1. < Prostate Cancer

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.

stevecando54 | @stevecando54 | Jun 3 4:30am

when I first got diagnosed I googled info on this, the old info said 28% for five years. Well that is not good, I ended up on this site and read so much good info. When I first read this post I got very excited. Yes please keep posting updates, this gives us all so much hope. Best to all.

REPLY
melcanada | @melcanada | Jun 3 6:46am
In reply to @mccsjm "I see you have tried abiraterone. Based on what I've learnt, Lu177 (Pluvicto) may be promising..." + (show)
@mccsjm

I see you have tried abiraterone. Based on what I've learnt, Lu177 (Pluvicto) may be promising if all of your metastases show uptake on PSMA PET. Others include docetaxel or enzalutamide (or another 2nd generation antiandrogen). If feasible, consider getting a gene mutation test to guide future treatments. If you're not yet receiving care at a major cancer center, it might be time to consider that as treatment becomes more specialized after the first/second line therapies. Good luck!

Jump to this post

If only in bones look at Xofigio or Radium 223 enzalutamide stopped working after a year

REPLY
glt | @glt | Jun 3 8:07am
In reply to @doors4ever "Diagnosed with 4b last October. PIRADS 5, Gleason 6-9's and 3-7's. Age 69. My oncologist said..." + (show)
@doors4ever

Diagnosed with 4b last October. PIRADS 5, Gleason 6-9's and 3-7's. Age 69. My oncologist said no guarantees or promises, but usually he can get at least 10 years for someone in my situation. Cancer spread to 3 lymph nodes, pelvic bones and femur bones.
Started docataxel chemotherapy right away, along with Nubeqa and Eligard. After 6 chemo treatments PET scan showed two tiny spots of cancer remaining. Still taking Nubeqa and Eligard, probably for one year. PSA has gone from 40 to .06. I have an MRI and PET scan scheduled for June and my oncologist thinks the two remaining cancer spots may be gone. Fingers crossed. So, no surgery or radiation and I'm feeling good. Thanks to everyone in this group. The information is excellent.

Take care,
Steve

Jump to this post

Hey Steve. I also have 4 B that has spread to Pelvic region, Femurs, Lymph nodes, back etc. I have been looking for alternative treatments to docetaxel, but there does not seem to be alternative treatment. I made appt to go to MD Anderson in Houston but thinking there is no silver bullet.

REPLY
2 replies
rick137 | @rick137 | Jun 3 8:11am

@mccsjm

Congratulations. You have drawn a long short DNA straw, i.e. any man with PCa has drawn a short DNA straw since only 1 in 7 develop PCa but the combination of your DNA, course of treatment, diet and exercise have made it a long short straw.

May I ask what is your diet and exercise regime?

REPLY
1 reply
rick137 | @rick137 | Jun 3 8:13am

@mccsjm

And may I also ask how involved were you in deciding your course of treatment?

REPLY
doors4ever | @doors4ever | Jun 3 7:14pm
In reply to @glt "Hey Steve. I also have 4 B that has spread to Pelvic region, Femurs, Lymph nodes,..." + (show)
@glt

Hey Steve. I also have 4 B that has spread to Pelvic region, Femurs, Lymph nodes, back etc. I have been looking for alternative treatments to docetaxel, but there does not seem to be alternative treatment. I made appt to go to MD Anderson in Houston but thinking there is no silver bullet.

Jump to this post

I had excellent results with the docetaxel, Nubeqa and Eligard chemo treatment, no surgery or radiation. After the six docetaxel treatments I had only two tiny cancer spots remaining. Another PET scan and MRI scheduled for next Wednesday. My oncologist thinks the two remaining spots may be gone. If not he say's they can be easily removed with radiation. Worst side effect from docetaxel was feeling extremely bloated for many hours after eating very small portions of food. This was easily remedied by taking Prilosec OTC, a heartburn medication that can be purchased at any pharmacy, Walmart, Target & etc.

Best wishes,
Steve

Sent from Proton Mail Android

REPLY
stevecando54 | @stevecando54 | Jun 10 4:32pm
In reply to @doors4ever "Diagnosed with 4b last October. PIRADS 5, Gleason 6-9's and 3-7's. Age 69. My oncologist said..." + (show)
@doors4ever

Diagnosed with 4b last October. PIRADS 5, Gleason 6-9's and 3-7's. Age 69. My oncologist said no guarantees or promises, but usually he can get at least 10 years for someone in my situation. Cancer spread to 3 lymph nodes, pelvic bones and femur bones.
Started docataxel chemotherapy right away, along with Nubeqa and Eligard. After 6 chemo treatments PET scan showed two tiny spots of cancer remaining. Still taking Nubeqa and Eligard, probably for one year. PSA has gone from 40 to .06. I have an MRI and PET scan scheduled for June and my oncologist thinks the two remaining cancer spots may be gone. Fingers crossed. So, no surgery or radiation and I'm feeling good. Thanks to everyone in this group. The information is excellent.

Take care,
Steve

Jump to this post

I was reading this whole post again, wasn't totally sure on difference of 4a and 4b. I understand now, I have 4b, diagnosed march of 23. I want to say thank you for your post, mentioning it's possible of 10 years. I won't be googling stage 4b anymore, not very positive news, but your post lifted me up, thank you and all the best to you.

REPLY
1 reply
doors4ever | @doors4ever | Jun 10 4:43pm

Don't forget that a lot of the negative news is from older posts before some of the new drugs and radiation treatment as well as improved surgical techniques were available.

Take care and all the best.

REPLY
northoftheborder | @northoftheborder | Jun 11 1:52am
In reply to @stevecando54 "I was reading this whole post again, wasn't totally sure on difference of 4a and 4b...." + (show)
@stevecando54

I was reading this whole post again, wasn't totally sure on difference of 4a and 4b. I understand now, I have 4b, diagnosed march of 23. I want to say thank you for your post, mentioning it's possible of 10 years. I won't be googling stage 4b anymore, not very positive news, but your post lifted me up, thank you and all the best to you.

Jump to this post

Almost everything you read online about stage 4b prostate cancer is out of date now (assuming you're getting the latest treatments). I'm not trying to be a Pollyanna and pretend there's nothing to worry about — stage 4b is a tough ride — but prostate-cancer treatment has gone through a seismic shift in the past 5+ years. As an article in last month's Scientific American said

«These new strategies have begun to transform this once rapidly fatal disease into a chronic condition that people can live with for years or even for their full life expectancy.»

https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

So while there are no guarantees, it's no longer naïve to keep hoping. When I went to the Canadian Cancer Society's website to read about stage 4b when I was initially diagnosed in 2021, the advice was basically "Learn acceptance, put your affairs in order, and prepare to die" (in more-polite words), which was awful to read; fortunately, within a year my onco team was telling me a very different story.

Will I make old bones? Maybe not. But it's no longer a pipe dream.

REPLY
2 replies
stevecando54 | @stevecando54 | Jun 11 4:22am
In reply to @northoftheborder "Almost everything you read online about stage 4b prostate cancer is out of date now (assuming..." + (show)
@northoftheborder

Almost everything you read online about stage 4b prostate cancer is out of date now (assuming you're getting the latest treatments). I'm not trying to be a Pollyanna and pretend there's nothing to worry about — stage 4b is a tough ride — but prostate-cancer treatment has gone through a seismic shift in the past 5+ years. As an article in last month's Scientific American said

«These new strategies have begun to transform this once rapidly fatal disease into a chronic condition that people can live with for years or even for their full life expectancy.»

https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

So while there are no guarantees, it's no longer naïve to keep hoping. When I went to the Canadian Cancer Society's website to read about stage 4b when I was initially diagnosed in 2021, the advice was basically "Learn acceptance, put your affairs in order, and prepare to die" (in more-polite words), which was awful to read; fortunately, within a year my onco team was telling me a very different story.

Will I make old bones? Maybe not. But it's no longer a pipe dream.

Jump to this post

I try to stay away from reading the internet stuff, way better to be on here and read what others have to say about their experiences. Sometimes my foot falls into that hole, yesterday was a good way to finish the day reading good news on here. Woke up today and feel so much better, to all please keep posting good vibes. best to all.

REPLY
View MoreView Less
Please sign in or register to post a reply.