My father may be dying

First, I'd like to say hi. I haven't been on here for over a year. I'm still on PARP inhibitors which seem to be holding the bone mets at bay, but my prostate has been enlarging so they may have to stop the trial and put me on XTandi. It's always nerve wracking to change therapies but this one has me puzzled. If the bone mets are being successfully controlled by the PARP, why not keep me on the PARP and then add a drug that controls the prostate? Because it's a clinical trial, that's why, and I am here for the drug, not the other way around!

Anyway, my father, who is 80, progressed about a year ago and they put him on Zytgia and that didn't work. Then they put him on Taxotere. For several months he took the drug and it didn't seem to be doing any good. So they tested him for BRCA2 gene mutation and he tested positive, so they switched to Carbo Platinum chemo and for two months it didn't do anything. Finally, it kicked in and his PSA started dropping.

The only problem was that he was wiped out from the chemo. He lost his sense of taste and couldn't eat much so he became malnourished over time. By the time the chemo started working, he was weak and sick and they had to stop the treatment.

He finally got into a clinical trial with a PARP inhibitor and he was very happy and optimistic, but after two month on the drug, his PSA kept soaring and went from 57 to 900 in about two months.

Now he's skeletal, he's hardly eating anything, he's dehydrated because he can't force himself to eat or drink. He's eating enough to stay alive, but he's gotten very weak, very thin. Some days he can barely get out of his chair. He's also fallen a few times which has never happened before.

So the bad news (can it get worse?) is that the doctor has put him on Xtandi but has basically said "We're running out of options and we may be too late!"

I know that an onco telling you that we are running out of options really enrages people because we live in a time when there seems to be so many new options. That's the key word: "SEEMS".

Can anyone out there give me a reality check? Do I resolve myself that he is in his last days and if the XTandi doesn't work, just let fate take its course?

Or do I fight for options! The trouble is, he can easily deteriorate and pass away at any time. Choosing an option may be just giving him another false hope?

I know people here on this forum have opinions about this. Please can I have some advice?

Thanks Jordan,

He is not much of a fighter these days. I have to say that the "bad news" was told to him by a local onco who is not a specialist, but they are in touch with a PCa specialist at Dana Farbar in Boston. He is the one who got my father into the PARP trial.

However, Boston is 5 hours of driving round trip and the last few times, it knocked my father out. He's refusing to take that trip again because he is so weak.

Dartmouth Hitchock is a 3 hour round trip so that may be an option. We're looking into trials there.

I have a big question. He didn't last long on Casodex and Zytiga didn't has much of an effect. But they took him off Zytiga in less than 2 months. Can it sometimes take longer to have an effect?

Also, if someone did poorly on Zytgia, would it be safe to say that he had a chance with XTandi, or no?

Just this week, the FDA approved "breakthrough status" for Lynparza. That means that it may become available "on label" for prostate cancer in as little as 60 days. They are considering it for castrate-resistant men who had a prior taxane-based chemotherapy and at least one newer hormonal agent (abiraterone or enzalutamide). Here's the press release:

Lynparza™ (olaparib) granted Breakthrough Therapy designation by US FDA for treatment of BRCA1/2 or ATM gene mutated metastatic Castration Resistant Prostate Cancer

- Allen

Dear John,

Mindful of what you are going through --- just wanted to let you know that others are thinking of you and your father right now, from across the miles.

Since you are both prostate cancer patients, you have that keen insight that leads to a true and heartfelt UNDERSTANDING of your father right now. That's priceless in this case ... you understand all the emotions ... the treatments ... the side effects of the treatments ... the medical aspects ... and you bring along the care and concern of a SON ... that's worth its weight in gold right now to your father. You have that keen perspective that comes from walking on this same path alongside of him.

When I was growing up in the 1970s, my grandfather was diagnosed with metastatic prostate cancer. Back in those days, there were no advanced treatments available as there are today. We were very close, and I visited him every day in his final months back in my hometown. Just a few years ago, my father was diagnosed with prostate cancer and underwent treatments. I was then diagnosed with metastatic prostate cancer in 2013, when I was in my 40s --- and have been pursuing treatments ever since. Ironically, my father and I are currently being treated by the same doctors.

I realize that I represent the third generation of my family to have a prostate cancer diagnosis. It gives me a different perspective, thinking of my late grandfather, my father's course of treatments, and now my own sequence of treatments. I often wonder which treatments available to me TODAY might have helped my grandfather back in the 1970s ...

Your message resonated with me, because I saw in your message the care and COMPASSION you are feeling for your father right now. My dad and I have this same incredible bond, that you likely share with your own father. I could honestly write a book about the meaningful conversations that my father and I have had over the course of time --- the life lessons we have learned together through all of this --- and the true understanding we have for each other, united together in a shared health diagnosis.

I'm quite sure that your father is grateful beyond all words for your presence in his life right now --- with the added insight you bring to the table from a common health diagnosis. I know you will be there for him and you will bring a lot of devotion and wisdom and and tremendous insight to the table. I wanted to let you know that I am thinking about both of you, and wishing you well --- sending some thoughts, prayers, hope, and courage along with this message.

Sent with caring thoughts to you and your father, John ...

Iowa State "Cyclone"

John
I was checking periodically to see if you'd checked in so its good to see your post.

That said, sorry to read of your father's challenges. My dad is progressing rapidly with an advanced cancer also (not prostate cancer) and it's hard to watch. I think we have to respect their wishes as to how to treat them. For my dad, he doesn't want to die, but he isn't interested in changing his current quality of life either in exchange for chemo. He was willing to do surgery but the surgeon closed him up without removing the primary tumor after seeing that the disease had rapidly progressed. I think we have to let them decide what is best and be there for them whatever path that ends up being.

My best to you and your father. Hope your dad gains some strength and can start eating and feeling better. Also, hoping your mets stay under control and that you find a way to get your prostate under control as well.

Take care and dont be a stranger!

John,

I can't offer much beyond moral support. I will mention that it took Zytiga three months to "kick in". I had to stop it due to liver impact, but my PSA continued to fall for five months after. We'll see if that continues in March. If it starts back up, off to Xtandi.

It gave me some time to try to deal with other issues.

JohnKeats,I am very sorry for your father, you and your family.
I am at work reading your post and at the same time crying like a baby. Several years ago I was in the same situation you are right now. I love my father very much and I did until the impossible to keep him alive, one day he asked me to let him go and that word hurt me so much, but I let him go and thanks God I felt very
satisfy because I always was with him. God bless you and your family.

John,
I can only echo what the others have said, but I wanted to offer positive thoughts and prayers your way. It seems PCa has knocked your family quite a blow. Billy BOb mentioned getting in touch with Todd. I think he would also be a good support for you, as he recently lost his father and his hero to cancer.
Keep in touch and know we are here for you during this difficult time.
Beth n Gary