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"No more treatment plans on the table"

User
Posted 04 Feb 2019 at 17:00

My father was diagnosed with advanced and aggressive prostate cancer 9 and a half years ago. It had spread beyond the prostate capsule so surgery was not an option. He had a course of radiotherapy and steroid injections and then moved on to a hormone treatment plan - which was really effective for 9 years (his PSA count on diagnosis was 13.3 and went down to 0.1 while on the treatment). The Doctor warned that this would only be effective for a certain period and then they would have to look at changing things. Indeed, the PSA levels gradually crept up an my dad was told last summer that the drugs were no longer working and that they would try him on steroid tablets (along with something else that I don't recall). He was monitored on this, but was told after 3 months it was not working either (PSA was then 13.6 - higher than at initial diagnosis) and he was recommended chemotherapy as the next course of action - 10 sessions, one every 3 weeks (daxotel). He has had 6 sessions - the lowest the PSA got in that time was 10.7...but this fluctuated from session to session - sometimes rising again, sometimes falling. The drs emphasised that they weren't concerned about the numbers though as they were looking at trends and were happy with how he was responding to treatment. Today, his doctor has advised him to stop chemo early due to an array of  potentially life-threatening side effects he has experienced. Basically, since starting chemo in September he has had an ongoing issue with the urea levels in his urine - indicating poor kidney function, then he had a blood clot in his leg, for which they prescribed blood thinning injections. He has been in hospital over the past 3 weeks (and had to take a temporary break from chemo) because the blood thinning injections caused a serious case of cellulitis. No sooner had this cleared up, he then started vomiting for 72 hours - this in turn effected his kidney function again. They found that it was a small ulcer causing the vomiting - also likely to be a side effect of the blood thinning medication (thank god it hasn't metastasized). The doctor said taking this into account, and going on his most recent scan last week (on the prostate) they are confident that he has received as much benefit in the 6 as he would in the 10 and that they want to stop chemo early. They have said, and I quote "there are no more treatment plans on the table", though he did say in the next breath that he will be checked over in 5 weeks and if fit enough they may recommend he does a milder chemo plan on different drugs. I wasn't with my father for this conversation so I would have asked...is this code for "there is nothing more we can do"? There has been no mention of palliative care yet but I don't want to delude myself with false hope. Has anyone had a similar experience?

 

 

User
Posted 07 Sep 2019 at 07:07

Hi Charlie

Sorry for the late reply, I can’t help with the dialysis but we are in the place where no more treatment is offered and we are ok with it really. It’s a relief not to have the burden of hospital appointments (that won’t apply to you) but in any case that decision was as much with us as the oncology team as I could no longer get my husband out of the house. We’ve had two telephone calls wi the oncology doctor and I asked them to stop sending us appointments now and they were wonderful, they said they would do that but we could ring anytime we needed them. We are fully under palliative care now and it is much better. We are starting a care package and have full support from our GP, surgery, district nurse service and the wonderful local hospice (which keeps getting bad reports in the local press for some internal issues, but gets 100% from us). I think leaving the hope of treatment behind has been a terrific relief to both of us, no more side effects and dragging ourselves up to the hospital, where we both often picked up germs. My husband is being cared for by me and hospice at home unless and until I can’t manage. We have a hospital bed and a syringe driver and night sitters to allow me some rest. It is simply fantastic. I know this can’t be the same in your case because of the severe medical needs, and it is something we nearly needed but were saved from by a wonderful surgeon about two years ago who saved John’s life and his kidney function after a disastrous retention issue. I’m grateful for everything, for the time I didn’t think we would have, for the years of support on here and at the hospital, hospice and GP. I’m glad we have a catheter so that isn’t an issue, I’m glad I have a wonderful family. I’m a positive person in a horrible situation (nearly nine years of it) and still manage to laugh and love and see the best of it all. I think that has saved my mental health and kept me going through all the trials of the last years and I’m hoping through this last piece too. Please accept any and all help now, try to look after yourself too (it’s not easy, I don’t think I brushed my hair yesterday and I had to go to two pharmacies chasing down ampoules of morphine and antisickness drugs, wonder what they thought!), ultimately, our loved ones are going to leave us and we need to keep our energy for showing them love and compassion. I truly feel for you, it’s how to bear the unbearable and somehow we do,

with love 

Devonmaid xxxx

User
Posted 04 Feb 2019 at 19:50

Sorry to hear things are getting difficult. Hopefully there may be other things or support if you follow up on Lyns excellent advise

Bri 

User
Posted 04 Feb 2019 at 18:48

I am so sorry your Dad received this news. It must be totally devastating for you all.

I am sure someone will be able to give you some advice soon.

sending hugs to you 

Suzi 

User
Posted 04 Feb 2019 at 19:32
I don't think it is code for anything, it seems they have stated the position very clearly. There are possibly no more treatment plans on the table.

As it happens, some oncos give 6 chemo sessions while others give 10 so the fact that he has managed to stay well enough to have the 6 is great; don't be sad that he is somehow missing out by not having the other 4. If he does stabilise enough to have further sessions at half dose then great but it isn't a deal breaker as the chemo will have damaged the DNA of the cancer cells already.

It seems from what you have posted that when the hormones began to fail last year, your dad became castrate resistant; that means that the cancer had learnt to feed without testosterone. Sometimes it is referred to as 'hormone independent' instead. It would be useful if you could check what he has already had; options for castrate resistant prostate cancer include:

- Abiraterone

- Enzalutimide

- Radium 223 (only if he has bone mets and it is a maximum of 6 sessions)

- Stilboestrol

- steroids

There may be a good reason why the onco has ruled these out. It may be that he has already had the full set and they have all failed, or that the problems with kidney function, etc mean that he isn't fit enough to have them. If he had steroids last year, there is a chance that he had those with abiraterone; if the abiraterone failed, he cannot have enzalutimide so chemo may have been the last option.

Does dad have an allocated nurse? If so, you could perhaps give him/her a call and ask whether he is now moving into palliative care and if so, who makes the referral - the hospital or the GP? Hospice staff are excellent at things like pain relief, helping patients to apply for any terminal care benefits they may be entitled to, emotional support for patients and their families, most run day centres with holistic therapies, massage, etc. Basically, hospices are not just for the end stage and although your dad might still be a long way from that, there are lots of things that the palliative care team might be able to offer to make life easier for you all in the meantime.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 19:33

This might help

https://prostatecanceruk.org/prostate-information/treatments/treatment-options-after-your-first-hormone-therapy#steroids 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 19:55

I’m so sorry to hear this news, we heard similar news over the phone (sort of) at Xmas but it turned out to be wrong in our case, but my hisband hadnt yet had the newer hormone drugs. He is now on Enzalutimide. It was made clear to us though that treatment decisions are made based on risk versus benefit and when this fails there is only a low dose of steroids or a trial, subject to meeting the criteria. We have had to accept this situation and try simply to be grateful for the time we have had and continue to have. It's the best we can do.

Lyn makes great points in her post and if you haven't got hospice supoort already, you really need it now. We have had that supoort since day one and its been brilliant. 

I'm dreading the day we hear this news, I can only hope we are able to take it on the chin. i really feel for you.

Love Devonmaid xxxx

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User
Posted 04 Feb 2019 at 18:48

I am so sorry your Dad received this news. It must be totally devastating for you all.

I am sure someone will be able to give you some advice soon.

sending hugs to you 

Suzi 

User
Posted 04 Feb 2019 at 19:32
I don't think it is code for anything, it seems they have stated the position very clearly. There are possibly no more treatment plans on the table.

As it happens, some oncos give 6 chemo sessions while others give 10 so the fact that he has managed to stay well enough to have the 6 is great; don't be sad that he is somehow missing out by not having the other 4. If he does stabilise enough to have further sessions at half dose then great but it isn't a deal breaker as the chemo will have damaged the DNA of the cancer cells already.

It seems from what you have posted that when the hormones began to fail last year, your dad became castrate resistant; that means that the cancer had learnt to feed without testosterone. Sometimes it is referred to as 'hormone independent' instead. It would be useful if you could check what he has already had; options for castrate resistant prostate cancer include:

- Abiraterone

- Enzalutimide

- Radium 223 (only if he has bone mets and it is a maximum of 6 sessions)

- Stilboestrol

- steroids

There may be a good reason why the onco has ruled these out. It may be that he has already had the full set and they have all failed, or that the problems with kidney function, etc mean that he isn't fit enough to have them. If he had steroids last year, there is a chance that he had those with abiraterone; if the abiraterone failed, he cannot have enzalutimide so chemo may have been the last option.

Does dad have an allocated nurse? If so, you could perhaps give him/her a call and ask whether he is now moving into palliative care and if so, who makes the referral - the hospital or the GP? Hospice staff are excellent at things like pain relief, helping patients to apply for any terminal care benefits they may be entitled to, emotional support for patients and their families, most run day centres with holistic therapies, massage, etc. Basically, hospices are not just for the end stage and although your dad might still be a long way from that, there are lots of things that the palliative care team might be able to offer to make life easier for you all in the meantime.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 19:33

This might help

https://prostatecanceruk.org/prostate-information/treatments/treatment-options-after-your-first-hormone-therapy#steroids 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 19:50

Sorry to hear things are getting difficult. Hopefully there may be other things or support if you follow up on Lyns excellent advise

Bri 

User
Posted 04 Feb 2019 at 19:55

I’m so sorry to hear this news, we heard similar news over the phone (sort of) at Xmas but it turned out to be wrong in our case, but my hisband hadnt yet had the newer hormone drugs. He is now on Enzalutimide. It was made clear to us though that treatment decisions are made based on risk versus benefit and when this fails there is only a low dose of steroids or a trial, subject to meeting the criteria. We have had to accept this situation and try simply to be grateful for the time we have had and continue to have. It's the best we can do.

Lyn makes great points in her post and if you haven't got hospice supoort already, you really need it now. We have had that supoort since day one and its been brilliant. 

I'm dreading the day we hear this news, I can only hope we are able to take it on the chin. i really feel for you.

Love Devonmaid xxxx

User
Posted 09 Feb 2019 at 14:05

Hi 

Thank you for the candid & informative postings of your Dad's  10 year battle with PC  , I have just been diagnosed with T3a PC  and I am trying to get my head around it and some of the radical treatments proposed -  there are obvious benefits of early  diagnosis   but many treatments come with a price themselves ! 

I do hope he is still coping as best he can  & you sound very supportive .

If you are still on the post  Please  Can I just as your dad age when this started  as I'm 65 & fit for may age  and need to make decisions  - I do not fancy the offered radical prostatectomy  ie cutting out the prostate  as it can have bad long term side effects  ---as other treatments can. 

sincerely  DJEJ 

User
Posted 04 Sep 2019 at 08:16

Thanks to your (and everyone elses responses). Things have progressed quite dramatically since February. My dad wasn't on any treatment for some time (Feb to April I believe)..his PSA spiked quite dramatically in that time so he tried medicinal cannabis (TCH oil) from a reputable source (and tested by a naturopath dr who said the healing powers were amazing) - also his oncologist gave the green light in that he didn't think it would necessarily help, but it wouldn't do any harm so "go for it!". His PSA dropped slighy and stabilised...and no metastases...in June the Dr started him on enzalutamide...he immediately started feeling adverse affects then 7 weeks ago he ended up in hospital with severe dehydration from vomiting. Turns out he had uremia (a rare but possible side effect of enzalutamide), resulting in acute kidney injury. In 95% of cases of AKI, the kidneys go back to normal. After 7 difficult weeks, the renel team have told my dad he is probably in the 5% and will likely need permanent dialysis. His oncologist told my mother rather bluntly over the phone that if he's on dialysis they will probably stop all cancer treatment. I suppose I'm just wondering if there are any of you out there in a similar scenario?

User
Posted 07 Sep 2019 at 07:07

Hi Charlie

Sorry for the late reply, I can’t help with the dialysis but we are in the place where no more treatment is offered and we are ok with it really. It’s a relief not to have the burden of hospital appointments (that won’t apply to you) but in any case that decision was as much with us as the oncology team as I could no longer get my husband out of the house. We’ve had two telephone calls wi the oncology doctor and I asked them to stop sending us appointments now and they were wonderful, they said they would do that but we could ring anytime we needed them. We are fully under palliative care now and it is much better. We are starting a care package and have full support from our GP, surgery, district nurse service and the wonderful local hospice (which keeps getting bad reports in the local press for some internal issues, but gets 100% from us). I think leaving the hope of treatment behind has been a terrific relief to both of us, no more side effects and dragging ourselves up to the hospital, where we both often picked up germs. My husband is being cared for by me and hospice at home unless and until I can’t manage. We have a hospital bed and a syringe driver and night sitters to allow me some rest. It is simply fantastic. I know this can’t be the same in your case because of the severe medical needs, and it is something we nearly needed but were saved from by a wonderful surgeon about two years ago who saved John’s life and his kidney function after a disastrous retention issue. I’m grateful for everything, for the time I didn’t think we would have, for the years of support on here and at the hospital, hospice and GP. I’m glad we have a catheter so that isn’t an issue, I’m glad I have a wonderful family. I’m a positive person in a horrible situation (nearly nine years of it) and still manage to laugh and love and see the best of it all. I think that has saved my mental health and kept me going through all the trials of the last years and I’m hoping through this last piece too. Please accept any and all help now, try to look after yourself too (it’s not easy, I don’t think I brushed my hair yesterday and I had to go to two pharmacies chasing down ampoules of morphine and antisickness drugs, wonder what they thought!), ultimately, our loved ones are going to leave us and we need to keep our energy for showing them love and compassion. I truly feel for you, it’s how to bear the unbearable and somehow we do,

with love 

Devonmaid xxxx

User
Posted 03 Oct 2019 at 03:11

My thoughts are with you, your husband and family.  You are an inspiration to us all.   

Kathleen in Pennsylvania

User
Posted 03 Oct 2019 at 07:37
Dear Devonmaid,

I believe in being strong when everything seems to be going wrong.

Regards,

Bose

User
Posted 24 Oct 2019 at 01:47

Devonmaid, 

Thank you for your thoughtful post.  I am haunted by the prospect of hospice and understand there will be a time when I will be there with my husband.  The Drs assure us he will only have a few years, his cancer is aggressive.  Your positive words give me hope that I will be strong when the time comes.  Until then we will fight with everything we have.  I pray we will know when it is time to say enough and the Drs will help us with that decision.

God bless you both, 

Saint Paul

 
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