My dad was recently diagnosed with stage 4 advanced metastatic cancer that’s spread to his bones, Gleason 4+5. He was in good health prior to this and came as a shock to us all, he’s 65. Unfortunately his doctor never checked his PSA and when my dad complained about urination during the night he then checked it and PSA was over 200. He’s currently on biclutamide tablets and just had his first Zoladex injection. The prognosis that the medical oncologist gave was 4-5 years. I’ve read some encouraging stories but it’s hard to have positive thoughts that he’ll be one of the lucky ones. Please share any stories and any recommendations on treatment, we are able to travel anywhere to get best possible treatment for him (currently treatment is at BC cancer centre in Canada)
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Jdhanoa
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Can you give me more inflection regarding triplet therapy? His MO has him on Xoladex injection and he will be starting Erleada. When would you recommend chemo?
That's a scary statement, "won't work at all". Why is that? I'm curious because my diagnosis was very similar. Advanced Prostate Cancer with bone, lung, and lymph node mets, and I've only had Eligard, Zytiga, Prednisone and Xgeva.....following initial Casodex (to prevent tumor flare from 1st Eligard injection). I've been 46 months on these drugs and at times feel as though I'm living on borrowed time. MO has mentioned Xtandi when current treatment fails. Thanks T A
That's because Erleada will drive his cancer cells into senescence. Senescence is a protective dormant state in which drugs won't kill it. What's worse, senescent cancer cells cause nearby healthy cells to become cancerous. Chemo won't work until those cells emerge from senescence and start to rapidly divide again. Chemo only works on rapidly dividing cells.
Hi tall_allen his MO recommended chemo at a later date when needed, is there a reason why you recommending early chemo? In my research I didn’t find anything regarding how early to start chemo just that triple therapy seemed to help
I was given the same dx over 9 years ago. You can read my profile to see what I’ve done regarding treatment. Get with a good oncologist who specializes in prostate cancer not just a general oncologist and not a urologist. Hit it aggressively early on and don’t forget the power of prayer.
Agree with Tall_Allen and EdBar. Most stats are from the years before current therapies. I was told my husband had 12-18 months at diagnosis. Almost 6 years ago. He was 49, mets to bones, psa over 677. Gleason 9. Check my bio for what his treatment has been. He'd do triplet therapy now- wasn't a thing 6 years ago.
”Most stats are from the tears before current therapies.”
Are they? The current death rates aren’t factored in at all?
Either way, your husband has made it six years you say. If the stats say that the average survival rate beyond five years is only 30%, that means 30% of people going into the stats live six or more years.
Your husband could just be part of what makes the average, and not proof that the average is not correct.
The stats don't include the treatment regime my husband used. They can't give stats on survival past the length the newer treatments have been in existence.
Of course they can be included in stats that are phrased like most in this type of discussion (Average 5 year survival rate is 30%).
The guys on the new treatments are still in the pool of patients contributing to the stats, and they’re not dead yet, so they help keep that number at 30% or nudge it up slightly. We’re not talking about how long you’re going to live after five years were talking about if you’re going to even get there.
Also people die on the newer treatments, and the longevity from them is often not that much.
Arasens only showed decreased risk of death in 32% of patients on NUBEQA based triple therapy.
And don’t quote me, but the time added to survival with many is often just something like 18-36 months. That might drive the average up a bit but not much.
So if the 3 year survival rate is 50% and only 32% get any life extension of 18-36 months, that’s not going to drastically move the number.
Your husband has had prostate cancer for six years, correct?
Congrats, he’s already a positive contributor to the 5 year survival percentage.
It doesn’t matter what new treatments he’s on, whether it works or not it won’t change the 5 year number, but maybe the 10 year number…
Check my math and correct me if needed because I’m just spitballing simple numbers into what’s likely a less than simple equation, but his survival has moved that number from 30.000% to a whopping 30.00003%. Who wouldn’t bet the house in this odds improvement?
Even add in the 20 or so guys who jump into these discussions saying I was diagnosed 6 years ago and the percentage still only moves to 30.006%.
Anything that’s fda approved SOC will have trial results suggesting the impact on longevity anything in trials is meaningless because there’s no proof they work yet and how well
My example about my husband was an example. When they told him 12-18 months prognosis almost 6 years ago, he started a treatment regiment that had not been around for even a year. So, on that regiment, they had no prognosis numbers. They were basing their 12-18 months prognosis on men who had his diagnosis prior to this new regiment. They didn't know yet what the 5 year survival rate was for that regiment. I'm not going to reply again, as I feel I'm over explaining at this point. But wanted to try one more time. Cheers to you as well.
GI448, can you please delete your posts on this particular discussion? I am reading the positive stories that people have written on this post daily to keep my spirits up and reading the comments you have posted has brought me sadness, i wanted this post to be only positive
Hello, GI448, I want this discussion to be positive and would appreciate only positive posts for this specific forum as I want this to be encouraging conversation for my family to see.
Similar diagnosis to me when I was diagnosed last year at 52. I did triplet therapy as Allen suggested. I also got radiation to prostate, pelvic lymph nodes and my bone met about six weeks after finishing my last chemo session
Starting on the Zoladex now will give him time to explore options. (Optimal timing to start chemo is about six weeks after starting ADT anyway. )
Make sure he is being seen by a medical oncologist who specializes in prostate cancer as well as a radiation oncologist.
Helpless and hopeless are pretty common feelings for early on. So many treatments are available and new ones are on the horizon. Read and find a good oncologist and hold on-it can be a wild roller coaster! If you keep reading this site, you’ll discover there’s la lot to be hopeful about. DH is coming up on 10 years of treatment next month. I found both help and hope right here.
Dear Jdhanoa - my heart goes out to you. Your dad is lucky to have your love & support. I was diagnosed in March 20 - psa 680 Gleason 4+4 extensive bone mets (more info in my bio). There is no way to explain the impact of such a terminal diagnosis on you and your loved ones. I was given 3-5years. I’m still here 3 years later - my psa is undetectable & my latest CT scan showed no significant disease. Life has changed but I still have a quality of life I’m content with. Fingers crossed your dad reacts well to the treatment.
Just keep talking with him, love him and ask about his feelings. It’s complicated processing that diagnosis and sorting out one’s priorities in life as well as navigating optimal treatment. Many men bottle it up and close down from others. That’s why we have so many wonderful daughters, wives and sisters on this site where you are most welcome.
I had pattern 5 noted at the margins of my EPE so I went looking for a study that was predictive of pattern 5 and found this...if the worst case there is a 67% survival from PCSM, 10 years from surgery, so the picture is not as bleak as it would appear...the 'p' factor (the chance that this outcome is wrong) is 0.4%!
The study also talks about the use of Dechipher testing and its importance...I have stressed in these posts why I think its so critical...take a look at my posts; there are several that talk about this test. If your Dad has not had it done you can still do the test as the hospital keeps biopsy specimens on file for years...get one if you dont have one. GS is the type of cancer and Decipher will tell you how lethan the cell type is...you can have a GS of 4+5 and yet have a less lethal grade of cancer...
Last, look at some other predictors for GS 4+5 that are noted...hope this helps. Trust that many predictors of survival, as your Dr stated, are based on you being a 'deer in the headlights;' doing nothing! Once you start to push back on this thing the algorithims change...dont ever, ever, ever give up...AND always get 2d, 3d, 4th opinions before you act! Rick
thank you everyone, regarding triple therapy. His MO said he could do chemo however he recommended not to right now, he said it wouldn’t make a difference if he does it right now or later down the road. Therefore I am a bit confused. He has his first appointment with a radiation oncologist next week for EBRT.
Can someone give me more information how they and when they started their triplet therapy?
Is his MO a general cancer doctor, or a Prostate Cancer specialist? Get a new prostate specialist if the current doc isn’t one!!!!!
My first MO wouldn’t give me triplet therapy, wanted to save it for later.
I switched to one of the top prostate cancer specialists and she immediately said triplet was my best option. 5 sessions under my belt, and while it’s not a fun picnic, it’s not been too bad. We started 4.5 months after diagnosis of ductal type stage 4B. Would have stated earlier with the right doctor
I’m 60, but your dad isn’t much older…we’re still young and strong and can tolerate the chemo better than if we get older. Also, my belief is hit the cancer with everything you can out of the gate. Knock that crap down hard quickly and keep punching at it for your best chance to pass the five year mark.
thank you his MO is a general cancer doctor. His plan is zoladex and then start on erleada. We are looking at getting second opinions (including going to the states to access top quality care, Mayo, MD, etc). However, that likely won’t happen until summer time, I’m not sure how important the timing is in everything, he was diagnosed last month
I believe chemo works best on rapidly dividing cells, so triplet therapy is better sooner than later. Early summer would put him on the same time frame as me, but I was worried 4 months of ADT might have been an issue in terms of best results from the chemo.
Although there hasn't been a clinical trial directly comparing triplet therapy with doublet therapy, evidence suggests that doublet therapy of ADT (e.g. Zoladex or Lupron) plus an ARI (e.g. Apalutamide or Enzalutamide) gives almost the same average progression free and overall survival rates as triplet. The ENZAMET trial was the closest to comparing the two (see graphs near the end of the article comparing Enzalutamide with Enza plus Docetaxel):
Lots of great “I beat the 5 years,” or whatever prognosis stories on this site.
Good for those guys, let’s hope we’re all that way, but keep in mind there is a definite bias or leaning in this group towards only seeing posts from people who have made it past five years because all the guys who didn’t have passed away and aren’t here to post offsets along the lines of “I only made it 3 years.”
Many guys just disappear from posting, who knows what happened? Sometimes a family member comes in and drops the bad news.
I’m not trying to scare you or bring you down, just warning that everyone is different, everyone’s cancer is different, everyone responds differently to different treatments, and it’s too early in his case to rest assured of the results.
Spend the best time you can with him going forward Being aware, but not depressed.
New treatments on the horizon might really change the numbers for all of us. 🤞🏼
Don't give up at the start of the race (or whatever you want to call it). Your doctor was wrong to not test his PSA but in my case, the PSA was never much above 3 and I still have stage 4. Get the best advice you can, get an excellent medical oncologist, and if that person doesn't listen, doesn't answer questions ... find another one.
There are many excellent, effective treatments and you might have to cycle through a few before you find one that works.
Information defeats fear every time. Best of luck.
3 to 5 years is the standard prognosis. Some men die sooner, some men live a lot longer. Look around on this thread and you'll find men that report to living 20+ years with advanced prostate cancer.
Great advice above..........Just to give you MORE hope............ I was diagnosed in 2002 and fighting it for 20 years......... If I can do it so can your dear DAD......( Started 66 years old to now 86 years old).....Laugh as much as you can....
j-o-h-n <===<<< Senior management is about to spike my spikes....
Had a similar situation with my diagnosis in 2014. Told 5 good years, maybe 10 at the outside -- and that was by a research oncologist at a major US cancer center. Until last year everything was going well, since then, not so much. But I am still very functional, in little pain from cancer and will hit the 10 year mark in '24. No reason that I won't be here and if triplet therapy had been a thing back then I might be in even better shape.
Breathe, get therapy and relax. Things will take time. Years and years. Get an oncologist who specializes in or has a lot of experience treating Prostate Cancer; read up on everything here as I have found this to be the very best resource for information I have found.
Chemotherapy with Hormone Therapy is the route that I went in 2004. There is something to be gained by adding another drug as Allen suggests. It is the latest combination as a first line therapy for metastatic disease.
Check with the specialst. Some men require vitamins to help, it depends on your dad's over all health. Naturally a healthy diet will help. Don't waste money on animal parasite treatment! Dont believe off the wall miracle claims you read about, if those worked everybody would use them and be cured. As you see by other posts there are many treatments and success stories. Every case is different and many treatment options are available now. I know it's scary, but your dad has options. Good luck!
Hi i was originally diagonosed with G4+4and PSA of 390 out of the prostate into the lungs and bones.A little bit lucky in Australia where i went through the public system saw
Hi I was originally diagnosed with G4+4 with PSA of 390 which had got out of the prostate into the blood stream into lungs and bones ,The short story is i went on firmagon straight away and about 6 weeks later chemo reduced PSA down to 0.08 I had my second big PSMA Scan and other types about 6 weeks ago and PSA down to 0.06 no bones Mets tiny spot still on lungs .Aware that it has not cleared up completely and never will. I am aware that i have had a vey good response to the chemo and ongoing hormone injections which i administer my self. I will probably go onto Zytiga in about 6 weeks.I had a VItamin D test also which showed lower levels than normal.I am taking some Vitamin d tablets .Also i have Pagets Disease(honeycombing of the bones ) which they say now is very curable as they give you an infusion of folic acid which i am waiting for an appointment.Make sure he walks ,does some resistant band exercises eat normal healthy food .Remain positive .My wife is very good at remedial massage ,also try and get in a hydrotherapy pool great for the body.I am a first aid trainer aged 73 and have worked 4 days a week ,very tired at the end of the day .The body goes up and down in energy levels,so i listen to my body. Wishing him well.I have only one person in my team and that is my professor!!
I will chime in and say that his story is similar to my own. PSA in the hundreds, cancer had spread to bones, mega-enlarged prostate gland. Five years ago last week, I visited a urologist for the first time after my pcp was not at all alarmed at my inability to pee well.Plot twist, I'm still here! My advice is to be aggressive! Go to a center of excellence! Surround him in the love of family! The statistics for cases like ours are not good in the aggregate, but will get better as more of us survive longer, as we are doing. I'm not going to lie--It's a tough road ahead, and it's important for him to have a REASON to do well. Has he read "Man's Search For Meaning" by Viktor Frankl? I re-read it after my Dx. Also I recommend counseling for a while!
I was diagnosed with Gleason 4+5 and Mets to bones in 2012. Since then I’ve done ADT, radiation, chemo, follow up stereotactic radiation. Haven’t done 2nd level AR agent yet because it’s not reimbursed in Australia (yet). I hope to start darolutamide soon.
So there’s plenty of reason to be hopeful. One of the best things I did early on was attend a PCRI conference in Los Angeles (yes I flew there from Australia) I thought I had no hope - my urologist had told me to “go home and tidy up my affairs” Which is code for you don’t have long to live !!
At the conference there was a break out session for “advanced cancer” There were over a hundred men in the room, some of whom had been diagnosed more than 10 years previously. I hadn’t actually personally met anyone else with stage 4 metastatic cancer at that point. So suddenly I realised I did have hope. And that was 10 years ago!
If your dad is interested the conference is held in Los Angeles in September each year. LA isn’t far from BC 😁
As others have suggested, your doc seems a bit out of date, as all the recent studies show that chemo is much more effective when given early.
I was diagnosed at 52 with stage 4 and a Gleason of 4+5. I'm now 62 and have had everything but the kitchen sink thrown at me. I am currently receiving Pluvicto treatments all this year every 6 weeks. I've had minimal side effects on all the treatments so far. Biggest side effect is fatigue. Zytiga and prednisone were the best for me, it put me in remission for 4 years almost. All the others keep the disease stationary. I was told by the doctors we are in the golden age of medicines and there are all kinds coming down the line. The best medicine is a positive attitude and a good sense of humor. Thankfully I have both. I'm still here and will be for a long time.
It's not false, we can all research online and find the negative side of this disease. However, I just wanted a discussion of positivity and the positive stores. We do know the reality, however we'd like to keep our spirits high and focus on the positive
It's not false hope. And is NEVER easy. It's constant stress, worry, physical issues, heartbreaks... Personally, I feel very fortunate. And if I knew exactly why my husband has had good results I'd write a book and be wealthy. I don't know why- his biology? His diet? His meds? His attitude? Luck? Don't know. But there's no harm telling someone that it is possible. Jdhanoa asked for positive stories. So I gave her mine. I'm sure people will also read all the struggles on this site- it's what I love about this forum. The support. I wish you all good- no one has it easy here and I am always aware of that💙
That is strange that the MO gave a prognosis. Mine says it’s impossible with the rapid changes in treatment over the last 5 years
December 21 I was 58 with rapidly increasing PSA and multiple mets to the spine/third rib/shoulder blade.
I went with a hit it hard and early approach and currently my PSA is undetectable and scans are clear. Not cured of course but no symptoms, working full time, living life to the full with family, skiing, football supporter, travel etc.
I believe the science is coming for the cure so went over and beyond SOC early. I really didn’t want chemo or ADT but did both and no regrets.
New things are coming on line all the time. I volunteered for a phase 1 cancer vaccine for example. No idea if it’s helped.
Keep the faith, keep researching and keep enjoying time with your dad.
To get beyond standard of care treatment with early LU-177 x 3 before my chemo x 3 I had to travel out of the UK and chose the Docrates hospital in Finland.
Hi, his MO did disclaim with his prognosis that each individual is different and he does not know what my dads story will be and that the medicine is changing so much so who knows what will be out in the next few years. Focusing on that and that he will defy the statistics, my dad is doing triplet with chemo, Darolutamide and zoladex
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My father diagnosed with Advanced prostate cancer
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