My dad was diagnosed with stage 4 metastatic prostate cancer over a year ago (history of his diagnosis is in my profile). When he was diagnosed he did triple therapy (docataxel, zoladex and nubeqa). He has now on zoladex injections (every 3 months) and nubeqa (darolutamide) tablets daily. Thankfully these medications have been working great for him, his PSA has stayed down and he's had very minimal side effects. Praying this is long lasting.
While it has been an immense relief to see the medication working, I am worried that we are "treating PSA" and not the cancer. While he is doing great (knock on wood), i don't want to get complacent in his care. Currently, his MO has him doing blood tests every 3 months and looks at a handful of figures (PSA, testosterone, etc.). I am wondering if there are any other tests or anything else we should be doing, my worry is us just focusing on PSA to tell whether he's doing good or not, i want to make sure we don't miss anything. Does anyone have any advice on what else I can be doing or questions i should be asking his MO to ensure nothing get's overlooked on our end? Are there any signs any other tests, etc.?
Appreciate you all, this community has been my lifeline this past year.
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Yes that is true, i guess i meant to state when we do his 3 month check in's his MO is looking at just a handful of numbers (psa, testosterone, etc.). Is there anything else we should be doing to monitor? Currently just blood tests every 3 months and basing how he is doing based off the blood test figures
My ltd understanding is that progression of cancer is more recently measured through what shows in scans, as in radiographic free progression. I am also seeing use of measures of CTC circulating tumor cells, and NLR.
I consider radiopharmaceuticals and immunotherapy to be systemic. All cancer medicines (including also hormone therapies and chemo) target and kill cancer cells wherever they are and are therefore systemic.
Don't forget the benefits of exercise. As much as your Dad can handle. A good balance between aerobic and strength training. And it's important to remember that exercise is not just good for you like some paternalistic pat on the head, but there's serious research that especially resistance exercise helps directly fight prostate cancer. See "myokines". A continued success for your Dad!
Definitely agree, we were told by many amazing individuals about the benefits of exercise on this platform and because of that, exercise has become a massive part of his journey and we attribute him doing well a lot to this. So many of his previous aches and pains went away once he started daily exercising. Thank you!
Hi I will try to answer your question. If you have the funds to get started I suggest you use a professional trainer to show you how and what to do. Must gyms and exercise facilities have someone to help you get started.
Second option is to hop on YouTube and there are many videos on what and how to do it.
Third based on the level of cancer you need to be careful that you are not doing harm to fragile bones.
Fourth depending on where you are now in your physical condition you may want to start with walking and then move to harder aerobic exercise.
When I started on this journey. My goal was to do 15 minutes of walking. Over a month’s time I had built this up to 1 hour. I now do the same time but I do 5.5 to 7 miles or 12,000 to 16000 steps each day.
Likewise I started with very light weights and used machines at the gym. I keep a record of my daily weights used and the number of reps, etc. I have since graduated to free weights and have noticed a more substantial improvement in strength and development.
I also do 10 to 15 minutes of stretching in the AM before I eat. My dogs think that is great time to play too.
Now for the best part. I am pushing 80 and this has revitalized me. I no longer have back pain.
I had to buy new pants because I lost 14 pounds while on ADT and have keep the weight off. The amazing part is I now have three rows of abs muscles. I goal is to completely lose some of the remaining roll around the middle.
You will also have to change your diet. I eat less and do much more fruits and veggies.
Good luck on this journey it is not easy and requires discipline but it is so worth it.
Mgtd - your fantastic note is inspiring! I'm going to bookmark it and review my exercise program in the context of your comments.
This Health Unlocked business, it's so weird. We get these fantastic replies such as yours and then they kind of disappear somehow.
I was recently looking up a topic and then I discovered all these old posts on the topic in which I was interested, in fact available here in the last couple of years! And they were fantastic insights. But so hard to find! And then we reinvent the wheel.
I think that Health Unlocked people are asleep at the switch on the question of curation and building knowledge base from dialogue.
I just wrote up a long comment and then lost it. Here's the short version 😂.
Walking is great - see Z2 level exercise. 50% time balance between aerobic and resistance.
If you do resistance and if you have bone mets such as I do (three seriously compromised vertebrae) you have to be careful not to have a catastrophic fracture. No more deadlifts for me. But push-ups and planks and stretchy bands!
Volume is important - but even an hour a week still has amazing benefits! If you can hit 3 hours a week or 5 hours a week even better. Until recently I was exercising three four or five times a week.
One thing I learned to my detriment is the importance of recovery. Apparently you can't exercise all the time because then you burn out and get really tired and it takes a month to recover.
I find the mental load of planning exercise to be very hard - so I always do my brisk walking on exactly the same route. And I have made a little chart of my resistance exercise and just do the next exercise.
My goal which I achieved for a year and a half was regular systematic exercise, without thinking about it. Automatic. I don't have the willpower if it's not automatic. I just do it. And it worked.
And again to emphasize intense resistance exercise creates myokines, which help fight metastatic prostate cancer!
I found it very hard to figure out how to exercise. Because everybody has an opinion and there's an million influencers with strong opinions. When I do resistance I do reps to failure. And then try and do it again. And I have to remember about recovery. (BTW, with respect to friends on this forum who do this, I don't do yoga and I don't do stretching!)
Getting a decent pair of walking shoes made walking easier. Oh, and I was reminded by the fantastic reply above by Mgtd ,lots of steps per day is great. I don't drive anymore and so I can sometimes walk to appointments in our town. One hospital is 23,000 steps away 😂
I became obsessed with a Fitbit for a while. I got it while participating in a cancer exercise program. It was very helpful to see actual progress!
I like to exercise at home and in the neighborhood because I don't have time to go anywhere.
Lately psychologically I have found it really hard to exercise. In part because I started working again part-time. And I don't have only so much motivation per week! I need to get back to exercise.
At the beginning after my diagnosis I could not run 50 ft! And lumbered up the stairs like an old man. And after 6 months of exercise, and it was hard to figure out an exercise program, I could walk up the stairs with has spring in my step!
I am now 30 months from diagnosis of de novo high volume metastatic stage 4B prostate cancer. Triplet therapy. And exercise!! Feel pretty good so far. I told my wife a few months ago I feel normal. And I'm working part time again.
Now I have to get back to exercise again.
Maybe these notes will help. My sense is that each person has a different exercise psychology and different body limitations.
The most important thing to take out of my notes here is that brisk walking is really good, and if you can, do push-ups everyday 😃.
Is there a gym nearby? Hire an experienced trainer familiar with condition. Learn routines and buy some bands for and handgrip machine. Ilike this one. amazon.com/Strengthener-Fit...
Here are the bands i really like. I ended up buying two sets which make it easier to set up two different exercises without having to unclip and clip different bands on and repositioning the bands.
Hi! We’re located in Vancouver BC where they have a Prostate Cancer Supportive Care Program which gives us access to nutritionists, exercise experts, etc. Prior to my dad’s diagnosis the extent of his exercise was just walking (5 days a weeks 45 min). He’s now incorporated resistance training to his regimen. Before creating an exercise plan for him they tested several things: balance, grip strength, gait speed test, blood pressure, resting heart rate, age, weight, height, etc. I’ll copy over the email they first initially sent us regarding his exercise plan. Note, this is when he first started and it has now changed significantly to increase weights, reps and different exercises. They sent us the below instructions and videos, please again keep in mind this is as based off my dad’s physical health at the time of the appointment. We are planning on doing a follow up appointment, and if anyone is interested I can post what the care program gives us in that appointment as well.
Aerobic Routine (perform this routine 1-2x/week or on days you cannot get out for a walk):
Bodyweight Routine (perform this routine 2x/week for 1 set of 10 reps. After 2 weeks, increase to 2 sets of 10 reps. Avoid any exercises that cause pain/discomfort):
I have participated in such a program. It was a big help. Kind of sort of.
As for nutritionist, it would be really interesting to know if your nutritionist ir dietitian says something like "you should have several servings of whole grains everyday" ... 😃 (Not actually a good idea if you have metabolic syndrome or doing the ADT regimen. Not to mention being full-on diabetic.)
In the exercise program that I participated in, where they did all the things you were imagining such as grip strength, I realized at the end that the coach I was working with had no idea that I had zero testosterone.
In other words someone with metastatic prostate cancer hopefully they have zero to testosterone. And that's a heck of a thing when you're trying to exercise.
Hello, agreed, I think the program was a big help and a great starting point. A lot of this information I believe is already online but it’s nice to confirm it with a program.
Below is a video they sent us regarding nutrition - focus is on Mediterranean diet
I haven't watched the whole video shared in the earlier post above, but the whole idea of doing a plant-based diet because it is anti-cancer lacks evidence. This prescription for a plant-based diet as a healthy approach to cancer is cruel. And it may even be unhealthy. Yet it is said with such authority!
It is an ideological point of view that should not show up in the world of medicine and science. "Do no harm" seems to be getting lost.
I think the concern is that if you consume animal products, you'll consume an uncontrolled amount of hormones (if the animal product is from an area that allows hormones in animal food) and that is probably not the best idea if you have a hormone driven cancer. Because that is such an emotional debate (your post is a good example - you "read" angry), studies are probably of little use to convince anyone. I personally have no beef with beef but I can understand if others are uneasy.
That's an interesting perspective JRLDH. Both in terms of the reason for concern about eating meat (hormones) and in terms of a hermeneutic perspective on my post (angry) 😃
BTW I see you're new around here. I hope things are going okay for you.
I always cringe when I hear dietitian suggesting to eat several small meals per day. When does the insulin get to go down when someone eats all the time.
Exactly! And how many servings of whole grains everyday? Dieticians! From what I can say not much critical thinking there. Ideologues of a corrupt status quo.
There is a program at YMCA called Livestrong. It is a free 12 week exercise program for anyone with cancer. It is also free for everyone in your household. They meet two times a week, but you can go any other days and participate in any of their classes. Call your local YMCA or look online to see if they offer this program in your area. Not all Y’s have it. My husband goes.
Other treatment surveillance tools include periodic (annual?) imaging (consider PSMA PET, mpMRI or NaF PET/CT, given his bone mets). I also monitor my bone-specific alkaline phosphatase (for bone turnover) and CTx (for bone resorption). Those are blood tests. See this article for more discussion, but I would work with his docs to pick just 1-2 additional blood markers plus one imaging method.
I have had Prostate metastatic cancer for almost 5 years, I get a zoladex injection every three months and my PSA has stayed below 6 , a bone scan has shown cancer in a rib, but has not spread, The only side effect i get is i;m more tired, but I keep moving , even have a part time job at 85, I think that helps a lot, being positive and doing stuff
Thank you, may I ask how often you get a bone scan? My father’s only gotten two once at initial diagnosis and once after he finished chemo. Best of luck to you and to many many more years
If he is Stage IV (as I am) there is no “treating the cancer”. The objective is “slowing the cancer”. Having said that, your father seems to be on a different therapy than I am, so I’m not sure what the difference in treatment is.
I was diagnosed in April of 2023 with a PSA of 475. Along with medical treatment I prayed alot as well as others for me. I was operated on in late May for a tumor on my spine. In July I had a dream in which Jesus appeared to me and told me He was going to heal me. When I went for my first chemo in August my psa had dropped to 0.4. The doctors were extremely surprised. I told them of the dream. Six weeks my PSA was undetectable. It has remained undetectable. If you are not already, combine prayer with your medical treatment.God bless,
August it will be 7 years since my husband's stage 4 diagnosis with mets to bones and PSA of over 677. You can look in my profile. He gets scans once a year along with bloodwork every 2 months and systemic treatment. He's had scans more frequently than his annual one if they have seen progression in his annual scan- they've done spot radiation and a scan a couple of months after that treatment to check how it worked.
Here's a question PAKB - when you get your blood panel every 2 months can you just go to a clinic at your convenience or do you have to go into the hospital?
Interesting - I have to go to the hospital and they won't send the requisitions to at clinic. And there's this whole rigmarole of four appointments. So it totally wrecks the morning.
And then I have to wait literally five or six days to actually get the results.
You know what they say is the meaning of PSA - "permanent state of anxiety x.
That's crazy. We used to get it all done at the hospital but that made for a long day! Now the appointment for bloodwork is a couple of days prior to the oncology appointment so the results come in before oncology appointment.
I get blood work every 6 weeks and the numbers that I especially keep an eye on is PSA, testosterone and ALP (especially since I had bone mets at dx). These were the three most important numbers according to my early oncologist Snuffy Myers. PSA gives you information on whether your current treatment is working and keeping cancer controlled, Testosterone to be sure you’re <20 and ADT is effective and ALP to be sure there is no ongoing breakdown from bone metastasis.
I’ve been able to live 10+ years after a stage 4 dx, you can read my profile to see what treatments I’ve had.
PSA is the doorway indicator that the cancer is active! The responding therapy is not treating the PSA, but the cancer. Once PSA is active, then a slew of test should accompany the diagnosis, prognosis and risk stratification of the patient which then would direct care to an appropriate path!
But to be sure... PSA is NOT the treatment target, it is just a tool. That is all!
Great question! Those docs love those PSA results.
I see others have mentioned scans. Over six years with Stage 4 bone Mets at diagnosis, I've had four PET scans, 5 or 6 MRIs, CT scans, and nuclear bone scans. I'm having my first PSMA PET scan on 7/17.
That's great, John. Hang in there. My PSA is up now (1.92 on 6/6) but last PET on 1/3 showed no changes (or arguably improvement). Having my first PSMA on 7/17. Curious to see how that compares.
My OC always adds LDH to my quarterly tests. I researched it and asked him why and what he is looking for. His answer was a large increase and rapid loss of body weight and we would be worried about progression.
LDH becomes active in tumor cells through multiple oncogenic mechanisms that foster the Warburg effect, producing lactate through aerobic glycolysis pathways that are favored by cancerous proliferative cells [69]. LDH is an independent prognostic biomarker in many tumor types, including CRPC, and elevations are thought to be reflective of the underlying tumor burden or an aggressive phenotype [19,64]. LDH can also be increased during oncogenic signaling, hypoxia, or tissue necrosis/injury, and it may reflect a rapidly growing tumor that is outpacing its own drug supply.
Questions: Does anyone have any advice on what else HE can be doing or questions HE should be asking his MO to ensure nothing get's overlooked on our end? Are there any signs any other tests, etc.?
There is no test I'm aware of that will detect the cancer because cancer cells are far too small; only the tumors. If his scans (bone, CT, whatever) show no tumors, that's the goal. PSA is probably the best indicator of what the tumors are doing. As long as the tumors don't grow, or shrink, or go away entirely (on the scans) you're doing as well as you can do.
They're going to run the gamut on blood tests, including ones that don't seem to have anything to do with cancer, because the side effects of the treatment can be unpredictable.
We commenced eating a less processed food diet with far more legumes, organic eggs, chicken and fish. No alcohol. We’re still here, flashpacking around the planet, after 7 years of zoladex, EBRT, Gleason 8/9. Genetics aside, we are what we eat and drink! 💜
I had triplet therapy for my stage IV prostate cancer and your dad's regime is nearly identical to mine. I am 18 months out of chemo, just got my quarterly shot yesterday, and take abiraterone acetate daily. I get tested for PSA and testosterone quarterly like your father but then do get a bone scan and CT scan every 6 months. Is your father getting any scans done? That might be the only addition I am aware of. Good luck to your father!
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Dad has Stage 4 Prostate Cancer; rising PSA levels?
Darolutamide 1200mg/day?
Small increase in PSA. Should we be concerned?
