11 anniversaries since diagnosis of stage 4 prostate cancer

Posted by mccsjm @mccsjm, May 25 12:47am

Diagnosed at 63, I did not have the confidence at that time to believe I would live another 10 years. Yet, I just completed another follow-up visit in the past two weeks. My semiannual routine includes a blood draw for PSA and metabolic panel, followed by a visit to my oncologist's office. Given the many years of hormone therapy, they added a DEXA scan to check my bones.

Overall, they are happy with the results. PSA remains undetectable (might not be the most sensitive assay. My lipid levels remain elevated, so lipid-lowering medication may be inevitable in the near future, but it's not the end of the world. I hope my experience can encourage my fellow warriors. Living with prostate cancer is entirely achievable.

I also learned that the website for clinical trial matching that my oncologist pointed me to previously (inforeach.org) has added search for treatments recommended by clinical guidelines. It's quite intriguing as you can check if your treatment is consistent with the standard of care. Sharing this information for anyone who may want to check it out.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@lorenze76

I would so love to talk to you more. My dad is 75 and was just diagnosed with stage 4 metric prostate cancer and we need guidance , advice and help!

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My story: diagnosed feb. 2023 with what your dad has at age 73. Two pelvic nodes with cancer too - stage 4 Gleason 9. 28 trips for RADIATION therapy/ ADT PILLS/ injection every 3 months. Going on my 16 month of ADT. Doing fine, just tired a lot. Psa has been < .01. That’s my status, no need to panic. Todays meds. Are different than what they were just two years ago. Hope this helps ya.

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Great to hear you’re doing so well.

What was your Gleason score when you were diagnosed? That could be a big factor in how you have had such good results.

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@jeffmarc

Great to hear you’re doing so well.

What was your Gleason score when you were diagnosed? That could be a big factor in how you have had such good results.

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13 biopsies, Gleasons 8-10 on all. Feb2nd 2023, had stent put in to 95% plugged right coronary artery. Started 28 visits for radiation in March 2023 as well as ADT. Had two seizures. Had EEG. was negative. If it weren’t for the seizure I would have heart attack and died. GOD WORKS in strange ways. I stopped the robitussin I chugged at nighttime for sinus drainage, I started using CPAP. No more seizures. It was a challenging year. AGENT ORANGE caused the PC. Genetic test proved negative. My buddy on my ship also gas PC, too plus Parkinsis. Sorry to bore anyone reading this, but I m still here. I guess it’s not my time yet. Bruce

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@ecurb

13 biopsies, Gleasons 8-10 on all. Feb2nd 2023, had stent put in to 95% plugged right coronary artery. Started 28 visits for radiation in March 2023 as well as ADT. Had two seizures. Had EEG. was negative. If it weren’t for the seizure I would have heart attack and died. GOD WORKS in strange ways. I stopped the robitussin I chugged at nighttime for sinus drainage, I started using CPAP. No more seizures. It was a challenging year. AGENT ORANGE caused the PC. Genetic test proved negative. My buddy on my ship also gas PC, too plus Parkinsis. Sorry to bore anyone reading this, but I m still here. I guess it’s not my time yet. Bruce

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You are definitely beating the odds. When your Gleason ranges from eight through 10 you are considered a Gleason 10, which is really aggressive.

Did you change your diet and become a vegetarian or a vegan? That can do it for some people that have Gleason 10 and stage 4. Stopping eating red meat can help a lot too.

That agent orange is a real pain, I know a number of ex-military that had the same issue.

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@jeffmarc

You are definitely beating the odds. When your Gleason ranges from eight through 10 you are considered a Gleason 10, which is really aggressive.

Did you change your diet and become a vegetarian or a vegan? That can do it for some people that have Gleason 10 and stage 4. Stopping eating red meat can help a lot too.

That agent orange is a real pain, I know a number of ex-military that had the same issue.

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More veggies, no red meat whatsoever, more fruits, treadmill 3x/ week, light weights/ resistance exercises daily. Now taking American Ginseng for fatigue.

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@sixto

What Stage 4 do you have? Stage 4A is contained within the pelvic region. I was diagnosed with Stage 4B metathesis throughout my body to my lymph nodes in my upper body - chest, neck , thorax etc.
Diagnosed in August, 2023. My prognosis is 50% survival to 5 to 7 years after diagnosis.

Does anybody else have Stage 4B?

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Hello I was diagnosed with 4B a year ago Pet scan showed from shoulders down looked like a Christmas tree , Gleason 9 5+4 deathly allergic to Doxitaxal, I've been on Nubeqa and luperon just pulled off them my psa stays at less than 0.1 so the Doc says I'm on a break? I haven't been given any time to look forward too.

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Are you taking Lupron injections as well as Abiraterone?

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@sicernon3

Are you taking Lupron injections as well as Abiraterone?

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They are taking Nubeqa (Darolutamide) which has lower side effects and other lutamides and strains the heart less. Abiraterone may have been too much.

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@rwj613

Hello I was diagnosed with 4B a year ago Pet scan showed from shoulders down looked like a Christmas tree , Gleason 9 5+4 deathly allergic to Doxitaxal, I've been on Nubeqa and luperon just pulled off them my psa stays at less than 0.1 so the Doc says I'm on a break? I haven't been given any time to look forward too.

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You should ask your doctor about Pluvicto, while they do require chemotherapy before doing it, you can have that Christmas tree reduced dramatically if it works for you. Some people have been able to get it without chemotherapy.

I have seen before and after PSMA pet scans that showed a dramatic difference after Pluvicto, but it doesn’t work for everyone.

Since the drugs, you are on show that you are undetectable (less than .1) you can wait until your PSA starts to rise.

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Great to hear your long term survival with PC.

I am 14 years in, 15 in January. Lots of minor issues but the drugs available have enabled me to live a pain and symptom free life.

I was diagnosed with prostate cancer in 2010 at 62. Gleason 3+4 after biopsy I had a prostatectomy and my Gleason was changed to 4+3, but my PSA stayed undetectable for 3 1/2 years, then came back. I had radiation to the prostate bed and for 2 1/2 years my PSA stayed undetectable, but then it came back. I started Lupron in 2017 and my PSA stayed undetectable for two years, but then it came back. My oncologist added Casodex, but 14 months later, my PSA started rising too much. I then started Zytiga and took it for 2 1/2 years. It worked pretty well but then I had a 3rd more serious afib event and my oncologist pulled me off it. I then started Nubeqa and my PSA has now been undetectable for nine months. I found out in 2022 that I have the genetic anomaly BRCA2, which explains why my cancer keeps coming back.

I did have 3 sessions of SBRT on a metastasis on the L4 in my spine last year. Seems to have worked. Also had knee and hip replaced within the last year. The knee recovery was hard since 7 years of Lupron really deteriorated my muscles. Took a lot of PT to walk without a limp.

When Nubeqa stops work I can move to a PARP inhibitor, which hopefully will give me another couple of years. Then on to chemotherapy and after that Pluvicto, which is supposed to work a little better with BRCA2 people. It’s a long term battle.

My father died of prostate cancer and my brother has it, neither of them was BRCA2. I got that from my mother who had no problems at all and lived to 87. Her sister and her daughter, my cousin, both died of breast cancer. My mother‘s other sister also had breast cancer, but survived it. My grandfather died of pancreatic cancer at 46, pretty clear that was where it came from. No one else in my family, including cousins, has BRCA2 fortunately.

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