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80 yo PSA 700 hormone therapy wore off after 3 mths what next

User
Posted 27 Nov 2021 at 20:43

Hi everyone

My Grandad 80 y/o was diagnosed with prostate cancer in July 2021. PSA was initially in the 700’s and scans showed bone mets on spine ribs hips and femur. 
He went to his Gp initially due to urinary issues and lack of appetite resulting in weight loss.

he commenced hormone therapy (20 days of tablets, injection half way through) and blood test 2 mths later showed PSA 39. All seemed good.

fastforward another month and the lack of appetite was sneaking back.. we didn’t think much of it as he had also developed a UTI at the time as a result of a bladder function camera test. He was admitted to hosp and the UTI was treated via IV antibiotics. However still no appetite hence dramatic weight loss. PSA was tested in the hosp and is back up in the 700’s. This is approx 3.5 mths after the first round of HT.

to say we are distraught is an understatement, we thought we had at least 2yrs before this stage. We are waiting for an appointment with urology and oncology to hear their plan of action. 

my question is, is this the beginning of the end? He is so weak. I am confident they will give him more medicine to kick the can down the road but with such a high PSA level and complete loss of appetite (drinks only) … are we foolish to think he has long left? Is this a sign the C is very resilient?

thanks in advance

User
Posted 30 Nov 2021 at 01:20
Amy, I don't think I misunderstood your timeline by more than a couple of weeks. From symptoms, it is reasonable to assume the cancer was active from mid-October if not earlier.

As he has never had a biopsy, it is impossible to know but may be that he has a prostate cancer that is not responsive to hormone therapy - there are many different kinds. It is unlikely to be small cell or basal cell prostate cancer as these don't usually produce PSA but large cell, mucinous and a couple of others can give off high PSA readings while not responsive to HT.

It is impossible to know without a testosterone test what the problem might be. The onco may suggest changing to another hormone such as Prostap or Zoladex to see if that is better, or Degarelix which can bring someone to castrate level within a couple of days, or Stilboestrol which is oestrogen based and works in a different way to the others. They might suggest an orchiectomy (surgical removal of the testicles) although this is rare these days. There might be a discussion about whether he is strong enough for chemo, or they may add another drug to the Decapeptyl to help it work more efficiently.

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

User
Posted 30 Nov 2021 at 08:32

Originally Posted by: Online Community Member
Gosh Dave, that poor woman is now crushed by your assessment of her; good job you aren't doing her appraisal 😥

I don't have time to do appraisals, you'll have to speak to someone higher up the pecking order than me, I'm too busy deflecting jobs to other people...now let me get on with doing my job... those tiktok videos, I'm sure I seen a cat playing a piano.😸

Edited by member 30 Nov 2021 at 20:14  | Reason: Not specified

Dave

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User
Posted 28 Nov 2021 at 01:11

What hormone therapy injection was he given?

Has he had only the one injection?

User
Posted 28 Nov 2021 at 02:08

The start of this hormone treatment sounds right. 20  days of tablets with an injection around day 10. The injection then needs to be repeated, and it depends on the drug and the dose. It will either have to be repeated at 4 weeks, 12 weeks or six months. It is possible that a 4 week dose was administered when he should have been given a 12 week dose.I don't know how likely that is, it is possible. 

Some cancers do not respond to hormone treatment, but your grandfather's did. One would expect it to then stay dormant for two to five years. We have had castrate resistance reported within a year but it is rare, we have also had cases of HT being effective for over ten years though that is very rare. 

There are other combinations of HT which may work if used together.

If you can answer Andy's questions it will give us a clue as to how likely mis-dosing is.

Dave

User
Posted 28 Nov 2021 at 08:33

Hi thanks for the reply.

it was Decapeptyl, we were told it will be a 6 monthly injection with PSA level monitoring every three months. 

 

User
Posted 28 Nov 2021 at 08:35

Hi Dave

i have just answered Andys questions, thanks.

i will look up his original prescription and double check it was the right dosage. Although that’s still not to say it was the right one that he was given.

Thanks for your input its much appreciated as we are feeling so disheartened.

User
Posted 28 Nov 2021 at 09:49

That drug does come in various strengths. See link for all the details.

https://bnf.nice.org.uk/drug/triptorelin.html

You need to check the original prescription, but then you also need to find out what was actually administered. It is really drilled into medics to get this right so unlikely to be wrong but it is possible, and because it is so unlikely to be wrong you may have difficulty getting this taken seriously. I think there should be a record of the original drug batch number which I presume can be tied to the dose strength.

The chance of it being an error are slim. Link below is not immediately easy to interpret.

https://ejhp.bmj.com/content/28/5/260

Though it mention 12,000 Drug errors over the 7 year period of a 1000 bed hospital, my guess is that the hospital administered about 7 million doses in that time. That means about 1 in 500 had an error. Not a very big figure. 

If the HT has genuinely failed then enzalutamide or similar drugs may be possible.

https://prostatecanceruk.org/prostate-information/treatments/enzalutamide

good luck, let us know how things go.

 

 

 

 

 

Edited by member 28 Nov 2021 at 10:10  | Reason: Not specified

Dave

User
Posted 28 Nov 2021 at 11:10
Amy, did they measure his testosterone in this most recent blood test? There are 3 possibilities:

- he was given the 1 month or 3 month dose of decapeptyl rather than the 6 month dose

- the decapeptyl is not working well enough to stop testosterone production and they will change him to a different hormone

- the cancer is hormone independent- that means that it can survive without testosterone and other meds need to be added

A testosterone measurement will help them to work out which of the 3 it is.

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

User
Posted 28 Nov 2021 at 11:44

Very good point Lynn a testosterone test is going to be easier than trying to find medication batch numbers and more informative.

Dave

User
Posted 28 Nov 2021 at 20:28

I will be looking into the prescription details first thing tomorrow. We have to contact the pharmacy etc.

thanks again for your input and taking the time to reply its so helpful! Will let you know how we get on

 

User
Posted 28 Nov 2021 at 20:30

Thanks a million for taking the time to respond. Your comment is very helpful. I’m not sure if they have checked his testosterone level but I am better equipped with the info need to ask the consultant these important questions next week thanks to all of you who answered me..
i will let you know how we get on!

User
Posted 29 Nov 2021 at 08:25

I would ask GP or clinical nurse specialist if they can do a PSA and testosterone test as the hormone therapy isn't working. Might get it done faster than waiting for next consultant appointment. My GP was happy to do this when I had a similar concern.

User
Posted 29 Nov 2021 at 18:06

Hi Dave,

I found the batch number through our GP and rang the manufacturer however when I explained to the woman on their medical team that I wanted to cross reference the batch number with dosage she told me we would need to log it as an error and it was reportable to the authorities.. i told her there is probably NO error.. I am just checking the right dose was administered. And she was still adamant that it was still reportable - which seems ridiculous!!!! I panicked and didn’t take it any further as I don’t want to cause any trouble. 

So maybe the pharmacy or our consultants might have better luck cross referencing the batch number with dosage. 
still waiting on an appointment with them.

 

User
Posted 29 Nov 2021 at 20:41

You have gone straight to jail without passing go, I think. Starting point is a) what dose did the practice record that they had ordered & received and b) what dose did the nurse record on dad's notes that s/he had given him?

They will have had to write a prescription for dad to be able to order the depot into stock and will then have had to record it when it arrived.

Edited by member 29 Nov 2021 at 20:44  | Reason: Not specified

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

User
Posted 29 Nov 2021 at 21:10

We are waiting to get a copy of the prescription from the hospital that prescribed it and /or the pharmacy.

it was supposed to be Decapeptyl 22.5mg so we will need to confirm that.

the other opportunity for error is on the part of the pharmacy (putting wrong dosage in the bag) ie 11.25mg instead of 22.5mg.

we picked up the prescription from the pharmacy and brought it to the GP surgery for the nurse to administer.

so the nurse would have written down details on the day of the ‘injection appointment’ .. we found out today that she only wrote down the batch number and expiry date. No record of dosage.

So we know it should have been Decapeptyl 22.5mg as prescibed. 
- We are yet to confirm this

We know the batch number of what was administered. But the manufacturer is not wanting to give us any information without logging a formal mispractice record even though we are only making an assumption and have absolutely no proof yet that anyone done anything wrong. God why are there always so many road blocks!

hoping to contact the pharmacy and or consultant with our theory and they may have a better approach to ruling this out with the manufacturer as i didnt get anywhere.

will keep you updated!

User
Posted 29 Nov 2021 at 23:09
It wouldn't be a concern about whether the 11.5mg had been given rather than the 22.5mg - the PSA couldn't have gone from being controlled (39) to being completely out of control (700+) in the space of 2 weeks. if it was down to dosage, it would be more likely to be a 1 month dose (3mg) given which then, as the bicalutimide and decapeptyl left his system around weeks 4-6, caused a feeding frenzy from weeks 6 - 14.

It might not even have been an error - many oncos / GPs issue a prescription for the 1 month dose the first time, just to make sure there is no allergic or other severe reaction and then they start the 6 month dose at month 2.

It seems to me much more likely that he has a hormone independent cancer. Do you have his paperwork - was he definitely diagnosed with adenocarcinoma and not one of the rare types?

Also, was it definitely injected into the correct place?

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

User
Posted 29 Nov 2021 at 23:12

Originally Posted by: Online Community Member
the other opportunity for error is on the part of the pharmacy (putting wrong dosage in the bag) ie 11.25mg instead of 22.5mg

 

Just to say - pharmacies will often just order it in when they receive a prescription - many of them don't keep a stock themselves because it has to be stored a specific way and they probably aren't asked for it every day. 

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

User
Posted 30 Nov 2021 at 00:08

As Lyn mentioned previously knowing his current testosterone level is the best place to start. If his testosterone is castrate level then the Decapeptyl has worked and pursuing the dose size is irrelevant. In that case it is unfortunate that his cancer is now castrate resistant, but other combinations of drugs may help for many years.

If his testosterone is above castrate level (I'm hoping Lyn will post with what castrate level is as a number) then either he was underdosed or his testosterone (but not his cancer) is resistant to Decapeptyl, and another HT will probably work. To get any further we need to know if he had the correct dose.

You have done remarkably well to get as far as a batch number and managing to find an error in the logging at the GP practice. Remember we are not trying to get anyone in trouble, we are trying to ensure they have rigorous procedures in place to prevent errors, allow the tracking of errors and hence save lives. You won't know how many lives your actions will save by highlighting this small error at the GP practice, but hopefully from this day on everything will be recorded correctly and thanks to your actions lives will be saved in the future. (How strange that in ten or twenty years time your actions today may save a young child's life, of course s/he won't thank you they will just assume the correct logging of drug doses is the norm, as it should be.)

Now to more pressing problems how to tie the dose to the batch number. Well before we engage in battle we have to know our cause is just. You won't be surprised after my previous paragraph that I am in no doubt our cause is just, but if you are in any doubt ask yourself these questions: With what little information we have can we be sure that batch of drugs was safe? If we knew the dose we would be in a better position to judge if the batch was safe. Can we stand by not knowing if people may die because of a poor batch? It is our duty to tie that batch number to the dose size, not for your grandad, but for all mankind.

How do we fight bureaucrats? First we must understand what motivates them to fight us? Laziness. That woman was probably happily polishing her nails until you had the audacity to phone her.

The next thing we have to know is that all human endeavours involve a hierarchy, and everyone in that hierarchy is lazy and wants to pass the work either up or down. Passing it down is easy unless you are at the bottom; passing it up is not so easy because the person the next level up is equally lazy, s/he will try and refuse to accept it, if they do accept it they will either have to do the work themselves (heaven forbid) or pass it up.

So that woman on the phone has a nice reply, "that's a reportable error, and I'm too low in the hierarchy for that, now what sort of nail polish goes with these shoes". Now as you have said it is ridiculous to report this, and the moment you do that, someone higher up the hierarchy is going to find they are having to work on something ridiculous, passing patently ridiculous work up the tree is impossible. So now the easiest way to avoid hard work is to just give you the answer you want. So go ahead follow the bureaucratic process, you have nothing to lose but the people who are being obstructive have, so they will give in.

And remember you are doing this to improve the drug companies procedures, so that many more lives may be saved in the future.

 

Dave

User
Posted 30 Nov 2021 at 00:39

Not sure about the injection method however I do know the nurse who administered it is very experienced as she has worked in the practice a very long time. It was injected into his buttock.

Sorry I think you misinterpreted my timeline, I probably haven’t been that clear. Here it is again.

early July PSA 700+

10th July started tablets (20 day course)

19th July received injection (supposed to be 6 monthly but as we’ve said we need to confirm this.)

Early September (2 months post injection) PSA 39. This blood test was meant to be at his 3 month mark ie October but due to an admin error he got called in early for it.

From 18th October - appetite gradually going, getting more picky with foods etc. 
22nd October - bladder camera test

27th October - diagnosed with UTI as a result of camera test. 
this finished the appetite altogether, only eating one small meal a day from here on.

18th November - admitted to hospital for IV treatment of UTI as tablets had not worked, dehydration and malnourished due to lack of appetite.

22nd November - PSA 700+ again. 

initial PSA 700+
8 weeks after injection PSA 39

13weeks after injection 
lack of appetite creeping back

4 mths after injection PSA 700+

We never received an official name on the C as no biopsy was taken they said the risk of infection is too high. Just that it’s prostate with bone mets and the injections (HT) is required every 6 months until the C becomes resistant.

What do you think of all that?

i really really appreciate your help/opinion its a massive help so thanks so much! 

User
Posted 30 Nov 2021 at 01:05
Gosh Dave, that poor woman is now crushed by your assessment of her; good job you aren't doing her appraisal 😥
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2021 at 01:20
Amy, I don't think I misunderstood your timeline by more than a couple of weeks. From symptoms, it is reasonable to assume the cancer was active from mid-October if not earlier.

As he has never had a biopsy, it is impossible to know but may be that he has a prostate cancer that is not responsive to hormone therapy - there are many different kinds. It is unlikely to be small cell or basal cell prostate cancer as these don't usually produce PSA but large cell, mucinous and a couple of others can give off high PSA readings while not responsive to HT.

It is impossible to know without a testosterone test what the problem might be. The onco may suggest changing to another hormone such as Prostap or Zoladex to see if that is better, or Degarelix which can bring someone to castrate level within a couple of days, or Stilboestrol which is oestrogen based and works in a different way to the others. They might suggest an orchiectomy (surgical removal of the testicles) although this is rare these days. There might be a discussion about whether he is strong enough for chemo, or they may add another drug to the Decapeptyl to help it work more efficiently.

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

User
Posted 30 Nov 2021 at 08:32

Originally Posted by: Online Community Member
Gosh Dave, that poor woman is now crushed by your assessment of her; good job you aren't doing her appraisal 😥

I don't have time to do appraisals, you'll have to speak to someone higher up the pecking order than me, I'm too busy deflecting jobs to other people...now let me get on with doing my job... those tiktok videos, I'm sure I seen a cat playing a piano.😸

Edited by member 30 Nov 2021 at 20:14  | Reason: Not specified

Dave

User
Posted 10 Dec 2021 at 15:51

Hi everyone so just an update after a clinic appointment this morning with urology.

They are insisting my Grandad has a procedure under general anaesthetic next week to remove and biopsy wart-like growths in his bladder.. these were noted at the bladder camera test in October and the doctor on the day said there were too many to zap on without anaesthesia.

The urologist thinks the bladder growths may be contributing to his high PSA level as my Grandads urinary flow issues have resolved therefore he is happy to assume the primary prostate tumour has responded well to the HT. 

He prescribed casodex 50mg to start taking right away to help bring back his appetite and reduce his PSA. 
They didn’t give us his testosterone level but we will chase this up next week when he is admitted.

They also made a few calls and ruled out misdosage.

The urologist seems to be concerned the C may be aggressive due to the lack of prolonged response to the HT but we are taking it a step at a time now thats all we can do.

will keep you all updated, these updates are also for others researching as Ive came across many similar posts on forums to our situation but most of the time there is no activity after the first couple of posts.

 

User
Posted 30 Dec 2021 at 20:28

Hi Lyn,

Did you see my update? We are currently waiting for an appointment with oncology. He has had more Decapeptyl and casodex and no change in symptoms. He is bedridden now with zero appetite and is completely anorexic. His muscles have wasted so much and he is hardly able to turn in bed. He is only drinking one ensure shake per day. And he has a lot of mucus and phlegm which is irritating him ..His appointment isnt for another 2 weeks and he refuses to let us call an ambulance to have him admitted through a&e so he will be seen quicker.. this is a dreadful situation he is so ill and we are wondering now will any further treatments bring him back from this . He doesn’t have any other health conditions and he has strong lungs and heart. Would you happen to know is abiraterone tough on patients? Is it likely they will give it a go? 

User
Posted 30 Dec 2021 at 22:17

Amy, this could be really serious - you might have to override your grandad's wishes. Who is involved? Does his GP and oncologist know how bad things are? Is the GP visiting? Is the local hospice or end of life team involved? Does he have a proper medical bed? Who is managing his pain relief? Who is turning him to ensure he doesn't get bed sores?
You must not stick your heads in the sand and wait for this to get better and instinctively, your grandad is right to want to avoid 999 but there comes a point where you have to act in his best interests to minimise his suffering. This is what the hospice / Macmillan/ palliative care nurses are experts in.

Edited by member 31 Dec 2021 at 12:08  | Reason: Not specified

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

User
Posted 31 Dec 2021 at 13:20

There is no one else involved only us at home, we are taking care of all his needs. He doesn’t want anyone else looking after him and refuses to go to hospital. It is beginning to hurt him to pee so it may only be a matter of time before he has no choice but to go to hospital. This is all so difficult and its frustrating that he is being so stubborn. If we knew he would be given abiraterone regardless of his rapid deterioration we would be more inclined to go against his wishes and have him admitted to hospital but we dont know. His oncologist isn’t in until Tuesday so i have to ring then and see what he says

User
Posted 31 Dec 2021 at 14:36
He can't be forced to go into hospital against his wishes but if he dies at home and the GP / district nurses / hospice team haven't been involved, you risk a police investigation and possible criminal charges. The same applies if he is admitted to hospital with significant bed sores; a multi-agency investigation and possible charges for neglect. Whoever is his next of kin really needs to speak to his GP urgently.

Does he at least have a proper medical bed with pressure mattress? Social services can provide this for as long as he needs it, and other things that will make him more comfortable.

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

User
Posted 31 Dec 2021 at 19:23

No he doesn’t have a medical bed but we are turning him every few hours and he is being well looked after from a comfort and hygiene perspective.. there is absolutely no doubt that he needs fluids at the very least, but we are afraid he will turn away a doctor if we call one to the house. He also is not in any pain which is good. We have just spoke to him again about going to hospital and he didn’t answer us which is a step in the right direction- it wasn’t an outright no. So hopefully tomorrow we will be able to make a move on accessing some medical help. 

User
Posted 31 Dec 2021 at 21:06

Hi Amy, I hadn't looked at this the way Lyn has, but I can see her point. Though you and I and possibly most people reading this bulletin board would say you seem to be acting reasonably. In the cold light of day when your grandfather is unable to tell his side of the story. This may look like serious neglect of a vulnerable person. I think you have to get medics, hospice involved, to make sure he is getting the best care he can get, and to make sure his wishes are documented. 

If he turns away the doctor, so be it; if you don't call one it does not look so good. You obviously do care or you would not be asking for help from this group. Lyn is the only person prepared to put her head above the parapet, so the only advice you have got from us amateurs is, call his GP get the professionals involved.

Dave

User
Posted 31 Dec 2021 at 21:39

Yeah we are just completely torn between forcefully getting him the medical help he needs and going against his wishes. He is definitely not making this easy on us. We suggested calling an ambulance to have him admitted the other day and he was furious with us. He is stubborn at the best of times but we will keep trying to get him to come around. Between us all he is being well looked after he is being pampered to the last and we are keeping his personal hygiene very well. He is being turned every few hours. We are counting his milk and water intake in mls to make sure he is drinking enough and we have purchased every nutritional drink known to man to find one he likes. He is taking one a day diluted with milk. Far from the calories he needs but better than nothing. His last hospital experience a few weeks ago was horrendous as he was constantly sweating with the heat in the ward and he is a tall man so he found the bed extremely uncomfortable. This is why he doesn’t want to return to hospital:(

User
Posted 01 Jan 2022 at 01:30

Just to be clear, I am not advocating him going to hospital. The best chance of keeping him home is the GP or hospice team. I kidnapped my mum from a hospice and had her moved home in a private ambulance so that I could look after her properly - but I couldn't have done it without the GP popping in every few days.

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

 
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