the results and he has definite lymph node invasion and a dubious shadow on his liver, which needs an ultra sound to check it out.
He saw a locum urologist last week, who was a pleasant guy, but had no information at all, and the letter he gave  us did not match the discussion he had with David, it was quite different. He gave David a prescription for one week of bicalutamide and suggested we talk to the GP. GP has advised we wait to see an oncologist, I can see how cancer kills, it ain’t the disease it’s the system and inefficiency.

The oncologist he has been referred to has evidently left the hospital and no replacement yet appointed, hopefully mid March, we’ve been told. Only found this out as I called the new oncologist’s secretary to be informed he’s off to pastures new.
So, we wait, he has decided to make contact with the prof who did his brachy and see him privately.

David  decided to contact the Care Oncolgy Clinic in London he had a zoom on Friday,  they’ve given him a script of metaformin,continue on the statins and an antibiotic, lots of dietary advice, most of which we do. Evident.y the metaformin and statins regulate the blood sugars…. And go some way to starve the cancer. We read Jane Mc Lelland’s book, How To Starve Cancer, and it seems sensible, she is doing well after two types of cancers.

My faith in the NHS is at a low ebb at the moment. No oncologist, no one able to make a decision, and poor communication from the medics, so we pay for a  private service.

Yes, he’s had a heart attack and he’s now stage four, but he’s rowing 10,000 metres a day, we manage our land chop wood, and he’s abreast of financial, political and current affairs. He informed the GP he isn’t ready for the knackers yard yet, and hopes a plan can be made soon? He did say this with  an edge of cynicism in his voice, I wonder why.

Ok, my moan is over, I’m a bit pi%%ed off David is a bit on the autistic side and doesn’t deal well with poor communication or little or no  plans. He needs exact clear information, time scales and exact honesty. I have to manage his inabilities to manage the lack of planning and exactness and believe me it is not easy. He likes clarity. 
The way things are glowing I’ll be needing a darkroom with a larger glass of wine….. we have both stopped supping wine, me to support him, but I might become a secret  in the barn boozer, on the carrot wine  ( I jest )  it’s disgusting stuff. 
Well that’s us, I’m going to do my gym work out and not hit the carrot whisky.

Thanks for reading if you have.

Leila 

Edited by member 27 Feb 2022 at 15:03  | Reason: Not specified

Haha, the carrot wine is used as a slug killer in the garden, not drinkable, your ok I’m not becoming a lush in the barn swigging home brew.  As for the silk cut don’t tempt me… it has crossed my mind more than once. 
The comfort blanket would be lovely,  please send first class, in the meantime the cats are very cuddly and comforting.My little gym helps too, excercise is my friend these days.

Leila 

The delay was because the cardiologist was off sick with Covid, and none of the other specialists were prepared to make the decision, our GP gave us an “ off the record” suggestion from one of his mates, who is a cardiologist 😄 suggestions he’d risk going off the anticoagulant. Thankfully David’s cardio bloke recovered and agreed it was ok to come off the dammed stuff.

He is also doing the Care Oncology Clinic protocols and following a pretty strict eating regime, suggested in Jane Mclellands book, HowTo Starve Cancer.

David loves his food, and credit to him he’s sticking to it, and now has two glasses of red wine a week or a pint, a man who loves life, food and wine he’s determined to give this bl@#%y cancer a run for its money.

He’s is seeing the oncologist at the end of the month to discuss the Apalutamide, and he’s thinking he might delay it as his PSA has gone down quite a bit. He’s read the side effects of it and is considering delaying it for a while, has anyone else delayed it? Views would be welcome. Since going back the Prostrap he suffering joint pains libido has vanished, and he’s tired, he thinking adding yet another’s drug to the cocktail will increase the side effects.

We are still growing our veggies and doing all our normal stuff, just a bit slower. David was ‘ gobsmacked’ to be offered the Apalutamide as it is to say the least a bit on the costly side.

Tomorrow is our wedding anniversary, he might drop off the diet and enjoy a glass of red wine, restaurant booked.

Happy days.

Leila x

Thanks for your reply. We’ve done a considerable amount of reading about diet and cancer, and it seems the evidence is quite convincing. Have a read of the book and check her out. I’m aware some oncologists say diet does no matter, but there is an increasing school of thought and clinicians saying otherwise.

Also metformin, statins and some strong antibiotics also seem to have some pretty good evidence behind them.

David’s keen to keep well keep do the best for himself….it’s the way he is.

Hope you are doing ok? Everyone has there own way of dealing with this dammed disease, nothings set in stone is it.

Keep going 😉

Leila

Finally got the okay for the apalutamide today, David can come off the anticoagulant as he’s recovered from his heart attack quite well. He finds being back on the prostrap is giving him aches in his groin but he seems to be doing ok. 
We had a lovely anniversary do and celebrated my birthday, I married him on my birthday so he’d only have one date to remember 😉

So, he’s incurable, enjoying life, and we have some plans.

Long may it continue.

Leila

Edited by member 27 Apr 2022 at 00:25  | Reason: Not specified

Lentils and cous cous are my idea of hell, I am afraid - plus I don't eat anything green and I need food to stay in its own area on the plate and not mix.

You seem to be holding a steady ship right now; enjoy it while it lasts. Hopefully a good summer coming for us all.

David’s score on the doors are still at <0.1 He’s doing ok, has a few aches & pains, one of them being me 😉He’s now a young 72.The quiet shadow  on all this in my mind is, he has never had a high PSA and I quietly wonder what’s lurking around the corner. I know, I’m over thinking, but it’s me. 
He was diagnosed in September 2015 and after 6 months of  HT pills bicalutamide. He had his HDR on April 19th 2016, then  a month of radiotherapy in June…. 3 yrs of Prostrap and 2 years of no hormone treatments. Then up went the dammed PSA and he’s now back on the prostrap along with apalutamide. Along with the heart attack last July his daily drug regime is a right pain. I’m pleased to say we are still running our small holding, both of us growing our veg and living the good life. 
Then I remember our heady days of backpacking around SE Asia, and other interesting places. He l doesn’t  even have passport a these days. This needs to be addressed I think. 

Edited by member 01 Aug 2022 at 13:18  | Reason: Not specified

Thanks Phil, we seem to manage the garden and David’s quite good at DIY. He is also planning to paint the house. We both love travelling, but we have a much loved elderly cat who can’t cope with being left alone for more than  a night, and he can’t manage the cattery. I know we are softies, but it’s us.  If a family member can come and look after him we’d be off like a shot, but everyone seems too tied up with their own stuff.

if we could get a sitter, we live near the sea in a beautiful valley with wonderful scenery from our garden…. Any offers 😂

Leila