Hi All,
Sorry to ask on another new post but just in case someone that knows hasn’t seen it....
Dad’s PSA has risen to 24.6 in roughly 6 months I believe which we found out from the last visit with the onco which was in March. He has more scans and this showed no change apart from some ‘activity’ in his lower back which the onco believed was causing the leg pain and is why he sent him for some radiotherapy in May. He also changed Dad’s medication and it is since then that Dad has been terribly unwell. Obviously the strong pain killers (cocodomol and morphine) before, during and for a small time after the radiotherapy can cause constipation so when they kept treating dad for this we believed them. He has been on a massive amount of laxatives for weeks now and doesn’t seem any better.
We have been informed today that dad isn’t to collect any of his new medication anymore as this has now been cancelled. We are assuming by the onco? Maybe because something has come up in his regular blood tests (he has these Blood tests on a Friday to then collect his meds on a Monday from the hospital. This is every 4 weeks or so).
The new meds he is on are:
Dexamethasone 500mg
Diethystilbestrol 1mg
Metoclopramide 10mg
Its very difficult and I feel we are just begging people to help us. It’s very hard to get hold of the onco’s secretary So who else do you speak to??
Could the new medication be making him this ill? Should we be waiting over a week for the next onco app to speak to the onco or should we be pushing for sooner? He’s been unwell for such a long time and he seems to be getting worse.
A bit of background - He was fit and healthy, totally fine (apart from the pain) before the new meds roughly 3 months ago and radiotherapy 1 month ago. I think it surely has something to do with the meds?
Any help/advice is greatly received and if you know who we should be calling/who can help us?
Thank you.
"Some people care too much. I think it's called love." by A.A. Milne |
User
I would say that you need to contact your GP and don't leave until you get some answers and help.
User
francij1,
I think press GP for direct or indirect help too
Barry |
User
User
Dexamethasone - steroid - can reduce PSA sometimes, or might be for another reason.
Diethystilbestrol - hormone therapy, unusual choice, but maybe the GnRH analogues have stopped working, so switched to synthetic female hormones. Does sometimes work well.
Metoclopramide - had to look that one up - it's an antiemnetic, to stop you feeling sick.
User
Hi Penny, I have also responded on your sister's thread.
If dad has been transferred to the palliative care team it is them and the GP who you need to speak to - oncos often let go of the patient once it gets to the palliative care stage.
I don't see how the rapid decline can be due to the medication - the steroids are to reduce lots of different side effects but particularly to reduce swelling caused by tumours on the spine, the stilboestrol is an oestrogen so another form of hormone therapy and the metoclopramide is an anti-sickness drug. Dawn was going to try to speak to the palliative care team today; I think you need to ask them about dad's symptoms and whether the constipation is as a result of the tumour pressing on something (the 'activity' that was seen on the scans perhaps?) Perhaps you need to be brave and ask whether Dad is moving towards the end stage - hopefully, they will be able to reassure you but if not, it is better to know and be realistic I think?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hopefully you will get some answers soon and they will identify what is causing the constipation.
Edited by member 23 Jun 2020 at 22:35
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I would say that you need to contact your GP and don't leave until you get some answers and help.
User
francij1,
I think press GP for direct or indirect help too
Barry |
User
User
Dexamethasone - steroid - can reduce PSA sometimes, or might be for another reason.
Diethystilbestrol - hormone therapy, unusual choice, but maybe the GnRH analogues have stopped working, so switched to synthetic female hormones. Does sometimes work well.
Metoclopramide - had to look that one up - it's an antiemnetic, to stop you feeling sick.
User
Hi Penny, I have also responded on your sister's thread.
If dad has been transferred to the palliative care team it is them and the GP who you need to speak to - oncos often let go of the patient once it gets to the palliative care stage.
I don't see how the rapid decline can be due to the medication - the steroids are to reduce lots of different side effects but particularly to reduce swelling caused by tumours on the spine, the stilboestrol is an oestrogen so another form of hormone therapy and the metoclopramide is an anti-sickness drug. Dawn was going to try to speak to the palliative care team today; I think you need to ask them about dad's symptoms and whether the constipation is as a result of the tumour pressing on something (the 'activity' that was seen on the scans perhaps?) Perhaps you need to be brave and ask whether Dad is moving towards the end stage - hopefully, they will be able to reassure you but if not, it is better to know and be realistic I think?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks everyone.
I will get on to the GP today and I’m sure my sis will be on to the palliative care team.
We have an appointment (I’m assuming still be telephone) with the onco on 3rd July which doesn’t seem that long away but because dad has felt so unwell for what seems like forever it feels like an age away. Would the onco stop working with Dad without any warning? Would we not be told?
We are all just assuming that because there was not much change in the scans apart from the activity in his back that it was a good sign but could this not be the case?
Its a difficult situation with asking re. end of life care. Dad has never been one to ask the difficult questions as we have all felt it’s not our place. Who would we ask? The onco? The GP surely won’t know that?
Thank you all again. I feel that we don’t have enough knowledge in this and you are all such a help.
"Some people care too much. I think it's called love." by A.A. Milne |
User
I think Dawn said that the palliative care nurse had a conversation with your mum & dad when s/he visited - I would start there. And yes absolutely the GP will have been informed that dad is on a palliative pathway. It is a difficult topic to raise within the family but I have been where you are a number of times and find it is much easier to talk about the end before you get there; leave it too late and it becomes a very frightening conversation for the person. I would be surprised if the palliative nurse hasn't started to test out your dad's views & wishes even if he is not yet at that stage.
I probably didn't word it very well - it isn't usually the case that the onco completely ends their relationship with the patient but if there is no more active treatment to offer, the onco often hands the case to palliative care to manage meds, pain control, etc - that is their expertise rather than the onco's.
They might be hoping that the steroid will make Dad feel better.
The new activity in the lower back / spine could be significant; it depends where it is. If the tumour is pressing on essential nerves it can cause spinal cord compression (which is a medical emergency so make sure you & your parents know the symptoms), constipation, loss of bowel / bladder control, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Just an update on Dad.
He is now in A&E. A nurse came round and said they really NEED to know if there is a blockage. This could be faeces or it could be ‘mechanical’ which I am assuming they mean a tumour? I’m hoping they keep him in and get to the bottom of things.
Either way, she said she didn’t think it was end of life as if it was she wouldn’t have advised Dad to go into hospital. I think we just don’t know and more needs to be done to find out.
We spoke to the GP and he said there wasn’t anything untoward in Dads blood results. He also informed us that he was under the impression he was dispensing the new medication for Dad so this may be why the hospital pharmacy has been cancelled but surely we should be informed? It is still impossible to get hold of the onco which is highly frustrating so we are still unsure as to whether Dad should be taking the medication or not?
Makes things all the worse when you can’t even be in the hospital with him to know what’s happening.
"Some people care too much. I think it's called love." by A.A. Milne |
User
Hopefully you will get some answers soon and they will identify what is causing the constipation.
Edited by member 23 Jun 2020 at 22:35
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi All,
So we have had the X-ray and CT scan results back. Nothing can be seen on them so the doctor now wants another type of scan which involves a camera down your throat to look in chest and upper bowel I believe. He is also requesting a brain scan to check if the cancer has spread and that is what is causing the sickness, constipation and some headaches.
He said that if these are ok, the only other thing he can think of is that the radiotherapy has damaged Dads bowel. He informed us that no scan in the world will be able to see this and if dad doesn’t have any more scheduled radiotherapy (which he doesn’t, it was a one off to help with pain)then it should rectify itself but it will be a long time. He mentioned that he is not a cancer doctor though so he is only going on his limited knowledge. Does anyone have any experience of bowel damage due to radiotherapy?
Again, thanks to all of you.
Penny
"Some people care too much. I think it's called love." by A.A. Milne |