What should I expect at the end?

[Pechey]

My dad 77 year old had been battling castration resistant prostate cancer for many years. He was in remission for awhile (unsure exactly how long as he was secretive about the whole thing) however it made a huge comeback in January of 2022 and he has been through a short stint of chemo as well as Apaludimine which worked well for about a year then stopped working and he moved on to Zytiga which did not work at all. It was possible that he would be eligible for radium 223 but his kidney function is severely impaired and he continues to have continual pain crises. We looked into Pluvicto but our family doctor and oncologist don’t seem to think that it would benefit him unless he gets more mobile and gets his pain under control.

He was mobile up until a week ago and that’s when his pain became uncontrollable, although he was not taking his opioids (he was many months without them - not needing them) and was being stubborn. He is now in hospice for pain control and is doing much better with a fentanyl patch and is eating again. He can mobilize to the bathroom Independently and is hopeful of getting home and restarting chemo - unfortunately we do not think that he is strong enough for chemo at this time.

His Mets are bony at this stage pretty much from his knees to his skull and jaw now on his most recent bone scan this last Friday. His PSA is doubling each week now that his medication is no longer working and has risen from 200 to 600 since December.

The goal is to keep him comfortable and happy, but I’m wondering what the end may look like at this stage and if anyone has any input. He has made some fierce comebacks and still has some fight left but I don’t think anyone wants him living the remainder of his days sick from treatments. Any advice is welcome. Thank you.

[Dachshundlove]

Hospice prioritizes quality of life over prolonging life. Incidentally, people who enter hospice often live longer because their pain is managed and they are able to engage more with what matters. If he wants to do chemo and his Drs support his desire, that is a decision to be made by he and his medical team. It’s painful to watch people we love who are frail and dying, decide to take treatments that are likely to create more suffering for them, than they will solve. I’m sorry you have to go through this. I hope your dad’s medical team can be honest with him about the likelihood (or not) of chemo being helpful. The communication around the nuance of the treatment is on the medical team, but the decision to take or not to take treatment is up to your dad. When people are hanging on hard to Hope sometimes it’s helpful to start conversations about what things matter. Ask your dad what he would like to do or gain during whatever time he has left. He may say, he wants to see a baseball game. Use the bathroom on his own. Spend more time with family. Once you hear from him about what he wants the conversation about how to achieve aspirations can evolve.

[Pechey in reply to Dachshundlove]

I’m glad to hear that we have done the right thing for him, it was a very hard decision for everyone (especially him) to go to hospice but now that he is there it just seems that he is actually turning a page in a positive way instead of the sleepless nights of pain and anxiety he is now calm and happy looking forward to the future. I will ask him what is important to him, he is a pretty stoic man and doesn’t really like to talk about his feeling but maybe now that he is feeling better and more relaxed he might open up, or maybe he won’t and that is what his preference will be. I think we will have. Long conversation with his care team today and I do believe the oncologist and family doctor will have a more Frank discussion with him soon - he was just getting set up in hospice yesterday so now that his pain is more controlled I think he may be able to actually engage in conversation about what the best next steps are for him and be able to weigh in on what he wants. Thanks again for your input, it means a lot.

[mrscruffy]

My dad died from this same cancer and now I have it. I lived with him for last 6 months, most of which he was mobile. Oddly enough he dined most times on soda and mini chocolate brownies Declining comes swift and you can see it. I noticed he could no longer use his phone or computer because brain became afflicted. Shortly there after he slept more and more until all he did was sleep. Constant stream of opioids kept him free of pain. Strangely enough the 6 months I lived with him were the best of times, stories I had never heard and baseball on TV every night. Seeing how it ended for him I have chosen a different path for when it is my time. Enjoy the time you have with him

[Pechey in reply to mrscruffy]

Thank you, this is really helpful. He’s not declining at a functional level unless his pain is uncontrolled and seems to be able to enjoy food and conversation when he is comfortable. I guess I wonder how fast his functional decline may come on once the cancer starts to move away from his bone and into his organs and brain, so far it hasn’t progressed from his bone but I’m sure with the rapid progression on his most recent bone scan it may be a couple more months (maybe weeks?)

I think we are having a long conversation with his care team today and might have some more answers now that he is comfortable and thinking a little more clearly. I appreciate your thoughts and wish you all the very best in your journey

[CAMPSOUPS]

Difficult times. My thoughts are with you.

Not moving onto Pluvicto is puzzling from my end but maybe don't have the same story as you and his doctors.

Did he have a PSMA scan to determine if his mets were susceptible to Pluvicto treatment?

Or maybe his blood numbers are not healthy enough for Pluvicto although that would usually mean chemo not advised as well.

And then there is the hurdle of chemo needed to be given (even if its only one infusion) before Pluvicto is insurance approved.

Anyway generally Pluvicto is much more tolerable than chemo especially in older age.

Chemo, Pluvicto. Either way they can reduce the cancer, reduce the pain and cancer symptoms of course and extend life. Again I might be missing something about his blood labs, etc. but I don't see this as the end being near. I could be totally wrong though.

❤️🙏❤️

[Pechey in reply to CAMPSOUPS]

he seems to be doing a bit better today. It was his first full night in his life and I think he’s catching up on some pain-free sleep. In Canada pluvicto is out of pocket, which is fine but he only tolerated one round of chemo before his kidneys started showing signs of failure (they were already bad to begin with - as there were years of no follow up - he stopped following up as he felt fine)

I’m going to ask about pluvicto again - at least from the pain management perspective as it seems that we should know If it will help even a little after one or two rounds.

Do you have any personal experience with pluvicto?

[CAMPSOUPS in reply to Pechey]

I'm glad he's feeling better. Any moment feeling good is great.

I will be getting my 4th out of 6 Pluvicto (Lu 177) infusions next week. Blood labs including PSA tomorrow.

I am responding well to it.

8/21/2023--PSA 343

8/29/2023--Pluvicto

9/13/2023--PSA 840

10/3/2023--PSA 702

10/11/2023 Pluvicto

11/08/2023--PSA 519

11/22/2023 Pluvicto

12/13/2023--PSA 278

Only bothersome side effect is dry mouth but very tolerable. I am somewhat anemic but I cant pin it on Pluvicto due to other health conditions and the years of having PC and the treatment for it. Developing Cyclic Vomiting Syndrome has been a crux worse than my cancer and treatments.

Some of the bothersome bone mets have resolved and Spec CT scan shows less intensity in most of the bone mets.

[Pechey in reply to CAMPSOUPS]

Sorry I had a typo - first full night in hospice* not first full night of his life

May I ask what other treatments you’ve tried and what your kidney function is like? We’ve left a message for the oncologist to get back to us to discuss pluvicto further.

Again thank you so much for sharing your personal stories I’m so happy to see you it’s working for you.

[CAMPSOUPS in reply to Pechey]

Thanks for your kind words.

I dont have much to go on to evaluate my kidney function other than my medical team is not concerned. Even when I have lab results indicating border line issue I think the whole picture is looked at and if overall I am healthy enough we continue with treatments.

Creatine as part of kidney evaluation has been a little low for me. It's at .59 and normal is .67 to 1.17.

Low creatinine levels mean something is affecting creatine production in the body. This will often result from a person having low muscle mass or body weight. However, low creatinine levels may also indicate a person has chronic kidney disease, reduced kidney function, or malnutrition.

My treatments hmmm. Well lets see.

I walked into dr office for first time in Oct. 2019 with PSA of 1621.00 and subsequently scanned with bone mets skull to shins and lymph nodes pelvis to neck.

Lupron, Zometa, 6 infusions docetaxel benefit for about a year, Zytiga benefit for about 14 months, docetaxel again in a trial 3 infusions no benefit-progressing, Xtandi 2 1/2 months no benefit-progressing, trial drug ODM-208 felt great on it for about 5 + months despite slow progression which eventually was too much progression and moved onto current Pluvicto treatment.

[Pechey in reply to CAMPSOUPS]

Thank you for your thorough response, I suppose I could have saved you the typing by taking a quick peek at your profile. Creatinine and GFR (glomerular filtration rate) is what we use here to measure kidney function - my dads creatinine is high and his GFR hovers between 27-30 which is on par with end stage renal disease. Again, he had many years of denial of his diagnosis - mistrusting doctors, not having adequate follow-up and working way too much.

I hadn’t even heard of pluvicto until I started doing more in-depth research and saw that it can be very beneficial with a more mild side effect profile than radium or chemo.

The cost is about $30,000 per cycle which I would gladly remortgage my home to pay for if it meant helping with pain and quality of life.

Did you have much pain from your bone Mets? If so, did you find the pluvicto helped?

[CAMPSOUPS in reply to Pechey]

My progression for these little over 4 years has been up and down. I've said the other day that it was my right scapula, shoulder and arm but for about the last year its been my left hip and femur that has been the canary in the coal mine. Pain increases when I am progressing and abates when treatment is working.

I've been lucky to have not had debilitating pain. I do at times take hydrocodone and almost alway cannabis but I am lucky.

I'll copy and paste what I just wrote in the reply above or below:

Way after the 2nd infusion or maybe soon after the 3rd most of my bone met pain abated.

Your fathers scans seem recent and fortunately no mention of bone met damage to bone structure. I have some of that in my hip socket and femur and elsewhere.

[Pechey in reply to CAMPSOUPS]

Yes this is the same with him, he seems to have pain with the disease is progressing and little to none when his treatments are working. I have been reading your other posts and I think that when my sister and I read the meta to the skull and mandible we thought it was only a matter of time for brain involvement - which I’m reading is rather rare. Perhaps we aren’t as close to the end as I initially thought, but we will be ready for whatever he wants/ can handle next.

Thanks again so much, your responses have been so incredibly helpful

[CAMPSOUPS in reply to Pechey]

👍❤️❤️

[CAMPSOUPS in reply to CAMPSOUPS]

You asked about pain relief too. Way after the 2nd infusion or maybe soon after the 3rd most of my bone met pain abated.

I would be on top of the world with my current Pluvicto treatment but the development of Cyclic Vomiting Syndrome thru a wrench in that.

Of course not everyone has good results with Lu 177. I think its confirmed in the trials that those with more mets ( more PSMA avid mets ) have less side effects. The radioligand (lutetium) gets concentrated amongst the many mets. Low volume of mets and the Lu 177 goes elsewhere as well---salivary gland, bladder ?, kidneys ?.

[Pechey in reply to CAMPSOUPS]

Was this a result of the pluvicto?

So sorry to hear about the cyclic vomiting, this diagnosis is very hard to treat. It seems that you have a very involved care team who I’m sure has and are trying everything to help with that. I had hyperemesis when I was pregnant and it was literally the worst 9 months of my life, thankfully it stopped when my son was born but I wouldn’t wish that on any one - I know it’s not the same but constant vomting is literally the absolute worst and I’m so sorry you’re going through that.

[CAMPSOUPS in reply to Pechey]

Yes the Pluvicto pretty much resolved bone met pain so far.

Glad you made it past the vomiting.