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.

Got diagnosed at 74.5 will be 76 next month

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Ringmastr1: I am not sure of the extent of your metastasis but if you fall into the category of oligometastatic where it is limited in extent, and the number of metastatic lesions is small, you may want to talk to an RO about the MRIdian machine from Viewray. It’s the only radiation machine in existence that combines MRI and radiation into one unit. Margins are 2 mm instead of 4 mm or more for other types of radiation. Toxicity is a big issue regarding side effects and quality of life. I had five treatments, though in my case, my cancer was confined to the prostate but it may be worth looking into. My brothers recent prostate cancer had metastasized and was treated with the machine at NY Presbyterian/Cornell Weill in NYC. They also gave him hormone therapy. Let me know if you need the RO dr’s name. Here is the link to locations of the MRIdian machine: https://viewray.com/mridian-treatment-centers/?_sfm_location=United%20States

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@dsingstock

I had Bracytherapy and 26 sessions of radiation 13 years ago. 18 months ago psa started rising and was 20.8 this past Nov. Since then have had 3 PSMA PET scans and a prostate biopsy. Prostste cancer recurred at stage 4 and metastasized on ribs 7 and 9. November I started daoly fose og Casodex. In January received shot of Eligard and meds changed to Xtandi. Psa taken end of Januarywas 0.4. Both meds have basically taken the winds out my sails and feel tired and am loosing weight. Been staying off sugars, taking Boost, Pedeolyte, Metamucil, and eating lots of Mandrin Oranges and veggies. Been keeping very active, as my other half has lost her short term memory and I am her caregiver . Plus do all the cooking, cleaning, laundry, finances, and you name it. We also have 3 cats and a dog. I am up every day at 7 and can't get to bed until 11. This is a 24/7 routine. Haven't had hot flashes yet, but fell like I am running on 6 of 8. Is all of this normal and should I be looking for more surprises. My next go around with the Oncologist/Urologist is in May. Would appreciate and comments, suggestions or advice. Many thanks.

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I’m in your basic position as far as the cancer and treatment. My was stage 4 when it was discovered in May 2022. I’ve been on Lupron and Erleada for about eight months. The fatigue was terrible for about six months but after that I feel relatively normal. Definitely not as much energy as pre treatment, but much better. I’m the daycare for my three year old grandson and I doubt I would be able to keep up with him anyway, being 68. Lupron is supposed to make you gain weight and Erleada is supposed to make you lose weight, but I honestly haven’t noticed any change in appetite or metabolism. It sounds like you are a bit overwhelmed, which I understand. One thing that has helped my anxiety is drinking green tea first thing in the morning. I still have my coffee and everything else but the green tea really evens out my stress. I hope this helps.

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@dsingstock

I had Bracytherapy and 26 sessions of radiation 13 years ago. 18 months ago psa started rising and was 20.8 this past Nov. Since then have had 3 PSMA PET scans and a prostate biopsy. Prostste cancer recurred at stage 4 and metastasized on ribs 7 and 9. November I started daoly fose og Casodex. In January received shot of Eligard and meds changed to Xtandi. Psa taken end of Januarywas 0.4. Both meds have basically taken the winds out my sails and feel tired and am loosing weight. Been staying off sugars, taking Boost, Pedeolyte, Metamucil, and eating lots of Mandrin Oranges and veggies. Been keeping very active, as my other half has lost her short term memory and I am her caregiver . Plus do all the cooking, cleaning, laundry, finances, and you name it. We also have 3 cats and a dog. I am up every day at 7 and can't get to bed until 11. This is a 24/7 routine. Haven't had hot flashes yet, but fell like I am running on 6 of 8. Is all of this normal and should I be looking for more surprises. My next go around with the Oncologist/Urologist is in May. Would appreciate and comments, suggestions or advice. Many thanks.

Jump to this post

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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@bens1

Ringmastr1: I am not sure of the extent of your metastasis but if you fall into the category of oligometastatic where it is limited in extent, and the number of metastatic lesions is small, you may want to talk to an RO about the MRIdian machine from Viewray. It’s the only radiation machine in existence that combines MRI and radiation into one unit. Margins are 2 mm instead of 4 mm or more for other types of radiation. Toxicity is a big issue regarding side effects and quality of life. I had five treatments, though in my case, my cancer was confined to the prostate but it may be worth looking into. My brothers recent prostate cancer had metastasized and was treated with the machine at NY Presbyterian/Cornell Weill in NYC. They also gave him hormone therapy. Let me know if you need the RO dr’s name. Here is the link to locations of the MRIdian machine: https://viewray.com/mridian-treatment-centers/?_sfm_location=United%20States

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This is wonderful info! Thank you. I'm meeting with the RO for the first time next Thursday and this will definitely be part of the discussion now.

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@dsingstock

I had Bracytherapy and 26 sessions of radiation 13 years ago. 18 months ago psa started rising and was 20.8 this past Nov. Since then have had 3 PSMA PET scans and a prostate biopsy. Prostste cancer recurred at stage 4 and metastasized on ribs 7 and 9. November I started daoly fose og Casodex. In January received shot of Eligard and meds changed to Xtandi. Psa taken end of Januarywas 0.4. Both meds have basically taken the winds out my sails and feel tired and am loosing weight. Been staying off sugars, taking Boost, Pedeolyte, Metamucil, and eating lots of Mandrin Oranges and veggies. Been keeping very active, as my other half has lost her short term memory and I am her caregiver . Plus do all the cooking, cleaning, laundry, finances, and you name it. We also have 3 cats and a dog. I am up every day at 7 and can't get to bed until 11. This is a 24/7 routine. Haven't had hot flashes yet, but fell like I am running on 6 of 8. Is all of this normal and should I be looking for more surprises. My next go around with the Oncologist/Urologist is in May. Would appreciate and comments, suggestions or advice. Many thanks.

Jump to this post

Xtandi is in conflict with grapefruit and certain oranges

They cancel it our ask

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@lorenbk

I’m in your basic position as far as the cancer and treatment. My was stage 4 when it was discovered in May 2022. I’ve been on Lupron and Erleada for about eight months. The fatigue was terrible for about six months but after that I feel relatively normal. Definitely not as much energy as pre treatment, but much better. I’m the daycare for my three year old grandson and I doubt I would be able to keep up with him anyway, being 68. Lupron is supposed to make you gain weight and Erleada is supposed to make you lose weight, but I honestly haven’t noticed any change in appetite or metabolism. It sounds like you are a bit overwhelmed, which I understand. One thing that has helped my anxiety is drinking green tea first thing in the morning. I still have my coffee and everything else but the green tea really evens out my stress. I hope this helps.

Jump to this post

Thank you for the advice. For years I have been drinking 1 cup of coffee in the morning and 1 cup of green tea with honey in the evening. My stress issue is being a caregiver for my other half which at times drives me crazy. Also the chief cook and bottle washer for everything else in running a household. No help from her kids. Finding it hard to rest during day. Starts at 7am and ends at 11pm. Plus caring for q dog and 3 cats. Dog is 16 and sleeps with us. He gets up every 2-3 hours and have to get up to put him back in bed. I am having my GP run a lab on me the end of March. If my psa is well below the last (0.4), I am going to see if the Doc will drop Eligard but continue Xtandi at the next intervals in July.

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@melcanada

Xtandi is in conflict with grapefruit and certain oranges

They cancel it our ask

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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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@dsingstock

Thank you for the advice. For years I have been drinking 1 cup of coffee in the morning and 1 cup of green tea with honey in the evening. My stress issue is being a caregiver for my other half which at times drives me crazy. Also the chief cook and bottle washer for everything else in running a household. No help from her kids. Finding it hard to rest during day. Starts at 7am and ends at 11pm. Plus caring for q dog and 3 cats. Dog is 16 and sleeps with us. He gets up every 2-3 hours and have to get up to put him back in bed. I am having my GP run a lab on me the end of March. If my psa is well below the last (0.4), I am going to see if the Doc will drop Eligard but continue Xtandi at the next intervals in July.

Jump to this post

It is definitely a challenge and a process. Best wishes. Loren

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@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.

Jump to this post

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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