Bazza , I am sorry that your head is where it is. I can not tell you what to think or how to behave as I am me and you are you however I can tell you how I now feel about stuff.
When I was first diagnosed every day was torture, you no doubt were there too. It took me a few months to start to understand a day worrying was a waste of a day of my life. Since then that thought process has got stronger and stronger as I have achieved or witnessed things I never thought I would when first diagnosed. I get my latest blood test results tomorrow, two years ago that would have meant I had not slept for two nights and felt sick with worry. Now it means I wonder if I shall have an Eccles cake or a 4 finger kit Kat whilst I am waiting, I can not change anything, life is good today and it will be tomorrow whatever the result. A day will come when life actually is not so good and I have no idea what I will be like on that day or thereafter but that is not today and won't be tomorrow so I refuse to let fear spoil those days.
As I said, I am me and you are you but I hope you can take some of my mental strength into the near future at least.
Rooting for you always.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Bazza
For me, at the beginning of my journey, you and others sharing your stories are both inspiring and scary. Scary in the sense that I get an idea of what might be ahead for me in a few years, but inspiring in that others (including you) have overcome so much. Despite the challenges, it makes me realise that there is hope, even though some days this gets to us all. So thank you for sharing your story - your posts have helped me and given me hope. And best of luck as the medics and you decide on next steps.
Ulsterman
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My memory is much better than yours, I remember all the times you have thought you were not strong enough to bear whatever news or results you feared. In fact, even when your worst fears were realised, you bore it and survived. Newer members would not know of the demons you have nailed and continue to face and so can be forgiven for underestimating your distress but lovey, there are others here who know that dark place as intimately as you do. I can remember that you thought you would give up and die at the mere suggestion of recurrence or salvage treatment, and again at the prospect of being incurable but here you still are, living and loving and surviving and creating memories with the people who love you.
Your cancer has never followed the rules and I think the biggest mystery is why you never ever reach castrate level - if the onco can get to the bottom of that then happy days. The big jump this month could simply be due to the change from one hormone to another. If the onco suggests chemo, give it serious consideration - some cancers that do not respond well to HT are particularly susceptible to chemo and as has been said above, even if you do develop bone mets chemo and some of the newer treatments can knock the mets right back. Ask them what their theory is about you never achieving castration.
There was a post from someone here a while back - they had peeked at their scans and frightened themselves but it turned out that the bright bits were okay and it was the dark bits to worry about or something like that. Don't go all amateur medic ... it is never a good plan!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sounds wonderful Bazza - can you take John & ChrisJ with you?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I think you're both brilliant in your handling of your current situations and the fact that you can laugh at yourselves even while you go through the rubbish that is thrown at you.
BOTH role models in my book
We can't control the winds - but we can adjust our sails |
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Hi Baz
Have you spoken to your GP about Prednisilone to ease your aches and pains
Meanwhile I am concerned that you are feeling so down
You are one hell of a guy as you have been so honest about your fears and general feelings about this damned curse. So, Spartacus, up and at 'em my old son.
Please get this Switzwerland thing out of your head.
I lost my son to train suicide because I didn't recognise the symptoms of his depression and as sure as hell I won't let you go down that path if there is anything that I can do to prevent it.
Don't apologize , think of your family
We all love you on this site as you are part of our family
Ray
User
Bazza you sound really down and i don't have the words to lift you.
I have always admired your attitude to your cancer but I can see that there comes a time when it all feels too much.
Please don't try to shoulder this burden alone but ask your GP for help. I assume that on a very basic level regarding the acid reflux for instance, that you have been given Omeprazole or one of those drugs (can you take things like that if you are on treatment?)
If it helps with the reflux then at least that's one less thing to fret you.
You know you have the support of all of us >
Please don't give in (although I appreciate it's easy for me to say that isn't it - I'm not the one suffering)
We can't control the winds - but we can adjust our sails |
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Bazza,
I can't change your thoughts but I can say that some of your conclusions on what might be happening is off. Firstly many on here have bony mets and I have forvthe past 5+ years. Survival is good amongst this group with good responses to hormone therapy. I haven't had chemo yet and this can extend life plus there are other options. But you may not have any bone mets so wait for the results. Don't focus on the what might be"s just the here and now.
If you have had a ct scan too watch out for any soft tissue spread in the major organs. If there is none then this is very good news indeed.
Keep the faith you have time on your hands. Wait for the results, listen to your onco and come back in here with good news.
We are all rooting for you.
User
I think orchiectomy causes hot flushes as well Stuc :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I don't think he should put his balls anywhere just in case someone comes along with a big pair of pliers. Best keep them tucked away Bazza
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn, sorry to impose on Barry's thread, but I had assumed that without my shrivelled peas I would not need such drugs as Prostap, being the cause of the hot flushes. But if you're saying chopping off them still produces hot flushes then I'll keep a hold on them. Barry keep them intact sounds the best advice.
Cheers
Stu
User
Hi Stuc, they are caused by the lack of testosterone not the HT
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That meal seemed to be missing a Ginsters pasty mate. Schoolboy error !
LOVING the sound of France 🇫🇷
Jealous ! Live strong
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Bazza
You involuntarily became my role model a while back , and now I have read this post I'm going to have to go on Amazon later and order some vaping stuff too !!
Seriously I'm sorry to hear your news. It's such a s**t isn't it. Not ever really knowing. Let us know how Guys goes ok , and my fingers will be crossed for you.
I've been following your advice exactly , and I too am piling on the pounds what with HT , plenty of steak , rioja/shiraz and a blob of Stilton every night.
Best wishes
Chris
User
I think you're both brilliant in your handling of your current situations and the fact that you can laugh at yourselves even while you go through the rubbish that is thrown at you.
BOTH role models in my book
We can't control the winds - but we can adjust our sails |
User
Good to get an update from you Bazza - I wonder whether they will suggest adding Casodex to get a bit of a boost. Have you had your testosterone measured recently to make sure you are below castrate-level?
We are going through the trauma of discovering that our daughter's lovely guy was actually a bell-end ..... I wish it was the other way round.
Let us know what happens next week.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good evening Bazza,
Well Bell-ends PCa and vaping I am sure there is a connection there somewhere but I can't for the life of me think what it could be🤓
As Chris has so elequently said it is sh..t sometimes, so not so good news on scans and PSA but hey the holidays sound pretty good. I have fingers crossed that the trial options have a good outcome , there has been such strides recently.
Wishing you all the best Bazza.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Bazza
Sorry to see things going the wrong way and hope you and your Onco can formulate a plan. As for the vaping make sure you get a good mod and chase that cloud, it makes all the difference as the ones off the shelf aren't up to the job.
Roy
User
Hey Bazza,
keep your chin up, it aint over until the fat lady sings.... I've got my fingers and toes crossed for you , god bless,
User
Bazza
you know from our historical conversations that I have total respect and admiration for your abiity to tell your story as it is, no pussy footing about just told with beautiful literary skills and straight from the heart.
Your blog is still a wonderful source of information and guidance interspersed with great tales of your travels, love of food and wine and very much the love you have for your family. It is awful when your much beloved child partners up with a "bell end" as you call him, standing back and hoping to God they see the light without divine intervention. Looks like you caught a break on that front.
I think I may have given Chris the link to your blog, the two of you are probably completely different characters but your fears and anxieties relate very closely.
Chris if I didn't I wish I had !!
So Bazza you are taking up vaping, I can see you with your nice Jeeves like housecoat,PJs, slippers, glass of finest red wine in one hand and the vape gadget in the other. Looking like you stepped straight off the set of The Great Gatsby. As you say if it is what floats your boat you go right ahead and enjoy it, hardly going to do you any harm is it?
The past 9 months or so seem to have been good for you in terms of travel and enjoyment. I am sure Guys will come up with a cunning plan that will keep that PSA down and those other bits under control so that you can continue to enjoy your life to the maximum.
It is lovely to see you post and sounding very upbeat if I may say so.
Loads of best wishes and a big virtual hug
xx
Mo
User
So tomorrow, I'm off to see a new ONCO to discuss trials and new drugs. With three lymph nodes involved and the Prostap halting PSA rise but not slowing cancer progression into the nodes, I am at a crossroads - do I have Enzalutamide on its own or Abby? Does having one preclude it or the other being available later on down the road? Does a trial using one prelude the use of it or the other on another trial or singularly later on. Is one better than the other given my stats (PSA 5.23 two pelvic nodes 2cm and one para aortic node 2cm?) - should I hold fire until there is further progression (I am completely asymptomatic and feel as fit as a fiddle albeit overweight after two years on Prostap) or should I just go for broke and take another drug in concert with Prostap to slow the process and nip it in the bud until it becomes strong enough to warranty further intervention?
I know these questions are best asked of an ONCO but would value the advice of someone who is of a similar stage and is or has been offered a trial with Enzalutamide or Abby.
User
Bazza, keep your mind open just in case the onco proposes chemo as one of the options, to knock the cancer back and make it more vulnerable to the other treatments.
Might it be worth asking whether you could have a new biopsy? Your disease often seems atypical; i just wonder whether it could possibly have morphed into one of the less common types.
Good luck x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Bazza, I am going away today and not back until after new year so just to say thank you for your quips and one-liners and to wish you a Christmas of happy moments. Stay well, my friend x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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And so it came to pass that the road of certain uncertainty has, for me today, become a lot more certain. After a year on Enza and two years on Prostap (progressively higher doses given at shorter intervals), my PSA started to rise, albeit slowly last year to 6.6 with a T of 1.7 and a doubling time of 6 months. It was decided last month by my onco that we should switch to Zoladex (same dose) to see if that made any difference with bloods to be taken six week's hence (April 20th.) Well it sure made a difference - PSA doubled to 13 and T at 2.7! The onco seemed flummoxed at such a dramatic rise when, for the past several months, the doubling time had been around 6 months. Now it appears to be 6 weeks.
The plan is to do a fresh lot of scans (last lot were done a year ago - I have been offered them in the interim but have refused because of the anxiety they cause.) To date, I remain completely asymptomatic and as fit as a butcher's dog albeit the weight is still too high and the tiredness gets to me. I have been left shellshocked by these most recent PSA readings and have no clue why there should be such a dramatic rise in such a short time when on the Prostap, although the PSA was rising, it was doing so much more slowly and I was coping emotionally.
Now, I am beside myself with worry and with all the talk of the next inevitable step being chemo, know that I am perhaps just a couple of years away from meeting my maker. I have asked my onco about timescales but she seems to be much more positive and says that the fact I am feeling so well is very encouraging and I should be looking to enjoy several more years than I fear. For those that know me, I was worried when my PSA went up from 0.03 to 0.06!
Any sage advice from those in the experienced camp as to why my PSA is behaving so irrationally would be welcome. My CNS believes that my GP nurse who recently administer the Zoladex may not have done it properly. Time will tell as they say. Today is for worrying myself to death.
Thank you.
Bazza
User
Hi Bazza
I'm sure you're aware that I know less than you about PCa and that my journey isn't as dramatic or long as yours , by I just feel Lyn is going to crack this for you and use the words tumour and flare together. Hopefully you've just antagonised the cancer and it is having a nasty reaction , and then it will settle down again. I know it's different to you , but when I stopped HT last year the first 3 results suggested extremely rapid doubling and then it settled down again. Having said that it's taken 8 months from 0.13 to 3.0. It's still eating away. Im tackling it with Shiraz and nightly Stilton as mentored by yourself.
Stay strong !
User
I don't know the answer Bazza. I just wanted to say I'm thinking of you and hoping that there is a logical explanation of the doubling figures.
As Chris says, perhaps Lyn can shed some light on it for you
We can't control the winds - but we can adjust our sails |
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The oncologist is the expert on your disease Bazza but I have two thoughts ...
a) zoladex is much more difficult to administer so do we know if the GP nurse is trained to do it?
b) zoladex is more susceptible to being stored incorrectly :-(
c) I think you were having more than the normal dose of prostap because you were having it more frequently? In which case, going to a 'normal' dose of zoladex may have seemed like a 'free for all' to the cancer cells?
What is your main aversion to having the chemo sooner rather than later? When you and I were first joining this site, chemo was a last ditch effort to make men more comfortable in the end stages but things have moved on quite dramatically since then. Lots of men have found that the chemo makes HT more effective for longer - perhaps worth considering properly?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn
The CNS mentioned that the GP nurse who administered it could have easily accidentally expelled the pellet before entering the skin. Another thought is a flare although I wasn't aware that, already being on ADT, whether you could have a flare changing to another ADT. The dose rate for the Zoladex was the same as Prostap 12 weekly given at a six weekly interval. It just seems so strange as nothing in my recent history has indicated such a dramatic rise. Just in case, the CNS gave me a monthly shot of Zolly today, bloods in three weeks and then scans to confirm or otherwise. My theory is that returning to Prostap, although failing might be the lesser of two evils as my rate of PSA rise is slower on this than Zoladex.
I'm petrified of my own shadow, you know, so I'm sure you can imagine my fears about Chemo being the last stage in treatments. Once that is done, there is literally nothing left, or is there?
Thanks again Lyn. You have always managed to get me to see things more clearly.
Bazza
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Have to agree with everything that Lyn has said Bazza , Si has just started his second round of chemo and far from being the last option as it was years ago it is know such a first option for many oncos .
Si has had 4 years almost drug free!
Common Sparatacus you can do this ! I believe in you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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You are as brave as a lion sometimes, my friend and have already coped with more than you could have imagined possible, so you would cope with chemo as well. You only have to look at Si_ness and irun to see that chemo is no longer the last door out of the building - in both cases, chemo has opened up a sustained period of HT control and good health.
But yes, there are some records of people being given bicalutimide to avoid tumour flare when changing from one LHRH to another.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Bazza,
I'm sorry to hear you've suffered this setback but as others have said, it may be a flare created by the switch.
I really hope they can sort it for you.
I just wanted you to know that I'm routing for you and wish you luck for an early solution.
Your posts have inspired me, and many others I suspect, to change my attitude towards my illness and I feel calmer now than I did in the early days. I have a lot to thank you for and will always be grateful. I hope you find peace again in your thoughts.
Steve
User
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Bazza , I am sorry that your head is where it is. I can not tell you what to think or how to behave as I am me and you are you however I can tell you how I now feel about stuff.
When I was first diagnosed every day was torture, you no doubt were there too. It took me a few months to start to understand a day worrying was a waste of a day of my life. Since then that thought process has got stronger and stronger as I have achieved or witnessed things I never thought I would when first diagnosed. I get my latest blood test results tomorrow, two years ago that would have meant I had not slept for two nights and felt sick with worry. Now it means I wonder if I shall have an Eccles cake or a 4 finger kit Kat whilst I am waiting, I can not change anything, life is good today and it will be tomorrow whatever the result. A day will come when life actually is not so good and I have no idea what I will be like on that day or thereafter but that is not today and won't be tomorrow so I refuse to let fear spoil those days.
As I said, I am me and you are you but I hope you can take some of my mental strength into the near future at least.
Rooting for you always.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Great post Kev ,your thoughts are very similar to my OH ,he gets up every morning and looks forward to the day ahead ,as you say this may change but until then ...
Bazza I hope all works out well for you .
Best wishes
Debby
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Thank you Kev, sincerely.
With so many great men gone before who who be able to know where I'm at, it's good to know there are more forum legends in the making.
I really appreciate your post.
Barry
Bazza
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Originally Posted by: Online Community MemberHi Bazza,
I'm sorry to hear you've suffered this setback but as others have said, it may be a flare created by the switch.
I really hope they can sort it for you.
I just wanted you to know that I'm routing for you and wish you luck for an early solution.
Your posts have inspired me, and many others I suspect, to change my attitude towards my illness and I feel calmer now than I did in the early days. I have a lot to thank you for and will always be grateful. I hope you find peace again in your thoughts.
Steve
Thank you always Steve.
Bazza
User
Hi Bazza,
You know my stance has always been glass half full so you would expect me to tell you there are lots of options pre and post chemo. I haven't had chemo yet because it was not the protocol then and enzalutimide has been successfully put off for a year so far. I await new scan results in a couple of weeks which will dictate next steps but I am focused on today not tomorrow. There is also radium 223 in the wings which a couple of stalwarts are benefitting from at the moment. I have had prostap for over five years now and remains my core treatment. Yes the usual side effects and I have had my fair share of ancillary ailments including infections but I believe that core treatment has kept me stable.
Believe your normal optimism at this time it will serve you well whatever happens tomorrow.
User
Bazza
For me, at the beginning of my journey, you and others sharing your stories are both inspiring and scary. Scary in the sense that I get an idea of what might be ahead for me in a few years, but inspiring in that others (including you) have overcome so much. Despite the challenges, it makes me realise that there is hope, even though some days this gets to us all. So thank you for sharing your story - your posts have helped me and given me hope. And best of luck as the medics and you decide on next steps.
Ulsterman
User
User
Not in a good place people.
Starting to feel complete exhaustion with four monthly doses of ADT every six weeks. My shins ache, tits that any woman would be proud to own, I have neuritis in my right shoulder (non cancer related), my bones and body aches all over. I have no motivation, my acid reflux is returning and I have all the stress of CT and bone scans in a couple of weeks. A year ago, this cancer thing was a breeze but then it always is if you're asymptomatic. Now, I just feel like buying an EasyJet flight to Switzerland and be done with it.
Sorry
Bazza
Edited by member 04 May 2017 at 18:36
| Reason: Not specified
User
Hi Baz
Have you spoken to your GP about Prednisilone to ease your aches and pains
Meanwhile I am concerned that you are feeling so down
You are one hell of a guy as you have been so honest about your fears and general feelings about this damned curse. So, Spartacus, up and at 'em my old son.
Please get this Switzwerland thing out of your head.
I lost my son to train suicide because I didn't recognise the symptoms of his depression and as sure as hell I won't let you go down that path if there is anything that I can do to prevent it.
Don't apologize , think of your family
We all love you on this site as you are part of our family
Ray
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Bazza
You are nearly folklore mate and we all look up to you big-time. Feel so bad for you and have always looked at you as my role model. I don't know what to say I'm afraid but we all love you. Try to keep fighting !
Chris
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Bazza
So sorry to read about how you're feeling.
Ulsterman
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Bazza you sound really down and i don't have the words to lift you.
I have always admired your attitude to your cancer but I can see that there comes a time when it all feels too much.
Please don't try to shoulder this burden alone but ask your GP for help. I assume that on a very basic level regarding the acid reflux for instance, that you have been given Omeprazole or one of those drugs (can you take things like that if you are on treatment?)
If it helps with the reflux then at least that's one less thing to fret you.
You know you have the support of all of us >
Please don't give in (although I appreciate it's easy for me to say that isn't it - I'm not the one suffering)
We can't control the winds - but we can adjust our sails |
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My uncle has a poor choice in motor vehicles. Against my advice, her recently bought a 16 year old junk heap which subsequently cost, in addition to the £1200 he overpaid, a further £1000. For £2,200, I advised him, he could have laid down a deposit on a brand new vehicle and take out a PCP deal over three years paying around £120 a month for a decent vehicle covered by warranty and that would start first time.
I digress. Yesterday, I felt like the junk heap he had purchased. Pricked more times than a monkey falling into a cactus plant, I had my follow up CT and bone scan. The last time I had scans was a year ago. Back then, three lymph nodes were involved and the bone scan was clear albeit it was showing darker areas where my bones and joints are succumbing to the ravages of being on ADT for two and a half years and middle age. My PSA also just rocketed to 13 having gradually crept up from 1.6 over the past year.
During the bone scan, the screen to the left of me showed two black screens and as the plate passed over my body, I could make out hundreds of twinkling lights. I really hope this wasn't indications that I am lighting up like a Christmas tree. Also, they had to re-scan my hip which wasn't exactly reassuring.
Tomorrow, I return for the results. I dread this appointment like a convicted killer might dread sentencing and am sitting here alone in my lounge imagining all kinds of scenarios: multiple lymph node involvement, attachment to major organs, multiple bone metastases. I am scared, my heart is aching with fear, my mind buzzing with 'how long left?'
I was under the impression that bone mets indicate the final stage and that the median time from discovery of these to death is 18 months. I am just so scared of a future I now have no control over and that primary and secondary treatment have failed to address the inexorable rise in PSA. I feel that I am being conventionally treated with no left field thinking. Maybe that is unfair on my consultant but know the reality is chemo then death - or does it have to be this way?
Physically, I feel great and normal, asymptomatic and without any pain. My only issues are the psychological damage this disease is causing, grade three gynocomastia and extreme fatigue - but I can live with those. What I cannot live with is further progressively bad news and no hope. I fear tomorrow as if it were my execution day. Maybe it will be.
Bazza
Edited by member 17 May 2017 at 13:51
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User
Hi Baz
I really do feel for you old chum. I can't allay your fears as this is all a very personal thing,
but:
Bone mets are an indication that the cancer is spreading and not an indication of final stage, so
try to put that theory to rest. I refer you to members' records and to some of those on this site and how they were diagnosed when they already had mets and how many years they managed to survive .
One in mind already is dear Old Al, just look at his record and see how he fared .
He was diagnosed with extensive mets and had a PSA over 1000 and lived for 9 years from his diagnosis drinking a bottle of red wine a day. Where did you get the 18 months median time to death from? That is probably old information. I think they can generally do a bit better today.
Nobody knows when any of us is going to die, so live in hope of a few more years on this planet.
User
Hi Bazza, I am so sorry that things are where they are. Waiting to go and get results is like being trapped in a situation over which you have little or no control. What this awful disease does to us physically and mentally is dreadful.
All I can say is that post salvage radiotherapy my mind goes off creating all sorts of scenarios, none of them good or helpful.
I am attending a "Living With Cancer" course at Maggie's which is attempting to get me to live in the moment and accept the position I am in rather than the constant maelstrom I often find myself in. Easier said than done....
Initially this is stirring up all sorts of emotions but I am hoping that in the longer term it will help me deal with my situation without getting angry/upset/depressed, I could go on. I wonder if I had the right surgeon, did he dig deep enough during my RP, what if somehow I was diagnosed earlier, did the biopsy spread my cancer...........?
It's a very difficult thing to do but unfortunately we cannot fully control what happens next and in my clearer moments I realise that I can only live life as best as I can now. This helps me to continue and enjoy things. Like you I feel OK just now other than fatigue, some post radiotherapy bowel problems and hot flushes! At other times I can go to very dark places and scenarios. I don't think I will be alone in this.
Like you I dread going in to my Cancer Centre to speak to my oncologist as all I seem to hear is more bad news but ultimately these guys are trying to cure us or give us longer on this Earth whilst balancing out quality of life issues against treatment possibilities.
I will be thinking about you tomorrow as will many others on this forum. We are all linked by this awful disease but at least we can communicate, support and be there for each other.
Yours, Ian.
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Bazza
Unless I am mistaken you have not even started Chemo yet?
You have got years in you still.
All the very best regards to you
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Dear Bazza,
I can't begin to put us in your situation so can only imagine what it must be like but I do feel for you and your wife and hope that tomorrow's news isn't as dire as you are anticipating.
Best wishes and fingers crossed for you
We can't control the winds - but we can adjust our sails |
User
Bazza,
I can't change your thoughts but I can say that some of your conclusions on what might be happening is off. Firstly many on here have bony mets and I have forvthe past 5+ years. Survival is good amongst this group with good responses to hormone therapy. I haven't had chemo yet and this can extend life plus there are other options. But you may not have any bone mets so wait for the results. Don't focus on the what might be"s just the here and now.
If you have had a ct scan too watch out for any soft tissue spread in the major organs. If there is none then this is very good news indeed.
Keep the faith you have time on your hands. Wait for the results, listen to your onco and come back in here with good news.
We are all rooting for you.
User
Sage advice and sound female logic required Lyn for tomorrow
Baz x
User
My memory is much better than yours, I remember all the times you have thought you were not strong enough to bear whatever news or results you feared. In fact, even when your worst fears were realised, you bore it and survived. Newer members would not know of the demons you have nailed and continue to face and so can be forgiven for underestimating your distress but lovey, there are others here who know that dark place as intimately as you do. I can remember that you thought you would give up and die at the mere suggestion of recurrence or salvage treatment, and again at the prospect of being incurable but here you still are, living and loving and surviving and creating memories with the people who love you.
Your cancer has never followed the rules and I think the biggest mystery is why you never ever reach castrate level - if the onco can get to the bottom of that then happy days. The big jump this month could simply be due to the change from one hormone to another. If the onco suggests chemo, give it serious consideration - some cancers that do not respond well to HT are particularly susceptible to chemo and as has been said above, even if you do develop bone mets chemo and some of the newer treatments can knock the mets right back. Ask them what their theory is about you never achieving castration.
There was a post from someone here a while back - they had peeked at their scans and frightened themselves but it turned out that the bright bits were okay and it was the dark bits to worry about or something like that. Don't go all amateur medic ... it is never a good plan!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Listen to Paul and Lyn they are both the voice of reason when panick rises. Trust me on this because I have more panick moments than Iceland with a power cut .
You are Spartacus! You can do this and you will !
I also remember the post that Lyn is talking about re lights on the scan and yes just like our moods it's the dark patches that are more to worry about .
Thinking of you for tomorrow x
BFN
Julie X
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That has to go down as one of the most inspired posts ever seen on this forum x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Oh Bazza
I don't have anything useful to say, and no expertise to pass on, but I'm sending love and strength and hugs and a rather soggy comfort blanket (yes even blokes called Spartacus are allowed to have the comfort blanket too!).
E
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So, today was a tale of two halves.
In the morning, I was in St Thomas' having an EMG test on my right shoulder. Move forward via shuttle bus to Guys..........
It's been 15 months since my last scan. CT shows slight increases in 3 of the 4 nodes but one has curiously shrunk!?
THE GOOD NEWS, NO, THE BEST NEWS IS THAT THE BONE SCAN IS COMPLETELY CLEAR!
The challenge is to reduce the T as this has risen again to 3.7 from 2.7 last month.
I asked the ONCO and she said I was a challenging case who is not following any orthodox pattern. I told her not only was I beautiful but also beautifully unique. She agreed.
The plan is to come off Enza immediately as she feels it may now be causing T to rise, reserving the right to go back in it if felt appropriate. I'm also changing back to Prostap with review and bloods in one month with the possibility of Decacapty or Degarilixl as the next cocktail. Oh, I was also offered an orchiectomy. I said Bollocks! She thought I might say that. Despite the PSA rises, there has been a huge period of time since my last scan so she is encouraged by the lack of cancer progress. The challenge is to put a lid on the rise in T.
Suggestions on a postcard.
I feel a sideways kind of celebration so am opening an obscenely expensive bottle of wine tonight and my eldest daughter is cooking a meal for the whole family.
Bliss
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Fantastic news Bazza,
Brilliant
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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I did think last night that an orchiectomy might be the sensible option but hesitated to suggest it. Alex has done very well for many years, having taken that particular plunge.
Very, very happy for you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Too much of a gamble Lyn. I still value my Crown Jewels and would rather leave as I came. Intact
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Hi Bazza, just catching up that is fantastic news. Enjoy your evening with your family. Ian.
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Barry that is beautiful news. Simply wonderful. I'd have thought having your nads removed would be a walk in the park after what you have been through :-))
I'm fancying a glass of that wine with you. Cheers
Chris
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Pleased to hear of your good news Barry, which should put your mind in a better place. I've often thought what's the point of keeping those shrivelled peas, all they do in my case is produce testosterone, which is the last thing one wants. They would at least get rid of these bloody hot flushes. However George talked me out of having them removed.
I'm sure your wine was much better than the bottle we have just had, that's not to say ours was bad.
Cheers
Stu