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User
Posted 28 Sep 2018 at 07:48

hi, for the people who's first line hormone therapy stopped working pretty quickly, how did your next line of treatment help? Dad's psa had started to rise and there has been some progression after 9 months of decapeptyl resulting in him having some radiotherapy next week. But this has worried me into thinking that if his first line of treatment has stopped working sooner than we had all hoped then what is going to be effective? Does this mean nothing is going to help long term?

Thanks 

Miffy
User
Posted 29 Sep 2018 at 18:10
Just bumping you Miffy27 in the hope that somebody will respond
We can't control the winds - but we can adjust our sails
User
Posted 29 Sep 2018 at 20:18
Hi Miffy, there are some men who get a prostate cancer that is really determined and no treatment ever works for long. On the other hand, we have had members who did well for a year or more with the addition of the bicalutimide as your dad has just had. And when the HT and bicalutimide stop working, there are other types of hormone that work in a slightly different way and may be effective for a long time, even though he may not be able to have the chemo again.

It is impossible to guess which group your dad will fall into.

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

User
Posted 30 Sep 2018 at 14:11

It is sensible for the oncology appointment to be November - it give a time to see whether the bicalutimide has sorted the problem.

The relationship between PSA and testosterone isn't straightforward. But basically, when on hormones the stability (or instability) of the PSA indicates how well controlled the cancer is. Dormant cancer cells don't produce much PSA so your dad's recent rise tells them there is a problem. The fact that it didn't drop lower than 11 doesn't really indicate anything.

The hormone your dad is on stops testosterone from being produced which in turn starves the cancer. If the cancer is still active on HT it is either a) the cancer has learned to survive without testosterone (called being castrate resistant or hormone independent) or b) the hormone isn't stopping all the testosterone.

In case a) the next step is usually a new treatment like enzo with or without chemo. In case b) they add bicalutimide so that any testosterone floating around the body is disguised and the cancer can't find it to feed on.

Sometimes there is a rise not because the HT isn't working but because it hadn't been given at the correct dose or the interval between injections was too long or just because one injection was either stored or injected incorrectly. We have a couole of members who have to have the 12 week dose every 10 weeks to keep the cancer under control.

It is good that he will now see an oncologist.

Edited by member 30 Sep 2018 at 14:14  | Reason: Not specified

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

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User
Posted 29 Sep 2018 at 18:10
Just bumping you Miffy27 in the hope that somebody will respond
We can't control the winds - but we can adjust our sails
User
Posted 29 Sep 2018 at 20:18
Hi Miffy, there are some men who get a prostate cancer that is really determined and no treatment ever works for long. On the other hand, we have had members who did well for a year or more with the addition of the bicalutimide as your dad has just had. And when the HT and bicalutimide stop working, there are other types of hormone that work in a slightly different way and may be effective for a long time, even though he may not be able to have the chemo again.

It is impossible to guess which group your dad will fall into.

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

User
Posted 30 Sep 2018 at 01:15

Hi Miffy,

Adding to what Lyn posted. There are variations to the hormone blockade that the oncologist might try to extend effectiveness of that treatment. Either by blocking hormones or interfereing with the way the PCa can utilise those hormones. However, please ask your dads oncologist to test his hormone levels. Just because PSA is rising we shouldn’t automatically assume it’s refractory, he would not be the first man in history who’s testosterone levels were fighting back.

Then there are classses of treatments that might follow called checkpoint inhibitors and potentially PARP inhibitors (that might only be available in trials) like Olaparib. And of course inhibitors like Abiratone that try to impact the PCa’s ability to manufacture its own hormones and some inhibitors that hope to produce an immune responce. It’s important to challenge your oncologist. Make them explain the treatment path to you.

I hear on the grapevine that UCLH might be opening up a trial on Lu-177 treatment (I am not sure on this). Ask your oncologist if that might be open and appropriate for your dad. If your oncologist does not know about it or Radium 223 treatment then you need a new Onco. If he/she fluffs the reply approach nurses here and ask for assistance.

Fresh

 

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 30 Sep 2018 at 10:56
Hi Miffy, the above is all good advice. How much has the PSA gone up? Has it gone up at more than one consecutive reading? And definitely get his testosterone measured to check it is still in the castrate range. Good luck.
User
Posted 30 Sep 2018 at 11:04

It seems the medics have already determined whether he is castrate resistant and have added bicalutimide which suggests he is not.

While he remains hormone sensitive, alternatives like abi or enzo or even Lu and radium 223 will probably be kept back until he is hormone independent. 

The RT is presumably to ease the pain of the new mets.

Edited by member 30 Sep 2018 at 11:10  | Reason: Not specified

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

User
Posted 30 Sep 2018 at 12:01

his psa was 260 on diagnosis then had went down to 11 and his last reading was 19. He was given bicalutamide after this and hasn't had another reading yet. It's concerning as it never went as low as we had all wanted or expected it to. Yes Lyn the RT is just for the mets, he has to see the oncologist in November (which I feel could be sooner) for the other side of things.

What connection does psa have to testosterone levels? I would like to understand so I can ask the questions with the oncologist when the time comes. Thank you Fresh, that's the kind of fighting talk I'm looking for 😊 I want them to try everything possible.

 

Miffy
User
Posted 30 Sep 2018 at 14:11

It is sensible for the oncology appointment to be November - it give a time to see whether the bicalutimide has sorted the problem.

The relationship between PSA and testosterone isn't straightforward. But basically, when on hormones the stability (or instability) of the PSA indicates how well controlled the cancer is. Dormant cancer cells don't produce much PSA so your dad's recent rise tells them there is a problem. The fact that it didn't drop lower than 11 doesn't really indicate anything.

The hormone your dad is on stops testosterone from being produced which in turn starves the cancer. If the cancer is still active on HT it is either a) the cancer has learned to survive without testosterone (called being castrate resistant or hormone independent) or b) the hormone isn't stopping all the testosterone.

In case a) the next step is usually a new treatment like enzo with or without chemo. In case b) they add bicalutimide so that any testosterone floating around the body is disguised and the cancer can't find it to feed on.

Sometimes there is a rise not because the HT isn't working but because it hadn't been given at the correct dose or the interval between injections was too long or just because one injection was either stored or injected incorrectly. We have a couole of members who have to have the 12 week dose every 10 weeks to keep the cancer under control.

It is good that he will now see an oncologist.

Edited by member 30 Sep 2018 at 14:14  | Reason: Not specified

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

User
Posted 30 Sep 2018 at 20:10

that was very informative thank you very much. So the addition of bicalutamide could be what he needs for the time being if the psa drops again while taking it? Will this be something he will be on all the time now along with his injection?

Miffy
User
Posted 30 Sep 2018 at 21:33
It depends on what they think the reason is for the PSA rise and new mets. If they think he just had a random poor injection the bicalutimide might be temporary until you see the oncologist. It might be that he stays on bicalutimide now for as long as it works - for some men it works for a couple of years but for others it only works for a short time.

Has he definitely had his injections correctly? It must be injected into a muscle (usually the bum) every month or every 3 or 6 months.

There was someone on here not that long ago who thought his treatment was failing but it turned out the nurse was giving him the 1 month dose every 3 months!

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

User
Posted 30 Sep 2018 at 22:24

the new mets are very worrying but hopefully this bicalutamide does the trick. Yes I'm almost certain he's been getting it correctly. It's the 11.25mg decapeptyl every 3 months. And he always gets it 12 weekly sometimes slightly before. One thing I like to double check is his medication as mistakes can easily be made. He's also now on morphine for the pain which in turn made him feel sick so now on cyclizine as well. Hoping with all my being the additional bicalutamide helps.

Miffy
 
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