How long have you live with metastatic(bones,lymf nodes..)prostate cancer?

[petrig]

How long have you live with metastatic pca and with what medication you have managed?

[mrscruffy]

61 years old. 9 years in June. Lupron, Abiraterone and Lynparza

[pjd55d]

diagnosed 8 years ago

Lupron ( Provenge 7 yrs ago )

switched to Eligard because of availability

many of the usual side effects - pretty much dealing with them though they can be nasty but I put up with it - because the ATD works for me

just shoveled snow

travel a lot

going to Machu Picchu in Mar

one foot in front of the other

try hard not to be a cancer victim - living life with cancer

sometimes I get tired of pushing forward - but then I push and am glad I did

Best

[Fuzzman77 in reply to pjd55d]

Enjoy Machu Picchu. Been there three times, first was over 21 years ago. It has certainly grown as you can tell by how many are selling stuff at the bottom. There were only five when I was there first time. Very magical place. Found a large ax head in Manu last time. Great place and lots of people going there from Cusco. Great jungle. Lots of butterflies if you go at the right time. In around September. And you can see the national bird there. Very orange, but you have to get up early. And if you like parrots there were literally 400 one morning. Now I want to go again!

[pjd55d]

that was supposed to be ADT not ATD

[VictoryPC]

Guy I know have lived over 10 years doing the right protocols. Many have reversed them as well.

[IKNY]

I’m a newb, my odyssey began in 2023, 1yr, 6 months. RALP, ADT Lupron/Nubeqa*, Radiation.

Gleason 9(4+5), stage 4A, Mets to several pelvic lymph and one para-aortic node.

Looking forward to many more years… so far, it’s been bearable.

* Switch to Nubeqa due to Abiraterone/liver issues.

[KocoPr]

diagnosed at 54 gleason 6. 12 years this May. RP, RT, Lupron, Orgovyx, Darolutamide, BAT.

Lymph and now bone

[patandemma]

DX 10+ yrs ago with mets x3 to thoracic spine and to 1 rib. Drugs Lupron,Docetaxel and denosumab. Proton beam therapy to prostate,bone mets and prophylactically to lymph nodes along iliac arteries. PSA 3months ago undetectable and MRI iyr ago no new mets seen

[speranza10 in reply to patandemma]

Can I know your Gleason score?

[speranza10 in reply to patandemma]

Sorry being metastatic at diagnosis, I guess you don't know your gleason score

[Gearhead]

6 years since DX with cervical spine met and PSA = 111. Lupron and abiraterone.

[j-o-h-n]

2002 - 2025. The meds that work.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mgtd in reply to j-o-h-n]

That may be in the top 10.

[gsun]

Dx in 2018. Mets to bones. Gleason 9. Lupron, abi and pred. PSA started to rise so am plotting the new treatment.

[petrig in reply to gsun]

Darolutamide (Nubeqa) if you can and maybe change Lupron to Orgovyx .

[Jeremiad53]

It will be 8 years in Feb 2025. I am on abiraterone, 250 mg with 5mg predisone for about a year now. This is in my third year of using zytiga/abiraterone. I have mets to bones for the entire time, none to the lymph nodes so far. Life is fairly normal except for bone pain of course. My PSA has been unmeasurable for 2 years plus now.

[Seasid in reply to Jeremiad53]

Which scans did you have in order to determine your bone metastasis? Did you have a PSMA pet scan?

[Jeremiad53 in reply to Seasid]

Yes, I have had three of them. The last was a year ago in December, there was no sign of cancer on them, but they wouldn't go so far as to pronounce me NED... No Evidence of Disease..... Keep the sugars way down, eat a KETO diet, and supplement the correct vitamins and minerals helps IMO. Thanks be to Jesus, and prayer helps too.

[Seasid in reply to Jeremiad53]

What I don't understand fully is if you are Ned but with bone pain could it maybe mean that your pain is not cancer related?

Did you ever had a PSMA pet scan which produced a finding?

At the start of my diagnosis I wanted to have a PSMA pet scan in order to exclude the possibility that the nuclear medicine bone scan is not a fauls positive metastasis? Yes I had a rapidly rising PSA and yes I had s sciatica pain but I still wanted to have 4 PSMA pet scans at the start to be 100% that I really have visible PC Mets.

Even the almighty PSMA pet scan could make mistakes. Therefore in short maybe you don't have a metastatic prostate cancer? Is it possible? Maybe only in your prostate?

[Scottybear]

6 yrs post treatment next month. 1 yr of ADT (Loopy and Zytiga) and External Radiation. Gleason 9 and one rib met. PSA bobbles around .30 to .60

I just dont get why people stay on ADT for years and years after treatment. Every BODY is different and reacts different. For me...the entire process has been a "cake walk".

Fight the good fight!

[Jeremiad53 in reply to Scottybear]

I wouldn't say a cakewalk, but the only times I struggled was during Chemo... tired like hell....and not being able to clean my bum, or wash my back for about a year.... Metastasic to my Rt Shoulder joint... But that has been better for a few years now. Every year has been improvement, except for my hips and back..... 8 years with no testosterone is a killer on the skeleton. I can still ride my bicycle for 5 miles without fatigue, and work 6 hours a day.

[MS30000]

cancer découvert en mars 2019 gleason 5=4 chimio, hormono . 2 récidives et maintenant, lynparza depuis 28 mois.... effets secondaires mais en vie !!!

[petrig in reply to MS30000]

L'espoir fait vivre

[Lslal]

since Feb 2022

[spouse21]

My husband has lived with high-risk GL 9 PCa in all cores for 12 years, and is now 80. He was probably metastatic in 2014 but couldn't get an MRI due to a pacemaker and there were no PMSA Pet scans then that would have identified mets. He had 9 weeks of radiation, 3 years of Lupron/Eligard from 2014-2017, back on Lupron/Eligard + Xgeva in 2018, 6 months Zytiga (failed), 10 Docetaxel infusions, 5 years post chemo with just Lupron/Xgeva and decent, pain-free QL. He just wrapped up 6 more Docetaxel infusions.

So it's been heavy duty stuff pretty much throughout but with a fairly decent quality of life--travelling, big time biking, walking except during the most challenging parts of treatment. He's taking a break right now because he's pretty knackered from the latest chemo though just did come in from a 5-mile walk in freezing temps.

[petrig in reply to spouse21]

He is lucky to have you and your love. All the good for both of you.

“Love has nothing to do with what you are expecting to get—only with what you are expecting to give—which is everything.” —Katharine Hepburn

[spouse21 in reply to petrig]

Thanks, Petrig. I'm not sure if I read 12 years ago what I just wrote here, I would've been encouraged or discouraged. The first months after diagnosis were both numbing and frenzied. We raced around like chickens to all the big cancer centers. These were the days before telemedicine when you had to get CDs and make all kinds of arrangements. Tough period. Plus we just wanted to rewind the clock and have things "be the same." Life doesn't work that way. It took awhile to get to a new normal, which is what we had to do.

I would add that bad news later in the last 12 years was easier to take than the early bad news or the mid bad-news a few years after radiation and ADT stopped working around year four. By the time Zytiga stopped working, it was: "Oh well, what's next?" This board has been beyond helpful on giving solid advice and encouragement. I'll add that MrSpouse21 has been a demon exerciser throughout so we was in good shape for cancer treatments. After they were over, we did go out and play . . . a lot! Even so, the kind of diagnosis all of you have means there's are clouds overhead at all times. But it's not always hurricane weather.