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Dad - 3rd cycle of abbi

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User
Posted 19 Apr 2017 at 19:57
Hi,
My dad started his 3rd cycle of abbi after just 2 rounds of hormone injections stopped working. His last PSA had risen from 19 to 20.5. The nurses keep saying we don't need to pay attention to a PSA rise. Without anybody telling me, I've gathered my dad's cancer is castrative resistant.
After an initial bounce in his step starting the abbi, just after this third round he has seen a massive increase in pain. His morphine intake has doubled yet an MRI scan of his lower body showed no further spread. Does anyone know why he isrems to be going downhill?
User
Posted 20 Apr 2017 at 00:49

It could be tumour flare Beebee; the cancer realises it is being attacked and tries to fight back. I can understand why the nurse has said that PSA is not a reliable measure for your dad at the minute ... better to measure how he is doing by scans and his general health / demeanour. Having said that, the PSA rise was very small which for your dad is hopefully a good sign.

Yes you have understood correctly - abiraterone is used for men who are castrate resistant. In other words, your dad's cancer learned very quickly how to survive without testosterone. His case has not followed common case examples which makes it hard to predict what might happen next; did you ever manage to check his biopsy results to see if it was definitely adenocarcinoma that they found? There are some rare types of prostate cancer which don't respond to hormone treatment but do respond to other things.

Has he been referred to Macmillan nurse or a local hospice service yet? If not, it may be worth asking as generally, they are much better than hospital teams at getting the pain relief balanced - finding a level which reduces pain without knocking the patient out too much can be very difficult. Macmillan / hospice services are not just for 'end of life' care although sadly, that is what they are most associated with in the minds of the general public.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2017 at 22:51
Hi Beebee,
Trevor has been on Abbi for around 18 months and has had many rises in PSA in fact it has been an ongoing trend for quite some time. There is 3 criteria to say that Abbi is failing
1 PSA rising
2 pain increasing
3 further spread on scans
I hope this helps .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Apr 2017 at 21:41

Hi BeeBee


My heart goes out to you - it's so distressing to see someone you care about in pain not being able to do anything about it. But on the basis that the squeakiest wheel gets the most oil, I do recommend you start making a fuss because it is possible for the medical team to make things at least a bit better. My OH is on Abi and has had several bone pain flare-ups, plus fatigue, sickness, dizziness and depression - maybe in part caused by the Abi but also by the cancer itself and by the various other treatments he is on. We've got a really good hospice team, and a good but overworked onco but even so I have had to keep phoning and nagging.


The pain is one aspect and the increase in the slow release morphine should begin to help within a few days. If it doesn't, the GP or Macmillan nurse needs to be told so that they can increase it again. Meanwhile your dad should have been told to also take 2xParacetemol four times a day (and at night if needed) and Ibruprofen 3 times a day if there's any sign of inflammation. Plus he should have been given Oromorph or similar and should take that as soon as the pain starts to increase (if it does). Once the pain relief regime has established itself things should calm down on that front and hopefully he won't need the Oromorph except occasionally. If there are acute flare-ups he can ask for an injection of Diclofenac - my OH has had that three times and it was wonderfully effective.


My OH also had one dose of RT to deal with an inflammation on the spine (where he has mets) and is now on monthly infusions of Zometa to strengthen the bones and help deal with pain. Do ask about those options when you see the consultant. Bottom line is they can sort this out for your dad.


Re the lack of appetite: we've got vast quantities of a food supplement from the GP, 600 calories a glass and comes in strawberry, vanilla and banana. Not too bad if you keep them in the fridge. My OH has two of those spread out across the day and tries to snack on foods that are high in iron (nuts, dried fruit, pulses, greens, meat and fish) since anemia goes with the territory. Ditto potassium deficiency which leads to dizziness, tiredness and breathlessness. Hopefully they will test for those things at the next hospital visit. Finally, might be worth asking them to check the levels of calcium in the blood. That can be a cause of pain too. The Zometa infusion helps to clear the blood of extra calcium and helps avoid pain that way too.


It can get better I promise you. Do hope you get the help you need from the medical team. Let us know how you get on.


Take care


Eleanor


x

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User
Posted 20 Apr 2017 at 00:49

It could be tumour flare Beebee; the cancer realises it is being attacked and tries to fight back. I can understand why the nurse has said that PSA is not a reliable measure for your dad at the minute ... better to measure how he is doing by scans and his general health / demeanour. Having said that, the PSA rise was very small which for your dad is hopefully a good sign.

Yes you have understood correctly - abiraterone is used for men who are castrate resistant. In other words, your dad's cancer learned very quickly how to survive without testosterone. His case has not followed common case examples which makes it hard to predict what might happen next; did you ever manage to check his biopsy results to see if it was definitely adenocarcinoma that they found? There are some rare types of prostate cancer which don't respond to hormone treatment but do respond to other things.

Has he been referred to Macmillan nurse or a local hospice service yet? If not, it may be worth asking as generally, they are much better than hospital teams at getting the pain relief balanced - finding a level which reduces pain without knocking the patient out too much can be very difficult. Macmillan / hospice services are not just for 'end of life' care although sadly, that is what they are most associated with in the minds of the general public.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2017 at 22:51
Hi Beebee,
Trevor has been on Abbi for around 18 months and has had many rises in PSA in fact it has been an ongoing trend for quite some time. There is 3 criteria to say that Abbi is failing
1 PSA rising
2 pain increasing
3 further spread on scans
I hope this helps .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Apr 2017 at 20:21
Hi lyn,
Last night my dad couldn't get warm and had to sleep with 2 duvets. He's in more pain despite his morphine intake doubling. By chance, the long awaited Macmillan nurses came today and increased his slow release morphine amounts. I popped around after work and he looked terrible. Despite being on steroids, he has only eaten 2 bananas and shuffling around like a really old man.
I don't know what else is next really. We have a hospital visit next week to get the 4th round of abi and I will make sure he gets his testosterone checked when he gets his bloods done.
Can we get him out of this dip?
User
Posted 21 Apr 2017 at 21:41

Hi BeeBee


My heart goes out to you - it's so distressing to see someone you care about in pain not being able to do anything about it. But on the basis that the squeakiest wheel gets the most oil, I do recommend you start making a fuss because it is possible for the medical team to make things at least a bit better. My OH is on Abi and has had several bone pain flare-ups, plus fatigue, sickness, dizziness and depression - maybe in part caused by the Abi but also by the cancer itself and by the various other treatments he is on. We've got a really good hospice team, and a good but overworked onco but even so I have had to keep phoning and nagging.


The pain is one aspect and the increase in the slow release morphine should begin to help within a few days. If it doesn't, the GP or Macmillan nurse needs to be told so that they can increase it again. Meanwhile your dad should have been told to also take 2xParacetemol four times a day (and at night if needed) and Ibruprofen 3 times a day if there's any sign of inflammation. Plus he should have been given Oromorph or similar and should take that as soon as the pain starts to increase (if it does). Once the pain relief regime has established itself things should calm down on that front and hopefully he won't need the Oromorph except occasionally. If there are acute flare-ups he can ask for an injection of Diclofenac - my OH has had that three times and it was wonderfully effective.


My OH also had one dose of RT to deal with an inflammation on the spine (where he has mets) and is now on monthly infusions of Zometa to strengthen the bones and help deal with pain. Do ask about those options when you see the consultant. Bottom line is they can sort this out for your dad.


Re the lack of appetite: we've got vast quantities of a food supplement from the GP, 600 calories a glass and comes in strawberry, vanilla and banana. Not too bad if you keep them in the fridge. My OH has two of those spread out across the day and tries to snack on foods that are high in iron (nuts, dried fruit, pulses, greens, meat and fish) since anemia goes with the territory. Ditto potassium deficiency which leads to dizziness, tiredness and breathlessness. Hopefully they will test for those things at the next hospital visit. Finally, might be worth asking them to check the levels of calcium in the blood. That can be a cause of pain too. The Zometa infusion helps to clear the blood of extra calcium and helps avoid pain that way too.


It can get better I promise you. Do hope you get the help you need from the medical team. Let us know how you get on.


Take care


Eleanor


x

User
Posted 22 Apr 2017 at 00:23
Wow Eleanor thank you so much for the advice. Lots to take notes of and take up next meeting with doc/onco. I feel much better now knowing there is other options available. So much info here and i feel armed now ahead of next meeting. I naively thought MST and Oramorph was it.
Thank again xxxx
 
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