ADT failure

[lgutman]

We saw my Dad's MO on 5/23. Over the course of 4 weeks my dad's PSA moved from 1.46 to 2.14, He said we need to be on Zytiga for three months before we can deem it a failure, but just like Xtandi, it appears my dad had limited help with it. We have talked about the next steps, chemo and pluvicto. My dad has widespread bone mets and was very advanced at the initial diagnosis. His MO feels really strongly that chemo is not a great option for my dad with his frailty and even has concerns that going on it could not the performance status of my dad down which would lead to a problem getting Pluvicto. He has had three patients who were approved to go straight to Pluvicto bypassing chemo. The goal is to retest PSA at six weeks, do a petscan, and decide the next steps. He mentioned the possible need to do a biopsy somewhere. However, I remember when my father broke his hip 18 months ago, they did a biopsy of the tissue all around and inside the hip. The biopsy stated the following:The neoplasmdemonstrates moderate NKX3.1 (prostate marker) and is negative for PSA, CK7, CK20

and CDX2. Based on the histomorphology coupled with NKX3.1 positivity, the findings

are consistent with metastatic prostate carcinoma. 

Does this mean anything for treatment options?

Thanks! 

[Tall_Allen]

I suggest he get an FDG PET too. Those low PSA subtypes often don't express PSMA either.

[God_Loves_Me in reply to Tall_Allen]

Learning questions: When I ask for an FDG scan, the doctor says no for random reasons, like no need. How can I come up with a strong reason and get an FDG? I haven't done it yet

[Tall_Allen in reply to God_Loves_Me]

Do you have a low PSA subtype, or getting Pluvicto treatment?

[God_Loves_Me in reply to Tall_Allen]

Ok so I can ask while getting pluvicto treatment

[Tall_Allen in reply to God_Loves_Me]

No, before.

[God_Loves_Me in reply to Tall_Allen]

Agree. Thank you.

[gsun in reply to God_Loves_Me]

Cancer may not express PSA. FDG sees the uptake of glucose in cells. Cancer cells take up up to 200 times the glucose of normal cells.

[Doctorsceptic]

You mention he is frail, how old is your dad??

[Doctorsceptic in reply to Doctorsceptic]

Just noticed the answer to my question about your dad's age - 81yrs old - in your very complete summary. His situation sounds grave.

There is a very important balance to be struck in this situation between pursuing every possible medical therapy with all the attendant side effects, visits to MO, hospital visits, tests and all the rest, and on the other hand asking how does your dad really want to spend the remainder of his life? Nobody wants their dad to die and I empathise with your situation but some really honest talk between you, your Dad and his oncologist are needed to decide the best way forward for him.

I cannot tell, but is it possible that your Dad is going through all this because he does not want to upset you by saying 'no more please'??

I apologise for putting it like this and I wish you and your dad well.

PS I am 78 and hitting the same questions with my prostate Ca.

[lgutman in reply to Doctorsceptic]

Thank you for your thoughts..see my long response below .

[Concerned-wife]

it appears his SUV expression is low. It is my understanding that that is when Pluvico is not as effective. And why they might wish to order a FDG scan. Is he receiving care from a Center of Excellence. If not, perhaps use this time to get a second opinion from one. You might be able to get one virtually

[lgutman in reply to Concerned-wife]

My dad is treated at the VA and according to the MO it is the #1 cancer they treat. My sister and did a lot of reading 18 Months ago when we started in hormone blockers and the treatment course we were on. My dad didn't want to get a second opinion outside the VA as he had received excellent care. Additionally my dad said he had no interest ina prostate biopsy due to side effects. In the beginning the Dr said the hormone blockers could last years but I saw Xtandi failing at two months based on the cancer pain and at 4 months the Dr agreed.

Two months ago my dad was hospitalized for a fall at a non VA hospital as I specifically sent him there as a second set of eyes. There were a lot of tests done but we're unable to do a MRI of his lower spine as my dad could not lay flat due to pain in his back. They were going to put him asleep for it but in the end the neurologist and I agreed it wasn't worth it because he couldn't do surgery for spinal compression.

[Concerned-wife in reply to lgutman]

Perhaps discuss whether radiation of any mets might help his pain. He is lucky to have you snd your sister!

[Shamrock46]

I'm sorry your dad and you are going through all this. You've mentioned that he's 81 and frail with known mets, which I'm assuming cause pain as well. Have you ever discussed all the options with him including the fact that the meds have failed and that chemo is not viable according to his MO? Having faced such things with my late husband, it might be time to ask the even harder questions such as how much is your dad willing to endure to keep going. His PSA is rising quickly and it might be a sign that the cancer is getting more aggressive. When my husband found himself at this stage he refused scans because his MO agreed that any findings wouldn't change his treatment or prognosis. He also stopped the lupron and Xtandi since it was clear they had failed and he was suffering with worsening side effects. He then joined palliative care and later hospice care. We both knew at the onset that this would happen at some point and by taking control of it in making the hardest decisions, he would do it on his terms. This is a harsh, dreadful disease with no cure and harder and harder decisions to be made on the journey. Only your father can make the final choices if and when he's ready but you can help by supporting him. If he accepts palliative care, the team will provide both of you with more resources and support. You're a wonderful daughter to help him through all this and I wish both of you blessings as you face it together.

[lgutman in reply to Shamrock46]

Thank you. How long was the time from when you stopped treatment until the end? I have talked to my dad about all of this stuff and dying..he doesn't want to have those conversations and can't understand why anyone would not seek out treatment. I shared that with his MO and when we were alone he told me my dad is definitely a patient that will want to exhaust everything and that at some point my dad won't have the ability to fight and he will come to accept it. Honestly I think my dad truly believes he can beat this. My dad's pain has been minimal in the past three weeks. I think the steroid is giving him an extra pep in his step. He is also having a great quality of life right now at assisted living and has made a ton of friends.

I do not want my dad to do chemo. I can tell my dad's MO doesn't think it is a great idea as well, but is willing to try a half dose but would really prefer to go Pluvicto and shared he thinks he will do nicely on that and it will help with bone pain. My dad went from not wanting to do chemo months ago to now wanting to try it. Even with me saying I am not so sure about it.

I know my dad will pass away from this dreadful cancer. I also now the hardest days are coming towards the end of the summer/fall/early winter. When xtandi really failed my dad's PSA doubling time was 3.5 weeks. Now it is slower at 1.6 months.

He has had an amazing palliative care Dr who is wonderful. I trust her and we work together to make sure my dad is feeling good.

I appreciate your thoughts and my heart goes out to you and your family.

[Doctorsceptic in reply to lgutman]

I have read your replies . It’s tough and I am very glad you have good palliative care.

[Shamrock46 in reply to lgutman]

He had his 2nd recurrence at the very beginning of 2023 with PSA doubling/tripling. We knew the cancer was more aggressive as we were told it would be and due to pain and side effects, the writing was on the wall. The other options he was offered would have caused more serious side effects and possible hospital stays, which he didn't want. He had his last lupron shot in January and stopped the Xtandi soon after. The lupron was causing the beginning of memory problems and the Xtandi was affecting his ability to stand and walk so at his April appt. with the MO he said he was done. She said w/o treatment his prognosis would be about a year and he, in fact, died this past April while in hospice care. It wasn't an easy decision but there was very little choice by that time. He knew he was feeling worse and wanted to just stay at home with me until the end. He was done with doctor visits, shots and tests. He was tired of being tired. You're right about the tough days at the end, but the hospice team was wonderful and helped us a lot. And it was much better for all of us that it happened at home instead of in a hospital. Easier....no....but just more personal. I'm glad you have a palliative care doctor you trust. If when the time comes I'm sure she'll help you transition to hospice. Each day becomes more precious.

[lgutman in reply to Shamrock46]

My heart goes out to you. That is so hard and sad. When my dad was first diagnosed it was stage 4 and he had mets to over 8+ bones and his PSA was 137. Our MO was worried before his petscan that it possibly hit an organ. In fact he told us had we not took treatment at the point we did my dad would have died by Christmas, which was about 9 weeks after diagnosis. I know in my heart when the treatment fails his PSA and cancer will run fast and hard. It was interesting to see your take on Xtandi. This definitely caused a lot of neurological side effects with it in my dad and his QOL really went down. Zytiga seems to have improved it for the time we are on it. But the cross resistance is there. My dad had so many falls on Xtandi that any of them could have been the end.

I sent his palliative care Dr an email this morning to schedule some time to go in and see her. My dad seems to trust this woman the most. When my dad was first diagnosed she told my sister and I he was on the last 1-2 years of his life. This Oct 22 will be the two year mark.

[j-o-h-n in reply to Shamrock46]

You may be a Shamrock but you're still an Ace to me...

Always like to see you around....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mgtd]

My heart goes out to you and I wish there was a magic bullet but we both know that is not the case. However, you and I are not your dad. Some of us take longer to accept what we and modern medicine can’t change.

You mentioned he sees a palliative care MD perhaps she can introduce hospice since he seems to respect her opinion. Hospice can and does improve the inevitable. At some point he may be more comfortable doing in home hospice care than being in a hospital ICU at the VA.

My granddaughter volunteers at a hospice on her way to med school. Just recently she gave me a book titled Being Mortal by Dr Atul Gawande. She did not know I had read it years ago. The sub title is Medicine and What Matters in the End. After reading this book some years ago I gave copies to some of my closest friends.

I suggest you read chapters 5 through 8. It may help you and therefore help your dad as time draws to a close.

I sincerely hope this helps and you take it with the good intentions I offer it.

PS If you are not a reader perhaps you might enjoy some of his You Tube stuff.

[lgutman in reply to Mgtd]

I downloaded the book today--thank you.I did read a book called "After the Diagnosis" as he was a speaker at an event that my husband had attended several years ago. It talked a lot how Oncologist are frequently not honest about a situation and I have used that information to arm myself as an advocate and a POA for my dad. Thanks again.

[j-o-h-n]

Being Mortal was named Best Book of the Year by The Washington Post, The New York Times Book Review, NPR, and the Chicago Tribune.

Through eye-opening research and gripping stories of his own patients and family, Atul Gawande, a practicing surgeon, has fearlessly revealed the struggles of his profession. Riveting, honest, and humane, Being Mortal shows how the ultimate goal is not a good death but a good life-all the way to the very end.

Good Luck, Good Health and Good Humor.

j-o-h-n

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

Great recap of the book.