Is there a Next Treatment for me?

Posted by fuzzy123 @fuzzy123, Jul 17, 2023

Diagnosed July 2022 with 6 to 9 Gleason score and 37 PSA . Had external beam radiation on my prostate and a single lymph node in my pelvic area ! Been given a 50% chance to live 5 years !!! Been on Lupron injections every 6 months and Abiraterone ( Zytiga ) for 1 year with my PSA undetectable for now !! These meds can only be taken for 2 - 2 1/2 years . Is there another option after this ?? Or is this treatment basically it ??

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In reply to @ozelli "…>" + (show)
@ozelli

I didn’t ask and don’t believe I was given that info !! But what I was told the samples taken from the cancer showed Gleason scores ranging from 6 to 9. Not every sample taken has to have the exact same Gleason score !! Obviously, as mine were different and was told I have stage 4a prostate cancer!! In reality it doesn’t matter what they were now does it ??? And I’m really not interested in the technicalities of my cancer !!! I know what I have ✌️

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@foamhand

Usually the BSOC, (Best Standard Of Care) after initial radiation and hormone therapy is Chemotherapy. There are only 2 chemo drugs proven to delay the advancement of prostate Cancer. Docetaxel Chemo that can be a bit harsh. It worked for me for about a year. Then they go to Cabazitaxel after Docetaxel fails. Cabazitaxel only worked for me for 2-3 months. Now I am a candidate for the new Pluvicto radioactive injections. That's the last line drug known to work for awhile. None of these are a cure. They buy time.

I was diagnosed Gleason 9 in 2016 and I'm still here with bone metastasis and illiac lymph node metastasis. I also have a small infiltration to my right kidney ureter. I don't have much pain and still have pretty good energy considering everything. I was initially told I had 3 years left to live and I'm starting on my 8th year with the disease with a decent quality of life. I think doctors predictions of lifespan are uber conservative.

For me, it's a lot about lowering stress, eating better and keeping a positive attitude and outlook on life. Many people say I was in denial but for the past 7 years, I did what the doctors told me to, but continued on working and not thinking much about having Cancer or dying from it. I just kept on living ALMOST as if nothing was wrong. When the Cabazitaxel failed, I had the hammer drop in my mind and have been struggling with the thought of dying and having Cancer. I think I'm somewhat coming to terms with it, but it is a process. I know I don't have many years left now, but I have to make the best of what time I have left.

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Well said thx u for ur honest

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@foamhand

Usually the BSOC, (Best Standard Of Care) after initial radiation and hormone therapy is Chemotherapy. There are only 2 chemo drugs proven to delay the advancement of prostate Cancer. Docetaxel Chemo that can be a bit harsh. It worked for me for about a year. Then they go to Cabazitaxel after Docetaxel fails. Cabazitaxel only worked for me for 2-3 months. Now I am a candidate for the new Pluvicto radioactive injections. That's the last line drug known to work for awhile. None of these are a cure. They buy time.

I was diagnosed Gleason 9 in 2016 and I'm still here with bone metastasis and illiac lymph node metastasis. I also have a small infiltration to my right kidney ureter. I don't have much pain and still have pretty good energy considering everything. I was initially told I had 3 years left to live and I'm starting on my 8th year with the disease with a decent quality of life. I think doctors predictions of lifespan are uber conservative.

For me, it's a lot about lowering stress, eating better and keeping a positive attitude and outlook on life. Many people say I was in denial but for the past 7 years, I did what the doctors told me to, but continued on working and not thinking much about having Cancer or dying from it. I just kept on living ALMOST as if nothing was wrong. When the Cabazitaxel failed, I had the hammer drop in my mind and have been struggling with the thought of dying and having Cancer. I think I'm somewhat coming to terms with it, but it is a process. I know I don't have many years left now, but I have to make the best of what time I have left.

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Indeed. In 2016 doctors did not have the clinical experience in 2023. Also if you look at the trials, they have limited aims. They only need to prove the drug is better than no drug etc. So the cut off is PSA 0.5. Whereas you med team wants to take it down as low as possible, hopefully under 0.1, or 0.2. It seems the outcome is very different. So in 2016, you doctor may give his/her opinion based on what was known at the time. Happily, and hopefully, we know more now.
Thats my two cents. I am just another layman trying to make some sense out of all these.

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I am at the 8 year mark of Gleason 9,stage 3B initial diagnosis. I’ve had surgery,clinical trial after I failed that with drugs,salvage radiation 3 separate times since then with multiple rounds of Leuprolide. In April PSMA scan revealed diffuse metastasis with Neuroendocrine differentiation which is a more rare but fatal form of the disease. I just completed my 6th. and final round of Docetaxel and Carboplatin Friday. Am also on Leuprolide and Darolutamide. I was given 2-5 years. I will do a repeat scan in a couple weeks and then the decision on further treatment. Pluvicto and Lynzparza(might be mis spelled) is on the table. It is for a mutation found on genetic testing. I am 65 and just ran over 2 miles this morning 2 days after my chemotherapy. As previously mentioned be your own advocate and don’t be afraid to travel to get the care.

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