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Metastatic Hormone refactory stage

Posted 13 Apr 2018 at 05:59
Anyone else out there at this stage or has any info on what would be helpful.

Dennis, OH (think I’m Learning the jargon) has been through the mill & now 10 years after diagnosis & all the normal routine meds has been told not advisable to proceed with anymore chemo etc. PSA climbing rapidly (39.50 ng/ml/yr) & is on 151 & was 277 at diagnosis.

Had bad reaction to Enzalutamide in the form of seizures which was like the beginning of the end for us.

After responding so well to treatment previously We got lulled into a false sense of security.

Now body is showing signs of strain! Bowels very slow which has impact on unrine flow. Neuropathy in left leg & starting in arm, skin discoloured & he is sleeping a lot...very fatigued.

Is this the beginning of the end & how do I cope with this.

Posted 13 Apr 2018 at 11:21

So sorry to hear about your troubles. One thing that occurs to me, is that if your husband could not tolerate enzalutamide , then he should be able to get abiraterone. I have been on this for nearly a year with no problems. It can be a very effective drug.

Good luck and best wishes!

Posted 13 Apr 2018 at 14:19
Hi .

My husband has incurable prostrate cancer which has spread to his bones . He was diagnosed in 2012 since which time he has been on abiraterone and hormone injections . For years his PSA was a stable 0.02 and is now rising quite rapidly , currently 1.7 . When it gets to 2 it indicates the drug is failing . They say other hormone treatments are inappropriate and alll we are left with is chemo and radiotherapy. He is very down and seems to be losing energy . What does seem to help him is healing treatments which give him a boost and I’m currently exploring other ways of helping him ( and me) cope.

I wish you all the best in the future xx

Posted 13 Apr 2018 at 17:27

Hi wifecarer,
When you say the decision has been made not to continue with chemo etc do you mean that they have also stopped his hormone treatments? Is he on anything else such as steroids instead?

If they have stopped all treatment except pain relief then yes, I am afraid he has been moved into palliative care and this is the beginning of the end. Hold on to the fact though that the beginning of the end can be quite long and there will also be a middle and an end of the end. Has he been referred to the palliative care service (if there is one in your hospital)? Also if not already done so, ask for a referral to Macmillan and / or your local hospice - they will be able to support you and give you advice on things like finances, getting any special equipment he might need in the future and so on.

Is he on a lot of pain killers? That might be why he is sleeping so much. One of the difficulties in late stage PCa is getting the balance right - not enough pain relief can make life intolerable but too much means the person is zonked out all the time. Hospitals are notoriously bad at this as it simply isn't their specialist where as hospice and Macmillan nurses are very experienced and tend to get it right for as long as possible.

If he is still having active treatment then the chemo might seem not to have been successful but you might find that the hormones will work again for a short while.

Edited by member 13 Apr 2018 at 17:59  | Reason: Not specified

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

Posted 14 Apr 2018 at 23:38
Thanks for your informative reply. I’ve booked a call with the oncologist to clarify. He is having a Zoladex implant on Tuesday as well as blood tests for full blood count etc.

He has been on steroids, morphine, Predisalone for ages but PSA etc keeps rising. Stomach not working seems to be the latest “drama”

Posted 15 Apr 2018 at 19:29
Thanks for responding. I’ve booked a call for the On logistics & will ask about this.
Posted 17 Jun 2018 at 07:33

Well things have taken a turn. The short version is Den has ended up in A&E with Myoclonic Seizures, he was admitted for two nights. Upon returning home I realised he was having water retention & that this has probably been the problem over the past few weeks. Anyway we are now on one of the things he has dreaded....the catherter! 

Posted 20 Jun 2018 at 22:57

Hi wifecarer

Unfortunately this sounds very familiar! My dad is currently in hospital with a catheter in as he to is retaining urine. He was admitted to hospital 3 weeks ago with the same problem and also had a lot of blood in his urine. He was given anti biotics then sent home. He’s in a lot of pain in his lower back and has just had a X-ray and mri to determine what is going on and it seems that he has a very enlarged Prostate and it’s putting pressure onto the nerves at his spine so he’s basically really struggling to walk. He’s been put on steroids and morphine for the pain but will be transferred to another hospital tomorrow to start radio therapy (he had 6 courses of chemo in December last year).

the urine issue seems to be fairly common as I’ve read this a few times now!

how do you know it’s the start of the end? 



Edited by member 20 Jun 2018 at 22:59  | Reason: Not specified

Posted 21 Jun 2018 at 00:47
Letitia, I have replied on your thread.

Wifecarer, how are things now?

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

Posted 21 Jun 2018 at 19:21

Den has Accepted the catheter maybe a permanent thing. He is sleeping much better as he is not been disturbed to go to the loo. He Also mentioned when he is sitting he can “feel” the urge to pass & its uncomfortable. Poor guy is also not havimg regular bowel movements & I think this may cause discomfort. The McMillan nurse will be ba k on Wednesday to discuss more in depth of what we can expect. His PSA is Now 241 from 151 in 3 months. when he was in hospital having those seizures & the were asking about “do not resuscitate“ has left me reeling. We think he is infallible because he keeps bouncing back. 

Posted 22 Aug 2018 at 00:11

Hi wife carer,

How is your husband now?

letitia x

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