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What comes next in this journey

User
Posted 29 Mar 2024 at 07:57

Hi all,


Not sure I’m in the right place as I’m aware it’s triggering for a lot of men but as a daughter I’m not sure what to expect with what’s next with Dad. Basically he’s now on Abiraterone and zoladex (only 6 weeks) readings from past 9 weeks 18, 26, 32 now 31.6. It came out that a bone scan he had in July showed excess mets to skull, shoulders, ribs, spine. I feel like I’m waiting for something to happen but not sure what I’m waiting for if that makes sense. I’m his go to for hospital emergencies, chasing drs etc but inbetween we talk everyday stuff and it’s mentioned in passing but he likes to focus more on other things. Ie yesterdays consultation was more about the dr confirming he could go on holiday to Salou than what’s actually happening in his body, and I totally get it from his point of view - but for me him going on holiday is a stressor as I’m in the dark as to what to expect moving forward. If anyone can talk through next stages that would be great, and if I need to move my post to a different area I can 🙏 

User
Posted 01 Apr 2024 at 20:12

Tracey, unlike Facebook, news posts on here go through a moderation process and due to time stamps the sometimes get lost. Hopefully someone can give you some advice. Not sure if they are back tomorrow but the nurses on this site are brilliant, the number is at the top of the page.


Thanks Chris 


 

User
Posted 01 Apr 2024 at 22:52
At some point, they will stop the abiraterone because it is no longer effective. They may suggest chemo at that point or possibly will add bicalutimide tablets to see if that brings the PSA down. It is possible that the doctors will sday he is suitable for a treatment called Radium223 which doesn't treat the cancer in his prostate but can help with the bone mets.

Basically, there aren't many options after the abiraterone but your dad isn't at end of life / terminal stage yet. I hope he has a lovely holiday.

PS has anyone talked to you about the symptoms of spinal cord compression? If dad's feet / legs go numb or start tingling or he suddenly becomes incontinent, seek emergency medical attention. Make sure he knows the symptoms before he goes away.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Apr 2024 at 21:39

Sorry - only just seen your post.


We now have a report of the scan he had in July, mom and dad even asked two consultants if it was still in the rib since this scan (as that was the only place it was in before, and they both said no, then it was only when they asked a new female consultant about going on holiday that she read off the computer - came as a shock and then today seeing the full detail it’s rocked us all) I’m not sure what they were waiting for but he didn’t start treatment on Abi until Feb. They had tried him on casodex alongside zoladex end of last year and it just continued to rise. He was diagnosed with peripheral neuropathy about 20 years ago and now cant feel his feet from the knees down which makes not only walking difficult but looking out for MSCC. Thanks for listening 🙏


His most recent bone scan has shown widespread skeletal bone metastases including in the skull, pelvic bones, both scapulae, both humeri, right radius, left ulna, right first rib, C7, T1, L1, L5 and possibly C2 vertebra.


There are also tiny new lesions in C3, T3 and T7. His CT scan from last year in July 2023 did not show any visceral metastatic disease.

 
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