Feel scared

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User

Posted 20 Sep 2017 at 16:26

My story so far briefly

Looking for support, of any kind.

My wonderful husband of just 4 months, at the time, was diagnosed in 2015 at the age of 40 his PSA was 469 on diagnosis. He has advanced prostrate cancer, Mets to lymph nodes and bones.

His treatments started with zoladex, with 6 rounds of chemo ( which was stopped after 1mg as he went into anaphylactic shock twice). He started biclaclutamide in November 2015 due to increasing PSA this worked for 5 months. After repeat scans showing enlarged lymph nodes again compressing his kidney's and a PSA 120, he had a bilateral neprostomy, and started on eziclutamide (sorry for spelling not sure if this is correct) on a repeat scan in March this year showing no enlarge lymph nodes, and a PSA of 5.7, his neprostomy was removed. We have just had his 3 monthly PSA blood test and it has risen again to 19 we see his oncologist on the 25th, to say we are gutted is an understatement. Any support would be greatly appreciated.

User

Posted 20 Sep 2017 at 17:37

Hello Kez, I'm so sorry to see you here.

I'm sure they'll be someone on here to advise you so don't despair.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 20 Sep 2017 at 17:49

Thank you Sandra. For your kind words.

Regards Nicola

User

Posted 20 Sep 2017 at 17:54

Hi Kez
it is hard to respond without knowing how much you understand of the situation and / or how clearly the doctors have explained a) the prognosis and b) the different meds and what they are used for.

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

User

Posted 20 Sep 2017 at 18:36

Hi thank you for your reply

I believe I am well informed on all his treatments/prognosis . I do everything for him including his neprostomy care when they were in place. We know the prognosis as our urologist told us when he was diagnosed 'you have advanced prostrate cancer and we can't cure you so you will die from it' his exact words, they are imprinted in my brain. We do ask alot of questions and research everything. The only thing we haven't asked is how long to expect him to live, as we have decided we don't want to know.

User

Posted 20 Sep 2017 at 20:13

Okay - so the zoladex stopped working and they added bicalutimide, which tends to be a short term solution only. Once that failed, he became hormone refractory which is why they introduced enzalutimide. The rise in PSA this time does not necessarily mean the enza will be stopped - some men stay on it for as long as the scans indicate that the tumours are being held stable. If enza is failing (which you don't know yet - the PSA is not always reliable) he is unlikely to be offered abiraterone as that tends not to work if enza has stopped working.

Not sure whether you meant that he had 6 sessions of chemo and then had to stop, or whether he only had one of the 6 planned sessions? You could ask your nurse specialist whether a reaction to one type of chemo rules out trying any other types later? He may also be suitable for radium 223 at some point, particularly if it turns out that the PSA is being generated in the bone mets.

When he was diagnosed, did they definitely diagnose it as adenocarcinoma? There are at least 27 types of PCa and some of the rarer types do not respond to hormone treatment as well as the common form.

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

User

Posted 21 Sep 2017 at 05:29

Hi thank you for your reply.

He only had 1mg of his first round of chemotherapy, before going into aniphlactic shock, we were wondering about wether he could try other chemotherapy, he had docataxel. It is on our list of questions to ask. It is adenocarcinoma of the prostrate as far as I can remember, but I will check in my file, i'm just in bed at the moment lol. PC uk have mentioned to me today about gene testing and if Kieron carries the brachia 2 gene, and the parp inhibitor, showing promising results when being used in men with the brachia 2 gene. Kieron has taken part in a genetic study when he was first diagnosed, but it only entailed a salvia sample and completion of a questionnaire. So it is on our list of questions too.

I just want to add, apart from Kieron having aches and pains, he is really well. He never loses his appetite, he looks so well, no weight loss, all his other bloods, FBC, U&E, liver profile and bone profile which are done every 3 months too are all normal. If you saw Kieron you would never dream he had cancer. Which is all good I know.

Regards Nicola

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