Stage IV with bone mets looking for advice on how to keep spirit up

[SkidiJay]

Dear community,

my 67-year old father has been diagnosed with prostate cancer stage IV (PSA 57, Gleason 4+3=7b; cT4 N1 M1b with mets in pelvis and lower spine). Some context on him and us: He was enjoying his job as a voluntary janitor at our local church, which kept him physically active, as well as doing some wood work. At the same time, he is caring for his dement mother who lives next door and another elderly gentleman in the village whose children leave far away. He's not much of a talker, rarely complains or opens up about his feelings, so more of a grumpy person generally. When I told him I was pregnant and he'd be a grandfather in December this year, he and my mum were over the moon. He never went to see a urologist, but had trouble urinating for the past one, two years.

He had a kidney congestion in September for which he was treated at the hospital with a renal catheter. On a side note, as this will be important later, this hospital stay didn't go that well because his renal catheter was blocked within days and it took the staff two days to find out about it while he was in very severe pain.

The doctors also checked his PSA (came back 57) and he had to return to hospital to do a biopsy of his prostate and bladder. The result came back as indicated above.

He is supposed to start his treatment on Monday with the following treatment plan:

- 20 sessions of radiotherapy to treat a met on the spine, starting Monday next week.

- 10 days of bicalutamide as flare-up followed by triplet therapy with 6 cycles of docetaxel + ADT + darolutamide.

Until yesterday, he said he'd do everything the doctors say. However, I noticed that after his return from hospital where they did biopsy and put in the renal catheter, he rapidly lost weight and he was constantly tired, sometimes with fever at night or pain in the lower back, all of which he hasn't had before.

Today, he woke up with severe pain in the kidneys and went to the ambulance, where they said his catheter needed exchanging. It took eight hours for a doctor to come tend to him, all the while he was sitting in the waiting room with no food or drink. I called to check on him and he started crying on the phone because he was completely exhausted. I spontaneously went to the hospital to bring him some food and a drink and stayed with him for the remaining waiting time. When he arrived at home later on, my mum called me and they were both crying - her because of desperation because of his condition, him because he says he was completely worn out and had severe back pain and pain in his leg again and that he was afraid to go to the hospital.

I know that cancer in a way is a systemic disease and that the psychological and physical wellbeing of a patient could potentially have an impact on treatment success (or let's say response here, as we are talking palliative setting). But I am unfortunately out of my wits how to handle this situation to make it a bit easier for him. I am an only child and a true daddy's girl (I love my mum to bits too), but seeing him like this while knowing that it would be beneficial if he kept spirits up. He's already afraid to go to the hospital again which I fear severely impacts his compliance.

I wrote an email to two of the doctors treating him to let them know what happened today (hospitals are hectic and s*it sometimes happens, so I just wanted to flag that there may be compliance issues here because of this experience and that it would be great if there's any way to mitigate them). Also, from December onwards when the baby arrives I'm afraid I will not have the capacity to manage the situation on behalf of my parents anymore - at least not in the same way as I do now.

So I wanted to tap into this wonderfully knowledgable community to see if there are any encouraging words, stories, learnings that you could share. Anything would be much appreciated.

Thank you for reading up till the end of this very lengthy, hopefully not too chaotic post.

[Soumen79]

Hi dear daughter, be rest assured that your father will be very very well once he is settled into this treatment regime, his pain will become less if not fully gone as soon as he starts with bicalutamide, I am saying this because I went through it.First two month's are tough, once he will start experiencing the benefit of the treatment from both pain and psa angles, sheer positive energy will come out and that will propel him until nobody knows when treatment resistance happens and that is many years away atleast

This will happen. Stay tight be with him in next few month

[SkidiJay in reply to Soumen79]

Dear Soumen79, thank you for your kind words. I am so hoping this will happen soon!

[treedown]

I agree, if he can get through this initial shock, all the testing, treatment and pain I feel confident in saying he'll be back to his old self a month or two later at most after he starts hormone therapy. The docetaxel could be tough, but it might not be. We At least I hope that is the case. Blessings

[Fitzbruce1]

hello- I too was diagnosed 4 plus 3 with many distant Mets. The first couple months were mentally challenging! But it has been over 6 years now and I am doing great! Your Dad will be fine for a long time. Stay active and have a fighting spirit is my advice. Good luck!

[SkidiJay in reply to Fitzbruce1]

Thank you Fitzbruce1, for your kind words. Would you have any recommendation with regards to exercising?

[Fitzbruce1 in reply to SkidiJay]

I bicycle, paddle board, walk and use barbells in my house. When the weather is poor, I walk 2 or 3 miles inside my house with the music turned up! Many other guys on this site go to a gym which would be the best for strength training.

Best wishes!

[leo2634]

I was diagnosed with similar although my therapy treatment is different it's not a death sentence I've been stage 4 with multiple bone mets. Tell him to stay active and positive Cancer hates that. I've been 0.1 PSA since 2018Never give up never surrender Leo

[Big_Mcc]

I keep my spirits up by research and trying treatments that are covered up. Info is out there. Efficacy is apparent by the way you feel. Not there yet but getting there.

[pakb]

It sounds like they've given him a good treatment plan. It's all hard- my husband definitely went through a lot of urinary issues and ER visits in the beginning until the treatments started working and his spirits got better as those issues got better. Although needed sometimes, catheters cause many issues, especially mental ones many times due to loss of pride. You can click my profile picture to read my bio- lots of hope for your dad!💙

[Kaliber]

yikes … been reading your post but not really know how to answer / what to say to reassure you. But ….. I think all of us here understand your anexiety of the first era when you’ve been diagnosed . It’s depressing, scary, downright ugly… the unknown the pall of death.

I agree with the other replies. As for most of us, he will get his feet on the ground by being carefully diagnosed and starting a treatment. The treatment will ( for most ) stop his cancer growth and put it to sleep. After getting the treatment started and testing started, you guys will pretty much return to your previous life activities and carry on. For most of us, that means multiple years of additional life to spend with family / loved ones and get to enjoying QOL fun. ( even tho it might not seem like it right now ) . I don’t know if he will be classified and enter palliative care , but dad’s medical team has specialized staff that not only helps the mental state of dad but family members as well. All you have to do is ask and skilled specialists that deal with making patients and their caregivers / immediate family comfortable will help you too. They are invaluable at smoothing “ things “ out and making everyone feel a LOT better.

You can ask dad’s medical team , oncologist or pcp and they will hook you up. They see hundreds of patients / family and are experts at using the large array of new drugs designed for this application.

No one can ever say with any surety…no one … but by far the majority of us move on ahead, adapt to our new “ life “ and have years left ahead. Imho, it’s best to get to the family - QOL activities earlier than later on … we may diminish in our physical abilities over time and getting out now is the time to act.

All this just my own experience and perspective ( imho ) , act now …. Sooner is better to be stable and feel much better.

Big ehug out to you and dad.

❤️❤️❤️

[j-o-h-n]

Well the Germans are known to be precise, so if your dear Dad is under the care of a German Medical Oncologist and he can handle all the shit that suddenly hits him.... he will make it to see your new baby get a college degree.

Regards to your Mom, your Dad and you. Kiss that new baby for me, and BTW, name him JOHN (LOL).

Good Luck, Good Health and Good Humor.

j-o-h-n

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

👍🏼

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

Haha dear John, this made me laugh! The name is already taken by baby‘s uncle, but we may consider as middle name. I‘ll keep you posted on that!

[Carlosbach]

Wow, what a lot of stressors in your and your family's life.

First, don't forget to take extra good care of yourself and that developing baby first. I'm sure your dad would want that.

Second, I agree with the comments by our other members. A cancer diagnosis is scary, but our particular disease often responds well to treatment. Dad will be weaker, but he should be around for some time.

Third, I also had trouble urinating and had to have a renal catheter. To avoid having a third one the drs prescribed self-catherization. I was issued a supply of catheters, and inserted a new one four times a day. After being blocked up your bladder is stretched and it takes a while to heal. Self cathing gave me time for the cancer treatment to begin working, and for my bladder to heal. Eventually, I was able to urinate normally.

Best wishes for all of you, and congratulations on your soon to be addition to the family.

[JohnInTheMiddle]

So many things going on SkidiJay! I'll just say I'm over 2 years on triplet therapy and it's really great that your Dad will be going on this regime. Based on all the studies, not to mention my own experience, once things calm down after the initial chaos and with G-d's help there's the possibility of a return to normality, especially with triplet therapy.It's a "new normal" to be sure. Side effects and everything. Almost a year ago I told my wife "I feel normal again". And she laughed and made a joke 🎶

My wife and I are also expecting a grandchild in a month and a half. Everything should go well with you. And your dad and your mom should be able to enjoy the new baby together.

[Professorgary]

I started Bicalutimide May 2022 and after 15 days got my first Lupron shot 6/1/22. I was on crutches for 8 months and pain so severe I didn’t sleep for several days. Mets in lungs, nodes and bones quite extensively. I have since added abiraterone to the Lupron. Faith is important, it is always darkest before the dawn. I am 74 and hunt, fish and work on the wife’s honey do list. God bless you for being there for dad but I want to tell you something I have learned, this disease is harder on the caregivers than the patient. God bless you, prayers!

A picture is worth a thousand words

[OuttaTime]

your story is about like mine and catheters suck and so does chemo it will kick your butt. We have to do thing treatments to get better in the long run and buy us some quality time. No pain, No gain. I went through all that treatment your dad is going through. I am about 4 months on the post side of chemo taking 2 drugs for hormone therapy Lupron and darolutamide. My psa is .04 undetectable. My psa was 674. I have bone Mets, Pelvic, my spine and a rib. It takes a few months to really recover from chemo too. It is getting better I am glad that I went through all of that. The therapies shrink the tumors and stop the cancer for the most part. There is no cure yet and all we have are these treatments or tools at least prostate cancer for the most part is a slow moving beast. We could get many years of time thanks to these therapies. God allows suffering for us to get closer to him and to do his will and not own will. We are all going to die somehow at least we know in advance it is time to really turn to the Lord and seek him with everything we have. We can shine like diamonds in the darkness with the Lord. He is our strength, our savior, our stronghold, our holiness, our eternity. He is our courage! He is everything and without him we are nothing. He gives eternal life for those who love him and do his commands. He is our hope and salvation. He has suffered and died for us he loves so much. With him we can shine like light in this dark world. He is our breastplate and strength. He has defeated death and the waves and the wind obeys him! So have faith and hope in him he has conquered the world. He was put to death, emptying out his life for us., every drop of blood. There is power in his blood. He lives now for those who seek him out. So just do these treatments get a second opinion if you feel you want to. Eat healthy food and take vitamin supplement like calcium and a good multi vitamin. I eat a lot of fish and greens like broccoli and spinach you know healthy foods and grains nuts seeds whatever is good for you. Make sure you get some iron diet and vitamins for red blood cells. Pray everyday as much as you can. You will be alright God has got you! Oh ya I am 67 too! God is good everyday, Everyday God is good! And if you have a lot of pain get something from your doctor. Remember prayer is everything right now in the Storm. Jesus slept through the Storm he was not worried so we should not be worried either! Oh ya about 3 months into hormone therapy they took out my catheter I was dang happy about that that was before chemo. After a month of bicalutimide they put me on to hormone suppressing drugs gen 1 and a gen 2 hormone drug been on that the whole time, they changed the hormone drugs a time or two but it is all part of the therapies. And they do make you a little fatigued but eat healthy and drink a lot of coffee you will be ok or just take nap when you need to eventually things will get better. I am a year in since diagnose stage 4 with bone met a few lol! I take a couple Gabapentin when I feel achey it works for me it helps and is non narcotic. Hope you feeling better soon give it 4 months or so you’ll be much better. Maybe that stinkin catheter might be gone around that time maybe it will be something to look forward to! Trust him he will bring good out of all this. Go to him he is our savior!