1. < Prostate Cancer

Metastic prostate Cancer Survivors - longevity and quality of life

Posted by ringmastr1 @ringmastr1, Feb 26, 2023

I was just diagnosed at the beginning of January and of course the news hit me hard. I have found a lot of hope in the discussions within this group. I am curious to know how long ago people in this group were diagnosed with metastatic prostate cancer and what your quality of life is like. Right now I have no symptoms from the cancer itself other than weight loss (which I am actively monitoring and dealing with via extra eating) and I have no side effects from the medications the doctors are prescribing. I know that I am at the beginning of this journey and I hope that my current status stays the way it is for many years. We all need to have hope, and I am learning a lot about traditional and new Treatment options.

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

proftom2 | @proftom2 | Feb 28, 2023

I am 69 years old and 2.2 years into my cancer journey. Stage IV Prostate Cancer. I like the premise of this question, Longevity, and Quality of Life. If I had to grade myself I’d say; Mental Health B+, well-being A, Physical Health B, and Mindfulness A+. Relationships A-, Friendships B, Buddies A+, Nutrition B. All improvements from my pre-cancer life.

Overall my “Human Condition” GPA (Grade Point Average) is 3.6 which is the highest it's ever been in my life.

Right now I am dealing with being the best version of myself. I’ve never felt this way before. I go to bed feeling good about life and wake feeling about the same. A good indication my Wellness Program is working.

There is the elephant in the room which of course is my cancer. Well, I’m doing well with that too. How? I am learning to live with cancer. It’s an entirely new and different phase in my cancer journey. I’ve discovered learning to live with cancer (L2LwC) is transformational. So, I focus on living my best life now.

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ringmastr1 | @ringmastr1 | Feb 28, 2023
In reply to @dsingstock "No not using a nutritionist. Hard to prepare meals since I am the caregiver for my..." + (show)
@dsingstock

No not using a nutritionist. Hard to prepare meals since I am the caregiver for my other half and prepare meals for 2. Am hoping that if my psa is below the last (0.4) I can convince the Doc to drop the Eligard and only stay on the Xtandi for the next cycle. Good luck on your journey.

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Keep up the great work with preparing meals for 2, but add extra food for yourself. I have trail mix that's loaded with nuts and dried fruits that I keep handy in Tupperware in the house and in my car. That's better than the chips/snacks/cookies that most people grab. I add some chocolate chunks (from the baking aisle) to make it even better. Another go-to snack is a peanut butter and jelly sandwich. I also eat Kind bars, bananas, grapes for "better" snacks. I weigh myself every morning to make sure I am at my target weight. If I drop a pound or two, I know I need to eat extra that day.

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1 reply
dsingstock | @dsingstock | Feb 28, 2023
In reply to @ringmastr1 "Keep up the great work with preparing meals for 2, but add extra food for yourself...." + (show)
@ringmastr1

Keep up the great work with preparing meals for 2, but add extra food for yourself. I have trail mix that's loaded with nuts and dried fruits that I keep handy in Tupperware in the house and in my car. That's better than the chips/snacks/cookies that most people grab. I add some chocolate chunks (from the baking aisle) to make it even better. Another go-to snack is a peanut butter and jelly sandwich. I also eat Kind bars, bananas, grapes for "better" snacks. I weigh myself every morning to make sure I am at my target weight. If I drop a pound or two, I know I need to eat extra that day.

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Thanks for your comments. Breakfast is generally after some exercise and consists of a bottle of Boost, coffee, a Mandrin orange. Later maybe cold cereal, oatmeal or yogurt. Lunch is a PBJ or other light sandwich and orange with 16 oz of orange Metamucil. Sometimes sun chips. Sometimes no lunch. For evening meal could be chicken, fish, BBQ, Stauffer baked chicken dish or pizza. Drink is green tea with honey. No desserts as I swore off all sugars since last November. Sometimes I will make popcorn for an evening treat. Now for my other half I have added cookies, cake, pie, ice cream, etc. Try to add a Chef's salad from time to time. Also taking supplements plus hemp oil. Only big issues are rest and stress. Great communicating with you.

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1 reply
ringmastr1 | @ringmastr1 | Feb 28, 2023
In reply to @dsingstock "Thanks for your comments. Breakfast is generally after some exercise and consists of a bottle of..." + (show)
@dsingstock

Thanks for your comments. Breakfast is generally after some exercise and consists of a bottle of Boost, coffee, a Mandrin orange. Later maybe cold cereal, oatmeal or yogurt. Lunch is a PBJ or other light sandwich and orange with 16 oz of orange Metamucil. Sometimes sun chips. Sometimes no lunch. For evening meal could be chicken, fish, BBQ, Stauffer baked chicken dish or pizza. Drink is green tea with honey. No desserts as I swore off all sugars since last November. Sometimes I will make popcorn for an evening treat. Now for my other half I have added cookies, cake, pie, ice cream, etc. Try to add a Chef's salad from time to time. Also taking supplements plus hemp oil. Only big issues are rest and stress. Great communicating with you.

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More Protein will be better for you too. I'm pescatarian, so I've been getting my protein from eggs, cheese, tofu, beans. I'm trying to cut down on sugars myself, but I do enjoy desserts. I'm limiting my portions on those

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round5 | @round5 | Feb 28, 2023
In reply to @jap57 "The diagnosis is hard to hear but medicine has come a long way. I was diagnosed..." + (show)
@jap57

The diagnosis is hard to hear but medicine has come a long way. I was diagnosed over 8 years ago with stage 4 cancer. I am treated at Mayo Rochester and they always seem to have something new. I have had my prostate removed, 7 weeks of radiation, 5 weeks of radiation, SBRT 2 different times. I have been on Casodex then Lupron/Eligard since the beginning. I have taken Zytiga for over 2 years and when it quit working I started doing chemo treatments. After each treatment I live my life and hope for the best. This is my new normal but I don’t let cancer stop me. Everyone is given trials in life and this is mine. I don’t give up.

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Your situation sounds very similar to mine. 8 years of fighting this cancer. Anytime I go off treatment it comes back.
Early 2015:PSA 19. Gleason 9 with CT and bone scan clear. Radical Prostatectomy MD Anderson.
Early 2016 Biochemical reoccurrence and went into clinical trial at MD Anderson with Zytiga and Leuprolide for 8 months when CT and bone scan negative.
2017 off treatment with PSA slowly rising.
2018 PSA 3.5,scans still clear,crossed over to Leuprolide alone for 8 months(big mistake,I should have left that place)
Early 2019 off treatment with PSA again rising. Left MD Anderson for Mayo and first PET scan done(Choline) and received summer of salvage radiation with the ADT of course when cancer found in prostate bed.
2020 off treatment but as soon as testosterone started up so did the PSA.
2021 another summer of radiation and ADT when choline scan found some spots higher up. Then in
2022 testosterone did not recover well at all but when it barely did in January 2023 PSA up to 0.37 and choline scan showed spot on rib so received my 3rd. round of radiation to that area,one time dose. PSA 7 weeks later(today)
0.47 so I guess there’s still active cancer somewhere.
Anytime I have a testosterone level the PSA rises. The radiation treatments were a piece of cake but the drugs are knocking me on my ass despite my continued exercising. Back to Mayo in 6 weeks for my first PSMA scan.

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3 replies
melcanada | @melcanada | Mar 1, 2023
In reply to @dsingstock "Did not know thanks for the info. The oranges I eat are Mandrin. I was aware..." + (show)
@dsingstock

Did not know thanks for the info. The oranges I eat are Mandrin. I was aware that grapefruit is an issue. Anything else in the diet world which kicks the wind out of your sails?

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Pomegranate Grapefruit, and again those small oranges Its on the instruction sheet

These stop Xtandi from working I eat regular oranges only

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1 reply
melcanada | @melcanada | Mar 1, 2023
In reply to @ringmastr1 "You are pushing yourself the way I plan to push myself. Do you have a nutritionist..." + (show)
@ringmastr1

You are pushing yourself the way I plan to push myself. Do you have a nutritionist who can help you with eating the right stuff to maintain weight/strength? Your 13+ year journey is exactly the hope that I am looking for! Thanks for sharing.

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Pomegranates as well Read the labels on Xtandi

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dsingstock | @dsingstock | Mar 1, 2023
In reply to @melcanada "Pomegranate Grapefruit, and again those small oranges Its on the instruction sheet These stop Xtandi from..." + (show)
@melcanada

Pomegranate Grapefruit, and again those small oranges Its on the instruction sheet

These stop Xtandi from working I eat regular oranges only

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Thank you will check and tell VCU Cancet center.

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1 reply
dsingstock | @dsingstock | Mar 1, 2023
In reply to @round5 "Your situation sounds very similar to mine. 8 years of fighting this cancer. Anytime I go..." + (show)
@round5

Your situation sounds very similar to mine. 8 years of fighting this cancer. Anytime I go off treatment it comes back.
Early 2015:PSA 19. Gleason 9 with CT and bone scan clear. Radical Prostatectomy MD Anderson.
Early 2016 Biochemical reoccurrence and went into clinical trial at MD Anderson with Zytiga and Leuprolide for 8 months when CT and bone scan negative.
2017 off treatment with PSA slowly rising.
2018 PSA 3.5,scans still clear,crossed over to Leuprolide alone for 8 months(big mistake,I should have left that place)
Early 2019 off treatment with PSA again rising. Left MD Anderson for Mayo and first PET scan done(Choline) and received summer of salvage radiation with the ADT of course when cancer found in prostate bed.
2020 off treatment but as soon as testosterone started up so did the PSA.
2021 another summer of radiation and ADT when choline scan found some spots higher up. Then in
2022 testosterone did not recover well at all but when it barely did in January 2023 PSA up to 0.37 and choline scan showed spot on rib so received my 3rd. round of radiation to that area,one time dose. PSA 7 weeks later(today)
0.47 so I guess there’s still active cancer somewhere.
Anytime I have a testosterone level the PSA rises. The radiation treatments were a piece of cake but the drugs are knocking me on my ass despite my continued exercising. Back to Mayo in 6 weeks for my first PSMA scan.

Jump to this post

Had 3 PSMA PET scans all showed something compared to metastasized prostate cancer. Oncologist said that they (with me) were not particularly useful. The Urologist scheduled them. What the Oncologist liked were C T scans in the chest and abdomen areas. Provided more info.

REPLY
2 replies
round5 | @round5 | Mar 2, 2023
In reply to @dsingstock "Had 3 PSMA PET scans all showed something compared to metastasized prostate cancer. Oncologist said that..." + (show)
@dsingstock

Had 3 PSMA PET scans all showed something compared to metastasized prostate cancer. Oncologist said that they (with me) were not particularly useful. The Urologist scheduled them. What the Oncologist liked were C T scans in the chest and abdomen areas. Provided more info.

Jump to this post

Wow,that’s the first I’ve heard of any CT scan helping more than a PSMA PET scan.

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