I recently shared that my Dad was diagnosed with aggressive Gleason 10 prostate cancer. CT and bone scan confirmed this week he has bone mets in his spine (within L5 vertebrae). This is very shocking and heartbreaking to our family - his only symptom was more frequent urination - he does not have any bone pain. PSA is 19.
Right now, he is looking and feeling good. He’s 77 - but young at heart, stills runs a construction company, loves to keep busy and travel - my parents have a better social life than I do.
Next steps are to meet with the oncologist and begin treatment over the coming weeks (presumably radiation and hormone therapy).
Any stories of hope for someone with bone mets aggressive PC? Thanks for any stories and guidance. I’m remaining hopeful that we have good years ahead with him.
Written by
LDC2024
To view profiles and participate in discussions please or .
I know a patient who was in a similar situation as your father. He got nuclear therapy, Lutetium-177 and Actinium-225 combined. It worked well for him.
Pluvicto LU 177 (it is pretty new to combine it with Actinium and i believe this treatment is only available in trials but that might have changed recently) Pluvicto was (and i believe still is) only given to patients who have received prior chemo but this might have changed very recently and I believe there are trial for the chemo naive. So it sounds like the patient you are describing is not in the same category as the poster.
He was treated in Germany. If you are diagnosed with many bone mets some nuclear physicians in Germany will treat you while being hormone sensitive. After the treatment he continued with ADT and Apalutamide.
Dr. Aggarwal said that he did not think that Pluvicto was appropriate for treatment of early disease. I am pretty sure that it was Dr. Aggarwal that I asked but I could certainly be remembering a conversation with another MO. I asked him about this and he explained that : In order for Pluvicto to be effective there needs to be s sufficient concentration of it at the target site and that small masses of PC cells may (or can) not aggregate enough of the isotope to be effective at killing the calls. Maybe Actinium or a combination of both would be better at this. Actinium has a much shorter range so it can be provided in higher strength with less chance of damaging surrounding areas.
Hi my dad was diagnosed with advanced prostate cancer in Oct 2021. With Mets to spine, lungs, liver.
His PSA was 5000. (Today 28 months later his PSA is 0.031 and still dropping) He was told at the time he had 2 months to live. He had spinal surgery because of a tumour on his thoracic spine. He was paralyzed. Told he would never walk again. Also Mets to the liver and lungs.
He’s been on daily Abiraterone 1000 and prednisone 5 mgs and ELIGARD shot every 6 months. Also supplements high doses Curcumin, c60, garlic, ionic calcium, Vit D, and more and THC/CBD. He eats a very clean 95% whole foods diet. Mediterranean diet. My dad has tremendous faith in God.
After 2 months dad began to walk with a walker. 3 months after that he was back to gardening. We sent all caregivers home, the bedlift went back the wheelchair was returned. He did some rehab asap after surgery. He’s still walking. All doctors are surprised. His GP says “you’re dad has surprised us all.”
Last week the oncologist called . He says my dad is remarkable. He is shocked at his recovery. He said your dads PSA is at 0.031 and is still dropping. The PSA has been consistently low for almost 2 years. He said your dad had a really bad cancer and to keep doing whatever we were doing at home. He also changed their appts from every 3 months to 6 months and labwork from every month to every 3 months.
There is hope. There is a healing path. Everyone’s journey is unique.
LDC, I'm an example of someone who has received triplet therapy, as mentioned by Tall Allen.
I'm not quite 70 yet. I have three seriously compromised vertebrae and other metastases but no organ involvement. My initial PSA was 1700 (not a typo)! One strange thing about my diagnosis and prostate cancer journey is because when I was diagnosed it was too late, but as a result I have had no destructive surgery or radiation. Only triplet therapy.
And almost 2 years later I'm doing great, with zero PSA! The only side effect I have is fatigue which I continue to work on via exercises. And in some senses life is sort of normal (some people think the whole ED is a big deal, my view is that ED as an uninteresting and distracting sidebar).
I think it's important for any person in our position to focus on the big picture. It seems everybody at the beginning of prostate cancer gets distracted by details. But this is no longer a urinary mechanical issue or other distraction. It's not even prostate cancer anymore. Medical bodies are even looking into changing the name of metastatic prostate cancer.
Because once the cancer has left the prostate it is now an independent entity with millions of cells acting in one's body, system wide. This is why you have to have a medical oncologist and not just a urologist or a radiation oncologist!
A biochemical systems issue needs to be treated with system-wide therapies - otherwise known as drug therapies.
Triplet therapy is so called because you add everything up and hit the cancer all at once! It used to be you'd try one therapy after another and each one of them would fail and then you try another one and eventually you run out of options. Because the cancer evolves away around each threat. The cancer wants to live!
But with triplet therapy you hit cancer with everything you've got up front! 1. ADT, 2. An advanced hormone drug possibly of the ARPI or ARi classes. 3. Chemo! Which is almost always Docetaxel. The result according to massive high-quality clinical studies is an excellent prognosis.
As I mentioned this is not any longer just prostate cancer. You can live with prostate cancer as the cliche goes. And you'll probably have a lot of annoying people reminding you of that. But metastatic prostate cancer is a different beast. With triplet therapy though the odds are pretty good that you will see multiple years of decent quality of life. Unlike just prostate cancer, it is still terminal. Just not very soon! In the meantime research is proceeding at an amazing pace!
I'm an example of all this. The fact that you're dad is fit and active is an excellent prognosis. But of course all of these observations are based on statistical averages and some people do better and some people do worse according to their own idiosyncrasies.
Learning about metastatic prostate cancer, and managing therapy, is a big job! A big success for you, your Dad and your family!
Thank you so, so much for sharing your story and this wealth of knowledge. It is truly reassuring to hear you are doing well. For the triplet therapy - with chemo (Docetaxel), did it kick you on your a** and make you VERY sick? My Dad is very adamant about no chemo - his personal choice, and he’s quite set in his ways about it. But he also hasn’t heard of the proposed treatment options yet from the oncologist, so he could potentially change his mind based on that conversation. Thank you for the information - I will ask about triplet therapy at his next appt.
I was lucky and had quite mild side effects with Docetaxel; I think I felt crummy for a day or something like that.
Given your dad's age, his perception of chemo is likely derived from the experiences of people in the 90s or '80s or even earlier when it was awful. I can honesty say about my six sessions of Docetaxel that they were not awful at all. I also did not end up with any neuropathy at all (in frankness though there is a risk). You can see quite a bit of discussion about this on the Forum (including the best use of cold packs for the prevention of neuropathy).
I am also one of the people who fasted around the infusions - a day before and the day during and after for a total of 2 days or two and a half days. There is developing evidence that fasting around chemo reduces side effects and enhances the anti-prostate cancer effect.
There's an important calculation to make here. And you need to do lots of research about this calculation. There is no triplet therapy without chemo. And the horrible calculation is that if you don't do the chemo you will lose several years of good quality of life - there are no guarantees of course, this is all about averages.
Docetaxel apparently directly attacks the energy centers of prostate cancer cells specifically. These are the all-important mitochondria. The other drugs are messing with your hormones but nothing else is attacking the prostate cancer cells directly (except if we leave the drug world and consider radiation).
Consider though my comments in the original note above about the systemic nature of metastatic prostate cancer. Your dad could have lots of micro metastases throughout his body - maybe even thousands of micro metastases that aren't a bother yet but are all waiting and enthusiastic to grow under the right circumstances. It is impossible to find and irradiate them all safely. Docetaxel is a system-wide therapy that safely finds all of them wherever they are and attacks them. Lots of the bastards will die, although probably not all of them and the ones that don't die might go to sleep at least. In my case my PSA dropped to zero during the first 8 months of my triplet therapy and at the end of my chemo sessions.
Decades ago chemo was often awful and frequently didn't work very well. Lots has changed since then. Uninformed prejudice should not guide your decision
I can't tell you what to do and there are no guarantees, but chemo is very doable for many people and contributes very significantly to more positive outcomes. Not doing chemo has a very high price.
And by the way at your father's age they won't let him have it if they don't think he's up for it.
I'd be grateful to Tall Allen if he can correct any errors in this note.
Looks accurate to me! I'd add that in my experience, the "no chemo" attitude comes from movies and from the experience of friends and relatives taking far harsher kinds of chemo for other than prostate cancer. It is also true that those who wait to use it as a last-ditch therapy get little benefit from it and experience far worse side effects. The reason for worse side effects later on is that cancer itself is debilitating. It is tragic that some men wait too long to use it out of misplaced fears.
Thanks TA! I was quite apprehensive myself before my chemo and I have been fortunate in having good results. I think at the point in time around diagnosis that one's perspective collapses and it's like looking at life through a straw.
It's very hard to get a perspective. Not so great for decision making. Your nuanced explanation of the chemo topic is very helpful. I don't recall coming across these perspectives when I was going through my own decision making process.
Hi JohnInTheMiddle, thanks for your very helpful post. We are also in Canada. My husband's PSA is now 0.04 27 months post RP for G3+4 T3B. Is it possible they would consider triplet therapy before evidence of metastasis? Once he has confirmed BCR, the next step would be ADT+radiation. At what point should we be inquiring about triplet therapy?
That's a great question that Tall Allen might know about. I have no idea. It would be great to keep PCa sequestered in the prostate. There are so many ways of doing that and so many ways of watchful waiting. Your doctors will probably present this perspective to you. Another thing to consider is that triplet therapy is hard on the body and even then it's not a cure, of course.
Thanks, although not a cure but more likely to eliminate any systemic micro metastasis not detected by scans. Would like to hear Tall Allen's opinion on why getting triplet therapy first followed by whole pelvic radiation wouldn't be recommended after BCR if the patient is younger and otherwise healthy.
PLEASE encourage your dad to be open-mined about chemo - of course everybody is terrified of it, but there are ways to mitigate side effects (fasting around treatment days, icing hands/feet/ mouth to minimize chances of neuropathy/tissue damage, staying very well hydrated, meds like Claritin & prednisone to minimize other side effects, good anti-nausea meds, Neulasta to prevent neutropenia, and more). There is lots of help on this forum about all these things. Most patients have a couple of days of feeling exhausted some 2-3 days after infusion, then feel more normal until next infusion. It's definitely doable, and chemo can make a HUGE contribution to life expectancy for metastatic patients. Triplet therapy is now standard-of-care. Don't let him have his fear of chemo curtail his chances of a good remission. He sounds like he is in good physical condition now - he's the perfect candidate.
Some prominent MOs have switched up the chemo protocol for a lower dose every 2 weeks, as opposed to the higher standard dose every 3 weeks; especially where the patient is older or frail. Might worth asking your MO about.
Thanks so much Tall Allen! I really appreciate your insight and passing along that article. I’ll ask about triplet therapy at his appt on Friday with the radiation oncologist.
Hi Tall Allen. I have been researching chemo as this is likely in our near future and read the attached. Says 6-10 infusions is typical. Are these given around three weeks apart? What factors assist MO to determine the number of infusions needed? Thanks. Our Zoom call focused on what to expect for one and not an overview of the entire program. Thanks for all your information!!
Yes, 3 weeks apart. Your MO will judge the number of infusions based on your status, your bloodwork, and how well you respond. Take it one step at a time.
Gleason 9 when diagnosed but it was assumed to be localized so radiation was done along with ADT. In your case being metastatic there is no point in localized radiation since you would be treating just part of the disease. Chemo is more broad acting. When I became metastatic and castrate resistant chemo was tried. It is not a cure all but the side effects are usually not horrible. Al it did to me was make my hair fall out and caused a little peripheral neuropathy which remains. This was in spite of cold pacs before during and after treatment. The s=downside is that it did little other than postponing progression a little. Now doing Pluvicto but that is generally reserved until other treatments fail.
Your response to ADT which will hopefully be long (three years for me) and you will not have to worry about other treatments for a while. ADT is no picnic but better than the alternatives. Be sure to have genetic testing done since this might be helpful in choosing later treatments.
You can look in my profile to see my husband's stats. He was diagnosed Gleason 9 with PSA over 677 and mets to spine, hip, pelvic bone... He's doing well almost 7 years later. Still works and plays!
While I had a Gleason 9, I did have metastasis at diagnosis including lymph nodes and one area of bone.
I also did triplet therapy with chemo in 2022. I finished everything off with radiation which was completed January 2023. I’ve had a year so far of undetectable PSA.
I would absolutely choose triplet therapy again. The chemo was definitely tolerable. I exercised (average of 6-7 miles of walking a day) and worked all through my chemo and radiation treatments. Staying active makes a huge positive difference in how your Dad will tolerate his treatments
Happy to answer questions about my experience.
Thank you for supporting your Dad through this. ♥️🙏
Thanks so much for sharing! It’s great to hear your treatments are having a positive effect and you found them tolerable.
I’m definitely going to ask about the triplet therapy and at the very least explore it as an option, despite my Dad’s resistance to any sort of chemo. It appears based on peoples’ responses here that it is effective and not nearly as harsh and debilitating as I envision. Thank you for your insight and best wishes to you that you continue to thrive 🙏
Welcome. Lots of good information in this thread, so I have little to add. I will only chime in on docetaxel chemo not being an onerous experience at all for me. The comments about the all too common staunch ‘anti-chemo’ position being based on folklore rooted in the past are spot on. Advancements in auxiliary drugs to prevent allergic reactions, nausea etc are quite helpful. And docetaxel is well known to be tolerated better than most.
One suggestion only from me-if he is able to continue to exercise through the treatments his results will be enhanced greatly. It takes a lot of exercise to thrive on these drugs but it is profoundly worth it. Great luck to you!
Thank you so much! This is helping to change my perspective around chemo. Sadly, we have had family members and close friends go through absolute hell with chemo in recent years which has contributed to his adamant stance on not wanting to go through that - at his age of 77. That said - their cancers were different (non-Hodgkins, colon cancer and osteosarcoma bone cancer).
The excersize piece seems to be brought up quite a bit that has helped people through their treatments. Unfortunately, you can’t teach an old dog new tricks My Dad keeps very busy and does not lead a sedentary lifestyle by any means - he is always moving/working/doing things - however he doesn’t go to the gym or have any sort of exercise regime. He’ll go for walks here and there. But it sounds like he’ll need to ramp that up if it can greatly help his outcomes.
Great! If he can relax his stance on the chemo that is huge. Perhaps an open mind enough to try it. If he finds it intolerable after a couple of infusions so be it, but I think he would be quite surprised.
The effects of hormone therapy is what requires the exercise more than anything. Really important.
Remember, modern medicine can ensure he will have many more years, but not the ‘good years’ you refer to. Those are what you want, and that part is within his control.Onward! ❤️
My husband your dad’s age. A prior history of prostate cancer that was radiated several years ago but then PSA started rising last two years. Similar profile (PSA was up to 9.6 and had a handful of bone mets in latest PET scan and told he was Gleason 9). Was started on a quarterly Lupron in January and one month ago on Erleada. His latest blood test last week showed PSA down to 1.8. He has not been prescribed chemo yet but we were included in an educational zoom call about it. Appointment at Mayo in Phoenix is next week for the next Lupron and to find out more about planned treatment going forward. In April said would be doing CT scans to see effects on the Mets. He is also very active and so far only treatment symptoms are hot flashes and some fatigue. Important to exercise and eat whole foods. We are positive and enjoy every day. This site is great for information as so much to learn!
I have a positive history for you but before I provide it to you let me begin with a caution: Everyone's case is unique and everyone responds differently. In addition, age often makes a difference. Having said that: I was diagnosed at age 54 with about 5 bone mets and a PSA in the mid 30s (which was probably in the 40s when treatment began). Triplet therapy was not the SOC back then, so I started on Lupron and shortly thereafter added abiraterone. I have been on treatment for 11+ years, although with my PSA at mostly <.05, except for when I took 3 "vacations" during my first 5 years and then again when my PSA began to rise about 30 months ago. I had my largest tumor radiated (because of the PSA rise) about 20 months ago and was able to remain on the same treatment. My PSA has been rising again over the last nine months (it's now at .14) and when it reaches .20 I will get another PSMA scan and then my MO and I will decide what to do (chemo, another anti-androgen, more radiation, a trial.....????) .Anyway-I am 11+ years from DX and hoping for more. There are some people on this site who are 15 yrs from DX and I think a few are even longer.
For me it was tolerable. I was in pretty good shape going into it which was a reason my oncologist suggested the triple therapy. With Chemo I lost my hair and taste. It all came back. My daughters got to join my pc trip and shaved my head. Session 4 was tough as the chemo caught up with me and I lost a lot of energy but with help I got through it. You are part of your Dads journey and even if it’s tough, help your Dad keep a positive attitude, eat right, and exercise. Cheers
hi, I’m 75 years old and I had a glisten scored 10 with one spot in spine. I think it was L2.
Anyway it’s been almost five years and only therapy I have gone so far is ADT plus Zitiga and radiation. No side effects whatsoever. My quality of life is excellent. Now after five years PSA has gone to .5 however, I am MSI hi so I have option to start Keytruda, which I’ll decide after PSMA test which is scheduled for end of March.
Wow - so happy to hear this. Thanks so much for sharing your story. I hope this next line of treatment continues to work well for you and you have many great “feeling excellent” years ahead.
I had Gleason 8 with PSA of 3,900 and mets everywhere when diagnosed 2 years ago. The oncologist didn't think it was worth treating, but he did with Chemo and radiation with continuing Firmagon . PSA fell to o.4. Rising now to 21 and starting Xtandi, but I feel really good. Don't panic just carry on enjoying life. Best wishes. Chris
thank you! Im happy to hear your oncologist went ahead with a treatment option those two tears ago as it had a positive effect. The words “don’t panic” are so true and something I need to better follow.
Very similar story for my Dad. Diagnosed 2017. After a lot of initial resistance he did chemo and radiation after surgery and had a dream run through. He did all the conventional and all the complementary (fasting with chemo, vitamin C infusions, lots of immune builders, exercise, meditation, found meaning, came to terms with his griefs as best he could)...he has never stopped working. He's a highly active, imaginative, contributing man. It was do well controlled that he has stop started the ADT a few times. The cancer is back again now post-cochlear op and his naturopath and integrative gp say the issue has been his liver was hammered by the op. He has just been put in zytiga and pred, plus ADT...his testosterone, pain, and PSA (was 280) much improved within three weeks. Chemo is not pleasant but my Dad worked throughout. He's a cattle farmer who has gone vegan. Gut is incredibly important in this disease and I read a medical article that suggested that altering gut flora is how zytiga works. Faith is very important too.
Thanks so much for sharing. It’s wonderful to hear your Dad is doing okay and I’m wishing him more good years ahead. We do have lots of faith over here and my Dad is a very optimistic person which helps too. So far he has started ADT and recently started radiation last week, which goes until end of next week. Thanks again and best wishes!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My Dad keeps very busy and does not lead a sedentary lifestyle by any means - he is always moving/working/doing things - however he doesn’t go to the gym or have any sort of exercise regime. He’ll go for walks here and there. But it sounds like he’ll need to ramp that up if it can greatly help his outcomes. 
Abiraterone plus Prednisone and 3 monthly injection failing now in 79 year old dad with mets to bone on NHS in UK.
Don't Give Up Hope. 4 Years after a dreadful dx of metastatic PC with a 209 PSA and bone mets, I am still undetectable
Advanced prostate cancer-gleason 9 with lupron
My Dad is Here with Me Now..Seeking Advice for Pain and Zytiga? Please help, need some insight...
Can someone have stable bone mets? 
