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17 years with metastatic prostate cancer – hope disappearing down the Lu

User
Posted 10 Dec 2019 at 10:56

No long story this time round. I’m going to cut straight to the chase. The Lu-177 treatment has stopped working. My PSA has been on a steady increase for the last three months. My last PSMA scan showed the large mets in my spine have stabilised, but not improved. Smaller mets in my spine, clavicle and scapula have improved slightly, as has activity in a lymph node.

I had a chat with my Doctor yesterday after the 5th infusion, and he told me a sixth cycle was unlikely to resolve/significantly reduce the mets in my spine. When I asked him if I should pay for a sixth cycle or spend the money on a family holiday, he said “That’s a very difficult question to answer”.

So, it looks like I’m going to have to try to get myself on an immunotherapy trial. I’m germ line BRAC2 and my tumours exhibit micro-statellite- instability, so there is at least some chance immunotherapy will work. I’ve decided against Cabazitaxel, as I don’t want to feel sick for months for no real gain.

So, my fellow warriors, if you have any advice for future treatment, please let me know. I’m open to pretty much anything. Any advice will be gratefully received.

Aside from that, I’d like to wish you all happy holidays and good/better health for 2020.

David.

User
Posted 10 Dec 2019 at 14:43

Well I have no suggestions I’m afraid but I wish you all best nonetheless. You have done so well so far I hope something comes up to help.

Good luck 

Phil 

User
Posted 10 Dec 2019 at 17:34
Sorry I have no ideas but wish you good luck and hope you get on the immunotherapy trial.

barbara x

User
Posted 10 Dec 2019 at 18:57
Hi David I don’t know how you must feel reaching this stage , but can imagine it’s awful. I know how any changes set me off on a major wobble. All I can hope is that you have some rest and peace over Xmas and get that immuno trial if that’s what you want off Santa
User
Posted 10 Dec 2019 at 20:20

Hi David, sorry I don’t have an answer regarding future treatment but wish you and everyone else on the forum a relaxing Christmas holiday and all best wishes for 2020.

You have been through so much, I sincerely hope a possible new treatment presents itself.

Best wishes,

Ian

 

Ido4

User
Posted 10 Dec 2019 at 21:15

Hi David a colleague of mine said his friend is on the immunotherapy trial and it’s working well. Fingers crossed you get on it

Have a good Christmas 

Bri 

User
Posted 11 Dec 2019 at 01:18

Hi David have you discussed changing to Actinium 225 or Thorium 227 as the kill range is greater and is more suitable for bone envolvement.

All the best

Roy

User
Posted 11 Dec 2019 at 03:03

For what it is worth, my husband had few side effects from Cabazitaxel.

User
Posted 11 Dec 2019 at 03:39
Suggest you could ask about treatment Roy has suggested and without wanting to divert thread if Roy is looking in please inform on your own thread how you are getting on. Coincidentally I checked yesterday and I think you last posted in July.
Barry
User
Posted 16 Dec 2019 at 16:05

Read our profile, husband started trial on 11/22.  He feels better but we wont' know until scans on 1/2 if the drugs are working.  Immunotherapy and oral drug.  We are at Mayo, Rochester, MN.  The trial is free.  I don't know if individuals outside the country are eligible.  If you want to check I can give you the principal investigator for the study and you could contact him at Mayo and ask.  It is a long shot but wanted to mention it.  I was disappointed to read your post and very sorry Lutetium is not working.  My heart is heavy for you and your family.  

Saint Paul

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User
Posted 10 Dec 2019 at 14:43

Well I have no suggestions I’m afraid but I wish you all best nonetheless. You have done so well so far I hope something comes up to help.

Good luck 

Phil 

User
Posted 10 Dec 2019 at 15:45

Thank you Phil - very kind. 

User
Posted 10 Dec 2019 at 17:34
Sorry I have no ideas but wish you good luck and hope you get on the immunotherapy trial.

barbara x

User
Posted 10 Dec 2019 at 18:25

Thank you. 

User
Posted 10 Dec 2019 at 18:57
Hi David I don’t know how you must feel reaching this stage , but can imagine it’s awful. I know how any changes set me off on a major wobble. All I can hope is that you have some rest and peace over Xmas and get that immuno trial if that’s what you want off Santa
User
Posted 10 Dec 2019 at 19:36

Thanks Chris. Major wobble today, might even have been a few tears - allegedly 😀 starting to move on from that now and focusing on the game at hand. Something will turn up. Thanks again for your message. Means a lot. Have a great Xmas. David. 

User
Posted 10 Dec 2019 at 20:20

Hi David, sorry I don’t have an answer regarding future treatment but wish you and everyone else on the forum a relaxing Christmas holiday and all best wishes for 2020.

You have been through so much, I sincerely hope a possible new treatment presents itself.

Best wishes,

Ian

 

Ido4

User
Posted 10 Dec 2019 at 21:02

Thank you Ian - that’s very kind of you. I wish the same for you. David. 

User
Posted 10 Dec 2019 at 21:15

Hi David a colleague of mine said his friend is on the immunotherapy trial and it’s working well. Fingers crossed you get on it

Have a good Christmas 

Bri 

User
Posted 10 Dec 2019 at 21:37

Thanks Bri. Do you know what trial he is on? You have a good Xmas too. David. 

User
Posted 11 Dec 2019 at 01:18

Hi David have you discussed changing to Actinium 225 or Thorium 227 as the kill range is greater and is more suitable for bone envolvement.

All the best

Roy

User
Posted 11 Dec 2019 at 03:03

For what it is worth, my husband had few side effects from Cabazitaxel.

User
Posted 11 Dec 2019 at 03:39
Suggest you could ask about treatment Roy has suggested and without wanting to divert thread if Roy is looking in please inform on your own thread how you are getting on. Coincidentally I checked yesterday and I think you last posted in July.
Barry
User
Posted 11 Dec 2019 at 10:08

Hi Roy - i have, but funds running low. Thanks for replying. David.

User
Posted 16 Dec 2019 at 16:05

Read our profile, husband started trial on 11/22.  He feels better but we wont' know until scans on 1/2 if the drugs are working.  Immunotherapy and oral drug.  We are at Mayo, Rochester, MN.  The trial is free.  I don't know if individuals outside the country are eligible.  If you want to check I can give you the principal investigator for the study and you could contact him at Mayo and ask.  It is a long shot but wanted to mention it.  I was disappointed to read your post and very sorry Lutetium is not working.  My heart is heavy for you and your family.  

Saint Paul

User
Posted 16 Dec 2019 at 20:37

Thank you SP - I’ll check it out. Have a great Xmas. David. 

User
Posted 16 Dec 2019 at 20:40

Thanks Barry. Have a great Xmas and New Year.  David. 

 
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