Hi,
I’m looking for a little advice from you all as I know a lot of you are very well informed on the processes behind the treatment for advanced prostate cancer. You’ll be able to see where we started from my profile I believe but I have some more info from a letter received from my Dad’s onco.
This is our timeline:
Feb/March 2016 - LHRH analogue injections
April 2016 - Docetaxel chemotherapy x 6 cycles
March 2018 - maximum androgen blockade
June 2018 - palliative radiotherapy to the lumbo-sacral spine
June 2018 - Abiroterone with prednisolone
November 2019 - Abiroterone with Dexamethasone
May 2020 - Single fraction radiotherapy to the lower lumbar spine
May 2020 - Diethylstilbestrol 1mg once daily with Asprin 75mg and Dexamethasone 0.5mg
Current PSA 29
We stopped the Diethylstilbestrol 1mg once daily with Asprin 75mg and Dexamethasone 0.5mg for 4 weeks due to dad being very unwell. The onco seemed to think it was rare but this medication could have been making him ill. We have now gone back on to this (4 weeks in now) as onco said we don’t have any other options.
Do we have any other options? Should there be anything we are asking for/to try?
My dad is now experiencing pain in the same place as before. Could we ask for another session of radiotherapy?
We are all struggling to believe this is the end as a few months ago Dad was seemingly fine and in relatively good health.
Thanks all for any advice xxx
"Some people care too much. I think it's called love." by A.A. Milne |
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Originally Posted by: Online Community MemberHi,
Thanks for taking the time to reply to this.
No, he wasn’t offered any chemotherapy once the Abiroterone stopped working and he doesn’t have any health conditions. I will definitely mention this option to the oncologist in October when we get to speak to him again. I will also find out what chemotherapy he would be talking about.
As for the clinical trials, dad was on one when when we first found out about the advanced prostate cancer but I believe it was about 2018 that we stopped hearing from them. Can you go onto one again at this stage?
I have no idea about private treatment and in what kind of regions the costs are. Where would you even find this information out?
Thank you.
I was reading your bio real quick and noticed the previous chemo experience and low white blood cell count that your dad experienced. They give filgrastim with the other chemo (Cabaxitaxel) for a few days after each infusion to prevent that now so hopefully that would help. Definitely worth asking at least if he would be eligible and if not why not? Only reason I can think is that they don't think he would be able to handle the treatment. But best to make sure and be clear on that.
My dads been on two clinical trials so far and has had tests done recently for another possible clinical trial after he finishes chemo. Again I don't think there are many open currently but hopefully there will be some opening up later in the year or early next year. . His oncologist would need to refer him for any clinical trials and I'm sure they would if any came up. But its something to keep in mind and to give some hope :).
As for the private treatment. We personally can't afford it so have no experience with that but from reading other peoples post here and on other forums and lots of googling it's definitely not cheap. For example here is a thread talking about one form of treatment https://community.prostatecanceruk.org/posts/t13262-Lutetium-177---PSMA-Treatment . But it doesn't work for everyone. The scan for it, which would show that your dad might be eligible is around 3k. Each treatment after that around 8k or more at least in the UK. Worth asking your oncologist if that's within your budget and seeing if he thinks there might be private treatment that could work for him. I thought I'd mention it as well as its another option although not very realistic for most people.
My pleasure. I'm not an expert but have a dad who's been going through this for a few years with different treatments. Another one I thought of that's been offered to my dad is radium-223. Its for the bone mets. Obviously everyone is different and your dad might not be suitable. I would think and hope that the onco would prescribe some treatment if he was eligible. No harm in asking though. Hopefully there is something they can try!
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Consultants are not permitted to mention private treatments during NHS consultations unless you have specifically asked them to, in which case they should do so. However, they may not know about all possibilities nor be expert in which are suitable for you.
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First off, you need to change your avatar name or at least remove the email address - you have opened yourself up to weirdos, spammers and scammers. If you don't know how to change your name, email the moderators for help.
I can't think of any other treatment that could be tried if the Stilboestrol is not tolerated well this time; it seems that your dad's cancer is now castrate resistant. Palliative RT is unlikely to be offered again if it hasn't solved the pain issue. If he tolerated the docetaxel well last time, the onco should have considered whether he is still well enough to tolerate it again but the clinical decision may have been that the risk is too high now - have you asked?
Even if there are no more treatment options, that doesn't necessarily mean that the end is close. He may be with you for longer than you dare hope. The important thing now is to ensure the referral to palliative care and / or Macmillan or the local hospice team has been made; generally speaking, they are far more skilled at pain management than hospital staff or GPs and while it cannot be guaranteed that end stage prostate cancer will be pain free for all men, ut seems that there is some work to be done to get your dad's pain meds balanced so that you can make the most of whatever time is left.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ah, I just checked back on your previous posts- I had forgotten that dad has been on a palliative pathway for some months now. You need to speak to the palliative care nurse about reviewing his pain meds.
It is a difficult balance between dulling the pain and being knocked out most of the time. In some cases, the pain is well controlled but the person just sleeps all the time and then quietly slips away. The palliative team will do their best to keep him comfortable.
The PSA is fairly irrelevant once active treatment stops; the doctors and nurses will go by how dad is feeling, how mobile he is, whether he appears to be deteriorating rather than the PSA number.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lynn,
Thanks, as always for your response.
Im not sure what happened with my username - must have changed when I added more info about Dad yesterday. Does it look ok now?
The onco mentioned that another option would be chemotherapy again but it wouldn’t be like the one he had at the start of his journey, this one would be more aggressive and would make him very unwell?
Are there any important questions we should be asking the onco? I will ask Dad to speak to the hospice about the pain in the meantime.
Thank you. X
"Some people care too much. I think it's called love." by A.A. Milne |
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Also, while I think of it, does anyone have any knowledge on pain meds?
Dad really isn’t a fan of the meds making him constipated. Is there a pain medication that doesn’t do this? Or is there something to take alongside (not just normal laxatives) that helps with this?
Obviously we will be in touch with the hospice regarding this but all of your knowledge is gratefully received as always x
"Some people care too much. I think it's called love." by A.A. Milne |
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I messaged the moderators and it looks like they have sorted your username out 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ah thank you but I think it was me that sorted it. After I saw your message I looked into it.
"Some people care too much. I think it's called love." by A.A. Milne |
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Originally Posted by: Online Community MemberThe onco mentioned that another option would be chemotherapy again but it wouldn’t be like the one he had at the start of his journey, this one would be more aggressive and would make him very unwell?
Hello Penny. I'm just wondering if they offered your dad chemo after Abiraterone stopped working? Or was he not eligible due to a health condition etc? Usually after Abiraterone fails most men go onto clinical trials and or chemotherapy if they are in good enough health. Why did the onco say it would make him very unwell do you know? If the doctor was talking about Cabaxitaxel then I would say its similar as Docetaxel in terms of toxicity and side effects, maybe even easier to tolerate for some men. Definitely ask about that at least and if the option is there its definitely worth consideration.
Another thing you might ask about if your dad would be eligible for any clinical trials? Not many recruiting right now but again something you can at least ask about. Another option would be going private for treatments not available on the NHS (obviously depending on your dad's financial situation).
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Hi,
Thanks for taking the time to reply to this.
No, he wasn’t offered any chemotherapy once the Abiroterone stopped working and he doesn’t have any health conditions. I will definitely mention this option to the oncologist in October when we get to speak to him again. I will also find out what chemotherapy he would be talking about.
As for the clinical trials, dad was on one when when we first found out about the advanced prostate cancer but I believe it was about 2018 that we stopped hearing from them. Can you go onto one again at this stage?
I have no idea about private treatment and in what kind of regions the costs are. Where would you even find this information out?
Thank you.
"Some people care too much. I think it's called love." by A.A. Milne |
User
Originally Posted by: Online Community MemberHi,
Thanks for taking the time to reply to this.
No, he wasn’t offered any chemotherapy once the Abiroterone stopped working and he doesn’t have any health conditions. I will definitely mention this option to the oncologist in October when we get to speak to him again. I will also find out what chemotherapy he would be talking about.
As for the clinical trials, dad was on one when when we first found out about the advanced prostate cancer but I believe it was about 2018 that we stopped hearing from them. Can you go onto one again at this stage?
I have no idea about private treatment and in what kind of regions the costs are. Where would you even find this information out?
Thank you.
I was reading your bio real quick and noticed the previous chemo experience and low white blood cell count that your dad experienced. They give filgrastim with the other chemo (Cabaxitaxel) for a few days after each infusion to prevent that now so hopefully that would help. Definitely worth asking at least if he would be eligible and if not why not? Only reason I can think is that they don't think he would be able to handle the treatment. But best to make sure and be clear on that.
My dads been on two clinical trials so far and has had tests done recently for another possible clinical trial after he finishes chemo. Again I don't think there are many open currently but hopefully there will be some opening up later in the year or early next year. . His oncologist would need to refer him for any clinical trials and I'm sure they would if any came up. But its something to keep in mind and to give some hope :).
As for the private treatment. We personally can't afford it so have no experience with that but from reading other peoples post here and on other forums and lots of googling it's definitely not cheap. For example here is a thread talking about one form of treatment https://community.prostatecanceruk.org/posts/t13262-Lutetium-177---PSMA-Treatment . But it doesn't work for everyone. The scan for it, which would show that your dad might be eligible is around 3k. Each treatment after that around 8k or more at least in the UK. Worth asking your oncologist if that's within your budget and seeing if he thinks there might be private treatment that could work for him. I thought I'd mention it as well as its another option although not very realistic for most people.
My pleasure. I'm not an expert but have a dad who's been going through this for a few years with different treatments. Another one I thought of that's been offered to my dad is radium-223. Its for the bone mets. Obviously everyone is different and your dad might not be suitable. I would think and hope that the onco would prescribe some treatment if he was eligible. No harm in asking though. Hopefully there is something they can try!
User
Consultants are not permitted to mention private treatments during NHS consultations unless you have specifically asked them to, in which case they should do so. However, they may not know about all possibilities nor be expert in which are suitable for you.
User
Originally Posted by: Online Community MemberConsultants are not permitted to mention private treatments during NHS consultations unless you have specifically asked them to, in which case they should do so. However, they may not know about all possibilities nor be expert in which are suitable for you.
Very true. I asked my dads onco about possible future treatments. He said there would't be any outside of the ones he mentioned on the NHS. I think a lot of oncologist do private consultations as well. At least the ones we've had so far but no point for us at least unless you can afford it.
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This is a bit like cruel false hope Anchovi; if there had been any more treatments that were suitable to Penny's dad he would have been offered them and / or we would have pointed out on here what he hadn't tried yet. If there was something else to try, he would have been able to have it on the NHS.
If you had read back over all Penny's previous threads (and her sister's) you would see that he has been under palliative care for quite some time so would not be eligible for current trials.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I didn't get a chance to read all of her posts. I misunderstood the situation. I just assumed it was normal palliative care which most men with MCRPC are getting not end of life care. Really sorry for the misunderstanding.
But it looks like the oncologist was being a bit vague here. Makes it seem like the option is there. That's why I thought other options might be on the table as well.
''The onco mentioned that another option would be chemotherapy again but it wouldn’t be like the one he had at the start of his journey, this one would be more aggressive and would make him very unwell?"
I would definitely try to clear this up with your dads oncologist Penny.
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Some advice would be appreciated. Is there anything else we can try?