My dad saw his oncologist yesterday. My sister and I were there; we both read “Being Mortal” and watched several videos on the subject.
The MO brought in the PSA test and said it was time to start considering a treatment change and the next steps were chemo and there was also Pluvicto. What happened in the following 20 minutes was both shocking and stressed the importance of reading the book and asking the correct questions.
See my bio for the details. But my dad is 81, very frail, and diagnosed with stage 4 in Oct 2022 with bone mets to 8+ bones. My dad is the most positive, upbeat, person in the world. He has had periods of pain that required hospitalization for morphine to relieve it. But he is weak and frail He has fallen 5 times since June 10. He is tied to a walker, has no balance, has tremors in his arms, has lost 50 pounds over the past two years, and currently sleeps between 11-14 hours a day.While he is listed as a performance 2 he is so close to a performance 3 status. He lives in assisted living and loves the place and the people. He has to walk out to the smoking area when wanting to smoke. This is great exercise, but terrible for his COPD, and heart disease. Additionally, he is blind in one eye, very low vision in the other due to glaucoma.
What is important to my dad? Waking up, having coffee, joining others for meals, going to the daily entertainment, hanging out with his kitty, going out to the smoking area, sitting in the lobby while his eyes adjust, playing poker, getting a coke in the bistro, talking to friends, having his daughters and his ex-wife come to visit. He doesn’t want to think about what tomorrow brings. He wants to enjoy today. Doesn’t want to give up smoking. But he doesn’t want to be bedridden with tubes, etc.
We were shocked at what the MO did and initially said. I asked questions. “If he is your Dad, would you do chemo?” No. We asked why?” “Your dad is very frail, he doesn’t have strong blood work, he will have significant side effects with this chemo, and I don’t think he will be able to do more than one dose and I think it will make him worse based on his experience.” We moved on to Pluvicto. He doesn’t love this drug. Said it can help some, but talked about the immune side effects, about the fatigue after the palliative radiation (my dad slept 18+ hours a day for about two weeks.) It will also lower his immune system and to this date my dad has not caught a cold or flu in assisted living. He thinks in my dad’s case he would get one, possibly two doses, and it would need to be stopped based on my dad’s current health status, but wouldn’t rule this out as an ending play, but thinks we should hold off as long as we can.
The way he has explained the hormone blockers in my dad’s case is that it is blocking some, not all of his cancer. The questions we have as daughters. “Are we better off staying on Zytiga, riding it out as long as possible, and focusing on today?” Our plan is to d one more pet scan in the coming weeks to see if the cancer has hit an organ. That may cause my dad today to change course–his decision. But after that we won’t pull PSA for three months (if possible) and probably won’t do any more pet scans unless we make a last-minute change. The pharmacist oncologist at the VA is the gatekeeper to Zytiga. He said to stay away from her, and try to push her out on the blood tests. “My daughter was sick and couldn’t bring me.” etc. If she stops approving the drug we could try some of the older blockers that we were first on, and we still have a month's supply of Xtandi.
We are meeting with my dad’s palliative care doctor on Monday to review pain management and I am going to ask for some short-dose morphine pills for home if the oxycodone fails to work at a given time. Keep my dad out of the hospital.
My dad wants to make it to Thanksgiving, his Birthday in December, and Christmas. If we get to the fall months and we see that isn’t happening, we will move up the celebration.
As a group when I asked the MO if we were talking 3-6 months he could see my dad’s face and the MO said perhaps a year. Privately, that changed, and feels the end of the year might be a stretch.
I have been so stressed about what comes next with chemo or Pluvicto. I am at peace with what we are doing. If you haven’t read the book it is a must-read.
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lgutman
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All great, except I think one should never ask a doctor, "if he were your dad...?" You got the answer you wanted this time but if the doctor believed in treatment at all costs, you would not have. You are better able to assess your father's desires than the doctor is.
Good advice. I was a bit surprised when he first started with chemo conversation and then mentioned his concerns only when pressed. Looking back I wish we did chemo up front when. He was strongest, but he did break his hip a month into this journey so who knows. I will help my dad walk what ever journey he wants and in my heart I know this gives him the best QOL. This man loves pie, cigarettes, and the simple things in life. He is surrounded by friends at the new place and we will do whatever needs to be done to make the journey, no matter how long or short be as amazing as possible. I appreciate all your advice and research so that k you. I will keep posting to let others know
Thank you for sharing details. This is water under the bridge now but I'm just curious if your dad before his original diagnosis from back pain had an annual PSA test? Or just the DRE for the prostate checkup?I too was first diagnosed where's metastatic prostate cancer, although at an earlier age, because of escalating back pain. DRE didn't catch it and I never had a PSA test.
All the best to you and your dad in the coming months and years hopefully.
My dad had asked his primary care doctor at 76/77 for a PSA test. She said they typically didn't do it at that age unless there was an issue. In the ER after the Dr told us his diagnosis, my dad asked if he had that blood test would he have caught it. The ER doct replied it would have most likely caught it and that is why he did not agree with the current recommendations. Six months later a study came out showing the VA how testing had gone down the previous ten years And yet stage 4 at initial diagnosis went up at a large increase demonstrating the need for testing.
This is happening worldwide - the prejudice against PSA testing - at any age - means that first time diagnosis of prostate cancer is where the cancer has already metastasized.
(You may already be aware of this but it was the US Preventative Services Task Force in 2012 that came up with a poorly reasoned recommendation against widespread PSA testing, in the first place, which was then adopted around the world.)
That is terrible. Now men all over the world like my dad will die because of this, and their adult children like me will walk them in the same journey. I am sorry that flawed recommendation did the same thing to you.
This is a n example of trying to apply simplistic solutions to complex problems. Over treatment of prostate cancer is common and the results can be worse than the disease. That is the reason for the change of guidelines re PSA testing. It is the over treating not the testing itself which can lead to diagnosis of cancer before it becomes metastatic (that is also more complicated and there are people who think that all cancer becomes "metastatic"very early but is death with by a functioning immune system)
Yeah Spencoid, "over-treatment", as in "the risk of in a chaotic, profit-driven U.S. healthcare system" was the stupid, immoral and very paternalistic reason why in 2012 the U.S. Preventative Services Task Force recommended against PSA testing.
Result? More and more and more men are diagnosed with prostate cancer - but where the cancer is already metastasized!
So whereas one can "live with prostate cancer, but not die from it", as the cliche goes, once your prostate cancer is metastasized, it's a different story, and until recently (due to improving therapies) only 30% are still alive after five years.
I did my own actuarials two years ago. For me I lose between 11 and 19 years of life. With my wife and children. And so far one grandchild. Ripples of devastation. (Oddly enough I feel much better now both physically and psychologically!)
Ironically, the over-treatment continues. What a surprise.
Agreed 💯. The living with metastatic cancer part is unfair when a blood test that my dad asked for years earlier would have caught this and he would have had a chance to live into his late 80's. I am so sorry that you are fighting this too.
Thanks for your comment Ms. Gutman (?). We're on the same page. Although your dad is smarter or better informed than I was. I didn't even know that I should ask for a PSA. Since then I have tried to become reasonably more informed.
You mention using oxycodone and possibly morphine for breakthrough pain. I don't know how true it is but I was warned about taking both timed release and fast acting opiods at the same time. My primary car doctor who is prescribing the opiods (time released morphine and fast acting) said it could be fatal to take them at the same time.
You mention Zytiga which is Abiraterone . It was explained to me (when ocycodone did nothing for my pain) that codeine is not analgesic but breaks down into morphine which is. Interestingly Abiraterone (which i was taking) prevents this conversion and makes oxy useless. So if taking Abiraterone
Both of these points were told to me by my doctors, I have not checked the accuracy of these statements.
We are meeting with palliative care tomorrow. She will set it up. When I brought my dad to the ER in February they gave him IV morphine and that took the pain away. So my goal would be is to have something as an emergency at home.
I will join Bob on the use of time release and quick acting. My wife uses both to get sustained relief and the quick acting to manage flare pain. From my perspective she has been doing that for about 15 years.
She was recently diagnosed with blood cancer which is in the “watch and see” mode. If there is a silver lining to this diagnosis it is the pain doctor is now released from federal guidelines and has given her more 5 mg pills every 30 days to combat the pain in her back.
I have taken both immediate release morphine and extended release morphine at the same time for severe backspin, and have had no problems with combining them.
About your Dad's fragility, one (natural) drug that can counteract that condition is testosterone. He should be using a daily testosterone gel or cream, available inexpensively from your local compounding pharmacy, or a monthly shot. It will greatly increase his quality of life. And, according to research done by Dr. Morgentaler at Harvard Medical School, there is no evidence of increased prostate cancer due to taking supplemental testosterone, for men with advanced cancer like your Dad. What's your Dad's testosterone level?
Hi, Thinking of you and your dad. My dad is at a similar stage to yours. He's 80, just broke his leg in March and that has sent him into freefall as he became bedbound.
He was due to start Radium 223 in April but due to broken leg they no longer mention giving him that. Probably because he had to wait so long for bone to heal.
My dad has lost a lot of weight also.
His PSA this week was 630 up from about 30 in March 2023.
He was on Abiraterone and Pred until that failed in December>
He has now been put on Palliative care and the option to have Radium 223 seems no longer to be on table probably becasue as he is so week, is suffering from nausea and can't keep much food down.
Are you saying that your dad's palliative care team is still saying Pluvicto is an option. My dad is very frail also but if we can get his weight up a bit I will explore the Radium 223 again.
Can some one explain what the importance of Aklaline Phosphate levels are?
At my dad's last blood test on July 3rd 2024 his Alkaline Phosphate live was 823 U/L
Thanks, wishing you and your dad the best as you continue on this difficult journey.
Sorry to hear about your dad. I know how helpless and gut wrenching the journey is. When he became bed bound he moved to a performance 3 status and isn't eligible for advance cancer treatment. The way I understand ALP is that it measures the markers from bone mets that it leaves behind. If his other liver functions are off it could also indicate a spread to an organ. My sister and I have pretty much ruled out Pluvicto for what it won't and will do for my dad. We have started to have honest conversations about what he wants and are creating a list of marching orders. We are meeting .with his palliative care team tomorrow to make some det. But he still has plenty of time ahead in terms of months to live and our goal is to give him the best quality. Your dad sounds like he is not physically in a good place and you have to ask if you are sacrificing time today for unknown time later as you explore treatments. If you haven't had these conversations I would encourage watching any of the "Being Mortal" videos on you tube. Thinking of you and your family. Feel free to message me if you want to talk more privately.
❤️💜 Thank you. I will message you once I hear from my brother how he is. Dad's in UK and was "jogging along" as he calls it till about June 20, then just dropped off a cliff. My brother arrived in England today. Hopefully he will be able to take my dad out more in the car. Make sure he eats properly, and hopefully boost his energy levels.
My dad can still get around a bit it just exhausts him. He was essentially bed bound by broken leg as it was a full-leg caste and therefore pretty impossible for him to go anywhere in case he displaced the bone that had been set, as surgery was ruled too risky. The cast has now been removed and he has a boot to the knee. He was meant to see the orthopaedic team again on July 10th, but palliative care team are now visiting for first time on that day. I won't be there my brother will.
My dad's Alkaline Phosphate is 823 u/l
His albumin 28 g/l
The hospital wanted to give him a blood transfusion but he refused to stay in hospital.😥
I will stay in touch and see how you, your family, and your dad are fairing.🙏🙏
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