Prostate cancer: Any further options?

Posted by bluffitis @bluffitis, Dec 8, 2020

Diagnosed 2.5 years ago with Gleason 9 all 12 cores and PSA of 76

Treated at Mayo Jax – 6 rounds of taxotere chemo, PSA down to 0.75.

On quarterly Lupron and Zometa

PSA started increasing about 6 months later

14 months on Zytiga before it became ineffective

Used Xtandi for 6 months and it’s become ineffective

Guardant 360 and Foundationone genomic tests results show no gene mutations to support immunotherapy

Also tested for eligibilibility for one clinical trial and was found to be ineligible

PSA back to 71 today

Started jevtana chemo today. Oncologist says based on current available treatment options and trials, we don’t have any other options

Are we missing any available options?

My Gosh I feel bad for you! Research all you can and see if anything can be found in Asian medicine I would definitely try Marajuana oil – Rick Simpson Oil – Phoenix tears there is a specific protocol to follow for cancer. Is a last resort and worth a try. Lots of info on the internet

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Bluffitis: Sorry to hear of your trials. You are not alone. I stated 22 months ago with a PSA of 541, Gleason of 10s with one 9. Started on hormone therapy (bicalutamide and Lupron), then external beam radiation 44 doses. PSA dropped but then staryed to rise again back to 76. Discovered metastasis in spine and other bones. Went enzalutamide (Xtandi). For now my PSA has plateaued at about 6, give or take. I get tested every two months. Lupron shots are every six months. I fully expect the enzalutamide to stop working at some point and then I don't know what the next treatment will be.

I don't mean to minimize your situation, just to let you know you are not alone. Try to stay positive, listen to the doctors, and do research as best you are able. Good luck and God bless.

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@semeon

My Gosh I feel bad for you! Research all you can and see if anything can be found in Asian medicine I would definitely try Marajuana oil – Rick Simpson Oil – Phoenix tears there is a specific protocol to follow for cancer. Is a last resort and worth a try. Lots of info on the internet

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Thanks

So far I have been blessed with no pain

We’ll look at pain management when and if it becomes necessary

We have done an abundance of research but just wondered if we had overlooked something.

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@norske46

Bluffitis: Sorry to hear of your trials. You are not alone. I stated 22 months ago with a PSA of 541, Gleason of 10s with one 9. Started on hormone therapy (bicalutamide and Lupron), then external beam radiation 44 doses. PSA dropped but then staryed to rise again back to 76. Discovered metastasis in spine and other bones. Went enzalutamide (Xtandi). For now my PSA has plateaued at about 6, give or take. I get tested every two months. Lupron shots are every six months. I fully expect the enzalutamide to stop working at some point and then I don't know what the next treatment will be.

I don't mean to minimize your situation, just to let you know you are not alone. Try to stay positive, listen to the doctors, and do research as best you are able. Good luck and God bless.

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Thanks

I have found faith, family, and friends to be my sources of strength during these 2.5 years

I don’t know how someone can deal with all this and not gave hope in our Lord

You’re not minimizing anything. We all learn from each other’s journey

Are you on Zometa for the bone metastases as well as caltrate? I’ve been on those since the diagnosis to assist with bone integrity

We have a great oncology team at Mayo as well as Social Worker, Palliative care onc, urologist, and dietician.

We have done a lot of research and no other options but it doesn’t look like I’m eligible for any other course. Was just looking to see if anyone had experience with any other options at this point

Stay strong

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@bluffitis

Thanks

I have found faith, family, and friends to be my sources of strength during these 2.5 years

I don’t know how someone can deal with all this and not gave hope in our Lord

You’re not minimizing anything. We all learn from each other’s journey

Are you on Zometa for the bone metastases as well as caltrate? I’ve been on those since the diagnosis to assist with bone integrity

We have a great oncology team at Mayo as well as Social Worker, Palliative care onc, urologist, and dietician.

We have done a lot of research and no other options but it doesn’t look like I’m eligible for any other course. Was just looking to see if anyone had experience with any other options at this point

Stay strong

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I agree. Faith, family and friends are are immensely important. It's hard to stay positive without them.

Yes, I have zoledronic acid infusions every three months to help with bone strength. I am not taking any other additional calcium supplements at this time. My oncologist at the VA (he has worked with colleagues at Mayo Rochester on various clinical trials) thinks my calcium levels are okay with the quarterly infusions.

He has said I cannot look forward to being cured, but I hope to keep things under control. We have not discussed future options when the enzalutamide quits working.

Fortunately my side effects have been minimal. Loss of sexual functions has been the principal side effect. My wife is very understanding, disappointed but understanding and supportive. Hot flashes are tolerable but annoying.

Keep your spirits up–we may never be cured, but we have many years ahead of us. I was diagnosed at age 72, will be 74 later this month.

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I'm currently 73 years old and was diagnosed with prostate cancer in 2016. After reviewing my treatment options, and with my family physician's recommendation, I chose to go to UF Proton Therapy Institute, Jacksonville, FL. After two months of treatment my PSA dropped significantly. They monitor their patients for five years following treatment. My current PSA is 0.275. It has dropped every six months following the treatment. I'd recommend contacting them to determine if you are a good candidate for their treatment program. It is my understanding the MAYO Clinic, Jacksonville, FL is currently in the process of building a Proton Therapy facility.

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@roamingnole1972

I'm currently 73 years old and was diagnosed with prostate cancer in 2016. After reviewing my treatment options, and with my family physician's recommendation, I chose to go to UF Proton Therapy Institute, Jacksonville, FL. After two months of treatment my PSA dropped significantly. They monitor their patients for five years following treatment. My current PSA is 0.275. It has dropped every six months following the treatment. I'd recommend contacting them to determine if you are a good candidate for their treatment program. It is my understanding the MAYO Clinic, Jacksonville, FL is currently in the process of building a Proton Therapy facility.

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Thx. I’ll contact U of F.

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Dear Bluffitis, I hope your search for other options has been fruitful. I was diagnosed with Prostrate Cancer 2 years ago and fortunately it was discovered before it progressed too far. I had successful proton beam therapy and now my PSA is negligible. When I was diagnosed, I was able to get on a web subscription for articles about treating advanced prostrate cancer. I get weekly updates on the latest research on treatment of advanced prostrate cancer. Some are studies, and some are discussions with professionals. It is aimed at researchers and doctors, so it gets a little technical, but I think you can get the drift. Here is a link to two articles on the latest 2020 developments: https://www.practiceupdate.com/c/109345/67/11/?elsca1=emc_enews_weekinreview&elsca2=email&elsca3=practiceupdate_advancedprostatecancer&elsca4=advancedprostatecancer&elsca5=newsletter&rid=MzkwNTE0NzQ2MzI4S0&lid=20849592 and https://www.practiceupdate.com/c/110656/67/11/?elsca1=emc_enews_weekinreview&elsca2=email&elsca3=practiceupdate_advancedprostatecancer&elsca4=advancedprostatecancer&elsca5=newsletter&rid=MzkwNTE0NzQ2MzI4S0&lid=20849592. You can access all of their material at Elsevier Practice Update Advanced Prostrate Cancer. If you are looking for additional sources, this might be helpful.

Best to you in your search.

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@waynen

Dear Bluffitis, I hope your search for other options has been fruitful. I was diagnosed with Prostrate Cancer 2 years ago and fortunately it was discovered before it progressed too far. I had successful proton beam therapy and now my PSA is negligible. When I was diagnosed, I was able to get on a web subscription for articles about treating advanced prostrate cancer. I get weekly updates on the latest research on treatment of advanced prostrate cancer. Some are studies, and some are discussions with professionals. It is aimed at researchers and doctors, so it gets a little technical, but I think you can get the drift. Here is a link to two articles on the latest 2020 developments: https://www.practiceupdate.com/c/109345/67/11/?elsca1=emc_enews_weekinreview&elsca2=email&elsca3=practiceupdate_advancedprostatecancer&elsca4=advancedprostatecancer&elsca5=newsletter&rid=MzkwNTE0NzQ2MzI4S0&lid=20849592 and https://www.practiceupdate.com/c/110656/67/11/?elsca1=emc_enews_weekinreview&elsca2=email&elsca3=practiceupdate_advancedprostatecancer&elsca4=advancedprostatecancer&elsca5=newsletter&rid=MzkwNTE0NzQ2MzI4S0&lid=20849592. You can access all of their material at Elsevier Practice Update Advanced Prostrate Cancer. If you are looking for additional sources, this might be helpful.

Best to you in your search.

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Thanks so much for the info. I’ll check it out.

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Watch for the release of 177Lu-PSMA-617 expected in first quarter 2022. It may provide an additional treatment. My oncologist is watching it closely. My PSA has gone ftom 541 down to as low as 5.5 now it is back to 264.2. I have used bicalutamide, lupron every six months, radiation (44 doses), zoledronic acid (every three months), and enzalutamide. I am about to start radium 223 treatment.. l have not t used docetaxel but may in the future. We are watching 177Lu-PSMA-617 as a possible treatment in the future. You may want to talk to your doctor about it.

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