So this might not be easy reading but perhaps will give you some peace of mind in the future - no one should be in a situation where they wonder if they could have done more.
Enzalutimide is not an option for your dad because once abiraterone fails, all the science shows that enza will also fail.
Radium 223 doesn't treat or slow down the cancer; it can reduce the pain of bone mets but I don't think your dad is experiencing high pain?
PARP inhibitors can prolong life a bit but only for men who carry the BRCA gene. As your dad was diagnosed in his later years, it seems highly unlikely that he is a BRCA patient.
The spots on his skull and ribs are in some ways the most worrying as far as quality of life in the future goes. I hope that they have given you good information about spinal cord compression, the signs and indicators to look out for and the importance of seeking emergency health advice if you suspect it.
Have they referred him to the palliative care team, pain clinic or local hospice? These are the people with the expertise you need now. Advice on how to give him the best possible care so that he has good quality of life, can enjoy reasonable activity and make memories - especially with the summer and better weather coming and the end of lock down.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Rosalie, (and Anne) I certainly can't offer any medical advice. I think Lyn has explained what the treatmenta are and you can now rest assured that you have done your best.
My advice is more philosophical. Both of you are talking about your fathers who are both 85 and up until a year ago lived full and active lives. I think that is what you have to celebrate. I know this disease is horrible, but what is the alternative? Heart disease, dementia, some other cancer? The real problem we are all facing is that our parents are going to die and that is inevitable. My mother is 92 and incredibly healthy, I would love her to live in good health forever, but I know that won't happen it's impossible. So my advice is don't get too hung up on the fact this is prostate cancer, if it weren't this, it would be something else in two or three years time. Remember the good times, be thankful they have got this far in good health, make the best of what time is left, make sure they are as happy and comfortable as can be. When the end comes grieve for them, but be happy they lived a long life.
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User
Hello Dave
Thank you also for your very good advice. It definitely does provide comfort knowing they have led a full and healthy life and sadly a lot of people don't get this....
You are completely right and I do feel so luck to have both my parents still alive - I just think with cancer it is so hard to see someone so fit, get so ill and basically fade away so quick before their time but this is just the way things are and as you say best to enjoy the day and not look too much into the future!
Lets hope we all can enjoy a more normal summer this year!
xx
User
Hi Rosalie, sorry I can't help. I too would have expected HT to have lasted longer. I'm mainly posting to get your post back to the top of the list.
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User
To keep starting new threads about the same thing makes it difficult for members to reply as they may not see what other replies you have already had.
The pain doesn't necessarily mean it has spread. The fact that the pain is in the same place as before means that the zap of RT to reduce the pain didn't work for very long and the bone tumours are still active; even if there were new bone mets identified in a scan, it wouldn't make any difference to the outcome. It is more concerning that the PSA is rising steadily - that should be the focus right now, particularly if he is at castrate level. You say that his testosterone is low but do you know the actual number? As posted on your other threads, if his cancer has become hormone independent already, you would expect them to add another hormone - usually either bicalutimide, abiraterone or enzalutimide.
For other members, here are Rosalie's other threads on the same problem.
https://community.prostatecanceruk.org/posts/t25599-PSA-rise-during-hormone-treatment#post243232
https://community.prostatecanceruk.org/default.aspx?g=posts&m=244478#post244478
Edited by member 04 Sep 2020 at 22:19
| Reason: to activate hyperlinks
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I am 53 yrs old and had surgery nearly 6 yrs ago. I’ve literally only just started HT and have deferred it for my own reasons re quality of life over quantity. However I’ve had breathlessness unexplained also for maybe a year. I have extensive spine mets and some rib mets. All scans otherwise clear. I was told with rib mets that the body automatically adjusts to pain and you breathe more shallow , hence the laboured breathing
User
Hi Chris,
Thanks so much for your reply. Dad also has spine and ribs mets so that could be part of the problem. It's all such a learning curve.
I hope you're doing well.
I like your quote and I'm going to make some lemonade!
Best wishes.
User
Dear Rosalie
many thanks for your reply.
I saw on your profile that your dad is 84/85 and so is my dad! He was diagnosed with prostate cancer in 2018 but the hormone injections kept things ok for around 18 months which is quite normal.
I hope the treatment works well for your dad and you get to enjoy lots of quality time with him...hopefully lockdown will be easing over the coming months.
anne
xx
User
Dear Rosalie
I am so sorry to hear your news - it's absolutely devastating when this happens and we went through it last year so totally understand your shock.
My dad, who is also 85, had his treatment ( abiraterone) stopped in November last year and was told apart from some palliative radiotherapy there was no other treatment or anything else they could do - we were heart broken and thought this is the start of the end... however he has his 4 sessions of radiotherapy early December and for the past 2 months he is so much better, appetite fully returned, no pain, no liquid morphine needed, less sleeping, more mobile, swelling in leg gone. We are under no illusion that the cancer is still there and will most likely spread at some point but for the moment we have our dad who is doing OK and we never expected that last year.
So please keep hope, every person with cancer is totally different and it sounds like your dad is still fairly mobile so hopefully this will continue on for a long time.
best wishes
Anne
x
User
Hello
Are you having a face to face appointment tomorrow? Hopefully things will become clearer for you all.
My dad sadly has not had any face to face meetings (just a telephone call as they problems working zoom) and as his hearing is not good and he does not use the internet not ideal. Yes I think the oncologist was quite frank, basically he apologised that nothing else could be done but just some palliative radiotherapy...he never mentioned how long my dad has left (unless my mum and dad did not tell us!) but the Macmillan mentioned months back in December so like you, we wonder how long we have left.
My dad does not show his emotions too much but yes he was subdued after hearing about the treatment being stopped. I also thought my dad would give up then but the radiotherapy has improved things so I hope they can do something for your dad to give you as much time as possible.
I just hope they can find a cure for this disease one day very soon as it’s very cruel for everyone involved.
hope things go ok for you all tomorrow , please let us know how it goes.
xx
User
Hi Dave.
Thanks for your wonderful message. You are so right. If it weren't this it would probably be something else.
There is consolation in knowing we tried everything and now we must try to make the best of the time that is left.
We feel very grateful that dad got to 84 without ever having had a serious illness.
I hope your mum continues to stay healthy for as long as possible and that you continue to rally. I just read your profile and can see that things are going well for you. Long may that last.
Best wishes,
R.
User
Dear Rosalie,
I've read your thread and just wanted to say how sorry I am that the treatment stopped working so soon for your Dad. It must have been such a shock as he was so fit and healthy. My dad died a couple of years ago with a combo of mouth cancer and Alzheimer's.
Although we know our parents won't go on forever, and they had a good life, it makes saying goodbye no less difficult. Somehow, we think our parents will always be there, no matter how old, so it's perfectly natural you tried to look in to all the options.
Spend as much quality time as you can with your Dad now, and make some good memories.
Wishing you all the best,
Ali x
'Sorrow looks back, worry looks around, but faith looks up' |
User
I believe that is normal ie you stay on it forever.
Edited by member 23 Aug 2021 at 22:47
| Reason: Not specified
User
Yes, as Franci says, men usually continue with the decapeptyl/ prostap / etc right up to the end.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Probably not too much of a problem. I was on zoladex, even when I had been off it for six months my testosterone was only just above castrate level, so two weeks is nothing.
Decapeptyl is a different drug to zoladex so I can't be sure if they would behave the same, and if you could reliably go six weeks rather than four weeks then I am sure someone somewhere would have said let's save money by only giving it every six weeks. So on balance I would say it probably won't do any harm but don't make a habit of it.
Naturally I would defer to Lynn, Andy62, and quite a few other people on this forum who will have gained a lot more knowledge than me, but I wanted to give you some reassurance before bed time, that harm is unlikely.
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Hi Rosalie, sorry I can't help. I too would have expected HT to have lasted longer. I'm mainly posting to get your post back to the top of the list.
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User
To keep starting new threads about the same thing makes it difficult for members to reply as they may not see what other replies you have already had.
The pain doesn't necessarily mean it has spread. The fact that the pain is in the same place as before means that the zap of RT to reduce the pain didn't work for very long and the bone tumours are still active; even if there were new bone mets identified in a scan, it wouldn't make any difference to the outcome. It is more concerning that the PSA is rising steadily - that should be the focus right now, particularly if he is at castrate level. You say that his testosterone is low but do you know the actual number? As posted on your other threads, if his cancer has become hormone independent already, you would expect them to add another hormone - usually either bicalutimide, abiraterone or enzalutimide.
For other members, here are Rosalie's other threads on the same problem.
https://community.prostatecanceruk.org/posts/t25599-PSA-rise-during-hormone-treatment#post243232
https://community.prostatecanceruk.org/default.aspx?g=posts&m=244478#post244478
Edited by member 04 Sep 2020 at 22:19
| Reason: to activate hyperlinks
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi,
Dad's chest x-ray showed up nothing but the oncology nurse wasn't able to give me any information about the plevis/leg x-ray. We're still waiting for CT and bone scans. I've asked about going private but been told there'd be little difference in wait time and that he's on the urgent list for both.
In the past week since we saw the oncologist his condition has significantly deteriorated. He's got more pain in the groin, lower back and shoulders. Also very low energy and fatigue. And itchy skin (although that could be something else entirely). He also seems very fed up, but I know pain and worry will do that.
Right now, everything is pointing towards hormone-resistance. I know we must wait for the scan results before moving forward or knowing what the cancer is doing but I'm very worried.
When I asked the nurse today about the efficacy of secondary treatment, she said they normally find that patients who don't respond well to primary treatment rarely respond well to subsequent treatments either.
Not very encouraging but there's no point in false hope.
Does anyone have any knowledge about the efficacy of secondary treatments if first-round treatment has become ineffective after only a few months?
Many thanks.
Rosalie
User
His rising PSA tells them that his HT isnt working; they don't need to wait for bone scans. Has he been referred to the pain clinic or hospice/ Macmillan team yet? They are usually the best at sorting out pain beds and getting the balance right - it is not really the urology or oncology departments' speciality.
As I have previously posted, you would expect him to be offered enzalutimide or abiraterone next, both drugs are designed for castrate resistant / hormone independent PCa. If there are clinical reasons for him not being offered either, adding bicalutimide or swapping to stilboestrol can work for anything from a few weeks to a couple of years. But yes, generally speaking, if HT fails this quickly then the adjuvant treatments also fail quickly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
PS do the doctors or nurses know about the itchy skin? If not, worth calling the nurse back. Did he have a full body scan at the time if diagnosis or just a bone scan?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
He had an upper body CT and a full body bone scan before diagnosis.
And, yes, I don't know why they're waiting for the scans. The PSA was tested on the day of our oncology appointment but we didn't get the results until a few days later. I assumed we'd be called back as the PSA had risen but we're not actually going to be called back until the scans have been done. Bloods were also taken on the day of oncology visit for kidney and liver function. The oncologist (actually it was a registrar) said they were running those tests in case they need to change the meds.
The docs and nurses don't know about the itch because dad only mentioned it to me this afternoon though. When I checked his skin was quite dry so I applied some moisturizer and he hadn't had much itch since.
He hasn't been referred for palliative care and in fact if hasn't been mentioned yet. We're in the Republic of Ireland and don't have Macmillan but we do have a local hospice.
If secondary treatment doesn't work, what happens then? That might seem like a naive question but is that the end?
User
Hello,
Dad has been on Zytiga with prednisolone for the past few months after only responding to hormone therapy for about three months before the PSA started to rise and a bone scan showed extensive spread of the bone mets. Thankfully the PSA has come down since he's been on Zytiga. He has developed breathlessness, however and the doctors can't explain the cause. He's slim and has always been extremely fit. His bloods are good and his heart and lungs look healthy. They've suggested that the breathlessness is a side effect of the treatment, but have stated that it's not a very common one.
*The breathlessness did not occur immediately after starting Zytiga but it has been gradually getting worse.
Has anyone else out there experienced breathlessness as a side effect of abiraterone/Zytiga?
Many thanks for any advice or insights.
Best wishes,
R.
User
I am 53 yrs old and had surgery nearly 6 yrs ago. I’ve literally only just started HT and have deferred it for my own reasons re quality of life over quantity. However I’ve had breathlessness unexplained also for maybe a year. I have extensive spine mets and some rib mets. All scans otherwise clear. I was told with rib mets that the body automatically adjusts to pain and you breathe more shallow , hence the laboured breathing
User
Hi Chris,
Thanks so much for your reply. Dad also has spine and ribs mets so that could be part of the problem. It's all such a learning curve.
I hope you're doing well.
I like your quote and I'm going to make some lemonade!
Best wishes.
User
Hello
yes my dad has been suffering from breathlessness for the past 8 months which has got progressively worse. He has spread to pelvic lymph nodes but no organs are affected and his heart etc are all healthy.
The breathlessness has always puzzled me has he was extremely fit, non smoker etc so I worried perhaps the cancer had spread to his lungs but it has not.
My dad was on abiraterone last summer for 3 months, his PSA did reduce but sadly the abiraterone did not work for him and this was stopped in November. He was very ill while on this drug combined with the spreading cancer.
He still is breathless on walking but more mobile, good appetite due to a course of palliative radiotherapy.
We were just told the breathless was due to the cancer but that does not really explain it very well!
sorry that probably does not answer the cause for your dad but thought I would share my dad’s experience.
anne
xx
User
Hi Anne,
I'm sorry to hear that the abiraterone wasn't a success for your father and that the cancer spread.
It's good to hear that he is more mobile now, though and has a good appetite.
I hope things continue that way for him for a long time.
The breathlessness is indeed a bit of a mystery.
Best wishes,
Rosalie.
User
Dear Rosalie
many thanks for your reply.
I saw on your profile that your dad is 84/85 and so is my dad! He was diagnosed with prostate cancer in 2018 but the hormone injections kept things ok for around 18 months which is quite normal.
I hope the treatment works well for your dad and you get to enjoy lots of quality time with him...hopefully lockdown will be easing over the coming months.
anne
xx
User
Hello everyone,
I hope you're all doing well today.
I got some distressing news this morning regarding my dad's cancer.
The treatment has stopped working and they're going to stop it. Dad doesn't know yet. We have an appointment tomorrow and they will inform him. It will crush him.
He's 85 and was diagnosed a year ago with prostate cancer with bone mets. Up until diagnosis, he was fit and healthy. Walking, cycling and working outdoors constantly. It all changed almost overnight although he still walks about a mile most days.
There was no biopsy done, therefore we don't know what type of prostate cancer he has. He only responded to hormone treatment for about three months before his PSA started to rise. He continued with the treatment and was put on abiraterone with prednisolone at the end of October. Now, just a few months in, we learn it's not working even though the PSA is still down.
It seems he either has a rare type of prostate cancer that doesn't produce PSA or he has a combination of "regular" and a rare type.
Can anyone offer me any advice? Although the oncology nurse told me this morning that there's no imminent danger, it feels like it's just a matter of time now.
Many thanks.
Xxx
User
Dear Rosalie
I am so sorry to hear your news - it's absolutely devastating when this happens and we went through it last year so totally understand your shock.
My dad, who is also 85, had his treatment ( abiraterone) stopped in November last year and was told apart from some palliative radiotherapy there was no other treatment or anything else they could do - we were heart broken and thought this is the start of the end... however he has his 4 sessions of radiotherapy early December and for the past 2 months he is so much better, appetite fully returned, no pain, no liquid morphine needed, less sleeping, more mobile, swelling in leg gone. We are under no illusion that the cancer is still there and will most likely spread at some point but for the moment we have our dad who is doing OK and we never expected that last year.
So please keep hope, every person with cancer is totally different and it sounds like your dad is still fairly mobile so hopefully this will continue on for a long time.
best wishes
Anne
x
User
Hi Anne,
Thanks so much for your reply. I'm sorry to hear the treatment also stopped working for your dad but glad he's doing ok.
We'll not know the whole story until tomorrow but I fear the mets are spreading quite quickly. They certainly spread quite extensively during the first hormone cycle before abiraterone was started. If that's the case, I guess his time will be even shorter than if it were a slow growing cancer.
Were the doctors quite up front with your father or did you try to keep certain things from him? I just worry that the facts will crush my father and he might just give up.
Thanks in advance.
Rxxx
User
Hello
Are you having a face to face appointment tomorrow? Hopefully things will become clearer for you all.
My dad sadly has not had any face to face meetings (just a telephone call as they problems working zoom) and as his hearing is not good and he does not use the internet not ideal. Yes I think the oncologist was quite frank, basically he apologised that nothing else could be done but just some palliative radiotherapy...he never mentioned how long my dad has left (unless my mum and dad did not tell us!) but the Macmillan mentioned months back in December so like you, we wonder how long we have left.
My dad does not show his emotions too much but yes he was subdued after hearing about the treatment being stopped. I also thought my dad would give up then but the radiotherapy has improved things so I hope they can do something for your dad to give you as much time as possible.
I just hope they can find a cure for this disease one day very soon as it’s very cruel for everyone involved.
hope things go ok for you all tomorrow , please let us know how it goes.
xx
User
Hi Anne,
We're in Ireland and thankfully, we've been allowed to attend all oncology appointments in person through lockdown. I know it hasn't been the same for all patients so I'm very grateful that we've been able to do that.
I'm now trying to reschedule our appointment for Monday instead of tomorrow because dad's in such good form today and my sister's all agree that we'd be better to wait until after the weekend to tell him.
I will keep you informed.
Thanks again. Xx
User
Hi,
Dad's appointment has been pushed back until next Tuesday.
I still don't know if the bone scan showed that the mets had gotten worse or spread but I do know that one of the reasons for stopping dad's treatment (abiraterone with prednisolone) is because they're afraid that it's affecting his heart.
Is it common for treatment to be stopped in favour of heart health even if it is still working to control the cancer?
Thanks in advance.
Rosalie.
User
Hello,
We finally had our face to face appointment with the Advanced Nurse Practitioner today.
Dad's bone scan showed that some of his mets have gotten slightly bigger and he also has a few new ones. Right now, he has mets in the right and left femurs, pelvis, spine, ribs, right arm and two small spots at the base of his skull. He started off last February with mets in the pelvis and right femur only, so the spread since then has been extensive. He started decapeptyl injections in February 2020, but it had failed by his second injection in August. They did another bone scan then started him on Abiraterone on 30th October.
His PSA has come down but the scan proves that the Abiraterone with prednisolone isn't working so he obviously has to stop taking it.
Dad never had a biopsy so we don't know what type of prostate cancer he has but we're guessing it might be a combination of the common type and a rarer one. We do know that it's aggressive however, as the PSA doubling time is only three months and he had extensive spread within a few months too.
Dad isn't eligible for chemo because he's 85 and considered too frail. He was super fit and healthy before his diagnosis last year though. I asked the nurse about the possibility of Enzalutamide, PARP treatment or Radium 223. She said none of them would benefit him. I'm now wondering if I should push it or get a second opinion. I know I'm clutching at straws but anything that'd give him a bit of extra time would be worth it. The cost of treatment or having to travel wouldn't be an issue.
Thankfully all his organs are healthy and there is no evidence of cancer in the bone marrow or any soft tissue.
I'd appreciate it if anyone could offer any advice.
Thank you very much.
Rosalie.
User
So this might not be easy reading but perhaps will give you some peace of mind in the future - no one should be in a situation where they wonder if they could have done more.
Enzalutimide is not an option for your dad because once abiraterone fails, all the science shows that enza will also fail.
Radium 223 doesn't treat or slow down the cancer; it can reduce the pain of bone mets but I don't think your dad is experiencing high pain?
PARP inhibitors can prolong life a bit but only for men who carry the BRCA gene. As your dad was diagnosed in his later years, it seems highly unlikely that he is a BRCA patient.
The spots on his skull and ribs are in some ways the most worrying as far as quality of life in the future goes. I hope that they have given you good information about spinal cord compression, the signs and indicators to look out for and the importance of seeking emergency health advice if you suspect it.
Have they referred him to the palliative care team, pain clinic or local hospice? These are the people with the expertise you need now. Advice on how to give him the best possible care so that he has good quality of life, can enjoy reasonable activity and make memories - especially with the summer and better weather coming and the end of lock down.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Lutetium PSMA targeted treatment?
May not be available on the NHS and had mixed results on here but may help and doesn't seem to have unmanageable side effects.
User
Hi Lyn,
Thanks for your reply.
It's difficult to accept that there is no further treatment that would bring any real benefit but there's comfort in knowing that all avenues were considered and your message did give me peace of mind.
We have had a visit from a palliative care nurse and they've given us lots of information about SPC. We've also had a visit from an occupational therapist and they've all been very helpful.
I just hope the cancer remains confined to the bones for as long as possible and that dad will have lots of time left with the best quality of life possible.
Thanks again,
R.
User
Hello,
Thanks for your suggestion. I fear it might not be an option but I will certainly look into it.
Best wishes.
User
Hi Rosalie
I am sorry to hear your latest news.
Although our dad’s cancer is not exactly the same it does seem we in a very similar stage and similar background...my dad is also 85 and up until last year super fit and healthy, abiraterone did not work etc.
I cannot advice on anything medical but please have hope, like Lyn said above, hopefully spring/summer is coming and lockdown is easing so should make things a little easier.
My dad got so very sick last autumn and we really did not expect for him to be here now, much better than last autumn (all treatments stopped November apart from 5 days radiotherapy December) and it all feels like a big bonus so we will enjoy the day.
Xx
User
Hi Anne.
Thanks for your lovely reply and for giving us hope.
We will remain as positive as possible and pray for the best.
I wish the best for you and your dad and all your family too.
Best wishes,
Rosalie.
User
Hi Rosalie
thank you so much for your kind thoughts and wishes.
I am thinking of you and your family and especially for your dad.
please keep in touch
xx
User
Hi Rosalie, (and Anne) I certainly can't offer any medical advice. I think Lyn has explained what the treatmenta are and you can now rest assured that you have done your best.
My advice is more philosophical. Both of you are talking about your fathers who are both 85 and up until a year ago lived full and active lives. I think that is what you have to celebrate. I know this disease is horrible, but what is the alternative? Heart disease, dementia, some other cancer? The real problem we are all facing is that our parents are going to die and that is inevitable. My mother is 92 and incredibly healthy, I would love her to live in good health forever, but I know that won't happen it's impossible. So my advice is don't get too hung up on the fact this is prostate cancer, if it weren't this, it would be something else in two or three years time. Remember the good times, be thankful they have got this far in good health, make the best of what time is left, make sure they are as happy and comfortable as can be. When the end comes grieve for them, but be happy they lived a long life.
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User
Hi Dave.
Thanks for your wonderful message. You are so right. If it weren't this it would probably be something else.
There is consolation in knowing we tried everything and now we must try to make the best of the time that is left.
We feel very grateful that dad got to 84 without ever having had a serious illness.
I hope your mum continues to stay healthy for as long as possible and that you continue to rally. I just read your profile and can see that things are going well for you. Long may that last.
Best wishes,
R.
User
Hello Dave
Thank you also for your very good advice. It definitely does provide comfort knowing they have led a full and healthy life and sadly a lot of people don't get this....
You are completely right and I do feel so luck to have both my parents still alive - I just think with cancer it is so hard to see someone so fit, get so ill and basically fade away so quick before their time but this is just the way things are and as you say best to enjoy the day and not look too much into the future!
Lets hope we all can enjoy a more normal summer this year!
xx
User
Dear Rosalie,
I've read your thread and just wanted to say how sorry I am that the treatment stopped working so soon for your Dad. It must have been such a shock as he was so fit and healthy. My dad died a couple of years ago with a combo of mouth cancer and Alzheimer's.
Although we know our parents won't go on forever, and they had a good life, it makes saying goodbye no less difficult. Somehow, we think our parents will always be there, no matter how old, so it's perfectly natural you tried to look in to all the options.
Spend as much quality time as you can with your Dad now, and make some good memories.
Wishing you all the best,
Ali x
'Sorrow looks back, worry looks around, but faith looks up' |
User
Hi Ali,
Thanks for your lovely message. I appreciate you taking the time to write.
I'm very sorry to hear you lost your dad a few years ago. I hope you're at the point where the happy memories outweigh the pain of your loss.
I am doing my best to appreciate each moment. Believe me, I struggle. I've felt very stressed and impatient today for example, but on the whole I'm trying to stay calm and just go with the flow while hoping for the best.
Thanks again for writing and have a nice weekend.
Rxx
User
Hi guys,
I'm jumping in with a comment on Rosalie's father's state of mind.
I also am old (80) and dealing with advanced prostate cancer, although my diagnosis is recent and my treatment still evolving. Nevertheless, my oncologist made it clear that it was not curable and my life expectancy was limited to a few years.
This, of course, was a shock. We all know we are going to die but not too soon, we hope. Hearing an actual time mentioned presents a major challenge to our thought patterns. I have managed this quite well, for one reason - my wife was diagnosed with her own serious carcinoma in the same week. This is bad news for her - she is 8 years younger - but we provide each other with an invaluable discussion forum between equals.
I am not wishing serious illness onto the heads of further members of Rosalie's family, but her father might benefit from meeting/talking/corresponding with other stricken senior citizens, perhaps through this website.
JamesWS
User
Hi James,
Thanks for your reply.
I'm very sorry to hear of you and your wife's diagnoses. I hope you both get the treatment you need and have a lot of quality time left to spend with each other.
Dad's not into computers or phones but I'll certainly suggest it to him. We have a counselling service for cancer patients nearby so he might consider that.
Thanks again.
Best wishes and healing to you and your wife.
Rosalie.
User
Hi all,
Dad's been off Zytiga for about two weeks now. He's meant to have weaned off the steroids too but he's still taking half his dose (5mg daily instead of 10mg) in the hope that it will keep his appetite and energy levels up to some extent.
The doctors were sure the medication was causing the breathlessness, but in reality, the breathlessness has got worse since he came off the abiraterone. He's also got a bit of a cough when he lies down and his face is very puffy. His legs and ankles don't seem swollen, however.
He's had to urinate a lot these past few days but there's no pain of stinging when he passes water.
Now that we don't have our regular oncology appointments, it's really hard to know when something needs to be investigated further or not. It's almost impossible to see a GP. They just advise you to go to A&E where you're sure to wait for hours to be seen.
It's also hard to know if the breathlessness, puffiness, cough, urge to urinate, etc. are all related to the cancer or something else entirely.
User
Rosalie, if he has been taken off active treatment he should have been referred to the palliative care team, Macmillan team or local hospice. These are the best people to advise on his care now - whether that is about practical help or equipment, physiotherapy to help with his breathing, pain relief, treatment that might help with the odema, starting to plan for when he needs more care, talking to him about what kind of ending he would prefer or just simply to give you advice and reassurance.
If he is not currently under a palliative care team or hospice, get on the GP's case ... this should all have been sorted so that you can just concentrate on being his daughter.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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PS - once the right people are involved, you will probably be advised to avoid A&E if at all possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hello,
It's a while since I've been on here but a question has come up and I wanted to check in and see if anyone has any advice.
My father was taken off Abiraterone last March after a bone scan showed his bone mets had spread despite being on the treatment.
Even though the initial hormone treatment had failed before the Abiraterone was started, the oncologist decided to keep giving dad his 6-monthly Decapeptyl injection, in order to keep his testosterone levels low.
My question now is whether patients ever continue to receive Decapeptyl injections after Abiraterone fails? I know it's highly unlikely, but if doctors think it's worth continuing while on Abiraterone, then wouldn't there be some benefit in taking it to keep testosterone low even after Abiraterone fails?
Thank you.
R.
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I believe that is normal ie you stay on it forever.
Edited by member 23 Aug 2021 at 22:47
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Yes, as Franci says, men usually continue with the decapeptyl/ prostap / etc right up to the end.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks for your replies, francij1 and LynEyre.
I emailed dad's oncology nurse and she confirmed that he should indeed still have the ADT. She's rushed a prescription though to our local pharmacy but it'll be a couple of days before the pharmacy can get the meds as they don't stock it. Therefore, it will probably be Monday at the earliest before the GP will be able to give dad the injection.
The injection was actually due on the 19th of August. He won't receive it until the 30th. Do you think the 2 week gap will make much difference? I'm scared that his testosterone levels will rise in the interim and cause the cancer to spread even more rapidly. (I can't ask the oncology nurse as she's off on leave now for the next two weeks).
Am I being overly dramatic or is that a possibility?
Thanks!
R.
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Probably not too much of a problem. I was on zoladex, even when I had been off it for six months my testosterone was only just above castrate level, so two weeks is nothing.
Decapeptyl is a different drug to zoladex so I can't be sure if they would behave the same, and if you could reliably go six weeks rather than four weeks then I am sure someone somewhere would have said let's save money by only giving it every six weeks. So on balance I would say it probably won't do any harm but don't make a habit of it.
Naturally I would defer to Lynn, Andy62, and quite a few other people on this forum who will have gained a lot more knowledge than me, but I wanted to give you some reassurance before bed time, that harm is unlikely.
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Thank you, Dave.
You have reassured me before bedtime and I'll read nothing more until the morning ;)
The others might have a different opinion but that can wait until after a good night's sleep.
Thanks again.
R.