Osteoblastic metastatic prostate cancer: Anything encouraging?

Posted by oldfords @oldfords, Apr 8 9:19am

Does anyone have any encouraging or good news form someone newly diagnosed with this problem? I could sure use anything that sounded encouraging.

thanks

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

You can find many people with this condition online, such as the Metastatic Prostate Cancer - Prostate Cancer Foundation (online group). In groups such as this one, you can communicate with people who have experienced various treatments and hear directly from them about their success stories. Many people in that group are being treated at Mayo Clinic by Dr. Kwon, amongst other leading Prostate Cancer specialists.

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Hi @oldfords, osteoblastic metastases develop when cancer cells invade the bone and cause too many bone cells to form. The bone becomes very dense (sclerotic). Osteoblastic metastases often happen when prostate cancer spreads to the bone.

I'm tagging other members like @robert570 @spino @phil89 @brianjarvis @wooldridgec and others in addition to @jsh327 who also have experience with bone metastases and can offer hope. Also see these related discussions:
- Treatment for Prostate Cancer Metastasized to Bones
https://connect.mayoclinic.org/discussion/treatment-for-prostate-cancer-metasized-into-bones/
- Rhodium-223 For Prostate Cancer https://connect.mayoclinic.org/discussion/rhodium-223-for-prostate-cancer

@oldfords, I understand your wanting to hear encouraging stories from others. Getting the news that cancer has spread to the bone is tough. Is this recent news for you? What treatment are you currently on?

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Thank you Colleen. Simply put. Metastatic Prostate Cancer (PC) stage 4 is not necessarily a death sentence anymore. That said, it depends on several factors with the individual. Are they healthy with few or no comorbidities. Do they have a mutation like BRC1 or BRC2 for example. What kind of PC was found Adenocarcinoma, Small cell, or Neuroendocrine. How high is the PSA upon diagnosis. How well an individual can handle treatment. Everyone is different. Some people cannot handle radiation or chemotherapy and it makes things more challenging. Age can affect whether you can even be offered chemotherapy. Neal Shore (South Carolina) says they have an embarrassment of riches (treatment options) for stage 4 PC patients. Many men that respond to treatment live a very long life with stage 4 PC. I have read on this web site men stating they have been living with stage 4 PC for 10, 11, 12, 13, and some 20 years. So, if you can do triplet therapy. If have PC in the bone and have pain request (no demand) radiation to the areas to relive pain. Palliative radiation to the spin (10 cycles) will shrink and kill PC cancer cells. Do chemotherapy if you can. If you can do it, request 10 cycles. Studies show that > 6, > 8, and >= 10 cycles improves Overall Survival. But it is difficult. Get on Nubeqa if possible. It is a miracle drug for Castrate Sensitive PC. Xdandi is now available for Castrate Sensitive PC patients. But all the studies show Nubeqa (Darolutamide) is far better than all the other treatments. It's science. Eat 70% plant based diet. Improved diet denies cancer cells fuel. Reduce sugar and sweet. You still need to feed your brain though. Exercise as much as you are able. There is a video exercise called "Sit and be fit". Very low impact but very helpful. Walk, lift weights (light weights). Try and keep on muscle. I do pushups against a counter top all day. Have faith. Stay positive (easier said then done sometimes - I know). Ignore the SEERS data? It is old. It is based on ADT results only. The doctor's still do not know the end results of triplet therapy. Again, the recent data from ARSENS which is now 5+ years old is very good. There is a lot of hope. I refuse to die of PC. Rather, I will live with it and die of something else as an old man. I refuse.

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@colleenyoung

Hi @oldfords, osteoblastic metastases develop when cancer cells invade the bone and cause too many bone cells to form. The bone becomes very dense (sclerotic). Osteoblastic metastases often happen when prostate cancer spreads to the bone.

I'm tagging other members like @robert570 @spino @phil89 @brianjarvis @wooldridgec and others in addition to @jsh327 who also have experience with bone metastases and can offer hope. Also see these related discussions:
- Treatment for Prostate Cancer Metastasized to Bones
https://connect.mayoclinic.org/discussion/treatment-for-prostate-cancer-metasized-into-bones/
- Rhodium-223 For Prostate Cancer https://connect.mayoclinic.org/discussion/rhodium-223-for-prostate-cancer

@oldfords, I understand your wanting to hear encouraging stories from others. Getting the news that cancer has spread to the bone is tough. Is this recent news for you? What treatment are you currently on?

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I am just staring a treatment of the triplet type. I will do Lupron, Nubeqa, and chemo.

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Thank you wooldridgec, I really needed to read some good news. When I first started researching this, it did not sound good for me.

thanks again al

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Mine is in the bone, I had 10 rounds of chemo, get firmagon and Xgeva monthly shots. Soon after starting the treatment that really bad pain I had in my leg stopped. Have been on prednisone since the beginning. Started Abiraterone last fall. Side effects can be rough, every once in a while I try to figure what med is causing what side effect. I'll never forget that initial pain I had, so what ever side effects beat me up sometimes, it can't compare to that pain. I wish you the best on your journey, people on here are AWESOME!

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I agree people here are great. I have got lots of good information and even some encouraging news about the treatment they have me on.

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@wooldridgec

Thank you Colleen. Simply put. Metastatic Prostate Cancer (PC) stage 4 is not necessarily a death sentence anymore. That said, it depends on several factors with the individual. Are they healthy with few or no comorbidities. Do they have a mutation like BRC1 or BRC2 for example. What kind of PC was found Adenocarcinoma, Small cell, or Neuroendocrine. How high is the PSA upon diagnosis. How well an individual can handle treatment. Everyone is different. Some people cannot handle radiation or chemotherapy and it makes things more challenging. Age can affect whether you can even be offered chemotherapy. Neal Shore (South Carolina) says they have an embarrassment of riches (treatment options) for stage 4 PC patients. Many men that respond to treatment live a very long life with stage 4 PC. I have read on this web site men stating they have been living with stage 4 PC for 10, 11, 12, 13, and some 20 years. So, if you can do triplet therapy. If have PC in the bone and have pain request (no demand) radiation to the areas to relive pain. Palliative radiation to the spin (10 cycles) will shrink and kill PC cancer cells. Do chemotherapy if you can. If you can do it, request 10 cycles. Studies show that > 6, > 8, and >= 10 cycles improves Overall Survival. But it is difficult. Get on Nubeqa if possible. It is a miracle drug for Castrate Sensitive PC. Xdandi is now available for Castrate Sensitive PC patients. But all the studies show Nubeqa (Darolutamide) is far better than all the other treatments. It's science. Eat 70% plant based diet. Improved diet denies cancer cells fuel. Reduce sugar and sweet. You still need to feed your brain though. Exercise as much as you are able. There is a video exercise called "Sit and be fit". Very low impact but very helpful. Walk, lift weights (light weights). Try and keep on muscle. I do pushups against a counter top all day. Have faith. Stay positive (easier said then done sometimes - I know). Ignore the SEERS data? It is old. It is based on ADT results only. The doctor's still do not know the end results of triplet therapy. Again, the recent data from ARSENS which is now 5+ years old is very good. There is a lot of hope. I refuse to die of PC. Rather, I will live with it and die of something else as an old man. I refuse.

Jump to this post

I just go the oncologist for my jevtana chemo treatments every 3 weeks and have left it up to him to worry about. Its been 10 years and I'm still here. I'm going on with my everyday life and pretending it's a chronic condition like diabetes and take my medicine for the rest of my life. I will die with it and not from it.

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@robert570

I just go the oncologist for my jevtana chemo treatments every 3 weeks and have left it up to him to worry about. Its been 10 years and I'm still here. I'm going on with my everyday life and pretending it's a chronic condition like diabetes and take my medicine for the rest of my life. I will die with it and not from it.

Jump to this post

encouraging news, thanks for sharing 10 year journey. I also leave it up to my oncologist to control it and I focus on dealing with the side effects from the various meds. I don't wake up thinking I have PC, I tell myself today is a good day. best to all.

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It is sure encouraging to hear that you can live a rather long life even in Stage 4.Side effects are tough to live with but with a little trial and error we can manage.There is no Stage 5.

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