Recent surgeries made my dad unfit for next treatment. Anyone else?

Posted by hereformydad @hereformydad, Jul 29 6:03am

Hi everyone. My 61 year old dad has stage 4 mCRPC he completed docetaxel in May with partial response. No genetic testing as of yet (I’ve requested several times). He has been on Lupron, Xtandi, Zytiga, and now Docetaxel. His disease is confined to bones only, but almost every bone is affected by disease. He is a patient at Memorial Sloan Kettering. His next treatment would have been Pluvicto but we couldn’t get to it because he had spinal cord compression and needed emergency surgery. This compression left him with weakness in both legs (it could have been a lot worse.) while recovering from this surgery his ventral hernia ruptured and perforated his bowel. He was hospitalized again and underwent surgery for that which left with a temporary colostomy bag. As if this was not enough, he broke his arm during this hospital stay while attempting to get off the bed due to how weak and fragile his bones are from not getting out of bed much. He underwent surgery for this and is now recovering, back to doing physical therapy and occupational therapy three days a week, and eating more again.

His oncologist stated that if his functional status does not improve, he would not be able to resume treatment and hospice would be the next recommendation. This sent me into a panic. Some say functional decline following hospital stays are difficult to improve, but then what is the point of physical therapists and rehab centers? If anyone has any advice or similar experiences please let me know. I am at a loss for words.

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celia16 | @celia16 | Jul 29 6:16am

I’m so sorry that you and your dad are going through this. Do you have someone to help support you?

gently | @gently | Jul 29 7:18am

hereformydad, that's one strong guy your dad. Eating more and the physical therapy will be improving his functional status. Was the oncologist more specific. The worry may be the bones. Is your father on any medications for bone strenghtening, does he have bone metastasis. ADT weakens bones and muscles. This may be the consideration with further delaying Pluvitco treatment. Often Zometa is given for individuals with cancer because it protects the bone even from cancer that is already in the marrow and importantly from fracture. A consultation with an endocrinologist might be helpful.
Sloan Kettering is a great place to be when you have cancer, but you may want an outside opinion and you might look at clinical trials.
What does your dad think. He might be stunned from the onslaught.
The oncologist might be stressing the importance of physical therapy to motivate you and your dad. He might be trying to ease you into the thought that none of us live forever.
Still, hospice isn't what it used to be. Many continue treatment in hospice. And people can and do come out of hospice alive and well.
I love that you are there for him.

northoftheborder | @northoftheborder | Jul 29 12:33pm

I was 56 at first diagnosis (I turn 60 this year), so not too different from your dad. I had 10+ hours of debulking surgery for spinal compression, but it was too late to prevent temporary paraplegia.

I also had a cascade of medical issues in the weeks post-surgery: prolonged ileus (unable to eat and lost 40lb), intravenous feeding, stomach tube, catheter, partial lung collapse, pneumonia, fluid build-up around my surgery site, blood clots in my legs (DVT), etc. It took two frustrating months before they decided I was maybe just barely stable to move from a critical-care bed to the physio rehab centre, where I spent another month and a half.

Long story short, I'm home, and almost three years after surgery my PSA is still undetectable and I can go for long walks again. There was lots of hard physio and many tough side effects from treatment between there and here, but I don't regret any of it.

Your dad's situation is a bit different because his cancer is already castrate-resistant, but my message is not to give up hope. When my health seemed like a series of dominos collapsing, and I couldn't even sit up to talk to my oncologist (they wheeled me around on a stretcher), I told him I wanted to fight and take a full curative dose of everything, and he and his team went along with that and promised to "throw the kitchen sink" at it.

Maybe that's not the right choice for your dad — everyone's situation is different — but if he wants to fight, he has a right to push for that. He may need to stabilise other parts of his health first, like I did, but in the end he's CEO of his care team and gets to make the final go/no-go decisions.

hereformydad | @hereformydad | Jul 29 9:03pm

@northoftheborder Wow, what a journey you’ve been on and so beautifully written it brought tears to my eyes. This type of story was exactly what I was looking for to give me some hope that there is a light at the end of this tunnel and a chance of recovery. I cannot thank you enough for sharing. My dad has the same fortitude as you and will do whatever it takes to beat this disease. I am so happy to hear that your PSA is undetectable and you are on the better side of things. Good for you for not giving up and I will pray for your continued success. - Michele

northoftheborder | @northoftheborder | Jul 30 7:58am

In reply to @hereformydad "@northoftheborder Wow, what a journey you’ve been on and so beautifully written it brought tears to..." + (show)

Best wishes to both of you on your upcoming journey. It comes with no guarantees, as you know. I have a weekly reminder that pops up in my phone: "Acceptance means coming to terms with uncertainty, not assuming the worst. The future isn't written yet."