To the amazing and wise members of this group, I inform you that I have been diagnosed with level IV PCa with Gleason score of 9 and bone metastisis throughout my body. I have been on ADT for 18 months doing intense exercise (running and weights, the latter against doctor's orders) and have received RT to weight bearing areas (spine, shoulders and pelvis). Several weeks ago I had a bone scan done and received the amazing news that my bone Mets is significantly reduced, almost undetectable in many places). Based on your incredible knowledge and experience, what would you see as my prognosis. I am feeling hopeful, but understand it's just a matter of time before I become castration resistant. I don't want to live forever, but another 5 years would be nice.
Wondering what to expect: To the... - Advanced Prostate...
Wondering what to expect
Great that RT shrank your bone metastases! I guess your doctor didn't want you using weights because bone that has been invaded by metastases can break easily. Are you only doing ADT? Or have you hadded one or more of the life-extending additional therapies (docetaxel, Zytiga, Xtandi or Erleada)?
This is the issue that we all face on the onset . We all face the ticking clock ..Please don’t predict resistance at this time upon yourself . Many men have lived for decades beyond even worse diagnosis than yours .. keep hope alive stay positive and live enjoying life.. I was #4 gl4+4 t-4 and messed up urologically . I’ve now had over four years in the clear so to speak . You can keep that Psa down for a long time . That’s the plan . IT is possible .. Advanced Prostate Cancer will be in us until the end. This brings to meaning “ Live for today”. You re doing well . Keep that trajectory going ..treat yourself well . Take care CJ .😎✌️
Thanks for the hope, Whimpy. I think that's what I am looking for.
Aren’t we all brother?
Sounds like you got a good response so far.
18 months without becoming castrate resistant is good for just primary ADT. Are you just on primary ADT or doing another anti-androgen in addition? Also what is your PSA history?
Deep PSA response with a low nadir and long time to nadir are good prognostic indicators.
We are all different though so it's hard to predict life expectancy based on statistics. Many men live more than 5 years with this so there is hope.
What is a long time to nadir?
Hi CountryJoe,
Why settle for " 5 " you seem to being doing fine, apart from the cancer, so there's the answer, am I okay apart from my cancer or am I okay with my cancer. Go for 21 years and celebrate it like you first did.
All the best.
Phil
Great, don't over do the exercise. What ADT drugs are you on? Also what is your age and general health.
My brother died in January this year after 21 years with a Gleason 9 advanced PCa. Over the last few years he underwent Lu-177 PSMA therapy, which gave him a great quality of life. Some months after his 4th Lu PSMA injection his PSA started rising rapidly. As a fellow PCa sufferer and the author of 3 successful books on PCa, I suggested he see his oncologist urgently with a view to starting chemo. Disappointingly, he decided to undertake a trip from Sydney to Canada, and western USA for 6 weeks. Then 4 weeks delay to see the MO. Result: he became too late for docetaxel or similar.
I arranged for him to get compassionate access to late stage cancer therapy called Veyonda (Noxopharm) which had just concluded Phase I DAART trial. Sadly, his MO would not allow this access and he quickly went downhill.
The reason for my post is two fold: Many men survive for long periods with a high Gleason score and secondly, many new therapies are in the clinical trial phase which will be even more effective than present SOC treatments. I am very confident that Veyonda will be one such advance.
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