Sudden big rise in PSA after moving to Prostap

@LynEyre in November he only had the PSA test and had a normal reading but they did not give him a prostate exam, he has had no biopsies I believe because of his age (91), they did a CT scan at the hospital and then diagnosed him with Advanced Prostate Cancer with multiple sclerotic lesions on the bony pelvis and spine. 

I am not 100% sure why they did change the course, but I believe it was to limit him having to go every month for the Degarelix, he didn't have any side effects with the Degarelix and after his first Degarelix injection his PSA dropped to normal range. He was not given a course of tablets before starting on the prostap, the hospital gave him a one month course of Prostap without saying, it was only when I read a copy of the letter they sent to his doctor discharging him to his doctor for 3 monthly Prostap injections.

I am not sure how true this is but the doctor at his doctors surgery said the NHS are having trouble getting hold of Degarelix because of COVID

Thanks,

Joe

Update, his testosterone levels are fine

@Andy62 The oncology nurse said that his testosterone levels are fine which I'd say means it is still at castrate levels? She does not seem worried about the testosterone levels rather the PSA levels

- ask the GP practice to confirm that it was indeed the 3 month dose that was administered and not just a 1 month dose by accident

- if possible, confirm where the Prostap was administered - did they put it into his thigh, bum or stomach?

- ask the oncology nurse to get an urgent view from the oncologist about whether it is possible for him to revert straight back to degarelix since that seemed to have worked well

- also ask about a referral to pain clinic or similar to get his pain meds sorted out properly

If that's correct, I don't think he is castrate resistant, I think his cancer had a party while it could! Shocking care - make sure the oncologist & oncology nurse record in his notes that this is what happened.

It is not unheard of - that's why I suggested that you might ask the nurse to contact the onco now about switching back - if you wait until the next injection is due before asking, it will be too late & he will possibly be destined to another 3 months of rising PSA. There are also some men who have oestrogen based HT instead, and even though it is now an old fashioned treatment, it works for them where the newer HTs fail.

Someone needs to explain to him how important it is to take the pain meds correctly - waiting until it hurts is too late. Having said that, co-codamol causes its own problems which is why a pain meds review would be useful.  

Edited by member 20 Sep 2020 at 23:13  | Reason: Not specified

Lyn in regards to your question about the type of PCa my grandfather has would this only be found out via biopsy? 

He has had history for around 15 years of an enlarged prostate and has been on medication for it with frequent PSA tests. 

Going to Urology tomorrow for them to give him a thorough check out. He does have a UTI and I only found that out by chasing the hospital for nearly 2 weeks! Very frustrating feeling like you have to chase them up to find out things such as a big jump in PSA level and also a UTI

Thanks

UPDATE:

as of last few weeks change in taste and lose of appetite, keep requesting food that he then decides has changed since he last had it. He seems like he is fading within himself, losing energy and becoming confused.. Still waiting on oncology appointment this week, have tried him with CBD oil spray to ease pain and also taking  co codamol as instructed.

Seems like he is fading as a lot of different meals he is trying are sickly or not as he remembered (he has not teeth anymore which make it an added struggle)

Hospital called on Friday evening saying he needs a blood transfusion as platelets are low and so are haemoglobin levels (maybe to do with the fact PSA levels are currently out of control until he is able to go back on degarelix when the prostap has run its course, I hope it does make a difference)

He is trying to hold out until Monday to go into hospital for the transfusion as he does not want to be kept in the whole weekend, also when diagnosed he lost a lot of weight in hospital because he could not eat the food

He has become very weak and out of breath recently maybe due to the loss of appetite and the rise in PSA but I am hoping for a miracle and that he holds out long enough for the degarelix injection at the beginning of November.

Sorry Joey, I missed this. Yes, a biopsy is needed to determine exactly which type of prostate cancer it is. There are occasions where a prostate cancer behaves in such a specific way that the urologist / oncologist can hazard a guess at one of the rare types - for example, where it goes straight to the brain or the HT doesn't work at all, right from the start - but it would only be a guess.  

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

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

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. 

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 

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

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

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

Thank you, I know it is a horrible feeling having to fight for basic humane treatment.. I know covid has made things harder but we can't take any comfort in that! Keep on fighting

Sending love and strength to you, your mum, dad and rest of the family!

Take comfort in the fact there are some very kind people out there that do their most to help, are we explained to the ambulance crew the situation they were appalled and they put on the blue lights and flagged him as possible sepsis even though they knew he hasn't got it just so he would get seen quicker. 

Edited by member 12 Oct 2020 at 21:30  | Reason: Not specified

Thank you Anne

I had to fight today to be able to see him at the hospital, they first said no but then allowed me to visit him for 30 minutes but nurses kept coming around asking who allowed me in. 

My grandad was so confused about where he was, I let him know I was there and he said where have you been I have been looking for you. I feel so broken having to leave him after 30 minutes knowing he has days or a week or two left. I tried to keep strong for him but when I had to leave I got a bit choked up and he told me to take care. 

Bollocks to COVID and Prostate cancer. 

This is a really crap situation and extra stress and sadness for your grandad and you - can they get him into a local hospice do you think?

I cannot begin to imagine not being allowed in to see my dad if he was in hospital. Each time my dad has an appointment at the oncology clinic or surgery for blood tests, my mum has to fight to go in with him... he can hardly walk now so they have to let my mum in too but not happily!

While Covid19 is a serious disease so is terminal cancer - NHS need to give priority patients and their families the treatment and backup they need.

I really hope they can arrange something more suitable and comfortable for your grandad and your family sorted ASAP so you can spend as much time with him as possible.

Anne

Xx

Dear joey

I will raise my glass for you dear grandad... so sorry ..it sounds like he had a peaceful passing, though probably I am sure you would have wanted him out of hospital. its a total crap disease...isn’t any terminal one? 

My dad is not doing good (maybe a similar age to your grandad 84?), he’s at home, but he spent his lifetime very fit and healthy, so now he’s becoming very weak to get up, eat etc ... he does not like to make any fuss but has mentioned the doctor twice in last 2 days but no answer back from Macmillan nurse ...it goes to answer machine.

Sorry dear Joey, sorry you have lost your beloved grandad to this disease and bless you for thinking of others.

best wishes

anne 

xx