My dad was recently diagnosed with 4b. PSA was 14. Nothing showed on the bone and CT scan but the PSMA scan showed several spots on one lymph node, his hip, pelvis, rib, sternum and arm bones. He is 69, turning 70 in a few months and has no symptoms. Pretty healthy guy overall.
He has just started Eligard, and I assume more will be added to his treatment plan once we get in with the Oncologist in a few weeks. (We live in Canada so it can take a while)
Since the majority of cases are on the more curable side, I found it hard to find a lot of stories of men with 4b and that is scary. If you or someone you know was diagnosed with 4b can you share their story, how long ago you were diagnosed and how long did hormone treatments work? (Please note I am looking for stories where there was distant spread, not a simple one or two mets) Would really appreciate your comments, thank you in advance. From a scared daughter.
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Winner! Gagnant! 🇨🇦😂 I have Stage IVb metastatic prostate cancer. High-volume. (Lymph nodes, bone metastases to hips, ribs, and three vertebrae. No mets to long bones or organs or skull. Before initial ADT and Dilaudid, crazy pain.) Original PSA at diagnosis 1700. No symptoms at diagnosis related to plumbing. In Canadan. On triplet therapy. Almost three years now so far living sort of normally, except for the fatigue. No pain or pain meds from six months after treatment started. Also no destructive radiation or surgery "because it was too late".
I will try to share some older notes with more info over next while.
(By the way, for Americans, my ironic/bitter/fun start for this post - "Winner! Gagnant!" - this is a Canadian reference to lotteries. If you go into a little variety store in many places, and someone else just cashed in a lottery ticket, the lottery ticket payment machine shouts in a happy loud voice that phrase! And because Canada is a bilingual French/English country you have it both ways. Life is fun! 🏆)
Very similar diagnosis (age 68 then) although my PSA at diagnosis never higher than 6.5. BRCA2 also. 3 yrs into the journey, triplet therapy at start (Eligard, Zytiga/ Docetaxel chemo) and my body responded very well. Got PSA within first year down to 0.01 Been on "drug holiday" since last January 2024 enrolled in a clinical trial that studies me. Upon diagnosis, you think you might be dead in a year or so...common brain pattern! Reality..unless your dad's body is an outlier that just doesn't respond to treatment (very few and far between), he's not going anywhere for quite awhile. While the side effects of treatment are no picnic, being alive and loving sure beats the alternative. Best to all of you.
LOL the "common brain pattern", which I think you are implying is the post-diagnosis doom pattern 😂. This business of the holiday, and being studied, is this something that one can read about?
I'm not aware of any updating by the researchers running the study. The goal of the trial (I think just under 80 men enrolled around the country) is to study all of us and possibly help eventually with some "standard of care" guidelines for physicians and patients considering taking a break from their ADT drugs. Currently, it's a bit like the "Hmong oral tradition" of passing down information to others. Someday, maybe guidelines will hit the NCCN site to help guide everyone. As you probably well know, there is major debate (by both oncologists and patients) as to whether Intermittent ADT (the fancy name for a holiday) should be attempted for an individual patient. On my end, it required a little "leap of faith" but I was ready to give it a try, and to not look back on that decision no matter the outcome. So far, so good, and my innards have already gotten a yearlong rest from the daily onslaught of those drugs. Take care John.
Good on you !! With the study, have you eliminated both ADT and the other Hormone therapy meds ? And do you know if the study is only for BRCA2 patients ?? Keep plugging !!
JohnInTheMiddle . It's no fun walking into that store and the Multi Million Winner in front of you , like my secretary , only buys tickets when the prize is over $ 10 milliion . And I'll bet , you like me , buy tickets everyweek and only win a "Free Ticket Occasionally " .
Hello! Was diagnosed stage 4B, Gleason 10 in Jan of 2024, bone Mets to base of skull, spine, pelvis, lower back, bilateral ribs, left shoulder, both femurs, multiple lymph nodes. Started ADT (Eligard) in Jan of 2024 and have done chemo, also on darolutamide. My PsA has been undetectable since April of 2024. Going for bone scans and ct scans next week to check on tumor/mets progression, hopefully they’ve shrunk a bit more. Also a fellow Canadian! Life is good, other than usual fatigue and general malaise on ADT all is well, so stay positive!!!
Our conditions very similar but you’re a little further along . I have my last of 6 scheduled chemos- docetaxal- this coming Thursday. I’m hoping for some good scans in March .
My prostate cancer in August 2023:"At baseline, the bone was pathologically covered with sclerotic foci throughout the body. Large lymph node masses parailiacally on both sides of the pelvis, right 55x52x91mm, left 91x41x93mm. Several rounded lymph nodes para-aortally, ad 15mm. Also pathological adenopathy around the rectum. "Had lot of pains,weight loss and fatique
Psa was 2500.
So I have agressive cancer.
Started Firmagon(adt) asap.
Then Docetaxel(chemo x 6) and after 3 injections started darolutamide. Thats called triplet therapy.
After first Firmagon shot pain was gone like a miracle.
In July 2024 psa was 0,4.
So I had 19(one/month)Firmagon shots .In this week chanced Firmagon to Orgovyx(hormone therapy) It is easier cause its oral(pills).
I feel great .No pains,weight is back. Life is c back.😊 Hope is back.Hope living many years with my wife.❤️At least now.....
😂 old school indeed. But GnRH agonists like Lupron or Eligard are still the de facto ADT prescriptions at the beginning of a PCa journey.
And if, because of risk of the testosterone flare, instead you get a GnRH antagonist at the beginning (almost always Firmagon / Degarelix), once things calm down, then you will be strongly advised to switch to the agonist.
Because of convenience. No other discussion or comparison. Because of the convenience. Great way to make a medical decision.
(Okay if we think of convenience as the burden of time and expense of so many visits, it's important. But none of this is really talked about. "Just go with the agonist.")
Of course the other reason to go away from Firmagon is the common incompetence of injection, leading to painful depot swelling and multi-day full body side effects including fever. This however is entirely due to nurses lacking the skill to do the injection properly. I have solved this problem by always using the same nurse. And the proof is that I don't have any injection-related problems anymore. And I don't have hot flashes either!
When I moved from hospitals outpatient clinic(oncology) to public health center there were almost each time(once a month) new nurse to give the Firmagon injection.Many times it was her/his first time to Firmagon injection.So I had to "teach" them how to give it/best way to inject. There were no problems in about 15 first injections. But then once it went wrong and I had bad reaction. I decided to change to much much easier way,Orgovyx. No reactions,no chills,no pain.No need to make an appointment once a month.....
Why not ask to change Firmagon to Orgovyx.It is GnHR antagonist like Firmagon is. Easy to take one pill/day at home.I changed to Orgovyx after 19 Firmagon injections.
I'm very enthusiastic about Orgovyx / Relugolix. However it needs to be emphasized the risks of not adhering to the pill ingestion schedule every day at the same time.
The drug is metabolized very quickly. And if for example you miss a day or two, you might see a testosterone spike. This is my understanding but it is documented.
And then consider the different ways that one might I have a problem and not having access to your pills. You go somewhere and are delayed getting home. You are detained somewhere against your will. You travel and your pills are confiscated. Etc etc.
Probably not a big risk, but it is something that is not a concern at all with a 30-day injection.
I always have important pills on reserve for several days when going to travel .Two/three different places .In my bag ,in my wallet and few with my wife.
Getting a Firmagon injection right is actually tricky and the best way to do it is for someone who is experienced to do it. It's not actually tricky if you follow the instructions carefully though!
There is lots of documentation around, and there are 20 steps. The mixing has to be done slowly so as to not to create a foam. And the most important thing is pinching the skin to get a nice bulge of fat and ensuring that the needle goes in at an exact angle and not near the muscle. This has to be exact.
There are some people here who instruct the nurse step by step. Not all nurses will tolerate that. I have seen one note where someone brings in an instruction card with them, with large format illustrations. And there are some men, oddly mostly from Australia it seems, who do it themselves.
In my case I have an institutional arrangement where I always have access to the same nurse, who is a specialist and injections. This took a while to set up. Now almost 3 years.
For the record, even with perfect injections, I still get a low-grade fever for 24 hours each time, and shivers, and I go to bed and put a lot of covers on. And my injection depot will be sore. This starts about 8 hours after the injection. And two days later I'm pretty good again. (I schedule my injection religiously every 28 days, with just a few times plus or minus one day.)
As I have explained elsewhere I have deliberately stayed with Firmagon: I have no hot flashes and the cardiovascular risk profile from Firmagon is better.
My husband is now 66. He was diagnosed in '22 with distant bone mets (both shoulders, arm, hip and femur) and has been on ADT and darolutamide for 30 months. His PSA and T became undetectable after 4 months of treatment and has remained. QoL has been poor but that may be partly due to other health concerns.
I am 85 1/2…. Diagnosed April, 2023, stage 4 with widespread bone mets (no symptoms). Lupron immediately, abiraterone soon after then 4 rounds of docetaxal. Switched to Nubeqa after only a month on Abi.
PSA presently 0.06 and repeated scan evidence of reduced mets. Ouality of life is good. Visit with oncologist yesterday was very uplifting and encouraging. I may actually have a few more miles left in me! 🥳
Diagnosed May 2020. Widespread to bones and lymph nodes, psa 1311. Lupron injections every 3 months and daily Enzalutamide. I've been lucky to respond so well for over 4 and a half years.
I'm in Victoria, British Columbia. 🇨🇦 Diagnosed Stage 4B 6.5 years ago at age 55. Life is good. I am receiving good health care. I expect to have a few more years yet to go. More information is in my profile.
In April this year 7 years since diagnosis as polymetastatic prostate cancer in my bones. Early docetaxel chemotherapy six cycles and monthly firmagon ADT injections. 2 years ago MRI linac SBRT radiation of my prostate. A year ago started bicalutamide in addition to the degarelix ADT injections. My last PSA was 2.3 and testosterone 1.3.
I have a similar condition-My name is Gino .I’m 60 years old .
I am still fully engaged with work and I run a few companies involved in the construction sector in the Greater Toronto Area. Depending on my prognosis post chemo I may consider stepping back as- if necessary I’m reasonably fit and enjoy activities like alpine skiing, golf, motorcycle racing , and travel.
I was diagnosed with stage 4 in the spring of 24 with spread into my bones including lesions on left femur, ribs , back of skull , and mid spine.
I’ve done prostate specific radiation and am currently doing 2 harmone treatments- Eligard and darolutamide and am just finishing 6 rounds of chemo docetaxal . I had scans done in December at my request that showed progression in the spinal cord and pelvic bones .
I will be doing pet scans again upon completion of the chemotherapy and hope for some regression or at least no further progression..
Good morning Gino. My husband just turned 80. However a very young 80, and has been fighting this beast since March 2017. He has been on Xtandi, Then 10 rounds of Chemo, targeting radiation, Radium 223, Abri. Monthly Xgeva injections and Eligard injections every 6 months. His PSA is climbing past 4 months and is now at 154. We as well live in Canada 🇨🇦. We are in Kawartha Lakes , Ontario. My husband's next treatment will be Pluvicto injections now government funded since December 2024. He will have 6 injections, one every 6 weeks. He is on the list now as we wait for the call from Princess Margaret Hospital. Thank goodness, it's funded because each injection is $27,000.00. All the best, from a very caring wife who wants nothing more than to have my hubby around for many more years to come.
👏👏👏 Thank Gawd our province is finally on board with the funding! My brother travels to Vancouver every 6 weeks for his infusions. VAC thankfully picked up the cost, by reimbursement. He pays his own travel expenses though. Hail Mary treatment, everything else has failed the last 3 yrs since diagnosed. w/multiple mets. so far, so good!No decline, holding his own. 🙏LUCKILY I am 5 yrs post RP and still clean. "Thank the Lord!." Always on gaurd.
Try to stay employed because you may live a good quality life for years to come.
When I was diagnosed I was assured that I will live most probably only 2 years and if I jump into docetaxel early upfront chemotherapy than maybe 3 years but I am still here.
Try to ask for MRI in order to see bone marrow involvement on the scans.
You could approach your oncologist with a clear, logical case for an MRI of the spine (or spine & pelvis) by emphasizing its clinical benefits while acknowledging their existing recommendations. Here’s a structured way to frame your discussion:
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1. Acknowledge Their Plan
"I understand that you're recommending a full-body CT scan and a nuclear medicine bone scan. I appreciate that these are standard for monitoring metastatic prostate cancer."
2. Explain Why MRI is Important for You
"However, since I’m specifically interested in detecting early bone marrow involvement, I believe an MRI of the spine and pelvis (or at least the spine) would provide better sensitivity than a bone scan or CT."
3. Provide Supporting Evidence
MRI detects marrow involvement earlier than bone scans and CT, before lesions become visible.
Spine and pelvis are the most common sites of bone metastases, making a targeted MRI a practical and efficient alternative to whole-body MRI.
PSMA PET-CT is excellent for detecting lesions, but MRI is better for early marrow changes that PET might miss.
4. Offer a Compromise
"I understand whole-body MRI may not be feasible, so I’d be happy with a spine MRI as a targeted, time-efficient alternative. If possible, including diffusion-weighted imaging (DWI) would improve sensitivity."
5. Address Hospital Concerns
"I know MRI slots are limited, but a spine MRI is much quicker than a full-body scan and would provide valuable information to guide my treatment."
---
Additional Approach (If Needed)
If your oncologist is hesitant, you can ask:
“Would adding a spine MRI change my treatment decisions if it detects early marrow involvement?”
“If I develop bone marrow progression, wouldn’t it be better to detect it earlier with MRI?”
This makes them think in terms of clinical benefit rather than just protocol.
Would you like me to tweak this for your specific situation or concerns?
Thanks Docker. Good luck with the Pluvicto - hopefully it goes where it’s needed and does what it’s supposed to do. I’ve investigated it as it may become a future treatment for me also. I’d be very interested to see how the treatments go and side effects are if your in the mood for sharing.
Six years on just Lupron. I had immunotherapy in September and just finished radiation to prostate and pelvis (six years later than most do). Still on just Lupron.
Curable is possible only when cancer is still contained. Once it becomes metastatic (spreads to other body parts), it's still treatable but not curable. But treatments can give him years of life. Be patient. Options will come with visit to oncologist. I'm coming up on 10 years. See my bio.
I started Lupron May 2022. Doc added Abiraterone and prednisone Sept 2023. I’m doing well with extremely mild side effects. I’m 74 and still hunt and fish which includes getting the deer out of the woods by myself and getting my 80 lb. canoe and 50 lb. battery to the lake and back. I do quite a bit of praying. God bless.
I meet your criteria. Diagnosed with 4b in August, 2023 with "extensive metastasis" in my leg, pelvis, sacrum, and lower spine with additional lesions scattered throughout my rib cage. I've been on ADT+darolutamide since early September 2023 and docetaxel infusions from October 2023 through February 2024. The hormone treatment was quickly effective and my PSA is still undetectable on the standard test, although it was never higher than your father's despite the very high "disease burden." I've been hit with most of the side effects of ADT but they are all under control with appropriate meds. I'd rather not be on ADT, obviously, but I can still live a reasonably normal life.
I was dx in 2014 stage 4 mets in lymph nodes and throughout my skeleton in most of the same places as your dad. I’m still on ADT although around 3 years ago my PSA started to tick up after being undetectable for about 6 years so some cells figured out a work around. I had 2 different ribs treated over the last couple of years with SBRT and PSA fell back to nearly undetectable. I threw the kitchen sink at it early on and continue to take Lupron, Xtandi and Dutasteride. Yes there are side effects but life is good. I searched out prostate cancer specialists who worked with my local MO and I feel that it made a big difference.
That and prayers, lots and lots of prayers.
You can read my profile to see the treatments I’ve had.
I will add my story to the rest. Also Canadian. Diagnosed with metastatic cancer in May, 2013. PSA was 1700. The cancer had spread to my bones from my neck to my knees. Lesions too numerous to count. was immediately put on an ADT drug (Zoladex). That lasted five years. When my PSA started rising they added an ARPI drug Xtandi (enzalutamide ). That gave me another five years, Then a year on another ARPI drug Zytiga (abiraterone). A total of eleven years. For the past year I have been on a clinical trial looking at the use of Lutetium-177 before chemotherapy. This May it will be twelve years for me. Turning 80 this year. Keep battling.
it will be 5 years this November for stage 4 with distant multiple abdominal mets and been on Erleada and Lupron all the time. Working full time, riding motorcycles, with some developed “chesticles” but otherwise alive and still loving life
Diagnosed in 7/22 with spread mets to abdominal cavity, hip, spine , and bone. Was told 2-3 mths w /o treatment 6 to 8 months with. Treated with triplet therapy. Went to MDA last visit was told 10 years or more if I stay active and eat right. Newer treatment regimens are certainly increasing life spans. So good like going forward.
Diagnosed Stage 4b in 2014 with "extensive bony metastases." PSA 60, doubled in a month. Started Lupron and Bicalutamide (Casodex), that lasted a year, then Xtandi, lasted 6 years. There was no triplet therapy back then. Since Xtandi stopped working I've had immunotherapy (Provenge), Docetaxel (had to stop after 4 due to side effects) and Pluvicto.
Still going strong, trying for actinium clinical trial (too heavy right now), PSA rising so doctors may start something soon, like another round of Pluvicto.
I was give 5, at most 10 years and am into my 11th and going strong.
Breathe. Do things with your dad that you both enjoy because now is the time to enjoy life and experiences together. Laugh. You'll both get through this.
4b here too, Canadian too, and was scared too. I had at least 13 lesions in all, including a distant one on my shoulder blade.
"Triplet Therapy" is so good now that in 6 months my PSA went from 104 to 0 and the tumours were gone on scans (yes, tumoUrs is how we spell it, eh). A year later I was back on the road working as a police officer, and a year after that I took a holiday from all the drugs. It's been 5 months since my last injection of Zoladex (similar to Lupron), and so far so good.
You never know how the cancer will react before treatment starts, but with the treatments out there now there's never been a better time to become a part of this club (that nobody wants to join).
Good luck to your Dad! Make sure he exercises and eats right so he can keep being healthy and strong (and counter ADT fatigue).
Hi SeaSlug. I live in Edmonton. Have had some of the worst "medicine" at the Cross Cancer Hospital. If your oncologist is with radiation, get a transfer to a medical onc ASAP. Your dad should be on at the minimum - duplet therapy. My out-of-touch radiation onc refused to put me on duplet or triplet therapy, so I transferred to a medical onc and I was put on abiraterone quite quickly. be careful with abiraterone, as it will deplete potassium (hypokalemia) and that was an aweful experience. The dry-mouth is unbelievable. Plus, there is constant peeing and fatigue/foggy-head. My resting heart rate stayed around 50bpm. I now take 600mg of potassium chloride every 2-days. This dose is unlikely to ever cause hyperkalemia.
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How long did ADT work for you? How long did Xtandi/Zytiga work?
Urgent help needed - dad diagnosed with stage 4 prostate cancer and he is a heart patient with diabetes 
Expectations after six cycles of Taxotere
Starting the journey Interested in comments Gleason 5+4 Met to Lymph and Maybe ribs
After 2 years and 8 month vacation PSA back up 0.3 what now?
