We had a meeting with Dad's oncologist this morning, he said that they are finding it difficult to control Dad's pain and his blood work is still poor his hemoglobin keeps dipping to 7ish 3 days after having a unit transfusion (highest its got to is 8.9) Oncologist said the disease is in pretty much all his bones.
Dad asked about time line progression, he was told 1-2 months with no further treatment.
I can't actually process that. I just can't, we just went for a walk around the grounds.
Chemo is risky but they will do it with platelet transfusions but he will have to stay in hospital.
I can't think I don't know what to do or what to ask.
Edit to add.
We saw Dad's radiation oncologist Osama who has said to not think of numbers, only God knows that information. He will do some more spot radiation for Dad's rib pain which should reduce some of the burden on the pain meds he is taking that they are finding it hard to manage. He said to take each day as it come, with rest, nutrition, movement, medication and spot radiation when needed. In a few weeks he may feel stronger and his levels may improve we can look at things again. Dad responds very well to Osama who is very straight but a lot kinder in delivery.
We have a meeting with paliative care shortly. I feel a bit numb. I can't give up hope.
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Nickhmcg
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With all due respect, it might be time to accept comfort care for your father and cherish your remaining time with him. A comfort care setting will hopefully control his pain and allow him to spend his remaining time in the company of his loved ones. I'm so very sorry.
Thank you, I completely understand and I have always told Dad that I will support him 100% whatever he decides to do. This is his journey and its his body that is in pain. I just can't help but feel that this can't be it. He is so strong and determined, his disease is just in the bones no organs, I'm aware it is aggressive but I've read of so many cases where people seem so much "worse" and have more options /time.His oncologist didn't want to entertain any other treatment options it was chemo which he said was risky and that was pretty much it.
I know his blood levels are an issue, but surely there are steps that can be taken to try and improve these? Stem cells transplant? Bone marrow transplant?
Thanks Mágnus we have done Xofigo, his levals started dipping after the 6th infusion. Since xtandi failed I asked was there any other 2nd line hormone we could try he said they won't work.
Just saw that you have written no genetic mutations but I think a recent trial from the Marsden suggests it may help in any event - hopefully TA will be able help.
I think there is a more in depth test but involves taking a sample from a met - I don't really know if it is more comprehensive or not but hopefully someone here can help with that.
I specifically asked as I know from reading cases on this group that people have tried. I am going to compile an email to his team with various questions I will add this thank u Mágnus
Every dad would be blessed to have a daughter like you.
You can ask for a somatic genomic test (biopsy of tumor tissue) - there are a couple of things that may be actionable if found. It is always good advice to live in the present moment, and take each day as it comes.
Thank you Allen, would his blood levels need to be improved for the options that may transpire? Current Hgb is 7.8, platelets 25. They did mention platlets transfusion if doing treatment
Don't want to lose your dad and don't want to lose you. You have been such a presence here. I've never said so but your input on behalf of your dad has touched me many times.If, IF, it comes down to chemo then Cabazitaxel as shown in the CARD trial might have good results and might "sensitize the cancer cells" to react to Xtandi or Zytiga again. I realize though that his bone marrow is a issue but hopefully transfusions can keep the Cabazitaxel treatment going and it is milder in SE's than Dox/Taxotere
CARD TRIAL--( Cabazitaxel Versus the Switch to Alternative AR-targeted Agent (Enzalutamide or Abiraterone) in Metastatic Castration-resistant Prostate Cancer (mCRPC) Patients Previously Treated With Docetaxel and Who Rapidly Failed a Prior AR-targeted Agent (CARD))
I am so sorry to hear your oncs news, Although, If I listened to my urologist xs (2) and two oncologist I should be long gone. You will truly know when the time comes. Hes been through a lot of treatments. I am not sure of your travel or financial situation. But Dr Nordquist in omaha Nebraska has helped a lot of late staggers like my self. He bought me two months of time to transition to Lu 177, a 563 psa down to a 1.6, get a second opinion. If the time is here and now enjoy everyday love, laugh and have no regrets. Best to you from my heart.
It only works in about 28% of cases but it seems as though at first look as though SEF chemo may be worth investigating.I’m not sure to what degree it’s been tested but might be worth looking at as I say perhaps at this stage.
God bless you your obviously in pain yourself, l know how it feels . But lve said so many times please dont give up hope. My husband lived through pancreatic cancer the Doctors didnt really give us any hope he was just so poorly. But 30 years later he's helping me in my fight with ovarian cancer. My love prayers are with you both, Dads are so precious sending love & hugs SheilaFxxx
Has your father had R223 which is on the NHS in Uk and privately Lutetium 177 but expensive can get it discounted if oncologist refers to Novartis drug company to ask for discount on compassionate grounds, NICE to licence Ku 177 in UK hopefully in November but my husband can’t wait we are paying privately for Lu 177 start in a week. Also you could email specialist nurse on Prostate Cancer Uk website found them helpful
Thank you he has had the full 6 Radium 223 which finished in December, unfortunately that's when his blood levels started tanking. I was hoping if things turned around for him that Lu177 could be an option
Also think about yourself. Make sure you're getting enough rest, food, and everything. You can't care for your dad if you're not well.
This is a big deal; I know that's obvious but one of the first things in coping with a situation is to realize that you're correct in being overwhelmed. You should not have to bear the burden alone though; family, physicians, and other advisers can help. Then find a strategy which is what you're doing now. Palliative/hospice might be the best thing but make sure you consider all your options.
What is your dad's outlook? Does he want to soldier on? If so, consider trying to fight it. Because I haven't dealt with this myself, that's all I can say. FWIW, I'm 2 years in to stage 4 prostate cancer so I can relate somewhat.
Thank you for your reply, Dad does what to live but he doesn't want to get treatments that will do ish his quality of life to nothing and I completely respect that, he has said from the beginning he doesn't want to be wasting away in a hospital bed. I have taken some of the suggestions here and will speak to his team next week. He is taking onboard what his radiation oncologist has said and is taking one day at a time. Unfortunately he has an infection today so needed antibiotics, they have changed his pump meds as he was getting a bit toxic from them but consultant on today says he is stable nothing to worry about these things sometimes happen in hospitals. He has just eaten his lunch after a sleep and is reading the paper. Wants to go for a walk afterwards. I'm following his lead.
Sounds like you're figuring it out. You haven't mentioned your support and it's none of my business but I've found so far that everyone has helped me remain positive. If there are people you haven't leaned on yet, now might be the time. And obviously people in this group.
Day to day is the only way to go IMHO. There are too many possibilities.
Be grateful for all the time you can spend with him.
Nickmcg, my brother had a blood test through Foundation One that determined his mutations. He was able to go onto Keytruda which worked for eight months. It was a simple blood test. Fortunately, he has a kind and caring and brilliant MO. His radiologist was also an amazing man. They are warm and compassionate while being realistic. No doctor has the right to set a timeline.
Dads are special and I sense your strong bond with your father. I’m praying for you both that you find the right treatment. Hang in there.
You can hold onto your hope but change your goals to a peaceful, less-pain passing. I Had to submit my brother to hospice care last year and it was a blessing to see him pain free, not suffering and accepting his death.
“ Only God knows” I agree .. Your dads situation is brutal . He has you .My dad got knocked down and out at 71 .. But he went by the heart . I pray for mercy for you father not to unduly suffer .. Stay strong . He needs you now🙏💔
When first diagnosed I had a doctor that said the time short for me, so I found a different doctor. It’s fine to see multiple doctors and get a variety of opinions. You can keep your current doctor while you explore others
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Scared for the future
**UPDATE** & Help Needed - Dad with PSA 1200 stage 4 Original post is linked below
PSA raised rapidly after 2 months finishing chemo
three months into treatment. Update on outcome and next step please.
After 2 years and 8 month vacation PSA back up 0.3 what now?
