Meeting with our oncologist for castrate resistance metastatic prostate cancer

[lgutman]

We met with my Dad's MO yesterday. (Diagnosed 10/22 with advanced metastatic cancer, became castrate resistant about a year ago.)   He shared that the Xtandi is still blocking some cancer growth, but not all of it. His PSA is 2.8 (currently doubling every four weeks.)  His PetScan shows some growth (he has it on all of his bones, across the spine, shoulders and even at base of skull.) It hasn't hit an organ yet which he said was important. Given the advancement of the pain he said it was time to move to the next drug. Initial therapy bicalutamide/predinsone (8 months) Xtandi (7 months) LuproneMoving to Arbitrone _ prednisone. He told me his dad's numbers (testosterone 39 and PSA 2.8) are still pretty low and if it wasn't for the pain we would keep him on the Xtandi for a bit longer while the PSA increased. After Zytega he said we don't have many good options, given my dad's age (81) and frailty.  My dad does not want to do chemo and I feel somewhat supportive of this decision. 

The MO shared that we came straight to him in a nontraditional route. Normally he would have seen the urologist, had a biopsy, etc.  My dad was diagnosed with metastatic prostate cancer in Oct 2022 in the ER with escalating back pain. If we wanted to look at anything after Zytiga we would have to do a biopsy, go back and do the preliminary work, but there were really no good options beyond this new drug.  He did share that we could start chemo and always stop. 

 He shared Zytiga might not work, could work for months, or several years and it is hard to say. He is having radiation for the second time (first time was to spine/pelvins, hips) and now it is to the shoulder/neck, maybe his skull?  But he told us this was the last time for external beam radiation. 

I spoke with my dad's palliative care dr about controlling the pain more. He currently uses Oxy every 4 hours (10 mg) with the ability to take another one at the halfway point. Some days it is no problem, some days the pain builds and doesn't seem to control it and he is out of sorts. She is recommending a longer-term, twice-a-day oral (I think morphine-based) opioid.  My sister and I moved him into assisted living about a month ago and he is doing amazing with the social aspect. 

My dad doesn't worry about things he can't control and has the best attitude about it. After MO he says "I could live several more years.)  He was recently diagnosed with some neurodegenerative issues, so even if he could fight the cancer this would become a large problem in the next two years. 

I am having an issue with what to expect in the months to come. How long will Zytega work, what will the months look like, how quickly will this hit an organ, etc.  My dad continues to lose a lot of weight despite eating a lot of food.  He is taking meds for urinary incontinence, has regular pain, low red blood cell count, etc.

I am his medical power of attorney and want to make sure whatever time he has left is the best he can. Any advice is helpful. How do you balance treatment options, quality versus quantity, and how frail patients become? 

[Tall_Allen]

IMO, it is tragic that he refuses chemo, which might do much to relieve his pain and suffering.

[lgutman in reply to Tall_Allen]

The MO told my dad he could always try one session and see how he does but my dad seems against it. Of course if treatment stopped working in 4 months my dad might change his mind. I have a feeling the Zytiga with Prednisone is going to work well and help. My dad is not stable on his feet, has no balance, no vision in one eye, limited vision in the other and according to the MO the chemo is really hard in someone like him.

[Tall_Allen in reply to lgutman]

The longer he waits, the less effective it is.

[lgutman in reply to Tall_Allen]

My dad fell earlier this week and is in the hospital waiting to go to skilled nursing before he heads back to his assisted living. The fall reaffirmed that I think chemo would be too strong for him. Ironically since starting Zytiga and Prednisone a week ago he is out of pain and not on any pain meds so I am curious to see the PSA in a few weeks as it was doubling every 3.5 weeks on Xtandi. Do you happen to know how long zytiga works on average for castrate resistant metastatic?

[MarylandGuy]

has he been tested for the brca mutation? If positive, that opens up some new drug possibilities

[lgutman in reply to MarylandGuy]

He has not. He actually didn't have any of your traditional tests because he was diagnosed in the ER with metastatic prostate cancer and the first scan showed mets to 8+ bones when he had unrelenting back pain. Previous to this entire thing my dad barely took an aspirin. I don't think he has the BRCA as breast cancer runs in my mom's side and my sisters and I were tested and we don't have it.Honestly I am having a hard time with how much to push and how much not to. He had a three hour neurology test scheduled for next week due to vascular dementia and his palliative care doctor and I agreed it wasn't necessary because vascular dementia is pretty slow growing. My dad is adoment that we will not have a biopsy on his prostate and he has no interest in an infusion chemo. He is so unsteady on his feet, has already broken one hip and several months ago had multiple falls. The other day he was having stomach issues and could barely get to the bathroom on time. He is really frail and my hope/wish is that he is comfortable. My dad is a lifelong smoker and we learned has COPD and bottom of his lungs are caved in.

I always thought my dad would pass in his sleep from a heart attack. Never thought cancer. This is a terrible disease and my heart hurts that you all are on a journey that you shouldn't be in.

[MarylandGuy in reply to lgutman]

Thank you. If he has the BRCA mutation, other treatments like parp inhibitors open up. My psa was doubling every four weeks two (bone Mets as well) and a parp inhibitor stopped and reversed it. 1.2 one month, 2.6 the next. 4.8. Then started parp. 4.2 then 2.x.

[maley2711]

Well..... yes, so sad for what so many suffer with this and so many other types of cancer. His PSMA PET should be definitive re the diagnosis of metastatic PCa, so confusing to me why that MO mentions a prostate biopsy??? Genetic study?

Haven't looked at studies, but many participants here report acceptable SEs from the docetaxel chemo, and real benefit from its use. Is that the chemo suggested? Then again, your MOs comment about his frailty and how that factors into chemo expectations is not to be ignored? Seems to be a real crapshoot.....as is so much of treatment for any cancers.

Does that MO have an extensive experience base re PCa patients? I assume he/she does, or you'd search for someone else.

However your Dad decides, with your input, don't what if the decisions....that will only harm you and your Dad!!

[lgutman in reply to maley2711]

Thank you. My Dad's oncologist is at the VA here in Phoenix. Years ago the VA had a terrible ratings, news, etc. But the past several years it has been amazing. His team is wonderful. His oncologist told us when we first came that this was the #1 cancer that he treats, not shocking given most the folks at the VA are men. Each time we have been to the hospital, any time I send an email, I receive a quick response. Most of all my dad is happy and trusts his team. RE: the biopsy. The MO shared during this last visit(and before) that most men are diagnosed in far earlier stages of prostate cancer. Honestly, my dad ignored the symptoms of when it metastasized for almost a year. He ran random fevers, had lost about 30 pounds, looked more and more frail. I had asked him to talk to his primary care doctor about these symptoms. He told me he did on more than one occasion when I asked only to find our recently by looking in his charts that he never asked, and in fact never saw her. He was diagnosed with stage 4 in the ER in Oct 2022 and last year the MO told us had we not sought treatment when we did he most likely would have passed by that Christmas and we were very lucky it hadn't hit an organ. The MO said by the time he receives a prostate cancer patient he normally has biopsy results, and other tests for various markers, etc. But by the time he got my father he was so advanced they needed treatment right away and that a urologist will not typically take a patient at this stage unless there is plumbing related issues because the MO treats it, not the urologist. MO said we would need to go back and do a biopsy, get some genetic markers (I think that was what he said) to evaluate if there is anything that would work after this course of treatment stops working. My dad has refused a biopsy at this point and feels he doesn't want the possible side effects. Docetaxel is the chemo, said it was more harsh than others, but for some the side effects are manageable. He said in older, frail patients like my father it is very harsh and we could try one course to see if he did ok. My dad is not thrilled with that. There is something going on from a Neuro standpoint in my dad that has caused him to be so frail since before starting Xtandi. At one point he had lost 8 pounds in the 8 weeks between visits. He was a 6'2" man that is now shorter than me because he is so hunched over (5'5") and weighs in at 160 pounds. Yesterday his leg gave out and he had a fall. His palliative care team has moved him up to a longer acting form of morphine 2 a day with the ability to take oxy if needed as well. I don't feel like his MO is being honest about length of time. He keeps telling me that his cancer is slow growing, although there is progression that his PSA is rising (doubling every four weeks) but that at 2.8 he is very symptomatic. Unless arbitrone works wonders, my heart is heavy as Xtandi disappointed us with about a 34-5 month time frame before the PSA started rising.

[maley2711 in reply to lgutman]

yes, that makes sense......specimen from biopsy for genetic/genomic tests.....I know very little about those, but guys report that certain findings can open up "special" treatments if certain genetic types are found. Kaiser has not volunteered to do those tests for me? Gee, another question I can ask the young Harvard trained RO when we meet this Wednesday! Of course, just VERY slight amount but high risk PCa was found with my 18 sample/core biopsy. I did end up with an unusual problem immediately after the procedure....a catheter for a week.....had they been willing to wait longer for my full recovery after propofol sedation (if he has the biopsy, ASK for that!!!!!!!!!!!), perhaps catheter not needed!! But everyone in a rush to close the day surgery clinic!!!!!

Your Dad seems to be where my nightmare vision pictures myself someday down the road....so sorry, poor man. OMG!!!!!!!!!!!! Hoping for a heart attack first...many are I'd guess?

Yes, VA makes sense as a good place for PCa men!! Ours here is connected to the med school here...another bonus here. I'm not a vet though. You're great in looking out for your Dad..take care of yourself too!!

[Brendan1904]

Hi,

I am a lot younger than your father (only 72) but possibly more advanced along the journey. Xtandi worked for me for 2 years. Now on palliative Docetaxel chemo. My PSA has risen to 111 after 1st cycle, but my ALP has fortunately reduced from 1500 to 900 so they will continue.

Some questions I think you should ask your MO, but go with an open mind and don't rule anything out in advance are below. Keep questions simple and look and listen carefully for simple answers:

These are only my suggestions:

What based on his experience and knowledge of your father and current stage are his recommendations and what are:-

1. Palliative and other benefits of Docetaxel and what are benefits of not having Docetaxel.

2. Besides trying one cycle of Docetaxel to see, would it be possible to have a lower dose as the first cycle to try it out?

3. Are they able to give any indication of likely speed of progress of disease or is it still too early to guess?

4. What is his best advice and how quickly can you consider a future change.

5. How long before Docetaxel will become not an option?

These are just suggestions. As far as your fathers attitude to medication I can tell you when I went for diagnosis and treatment in March 2021, my GP greeted me with "you're the one who never comes to see me" (which was correct over the 30 years he has been our GP). My response was that I had only gone then because I felt I had recovered enough to feel up to going. He referred me straight to hospital for tests. When I met my Urologist for the confirmation of Diagnosis and he referred me on to the Oncologist, he queried what existing medication or supplements I was taking for anything. When I replied and said none because I didn't like any drugs, he replied I was at the wrong place. With my wife sat next to me I had to say whatever they prescribed and recommended I would accept without hesitation. It has been a lot worse for her than for me.

My logic is based on my lifetime career providing Financial advice. I often provided recommendations and sometimes offered choices as far as investments. A client could choose when their was a choice but, if I made a recommendation and they turned it down, I would tell them not to come back to me as they would need to find another adviser. I only turned 2 people away in all my career. All medical officers are under enormous workloads and pressures but always trying to do their best for patients. It is difficult for them to be sympathetic, offer advice maintain hope for us and continue impartially. We all want them to be personally involved with us in our treatment but they cannot be as they are not us. They need our honest, full and simple feedback to do their job and make suitable recommendations. Most of all they need us to be open to their recommendations.

At the end of the day it is you and your father and you must do what you feel is best and try not to look back other than to help with making the decision. Never ask what would have happened if you had decided something different - you can't change the past. Only ask "based on what you decided last time and what happened what is your best decision to make now". Only look forward, a good future is always ahead and still to come. Hope for the best but, don't be disappointed with the worst. I always expect that if things aren't getting worse then they will either improve or I am winning anyway.

Good luck and good hope. Please feel free to ignore and delete my ramblings as I will not be offended.

[Mgtd in reply to Brendan1904]

What an amazing piece of advice. I sure hope this is read by the father or have it read to him.

As the daughter this must be really difficult to deal with. All you can really do is be supportive of your dad’s choices. It is difficult on both of you in totally different ways.

[lgutman in reply to Mgtd]

Thank you for your kind response. I have to say my heart breaks in a million pieces every day. But I have amazing moments with my dad, and amazing conversations a long the way.

[j-o-h-n in reply to Brendan1904]

Brendan,

Great advice for all of us............ but you forgot to mention that during your entire career as a Financial Adviser you only turned away 2 clients which actually were the only 2 clients you ever had 🤡

Good Luck, Good Health and Good Humor.

j-o-h-n

[Brendan1904 in reply to j-o-h-n]

Ha ha, you found me out!🤔

[maley2711 in reply to j-o-h-n]

wicked!!!

[lgutman in reply to Brendan1904]

Brendan--

Thank you for your response and your story hit home. I love how you let two clients go for not following advice. I work in financial services (I am a CFP and lead a team of them) and I can relate to how many folks don't follow advice of professionals over the years!

My dad has done everything his MO has recommended and trusts his doctor. My dad is very much against Docextal. I think if it was a pill he would be more open to it. When I was alone with the MO (after my dad left to smoke) I was able to to talk to the MO more and he shared that we could always do a lower dose, try one see what he thinks but that his experience was in older and frail patients like my father it would most likely be very harsh. My dad struggles to get up from a chair, things like a shower exhaust him. He went from being able to take the light rail and walk to the grocery store to being very sick within a year and now 18 months past the diagnosis honestly looks like we have very few months to live versus years. He is very symptomatic from the cancer despite his testosterone being at 29 and his PSA being at 2.8. He had a brain scan done last fall that showed some neuro degenerative changes which could be at the heart of it.

In terms of the spread of the disease, it is in the majority of his bones, all up and down his spine, shoulders, femur, are, ribs, skull, it feels like in all bones but as of his last pet scan it is not in an organ yet (but there were more Mets to the skull which I read was pretty rare.) He is also very symptomatic and has both osteoblastic and osteolytic lesions.

The MO's advice was to give the arbitrone a chance to work. He said if my father was not so symptomatic he would have kept him on Xtandi longer even with a rising PSA and tested every 4 weeks and let the PSA rise a little longer to get more time out of it. But that my dad needs quality of time over quantity.

With that being said, we went to a longer acting form of Oxy and are not on a morphine based and my dad was a zombie this weekend.

[Brendan1904 in reply to lgutman]

Thanks and good luck again. I think the doctors are being as honest as they can be about his prognosis. My research indicates they are very unsure until every treatment has expired and we only have less than 2 to 3 months max ( possibly only days or weeks). They also try to be optimistic which is understandable. With his PSA so low sounds he has a long time to me, provided it doesn't get an organ. Mine was extensive in all my bones and now in cranal cavity also. Not in small bones as apparently the cancer doesn't affect those. My palliative docetaxel every 3 weeks is up and down so I can understand him not wanting it. However I knew there was only a short window of opportunity for me so I had to go with it. So far still waiting for it to start reducing my PSA. Currently 111. But I am more worried about my high ALP.

[rsgdmd]

You might ask about gabapentin for the bone pain. That has been (largely) keeping mine in check.

[lgutman in reply to rsgdmd]

Thanks. My dad has been on gabapentin since initial diagnosis.

[winkoliu]

Have you tried Pluvicto?

[lgutman in reply to winkoliu]

I just read about it. I believe that is the internal radiation. Not sure my dad is a candidate for it because he hasn't had chemo. The MO mentioned that after Zytiga we didn't have a lot of good options based on my dad's current condition but we will see what happens at that point. My dad fell this week and is in the hospital and transferring to skilled nursing before going back to assisted living to build strength.

[winkoliu in reply to lgutman]

One condition is the patient should be post-chemotherapy . The other condition is the patient’s PSMA should be positive. As far post-chemotherapy, you can ask the MO to provide low dose preventive chemotherapy or you can pay by yourself for the treatment if your MO agree and confirm Luvicto is good for your Dad.