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Spread and Incurable now

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User
Posted 18 Dec 2020 at 21:32

Hi all

Hoping you are all well.

We had a conference call with the OH’s Onco yesterday to get the results of the recent PSMA PET scan. Onco had warned us that with a PSA of 2.5 the cancer might be to small too see but that’s not what happened at all.

Scan showed the PCa has now gone to OH’s bones in various places and his lymph nodes also in various places and he is now incurable. Absolutely devastated and it has taken me 24 hours just to be able to breath normally.

He is back on HT and bicalutamide for the foreseeable and in 8 weeks we will have another PSA test and then the Onco will decide if we are having another round of chemo or Enzo. Can anyone tell me why he would be considering Enzo now as my understanding is that this is for men who are castrate resistant and he can’t know that as OH doesn’t have his first HT shot until Xmas Eve!!!  How can HT not be working if he hasn’t taken it since January 2019. That makes no sense to me!

I always knew with a Gleason 9 this was probably going to come back at us at some point but it’s still one hell of a shock to get that news over the telephone. 

Any encouragement at all at this stage would be most welcome because I am struggling to find any positives in this.

 

Debbie xxx
User
Posted 19 Dec 2020 at 09:57

Hi Chris

Thank you so much  for you response.  I remember reading your bio  when I first  joined this forum but have just read it again and jeez, you have been through the wringer with this horrible disease!! Sending you lots of good wishes and support for the new year and your ongoing battle. 

Debbie xxx
User
Posted 18 Dec 2020 at 23:38

Hi Debbie, 

Sorry to hear how things are going. Use of Enzo rather than chemo seems to be a covid thing. This other thread is currently active.

https://community.prostatecanceruk.org/posts/t26917-Early-Chemotherapy-vs-Enzalutamide#post250194

It may answer your questions re Enzo. 

Dave

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User
Posted 18 Dec 2020 at 23:38

Hi Debbie, 

Sorry to hear how things are going. Use of Enzo rather than chemo seems to be a covid thing. This other thread is currently active.

https://community.prostatecanceruk.org/posts/t26917-Early-Chemotherapy-vs-Enzalutamide#post250194

It may answer your questions re Enzo. 

Dave

User
Posted 19 Dec 2020 at 00:07

Thank you so much for this Dave. It was really useful and answered a lot of questions for me as I believed that Enza could only be used on men who were castrate resistant which is obviously not the case. I Will do some more research on Enza to see what I can find as I think we may well be facing the chemo/ Enza choice in a few weeks time. If there are any other members out there who can chip in with an opinion I would be very interested to hear it.

Thanks again Dave x

Edited by member 19 Dec 2020 at 00:27  | Reason: Not specified

Debbie xxx
User
Posted 19 Dec 2020 at 08:56
If hubby has happily jumped on HT and take the early Enzo etc he could have years and years yet maybe. Maybe you’ve read my profile. They don’t even test my PSA anymore but will be well over 1000. Still no treatment since surgery except recently some palliative RT to spine. I also have lymph’s up in various parts of my body. Probably giving in on my QOL crusade in January or I’ll be dead before next Xmas most likely

Good luck

If life gives you lemons , then make lemonade

User
Posted 19 Dec 2020 at 09:57

Hi Chris

Thank you so much  for you response.  I remember reading your bio  when I first  joined this forum but have just read it again and jeez, you have been through the wringer with this horrible disease!! Sending you lots of good wishes and support for the new year and your ongoing battle. 

Debbie xxx
User
Posted 19 Dec 2020 at 12:45
Hi Debbie, sorry to read the damn disease has come back. Hopefully the bicalutomide and subsequent HT will keep it in check again.

My Onco plans to keep me on Prostap till it stops working whenever that is.

A bloke at my cancer support group told me I could only stay on HT for 3 years, my Onco said that is nonsense.

Have a relaxed Christmas and try not to worry too much.

User
Posted 20 Dec 2020 at 18:54

Thanks for your response Jasper xx

Debbie xxx
User
Posted 21 Dec 2020 at 10:20

So sorry to read about PET scan result, hopefully a combination of PROSTAP and Enzalutamide will keep things at bay for a long time. It is so hard when this disease progresses and I totally get the hard to breathe feeling. Take care both of you.

Ido4

User
Posted 21 Dec 2020 at 18:41

Sorry to hear this news 
Please read my Profile 
When I had spread I was advised to try Early Chemo

Regards Barry

User
Posted 22 Dec 2020 at 23:45

I had a PSA of 1000 five years ago when diagnosed been on prostap since and feeling ok. Had chemo and RT and still ok                        Merry Christmas

 

 
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