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I am 8 years post diagnosis. Gleason was 9 (5-4). Initially had prostate removed and clean margins, it came back in a year, then had radiation and 2 years of daily Casodex 150mg, it came back again after another year. Then luprolide and casodex 3 months/50mg. It came back again but this time after 6 months, and now I have 3 tumors in my pelvic lymph nodes. I am getting Luprolide and 3 months of casodex ( 50mg) again next week. I really respect my Oncologist and certainly can't complain about 8 good years, but just have to wonder as each treatment lasts a shorter period of time, if there are other options anyone has had success with?
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I am sorry for your situation but glad that you got 8 years from the original diagnosis, not everyone is that fortunate, so do enjoy each and everyday! To help with providing thoughts on your situation, can you please provide your age and also the tests performed recently that explain the extent of the metastatic spread? For example, bone scan, MRI scan, CT scan, PSMA scan?
From your initial information it sounds like your health team has attempted a few rounds of palliative treatment and then having you stop the drugs, and within a short time the remission ended and the cancer came back. I would be curious about the thought process / decision making as to why you started/stopped at each point in time. Certainly no one "wants" to be any treatment, but would appreciate learning.
I am sorry to answer your question with questions, but find these answers may be helpful for us all to provide input.
Keep The Faith
@pwitkin, I think you may appreciate these related discussions:
- Living with metastic prostate cancer: Any positive stories to share? https://connect.mayoclinic.org/discussion/prostrate-metastatic/
- Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years? https://connect.mayoclinic.org/discussion/stage-4-pc-longevity-anyone-here-have-pc-more-than-10-years/
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1 ReactionAs edmond1971 says, any more clinical data you can provide may assist the forum in providing assessment and feedback.
With what you describe, it would seem doublet or triplet therapy may be something to discuss with your medical team. Here's a link to start your literature search - https://pubmed.ncbi.nlm.nih.gov/37055323/
If you have a radiologist on your medical team, they should be part of your decision making process.
Here's my clinical history, I had triplet therapy starting in Jan 17, recently, we're doing doublet and holding Xtandi in reserve pending PSA results at the end of July. If it goes down again, don't add, if it doesn't, we'll consider adding Xtandi, an ARI.
It is likely your advanced PCA cannot be "cured." You ay have to manage it is a chronic disease with a whack a mole approach. Perhaps think in terms of 3-5 years, will this treatment work for the next 3-5 years, if so, great, because then there will be new treatment choices. as medical research continues.
May I ask where you are receiving your treatment and who your primary cancer physician is?
I am here in the Kansas City area. My medical team is at the Olathe Health Center.
I have a radiologist and oncologist, no urologist as not needed.
I'm the quarterback and it's shared decision making so not a lead. As an example, my radiologist is the one who put the prescription in for Orgovyx, my oncologist put the prescription in for Xtandi.
My radiologist does take into account what the oncologist thinks.
Kevin