Started hospice

[lgutman]

My dad has had a significant decline over the past three weeks since seeing my dad’s oncologist. We had a petscan that showed an advancement into three new bones and the old cancer that was “sleeping” has woken up. Zytiga never worked.

About two weeks ago my dad started sleeping 15-20 hours a day and a week ago the pain came back with a vengeance. My dad, who was already walker-dependent can hardly ambulate at this time and we started hospice last week.

I have learned a lot since my dad was diagnosed a short 19 months ago. The first is if you are diagnosed at stage 4 do chemo, or as many treatments up front as you can. You will never be stronger than on that day. We were scheduled to see my dad’s MO this week and while we were pretty confident in not doing chemo or Pluvicto my dad’s change from performance status 2 to 3 has removed that option.

The next request I have is please don’t be stubborn with your kids. We tried to have conversations with my dad about his wants. His palliative doctor did too. At our appointment three weeks ago, my dad just said he did not want to be bed-bound and he was formulating his thoughts and planned on talking to his daughters. He had been telling his friends for 15 months he was going to beat stage 4 cancer and was never worried about what came next. I have always loved my dad’s ability to not worry about the future. He is the most upbeat person in the world. Even with the decline. But it is hard on adult children not to have hard conversations.

My dad has widespread disease right now–but as of a week ago no organ involvement. But he is hardly eating and sleeping a lot and we put a fentanyl patch to help the pain and it has.

Skull/skull base

Cervical spine (C3 vertebra)

Thoracic spine (T8, T9, T10, T11 vertebrae)

Lumbar spine

Bilateral scapulae (shoulder blades)

Bilateral ribs

Sternum (breastbone)

Pelvis

Iliac bones

Acetabulum (hip socket)

Sacrum (lower spine)

Bilateral proximal femurs (upper thigh bones)

The July 2024 PET scan showed progression of the skeletal metastases compared to the February 2024 scan, with increased size and tracer uptake of existing lesions as well as new lesions appearing in the skull, clavicle (collarbone), and ribs

[Cape1]

sorry to hear that. What is his age , diet and any co morbidities.?

[lgutman in reply to Cape1]

81, was diagnosed at 79 at stage 4. Had a heart attack 20+ years ago but didn't take even an aspirin or any other medicine before his diagnosis.

[Tinkudi]

Sending you much love and hugs. My heart goes out to you all. 🤗❤️

It’s so difficult to decide on this chemo dilemma - to do or not at advanced age.

[lgutman in reply to Tinkudi]

If your dad is strong right now. Go at it with all your can if he is stage 4. He failed first hormone at about 9 months and was doing really good. Zytiga failed within 5 months and the pain from the meds came back. Zytiga gave a four week tick down. And then PSA started moving. My dad's PSA hasn't been a great indicator of his pain--although he was diagnosed at 137. His ALP was over 1000 at diagnosis.

[Tinkudi in reply to lgutman]

He is 83. Is normal as in functional but I would not say strong. One doctor said also if he is functionally ok he does have the heart , lungs , liver etc of a 83 year old ! I am so conflicted about this chemo issue , especially since tall Allen always supports triple therapy

You started zytiga after ADT failed and not together ? Did you try xtandi too ? What about the new radioactive treatments ?

[lgutman in reply to Tinkudi]

We did Xtandi before Zytiga because of the steroid you have to take with Zytiga. I was upset with my dad when he wanted something different because I read Zytiga is normally best as the second drug. We had palliative radiation to painful bone mets multiple times and that resulted in him sleeping 18 hours a day for ten days. We were looking at Pluvicto but had some concerns for the fatigue side. Additionally I read an article that said in the 75 and older Pluvicto can normally only be tolerated for 2-4 treatment cycles. My dad would also have to isolate after, his immune system would be lowered, and all the things he enjoyed would have to be stopped for a period of time. Bit his MO and his palliative care agree in patients like my dad he would do worse not better and they felt (when pressed) it would not give him any additional time. I will say the decline we are on is much faster than both of the doctors thought would happen and part of me thinks he had another mini strokenor something else.

[Tall_Allen]

I'm sorry for all you are going through, and your father's declining status.

"if you are diagnosed at stage 4 do chemo, or as many treatments up front as you can. You will never be stronger than on that day. " Great advice!

"But it is hard on adult children not to have hard conversations." I think it is also a difference between men and women. Women are so much better than men about talking about their feelings. When my father was first diagnosed, his oncologist arranged for the whole family to meet with a psychotherapist who facilitated a discussion. Sometimes it helps to have that kind of outside intervention.

[lgutman in reply to Tall_Allen]

That is amazing. I had pushed conversations early in and my dad always said "I am not worried and don't want to talk about anything other than today or tomorrow." It is a great attitude in facing cancer but hard on the kids. He also refuses to sign a DNR even with the team explaining if he went down they would crack ribs, sternum, etc because of the cancer and what it would mean. But that is ok too. You all are amazing in this community and I appreciate it.

[Wdoug]

Sad news. Thoughts and love to you and his family.

[Teacherdude72]

I totally agree with Tall Allen on your statement. "if you are diagnosed at stage 4 do chemo, or as many treatments up front as you can. You will never be stronger than on that day. " 100% the best advice!

Be strong and talk with your dad when you can, even if he doesn't participate or is awake. He will hear you.

[Tinuriel]

I applaud you for making the hard choices, and having to do so without being able to have those clarifying conversations with your dad. You are loving him well.

[Survivor1965]

always hard to read these. Prayers out to you today

[Yank66]

You’re in a tough place. Someone on the hospice team may be able to facilitate the conversations with your dad. They are as skilled at communications as they are at pain relief. Try reaching out to his hospice nurse or social worker. Our best to you and your dad

[Wvdb]

I am so sorry for what you are going through. My husband was diagnosed at Stage 4 as well. He has had radiation for pain, chemo, hormone therapy, and Pluvicto which he just opted out of last week. When he was diagnosed his PSA was 315. Test today showed 615 after 3 Pluvicto treatments. He doesn't discuss things willingly with me either. Praying for your Dad, you and all of the family. I know how hard it is.

[j-o-h-n]

Some say that "men are men" means being emotionally unavailable. God Bless you all...

Good Luck, Good Health and Good Humor.

j-o-h-n