Monday, I saw the oncologist for the result of my PET/CT scan.
Not good, although the lymph node that was treated with RT has apparently been successfully 'zapped', there are 4 further glowing nodes and the decision is not to treat with RT.
I was told that I have '5 years left' (I hadn't asked)
The news that it was now terminal wasn't really a surprise - my outlook has always been that it was likely to get me in the end but as a now 70 year-old, I felt that in the next decade there would be all sorts of other things lurking down the road other than PCa.
It's something that I can cope with emotionally, I certainly don't feel in a bad place at the moment.
I really would have liked to have outlived my wife (those who are fortunate to be in a similar relationship will understand where I'm coming from) but now I realise I cannot do anything about that, so that thought is easier to bear- or perhaps more accurately, to avoid thinking about.
So my lot is not such a bad one ( it would be, were I younger) The main reason for this post is to bring up a couple of points.
1. I was offered early chemo but as I was told by the onco that the latest info from Stampede is that it prolongs survival rate by an average of eight months, I declined.
2. Having been told three months ago, that if the scan showed a problem, there were "hundreds of things we can throw at it" , I have now been sent down what seems to me the bog standard route of Bicalutamide; followed by Zoladex 'for life'.
3. Pitching up yesterday at the surgery to book the first Zoladex injection, I was told, "We can give it to you today or the next appointment will be on the 28th November" !! (shortage of nurses, some sick ) I explained that I couldn't have it that day (2 week's bical first) but I didn't wish to wait a whole month. Stalemate! I was pondering my options (private?, another surgery?) when the receptionist found she could squeeze me in on the 14th Nov - better !
Dave
Not "Why Me?" but "Why Not Me"? |
User
Oh Crescent,
You have loads of tools still in the box and my advise would be never listen to time frames because they simply don't know it is all guess work . Trevor was given 6-18 months and here we are 3 /years on . It's not easy to do but don't waste a minute of the next 10 years . 😊
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Dave,
Re your point 2, here's a list of some of the things I'll be discussing with my Onco tomorrow:
Next treatment – Radium 223 or Docetaxel chemo? In which order? Why?
Go through other possible treatments:
Now? Later? Never?
Stilboestrol
Hsp90 inhibitors
Abiraterone *
Metformin
Celecoxib
Immunotherapy
Olaparib
VT464
Other trials ??
* I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves.
Edited by member 27 Oct 2016 at 08:56
| Reason: Not specified
User
User
Ah Dave, that's a bummer eh?
Thinking of you
*****
We can't control the winds - but we can adjust our sails |
User
Crescent, although the average is an extension of 8 months, the span is anything up to a few years - what if you are one of those men? Also, I wonder if the phrase 'for life' was used loosely or thoughtlessly? I can't imagine that when and if the zoladex fails, they would be able to (or even want to) refuse you the myriad of other treatments available.
As you well know, there are men on this forum with node mets and worse for whom the standard HT works for many years - I can't understand what evidence they might have that in your case it will only last 5 years and at this stage they can only be guessing. Be brave x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I'm in quite a similar boat to you I suppose , with lymph involvement and an impending 2nd PET scan very early next year. I agree with all that the others have said above , but even in my case at the age of 49 , my Onco when pushed said 4 to 6 yrs. I think it's the lymph thing.
I wish you all the best and keep fighting
Chris
User
Ahh
You mean " crossing the line " , a ceremony rife on the seas.
I remember very well as an engineer officer cadet , being rubbed down with a weeks worth of galley slops ,then doing the ceremony with Neptune , then being lobbed in the pool.
That and glass hammers , sky-hooks , and saving bread for the donkeys which pulled the ship through the Panama Canal. Oh those were the days.
Take care
User
Dave, so sorry about your prognosis which I hope is over pessimistic. Can't grasp why you can't be prescribed a syringe of Zolly and get the nurse at your GP practice to inject it quite quickly. . Just as an aside talking of engine oil etc, I did read many years ago that there was an increased risk of cancer, though I believe it was testicular rather than prostate if the private parts were subject to contact with used engine oil, perhaps through contaminated overalls fo example.
Barry |
User
The thing is, those pranks we loved would now be considered workplace bullying or (in the case of my clothing factory, sexual harrassment) - John recently completed a disciplinary investigation after the warehouse staff kept tying up the apprentice and putting him in a skip .... his mum put in a formal complaint. In the old days, we were all as tough as boots!
I don't know whether the surgery usually sets a schedule or whether the patient sorts it out (I suspect it varies from GP to GP) but I think it is very important that you have the injection every 12 weeks precisely rather than every 3 months.
Edited by member 28 Oct 2016 at 17:42
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberI don't know whether the surgery usually sets a schedule or whether the patient sorts it out (I suspect it varies from GP to GP) but I think it is very important that you have the injection every 12 weeks precisely rather than every 3 months.
Absolutely right. My GPs are almost paranoid about getting the injection done every 12 weeks, not one day before or one day after. The reason they are so zealous - they fear tumour flare.
Re the bookings. Personally I make an entry on my calendar 12 weeks to the day after receiving an injection and then contact the surgery about 5 weeks beforehand to book a nurse appointment to do the injection. I know the staff in the surgery keep a close eye on this and chivy and chase any patients who are tardy in making arrangements. Best not to make any assumptions about your GP's practice though. Retain control to yourself, you're the one with the iron in the fire.
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Dave,
Re your point 2, here's a list of some of the things I'll be discussing with my Onco tomorrow:
Next treatment – Radium 223 or Docetaxel chemo? In which order? Why?
Go through other possible treatments:
Now? Later? Never?
Stilboestrol
Hsp90 inhibitors
Abiraterone *
Metformin
Celecoxib
Immunotherapy
Olaparib
VT464
Other trials ??
* I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves.
Edited by member 27 Oct 2016 at 08:56
| Reason: Not specified
User
User
Ah Dave, that's a bummer eh?
Thinking of you
*****
We can't control the winds - but we can adjust our sails |
User
Crescent, although the average is an extension of 8 months, the span is anything up to a few years - what if you are one of those men? Also, I wonder if the phrase 'for life' was used loosely or thoughtlessly? I can't imagine that when and if the zoladex fails, they would be able to (or even want to) refuse you the myriad of other treatments available.
As you well know, there are men on this forum with node mets and worse for whom the standard HT works for many years - I can't understand what evidence they might have that in your case it will only last 5 years and at this stage they can only be guessing. Be brave x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Yes, Lyn,
Perhaps thoughtlessly as you say, or maybe over-sensitivity on my part. The term was written on the pro forma letter I was given to hand in to the surgery, it only had two options, as I recall, "6 months / two years" and those had been crossed out and 'for life' hand-written by the onco and inserted instead - perhaps 'on-going' or 'indefinite' might have been better but it doesn't bother me- just worthy of a mention.
I'd mentally pictured a ball-park time as up to ten years, so to be given 'five years' , without even an 'about' in front, did sound a bit arbitrary.
Dave
Not "Why Me?" but "Why Not Me"? |
User
I'm in quite a similar boat to you I suppose , with lymph involvement and an impending 2nd PET scan very early next year. I agree with all that the others have said above , but even in my case at the age of 49 , my Onco when pushed said 4 to 6 yrs. I think it's the lymph thing.
I wish you all the best and keep fighting
Chris
User
I've just discovered that thread title is far more morbid than I intended !
I'd erroneously thought that 'Crossing the Bar' meant crossing the equator and meant it in the sense of 'A New Chapter' (that one having already been bagged by someone else).
In other words, passing a significant way point in my PCa path - not what 'crossing the bar' implies.
Not "Why Me?" but "Why Not Me"? |
User
Ahh
You mean " crossing the line " , a ceremony rife on the seas.
I remember very well as an engineer officer cadet , being rubbed down with a weeks worth of galley slops ,then doing the ceremony with Neptune , then being lobbed in the pool.
That and glass hammers , sky-hooks , and saving bread for the donkeys which pulled the ship through the Panama Canal. Oh those were the days.
Take care
User
hah ha ha ha ha - saving bread for the donkeys .... you fell for that one????
When I was a teenager I had a temp job in stock control at a clothing factory. The young lads would be sent by the women (scary and all-powerful) to request tartan thread, a card of buttonholes and sometimes, a long stand.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Chris,
Fancy, I never knew you were a ginger beer, fond memories of sending lads to find the bosun for a long stand, or the key's to the fog locker.
I was on deck myself, but still spent much of my formative youth, in the engine room, or bilge diving or otherwise deeper than my knackers in diesel and heavy oil.
There is various thoughts on the internet about oil being one of the environmental risk factors for PCa, have you any thoughts on that?
:)
Dave
User
We have a thread somewhere on here about people's past jobs & hobbies - a significant proportion had worked with oils, engines etc. A number more had loved motorbikes.
My dad was a Chief Engineer in the navy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Dave, so sorry about your prognosis which I hope is over pessimistic. Can't grasp why you can't be prescribed a syringe of Zolly and get the nurse at your GP practice to inject it quite quickly. . Just as an aside talking of engine oil etc, I did read many years ago that there was an increased risk of cancer, though I believe it was testicular rather than prostate if the private parts were subject to contact with used engine oil, perhaps through contaminated overalls fo example.
Barry |
User
So Dave, you were a plant-pot ??? Haha a long stand. Not heard that one.
Yes a lot of time ( 30 yrs in total ) exposed to oils and chemicals. As an engineer officer you would always have a rag in your boiler suit back pocket soaked in diesel oil , for cleaning and slipping the hand rails etc. Could be a link there I guess
User
I used to send people to fetch rubber nails and an ammadoo.
User
It's been good to read the stories of Crossing the Line for the first time and also of the time-honoured practice of playing 'fetching' pranks upon recruits/apprentices.
Also to learn about the possible carcinogenic effects of exposure to industrial products. Some time back I attended a PCa support group lecture given by a well known figure.
She was of the opinion that her bladder cancer was caused by her early work as a research chemist, including time at Aldermaston.
I have a question regarding the 'norm' of Zoladex injections at the GPs surgery.
Is it normal for them in your experience to set up the schedule or is the onus on the patient to make an appointment every three months?
I will of course, find out the system at my local practice but I would be interested in what happens elsewhere. Thanks.
Dave
Edited by member 28 Oct 2016 at 13:41
| Reason: Not specified
Not "Why Me?" but "Why Not Me"? |
User
The thing is, those pranks we loved would now be considered workplace bullying or (in the case of my clothing factory, sexual harrassment) - John recently completed a disciplinary investigation after the warehouse staff kept tying up the apprentice and putting him in a skip .... his mum put in a formal complaint. In the old days, we were all as tough as boots!
I don't know whether the surgery usually sets a schedule or whether the patient sorts it out (I suspect it varies from GP to GP) but I think it is very important that you have the injection every 12 weeks precisely rather than every 3 months.
Edited by member 28 Oct 2016 at 17:42
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberI don't know whether the surgery usually sets a schedule or whether the patient sorts it out (I suspect it varies from GP to GP) but I think it is very important that you have the injection every 12 weeks precisely rather than every 3 months.
Absolutely right. My GPs are almost paranoid about getting the injection done every 12 weeks, not one day before or one day after. The reason they are so zealous - they fear tumour flare.
Re the bookings. Personally I make an entry on my calendar 12 weeks to the day after receiving an injection and then contact the surgery about 5 weeks beforehand to book a nurse appointment to do the injection. I know the staff in the surgery keep a close eye on this and chivy and chase any patients who are tardy in making arrangements. Best not to make any assumptions about your GP's practice though. Retain control to yourself, you're the one with the iron in the fire.
User
Oh Crescent,
You have loads of tools still in the box and my advise would be never listen to time frames because they simply don't know it is all guess work . Trevor was given 6-18 months and here we are 3 /years on . It's not easy to do but don't waste a minute of the next 10 years . 😊
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Dave,
One tip might be useful:
At my surgery the nurses would put the zoladex in somewhere around my navel, and they seemed to think it important to put it in a different place each time, so they wouldn't hit what was left of the one inserted 3 months previously.
AND they didn't keep any sort of record, they expected me to remember and be able to tell them where the previous one had been put in.
So to make things simple, I thought of my belly as a map, and followed the sun, summer north of the navel, autumn to the east, winter to the south, and spring in the west, it worked for me, and ensured that the zoladex's were going in to a place where the previous one was a year old and had hopefully fully dissolved by then.
:)
Dave
User
Similar for me at my surgery except they go left, then right, then left again. So, when I put the entry on my calendar for Zoladex in 12 weeks time I also write XXXX SIDE this time.