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Running out of options (olaparib failed)

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User
Posted 17 Mar 2024 at 10:37

I was lucky that I qualified for olaparib but that has now failed (March 2024). My L2 vertabrae is crumbling away, and scans show cauda equina compression which occasionally results in the most incredible pain in my back for around 2 hours until pain relief kicks in. Radiotherapy and surgery are no longer options. My prognosis is now months but are things like radium 223, zoledronic acid or bisphosphonates likely to provide any pain relief/bone protection going forward? Seeing my oncologist tomorrow for a review 😢.

PS the care I have had at Hereford and Cheltenham hospital has been outstanding over the last 6 years.

User
Posted 17 Mar 2024 at 15:55

Hey Babycham,

Ive followed your journey these last 2 years since my own diagnosis. You've always been so stoic and yet glowing in praise for the people that have tried to help.

You are a special man.

 

Jamie.

User
Posted 17 Mar 2024 at 13:50
Really sorry to see this. No harm asking about R223 but be aware that, in some cases, it increases the bone pain rather than reducing it which makes it a bit of a gamble as a treatment that is purposed to improve quality of life :-/

When you say RT & surgery are no longer an option, do you mean RT / surgery on the prostate or on the spine? Some men are able to have RT to the spinal tumours to reduce cauda equina compression (SPCC) and there are men who have had cement or pins in the spine but as you say, your case may be too severe.

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

User
Posted 17 Mar 2024 at 10:37

I was lucky that I qualified for olaparib but that has now failed (March 2024). My L2 vertabrae is crumbling away, and scans show cauda equina compression which occasionally results in the most incredible pain in my back for around 2 hours until pain relief kicks in. Radiotherapy and surgery are no longer options. My prognosis is now months but are things like radium 223, zoledronic acid or bisphosphonates likely to provide any pain relief/bone protection going forward? Seeing my oncologist tomorrow for a review 😢.

PS the care I have had at Hereford and Cheltenham hospital has been outstanding over the last 6 years.

User
Posted 17 Mar 2024 at 14:35

Thanks for the reply, I am up to the max dosage on radiotherapy to the spine, and apparently the vertabra either side are too far gone to attach anything to. I will get the intimate details tomorrow!

User
Posted 18 Mar 2024 at 08:17

Hi babycham 

I'm a couple of years behind you in being diagnosed but am on a similar journey,I'm reading your thread and wish you all the best moving forward with your treatment and hope that your pain eases physically and emotionally.

Stay strong regards Phil 

 

User
Posted 18 Mar 2024 at 08:41

Originally Posted by: Online Community Member
 You've always been so stoic and yet glowing in praise for the people that have tried to help.

You are a special man.

I completely echo Jamie's sentiments. 

User
Posted 18 Mar 2024 at 09:06

Thanks both, praise goes to those that deserve it. Without their efforts I wouldn't still be here. The last few months havent been great QoL wise but you cant have everything in my position!

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User
Posted 17 Mar 2024 at 13:50
Really sorry to see this. No harm asking about R223 but be aware that, in some cases, it increases the bone pain rather than reducing it which makes it a bit of a gamble as a treatment that is purposed to improve quality of life :-/

When you say RT & surgery are no longer an option, do you mean RT / surgery on the prostate or on the spine? Some men are able to have RT to the spinal tumours to reduce cauda equina compression (SPCC) and there are men who have had cement or pins in the spine but as you say, your case may be too severe.

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

User
Posted 17 Mar 2024 at 14:35

Thanks for the reply, I am up to the max dosage on radiotherapy to the spine, and apparently the vertabra either side are too far gone to attach anything to. I will get the intimate details tomorrow!

User
Posted 17 Mar 2024 at 15:55

Hey Babycham,

Ive followed your journey these last 2 years since my own diagnosis. You've always been so stoic and yet glowing in praise for the people that have tried to help.

You are a special man.

 

Jamie.

User
Posted 18 Mar 2024 at 08:17

Hi babycham 

I'm a couple of years behind you in being diagnosed but am on a similar journey,I'm reading your thread and wish you all the best moving forward with your treatment and hope that your pain eases physically and emotionally.

Stay strong regards Phil 

 

User
Posted 18 Mar 2024 at 08:41

Originally Posted by: Online Community Member
 You've always been so stoic and yet glowing in praise for the people that have tried to help.

You are a special man.

I completely echo Jamie's sentiments. 

User
Posted 18 Mar 2024 at 09:06

Thanks both, praise goes to those that deserve it. Without their efforts I wouldn't still be here. The last few months havent been great QoL wise but you cant have everything in my position!

 
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