Synopsis: my Dad was doing well on bicalutimide and Lupron, then did a walking tour in May, which left him very fatigued and set him way back. He had his 1st docetaxel treatment last week, 2nd Lupron shot yesterday. He is now off the bicalutimide. PSA was 150 at dx, 30 in April, 22 now.
My Dad met with his oncologist yesterday and his latest results show that the cancer has now metastasized to his liver. The onco said straight up that he will give my Dad 2 more docetaxel treatments and see what happens. If they don't help, he will recommend hospice. I'm just blindsided and kind of lost. My Dad is optimistic, which is good. But I'm so confused as to what is happening and why this is getting worse so fast.
Question: does the worsening of the cancer coupled with the PSA continuing to drop mean castrate-resistance? Or is there some other category that combination of events falls into?
Dr. Kim's office at Yale finally called but my Dad is saying he doesn't think he has the energy to go there. I keep telling him he needs to see a specialist, but he's been reticent about it.
I might be able to get him to do a phone consult with someone who does that. I've read some of the posts here and have seen the recommendations for carboplatin with liver mets. I'll try to ask about that... if we get that far.
I'm not sure what our next steps should be. The talk of hospice has really thrown me.
I know you all have had tough days too. Thank you for listening!
With appreciation,
Sunlight
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Sunlight12
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I would suggest getting another opinion, from a doctor that specalises in Prostate Cancer. I'm surprised they are talking about hospice at this point.
There are still treatments available such as Carboplatin chemotherapy, SIR spheres (Yttrium-90), LU-177 if his expression of PSMA is good. There is the VISION trial for LU-177 if he's in the US.
I would also suggest getting a biopsy to see whether there are treatable mutations such as BRCA1, BRCA2, or ATM.
Thank you for the suggestions, Gregg! I'll get to work on research, He is in the US, so I'll take a look at the VISION trial and see if I can connect with a specialist somehow. The onco mentioned a biopsy, but my Dad is worried about doing one. I know Foundation One offers a liquid-only test, but I don't know if that would give us the info we need?
I think the chances are good that he has some Neuroendocrine Differentiation. Those type of cancer cells tend to go to the organs and soft tissues. Short response to hormone-based treatments is also an indication. His PSA looks like it may be leveling out. Doing a biospy would confirm that, but I don't see the results changing the treatment plan for him at this point.
I agree with his current doctor about going to chemo vs second-line ADT such as Zytiga or Xtandi. But a more typical regimen for liver mets would include Carboplatin, possibly along with Docetaxel.
These are things to discuss with his doctor since I'm not a doctor.
To answer your question about liquid biopsy which looks at circulating tumor DNA:
It depends on what you are looking for.
The liquid biopsy is good for mutations such as BRCA 1, BRCA 2 and ATM which can be treated with PARP inhibitors so it's useful to find out if he has any of those.
If you are looking for neuroendocrine characteristics, you need to look at a tissue sample under the microscope. Knowing that definitely would help you determine the specific chemo regimen that would be best.
A little more info please...Was it a scan that discovered the liver mets ? What kind of scan ? Has Zytiga or Xtandi been tried ? How old is your Dad ? On his original biopsy, what was his Gleason score ? Where is he being treated ?
Hi Fairwind, my apologies for the dearth of info. I described myself as blindsided and it is accurate. My Mom went with my Dad to the appointment, so I am not 100% sure of the type of scan. I will find out and edit my post. He has not tried Zytiga or Xtandi. Dad is 72. He has not had any biopsy yet, original or otherwise, and consequently I don't know his Gleason score. He is currently being treated at St. Francis hospital in CT. When I first came on here, Tall Allen recommended Dr. Petrylak at Yale and I have been trying to make that, or an equivalent, connection for the last few months. We tried calling the office directly, but they didn't respond. The onco knows Dr. Kim in that office and said he would have them call. They just (finally) did so, yesterday. But my Dad is saying he's not sure has the energy to make the trip. I'm trying to figure out how hard to push him on this. I am completely convinced he needs a PCa specialist. I have been since the day he was diagnosed. But the decisions are not absolutely in my hands.
Hi Sunlight, I reviewed your earlier posts, is your dad still seeing the original doctor that he was unhappy with? If so a second opinion from any oncologist seems long overdue. I'm going to go against popular opinion here and say that while he does need a good and competent oncologist, it does not mean he needs to travel far to see a specialist in prostate cancer. Whether or not his liver mets respond to carboplatin depends largely on the cancer, and not on who is administering it. Personally, I've avoided travelling to Dana Farber in Boston even though it has an excellent reputation. I find the city stressful, and stress will make the cancer worse.
I think you are on the right track with carboplatin, and may want to also search the forums for the term "neuroendocrine" as well. This would be a mutation of the cancer that has an easier time spreading to organs and does not put out PSA.
And of course, the decision of how long and how hard to fight ultimately rests with your dad. That said, you will want to make sure he's not suffering from depression that skews his thinking when making such important decisions.
It's really unfortunate that your dad is dealing with further progression so soon after diagnosis. I imagine you're completely overloaded right now. Please take my advice for exactly what it is: my personal opinion based on how I've decided to handle my own cancer.
Thank you so much for your thoughts, Tom! I appreciate your taking the time to share them so much! The story and the logic is helpful to get my brain functioning again instead of just feeling dread panic. The onco is still the original and I have disliked him from the start. My Dad was on the fence and currently feels the guy is acceptable, although a little too negative. I have read some posts here on the neuroendocrine variation..I'm not sure if that is what this is. I'll have to re-read up on how to tell. There is so much to research and then communicate and I am so tired. I know that makes it all harder. The good news is that my Dad said he has been sleeping much better the last few nights (I got him some CBD to try and he thinks it is helping :)).
No problem. This also helps me sort through all the thoughts in my head. Just this past week my wife and I were having a philosophical discussion about whether I would even want to travel to Germany to get Lu-177 if it eventually reached a point where that was one of my few options. I don't even have a passport! We also talked about living wills and when enough would be enough. All that while I'm in good health at the moment.
There's a lot to process. Having to do so on an accelerated timeline has got to be overwhelming.
I don't think that carboplatin helps with liver mets that are not neuroendocrine? But his castration resistance in spite of falling PSA may indicate some kind of non-PSA-producing cancer, possibly a mixed type with neuroendocrine. Here are some clinical trials for it:
I did that and when the police arrived I told them you told me do it. When the Doc fell he hit his head on a metal desk and now I am facing a first degree murder charge. Thanks for the advice now I have 2 choices death from PCa or death from the electric chair which ever comes first.
I’m in Australia and we don’t have the options I have read about on this site , and I can only imagine your dad is feeling a bit defeated, but I feel sure there is more that can be tried
Thank you very much for the thoughts, Bebby! I think you and all here are right - we need a 2nd opinion. Very best wishes to you in AUS...I hope the options we have -and better ones! - will make their way to you quickly!
Thank you for the recommendation and solidarity, DSEE! It is much appreciated Very best wishes to you with your treatments! Sending positive energy your way!
Thank you for the added info! It sounds like we really do need to do the biopsy and the genetic testing. I'll get all this to Mom and Dad and see if I can convince Dad to go ahead with it.
Thanks so much, Nal! Getting Dad to a specialist and convincing him to do a biopsy have just moved to my top 2 priorities, based on all the advice here.
I got a chuckle out of imagining you giving this dr a good uppercut. I was (perhaps fortunately ) not in the office for the appt, but I was pretty steamed when I heard about it!
I like your no bullshit attitude. Keep up the good work. And, some jail time might have been worth the satisfaction. I fire doctors too. They are not gods. I see myself as a customer , not a patient.
Next time, I hope you have your running shoes on before you see the doctor !!!
Hi Sunlight12, sorry to read you are all going through this. My dad has liver mets and had a biopsy that confirmed it was small cell cancer. He has just had his first dose of Carboplatin on Tuesday. I would say this seems to have taken a long time for us as his mets were discovered in a scan in April and the process af another scan and biopsy seemed to take a long time. There has been no mention of a hospice for us and my dad was already pretty week before they found the mets. Coincidently it was after a walking holiday that left my dad sore and fatigued that we eventually discovered he had stopped responding to the hormone therapy. Not sure if any of this helps but hope you manage to get the answers you need for your dad.
Sem, thank you so much for sharing this story! Yes, it helps tremendously! This sounds extremely similar to my Dad and it's so heartening to read a more positive possibility for this situation. I appreciate the good wishes tremendously! All my best to you and your Dad as well!
I love your spirit! And your positive attitude ..."and he got away" made me laugh - you sounded a bit disappointed :)...I confess that in the heat of the moment, I would have been disappointed too..I have come to realize that sometimes the opportunities we miss are for our benefit
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