Sudden big rise in PSA after moving to Prostap

User

Posted 05 Oct 2020 at 00:07

Thanks Lyn, I hope it helps too.

That makes a lot of sense regarding the biopsy now!

Appreciate all of your advice it was very helpful.

Sending well wishes to you and your family

User

Posted 05 Oct 2020 at 13:48

Took my grandfather in to A&E this morning, his hemoglobin levels were 78 on Friday and now today they had dropped to 67. He is going to be given two units of blood today and he is going to be admitted to hospital under the Oncology team, A&E nurse has told the Onco team that he needs more treatment because his PSA levels are now at 1400 up from 770 about 4 weeks ago.

The oncology team were saying he had to hold out until the beginning of November when the Prostap should be out of his system for further treatment but I have no idea, last week there was a mention of referring him for RT at the Royal Marsden to ease pain but I am not sure he is strong enough at the moment. Really hoping for a miracle and that switching him back to the degarelix makes a difference for him but I know that this is unlikely

User

Posted 05 Oct 2020 at 18:39

I really hope that oncology respond to the request for intervention from the A&E nurse.

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

User

Posted 05 Oct 2020 at 19:46

Thanks Lyn, me too!

I had been reading that during COVID that the NHS have been giving abiraterone for newly diagnosed advanced prostate cancer but I am not sure why this wasn't put forward for my grandfather, he does have cardiac history though.

I found initial paperwork from the hospital regarding his diagnosis and it says "Diagnosis Details: C61 - Malignant neoplasm of prostate" multiple sclerotic lesions in spine and bony pelvis. It says he was started on GnRH analogue (Degarelix) because it would be better than an LHRH due to cardiac comorbidities.

It is worth noting that all of these notes are typed up on a computer but on the back there are scribblings that say the following "RRP Feb '20 G9 T3b N1 M1B, Enzilutamide 29/05" I am beginning to think these notes were scribbled on my granddad's notes by accident as the Feb 20 date is unfamiliar and he has never been on Enzilutamide and he has never had a biopsy, he definitely has not hid anything from us as he is unable to go to the hospital unaided. He was started on bicalutamide to prepare for the prostap initially but then they changed the course of action to degarelix and took him off the bicalutamide straight away

User

Posted 06 Oct 2020 at 21:08

Have been trying to contact the ward my grandad is on all day today with no luck, my grandad has trouble answering his phone sometimes due to his limited vision.

Had a call saying he may be discharged today but then one hours later being told he will not be discharged as he needs another transfusion.

Hours later I managed to get hold of my grandad and he did sound like he had given up, he said the priest had been round to given him his last rights which was VERY alarming due to the fact we had not been contacted by the hospital.

I managed to get hold of the head nurse of the ward and she said that it was definitely not the case, I begged her to go and let my grandad know as he must be delusional and he sounded like he had given up because what ever he imagined he believed was real! Poor man, not sure if it is because they have him on different pain meds or what but he definitely got confused... Not being able to go into the hospital is making this all ten times more difficult, the poor man really thought he was going to pass away tonight and his family had not been told.

PSA currently 1400 as it seems his first dose of the 3 monthly prostap is not working (diagnosed at 570 and degarelix bought it down to 0.7 after first injection)

This whole journey is a rollercoaster! I send love and best wishes to everyone going through the same

User

Posted 07 Oct 2020 at 10:10

Pain meds can do that, as you say it’s a rollercoaster but with Covid adding unwanted twists.

Take care.

Ido4

User

Posted 07 Oct 2020 at 14:04

Very true indeed! He seemed more with it today when I managed to get hold of him but now he has tested positive for COVID, one thing after another.

Just read your profile Ido4 and very glad to see how well you are getting on

User

Posted 07 Oct 2020 at 18:49

Thanks, so sorry your Dad has Covid to add to everything else.

Ido4

User

Posted 07 Oct 2020 at 20:19

Is any one able to give any advice as I have done some reading online and it has worried me quite a bit, they have given my grandad three units of blood but his hemoglobin and platelets are still low, his first hormone treatment is no longer working as PSA is high.

The nurses have said he is very mobile and quite strong but the hemoglobin and platelets makes me quite alarmed, oncology team are apparently seeing him tomorrow and I know my grandad has been confused so I am quite nervous at the fact he will be talking to them alone, they were meant to see him today but the positive covid test threw that off.

User

Posted 07 Oct 2020 at 22:13

They may say that they need your grandad's permission to share info with you but if you keep pushing the mental capacity act at them, you might get somewhere. Who actually is his next of kin?

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

User

Posted 07 Oct 2020 at 22:39

Originally Posted by: Online Community Member

You could ask for a Zoom meeting with the oncologist or lead oncology nurse afterwards, on the basis that you don't believe your grandad has capacity (quote the mental capacity act) and will not be able to make decisions (about withdrawal of treatment, etc) or recall the essential information to pass on to his next of kin afterwards.

They may say that they need your grandad's permission to share info with you but if you keep pushing the mental capacity act at them, you might get somewhere. Who actually is his next of kin?

Thanks Lyn that sounds like a very good idea, my mother is his next of kin and has previously requested for Oncology and Urology to call her and usually attended appointments with him. Will have to get a hold of Onco tomorrow and push the mental capacity act. Appreciate the advice!

User

Posted 09 Oct 2020 at 09:50

Latest update after we had all been told to self isolate for two weeks because we had been in contact with my grandad and after he had been moved to a covid ward... We get a second call a day later to say his second test has come back negative!

In the meantime his oncology appointment was cancelled and the Clinical Nurse Specialist said she can't help because he is an inpatient and they only deal with outpatients, left emails and voicemails on the Oncology Clinicians phone but still no response and now discharge team are trying to discharge him but we just want him seen by Onco first, this has been communicated several times to nurses etc but nothing has happened.

User

Posted 09 Oct 2020 at 16:23

This is absolutely dreadful - is it worth complaining to PALS to see if they can get anything sorted - you would think that people would be able to communicate effectively in this day & age.

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

User

Posted 10 Oct 2020 at 16:47

Originally Posted by: Online Community Member

This is absolutely dreadful - is it worth complaining to PALS to see if they can get anything sorted - you would think that people would be able to communicate effectively in this day & age.

Thank you Lyn, I will have to do that after my next and last attempt on Monday.

They discharged him today and it seems they have put him back on Bicalutamide tablet, not sure why.. It also says "Thrombocytopenia ? Cause" and "Anaemia" Hb 57 on admission and Hb on discharge 93 (3 units of RBCs with good response)

Platelets 72 on admission and rapidly dropped to 44, received one bag of platelets (discharged at 67) and blood thinners discontinued will be reviewed on Tuesday after bloods at the Ambulatory Oncology Care Unit

User

Posted 10 Oct 2020 at 18:29

Your grandad's cancer is managing to feed despite the HT but because he hasn't been on HT for very long, it would be unusual for him to have become castrate resistant already. This suggests that the HT simply isn't working well enough to block all testosterone production so the bical will disguise the testosterone that is floating around to make it harder for the cancer to find.

Edited by member 10 Oct 2020 at 19:47 | Reason: Not specified

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

User

Posted 11 Oct 2020 at 14:56

Thanks for that information Lyn, I hope that is the case. He was discharged yesterday and he was so weak, we currently have him at home and he is not drinking or eating much at all but he also isn't in pain so he hasn't been taking cocodamol.

Appreciate all of your help Lyn

User

Posted 11 Oct 2020 at 19:22

I feel let down by oncology and the hospital if I am honest, if it turns out that introducing the bical helps control his PSA since switching him back to Prostap then I feel like they left it too long, we let them know a month+ ago that he was in pain and losing appetite and they advised that they cannot do anything until the three month prostap is out of his system but since being admitted to hospital they decided they can put him back on bical!

Not to mention the fact he had a false positive covid swab and was moved to a covid ward, they said he was strong and ready to be discharged but he had not made bowel movements for 4 days so they won't discharge him until they sort that... Yesterday when we picked him up I found out he had been given 3 enemas in the morning (I picked him up at 12:30) and it had completely zapped an already weak man (they just wanted to solve the constipation to free up a bed)

When we got home he had several accidents which very much hurt the pride of a 91 year old man, this left him saying things to us like "I will be happy if I just go in the night" not to mention his back side is very painful from all of these enemas.. I am truly heartbroken that they would put an elderly man with a terminal illness through this just to free up a hospital bed.

He actually felt strong and was able to go up and downstairs before they put him through this. He sat awake all night worrying about further accidents and is now refusing food but I can only take comfort in the fact he no longer needs cocodamol or any kind of painkillers

User

Posted 12 Oct 2020 at 13:39

We got the GP out to see him today as he is very confused and out of it, the GP came and said he has just received a copy of the CT scan and it has spread all over including his lungs.

The doctor wants to admit him to hospital, he said it doesn't look good at all and he has called an ambulance. My grandad is very confused and doesn't want to go anywhere, he said he just wants to be left alone but when he was well he always said he wants to end up in a hospice. This seems like such a short journey but I hope everyone reading this stays health and positive as possible

User

Posted 12 Oct 2020 at 17:23

I am so, so sorry - if they can get him into a hospice, that will be much better for him and your family. Hopefully, the hospital & the GP can get their act together to put the hospice referral in asap and he can transfer straight there without another humiliating stay on a ward that can't meet his needs.

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

User

Posted 12 Oct 2020 at 17:44

Originally Posted by: Online Community Member

Thank you for everything Lyn, I really appreciate it and wish all the best for you and your family

Notification

Join the online community now.