Didn't think it could get any worse (Gleason 10!)

Hi Zaxx  Thank you very much for your update - it's a hard journey and with the support of your family - you will make it. The waiting game is the hardest part of the journey - if you tell your team you are available at short notice you may well pick up a cancellation and move forward.

Hormone Therapy differs for all of us - I am 2 years into 3 years of it and I had a "dark day" yesterday - but back on the fight today. It's good news that your Employer's are onside too - let's hope the oncology appointment is sooner than later - but remember the hormones will be doing their work and stopping the little sods from reproducing.

Best wishes - Brian.

Hi Zaxx,

I am so sorry for the pain and the diagnosis but I can read that you are now in fighting spirit and this will help greatly!  You also have a supportive family which is so important for the fight with this ba...rd! We were where you are two months ago and the first two days I was numb, cold and hot and did not know what hit us. Since then the full treatment started and somehow we are back in a life routine where my husband sweat a bit but much nicer for suppressed testosterone. The minute you will have your plan from the oncologist life will look much better. 

Please stay with this community which is brilliant help and we all fight it together.

Lots of love

Dafna

Hi.  I was diagnosed Gleason 5+4 ( high grade ) with a PSA of 310 in September 2023. Scans showed PC throughout spine, ribs, scapula, pelvis, neck, femoral shaft.  And I only became aware by booking a ‘Health check’ at the doctors and asked the nurse if she would include a PSA check, having been refused one in 09/2022 as the doctor ‘didn’t think it was necessary’ - my symptom being of having recently starting to get up in the night for a pee. Otherwise a fit and healthy 79 year old. 

I am now on the Triplet therapy of ADT, Chemotherapy and Darolutamide ( NUBEQA) + quarterly Decapeptyl. Started chemotherapy on January 8th and it’s rough - never been one to take even paracetamol - now loads of pills, but it’s got to be done!.  Anyone else going through the same treatment. 

Hi Joe,  I’ve just read your article and posted my own.  Can you enlighten the group as to how the last seven years have been ? Thanks

Hello Stitcher1907  A warm welcome to the online Prostate Community.

I am sorry to find you here but welcome anyway - I know you didn't want to join our club.

I hope you don't mind me diving in but if you click on joeven 's name you will find he's written up his profile and a diary of his journey to date - I hope this helps.

Best wishes - Brian.

Hi sticher1907

The last seven years have been an up and down battle for myself that is, the community has a great following, the.advice we give to people is second to none, plus the general chat relieving the stress from lots of us. If ever you need a wuestion answered then if not myself then others would jump in, we never let anyone down.

The night pee I used to get up three or more times a night, now it’s only one maybe twice, My pills are looked after by my wife, I take up to twenty or so a day, I know what lots of tabs are like.

Chemo can be a devil, knocked me for six and I might have to have it again soon, by the way make sure y,ou have a good thermometer take your temp twice daily.

Stay safe

Joe

Hi again Joe, Just found your other posts - so no need to reply.  Thanks

Thanks Brian.  I found him after I’d posted - should have looked first - Joe’s had a rough time. 

Thanks Joe.

Hi Zaxx.

Whilst looking for something else I came across this article which, although it relates to transformational neuroendocrine prostate cancer, it seems to indicate that a form of SABR therapy may be of benefit. Something to run past your oncologist.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9906108/#:~:text=Docetaxel%20is%20the%20preferred%20chemotherapy,or%20carboplatin%20combined%20with%20etoposide.

All the best.