My dad has been sleeping almost around the clock for several days. No appetite-very weak. 2-unit transfusion on Friday did nothing for him, except add exhaustion.
I’m beating myself up pretty bad tonight, esp because of all the great posts here on this site. Great advice-great suggestions- great support - other daughters in my shoes.
Why did I not find this site sooner. I went the google route. Tried a support group through the St Als network, but that just didn’t click. Pointless yammering from the group leader that dragged on for hours.
9/2010-psa was 9, RP 1/11. Urologist said he got it all. Looked us in the eye and said “You will not die of Prostate cancer.” And now here we are.
Mistake #1. Stayed with the Urologist for 3 years just getting Lupron until it failed instead of finding an MO immediately who specialized in Prostate cancer. His psa after surgery was .01. Back when we had options. And strength to fight it.
Mistake #2. Not getting a 2nd opinion when he said radiation OR surgery. Not both. As it turns out, many of you have had both.
Mistake #3. Taking his referral after Lupron fail- to an Onc (female) without doing our own research to find MO specialist. Again.
Mistake #3. We never dealt with the depression. I say we- but every visit in bold lettering on the file read DEPRESSION! We talked about it every visit with just awkward silence. Dad just had a hard time asking for help, I guess. I should have insisted on something. Anything. Even if he could have found many of you in the same boat, maybe he would have been able to find a way to cope better.
#4. Letting the paralyzing FEAR of losing my dad rob me of clarity to think and act without emotion.
#5. Not getting 2nd/3rd/4th opinions. Why did I not think to do these things? We/I put his health/life in the hands of ppl who, when I look back, just didn’t give a damn about us. The Onc rarely even made eye contact. She just typed away on laptop the entire visit, so she wouldn’t have transcription homework later.
Huntsman Center in Utah had nothing to offer but Radium 223. Why?? Why do we not have more options here in Idaho?
So-here we are waiting for Guardant tests to come back for a hope of Keytruda, that sounds so promising. New MO absolutely did not want to run the test. But why didn’t we have the option in November when Radium 223 failed? Or before? November to May 22nd with nothing to fight this monster except the concoctions I mix up every morning.
I’m praying hard that this isn’t “it”. And if the time is near, I’m praying for peace and comfort.
I’m amazed by all the sharing here of the battles and victories, wins and losses. I hope the outline that’s been discussed is already underway for newbies like us to get great advice for options sooner. I hope it becomes available in print for everyone. Not just ppl like us with stage IV metastatic Pca.
Pray for us 🌷😥
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dadeb
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I hate to see you beating yourself up like this. You made the best decisions you could given what you knew, and it will only make YOU anxious and depressed if that eats up all your attention. I have found prayer to be restorative. It gets you out of yourself and into a relationship with something MUCH greater than yourself and the disease you're grappling with. Let the past go as much as you can, and leave to God what will happen in the future -- your business is in the present.
My mom died at 99, and I think of the things that I did not do. And there were two specifically. I wont say what they were. There is really no point. Blunders. Anyway. I know she would not have criticized me for it, and I know she knew I had limits. For some reason she liked me. I am sure your dad likes you as well, and would not want you to feel that you failed him, even though none of us can really save anyone. We can do more, or could have done more, if........
Actually there is a great deal that is way beyond your control, beyond our control, so it's best (I think) just to accept it and pray for those you love.
Hind sight is 20/20. Many patients on this forum would not have been if hey had done things differently at the right time.
Instead, approach it as if you’ve got a snake by he tail. You have learned a great deal from your past decisions, and should focus all your energy on what needs to get done NOW.
I’m glad you have found this forum. Please ask questions, and members would be happy to share their thoughts and experiences.
Dadeb , I will pray in the morning for you and your Dad. I tried to go back to your history of treatments, seeing only Lupron and the rad 223, I am assuming he went the whole gamut like we all do that being the Lupron , zytiga , xtandi, docetaxol chemo, Jevtana chemo and rad 223. If so it may be worth a try to try either zytiga or xtandi again, as sometimes, actually close to 40% of the time the chemo will reverse the arv7 and allow zytiga or xtandi to work again. You should never regret what happened in the past as far as treatments, Standard of Care is standard of care, and likely that is had everywhere in a major cancer center. You are a wonderful caretaker for your Dad, My wife knows very little of my struggles or treatments with this disease, and even less of the side effects I suffer. You are an amazing caretaker and no person could ask for more. Maybe you should list the meds and treatments he has done so others will reply. I wish you both the best. please keep us posted. As others have stated your place is in the present and going from here.
I will send history. Yup. Whole gamut except Jetvana, of which we did ask for. I feel tired but I don’t want to give up. And I’m not the one fighting for my life. And now the vultures circle. Ppl stopping by asking what things are for sale or give away. And before the fat lady has started to sing.
. Know that we are all here to support you. I can imagine it has been hard for your Dad too. Has anyone ever recommended a antidepressant? Maybe you could post the history in the post.
Truth is that your earlier doctors are really to blame. Those who choose to not read up on the latest studies and treatments. Most people’s natural instinct is to believe their doctor in knowledgeable and aware of the best treatments available. However in truth doctors are like golfers. There are “scratch” doctors (the best) all the way down to 30+ handicappers ( the hackers). We assume they all studied the same stuff and would obviously stay on top of the latest in their fields. My urologist gave me a 14 Needle random biopsy and never found the cancer. I later learned by pure chance about Mri guided biopsies. That biopsy yielded 3/3 80% core biopsies of Gleason 9. Hmmmm 0-14 vs 3-3. Why would my Uro not tell me about a test that was so much more accurate? That’s on him. He owed me to know his field and to tell me about the best available diagnostic testing. A lot of us learn the hard way that we have been let down. That’s on them. Shame on them. All we can do now is look forward now that we know the truth about our medical community and spread the word. Trust me it’s not just Prostate cancer. This same situation exists throughout the medical spectrum. I’d say forgive yourself but you did nothing wrong. The hard part is to forgive some of these doctors who let us down with their ignorance.
My husband is having his MRI guided biospy June 13th.
Glad it was recommended to us. We use CTCA in the suburbs of Chicago, they actually use the piece of a equipment at a local hospital vs the cancer center, where our CTCA uriolgist has another practice. So sorry about your Father dadeb , maybe he is depressed only and doesnt think there is any more options. Does he have anyone to talk to like a cousleor or clergy that could really help him. Thinking of you both.
Sending prayers for your father , I don't know if is too late but your father's immune system needs to be elevated, with diet , I did the Lupron and decided to quit while my psa is below one at .1, I am dealing with tiredness from the Lupron and radiation, I was sleeping all the time also and was hard just getting up to go to the bathroom. I feel the side effects hit me when I was done with radiation and hormone therapy and they wanted me to do a total of 32 months of Lupron because my prostate cancer was aggressive. I feel the protocols did get rid of my cancer but now I have to build up my immune system because that is what really stops the cancer from spreading. I eat a lot of mushrooms and just started taking Beta Glucan. I was eating muffins made from cannabis buds but it has a high effect and I don't want to make myself more tired, I am going to be getting CBD for prevention CBD has no high effect and is great for the immune system and eating Apricot seeds can kill the cancer and that is my belief with all the research I have done , with a healthy diet like mostly veggies and no sugar, eating mostly chicken with no hormones or GMOs and rare occasions I eat beef with 90 percent lean , grass fed, if your father can come out of his tiredness and weakness , which I didn't know if I could have because of the side effects from Lupron, I know that if I would have stayed on Lupron I probably wouldn't have made it. it does stop cancer but the trade off can be deadly and depression sets in. I also had panic attacks thinking I was going to cross over. I have realized been a old person has its disadvantages so I became a born again Christian and excepted what God has in store for me but I do pray that I can be around for another 15 or 20 years for my sons who do not think about God like me when I was young and maybe when they get older they will by me talking to them about God, like my mother did when I was in my 50's , I am 68 now.
I did read today that a vegan diet is the best , here the url for it, it also talks about heart disease, I watched the video and it said that a Vegan diet reduces the risk of getting prostate cancer or it can reverse prostate cancer by 70%. the change can happen quick too, you have to watch the whole video because the first part is about heart disease and the second part is about prostate cancer and the studies that were done. I do eat a lot of veggies , thank you George71 , by you mentioning this I did see meat and eggs are not good for prostate. I will do some more research of eggs , I remember reading about just eat egg whites. but it was last year and I have Lupron brain , I couldn't even add numbers in my head when I was really good with math, now I have to use a calculator, hopefully now that I am done with Lupron, it will all come back, I still get hot flashes too. what is crazy a friend of mine has been a vegan most of his life and still got prostate cancer. when I was doing the radiation,and Lupron I was eating chicken and no beef , also eating egg whites and my psa still at .1. I also wonder about studies because we don't know the whole story. I guess I will keep taking B17 because it does kill cancer cells, I eat a 3 seeds after breakfast and after dinner, then I eat them right before bedtime, I guess I am my own guinea pig and will have a psa in july and see for sure if B17 is working. I know it is used in so many holistic practices with mostly diet change too. I will post my psa in July too.
Depression is an insidious enemy, and it’s often not obvious, either to care givers or the patient. Add to that the fact that this disease seems to progress differently in every person, and this is a nightmare even for the strongest. I’m doing well now, and there are days when I think I will be cured, but there are also days when I am withdrawn and overtly afraid of dying. So live every day to the fullest, enjoy every moment without pain and trust in your God. And we all second guess our treatment decisions, so that goes with the territory.
Sending virtual hugs your way. Please take care of yourself. Here’s my favorite prayer and one that would apply to you based on your note.
God grant me the serenity to accept the things I cannot change,
Courage to change the things I can
And wisdom to know the difference.
Try to be present with your Dad and not preoccupied with regret. I know from experience that it is a privilege, an honor, and a blessing to be with a loved one as they transition. I’ve lost my Mum to dementia, my Dad to a heart attack, two brothers and a brother-in-law to cancer, and several close friends to cancer. You are exhausted and terrified and that’s understandable. My prayer for you is that you can accept whenever you’re told it is your Dad’s time to leave and send him off peacefully and with love. You have been such a blessing for him. Please keep us updated on how both of you are doing.
I haven’t much to offer as far as late stage PCa goes as my husband is in early days of diagnosis and treatment compared to many of the men who share here. However, I can and will keep both of you in my prayers. Peace and love to you.
You offered much to me tonight. It’s the perfect prayer and message. Ppl here like yourself, have lost much more than I have and have been diagnosed so young. I’m ashamed to be so selfish, esp with all the years we’ve been given. I pray for you and Emmett and everyone here fighting this battle. The support and care here astounds me.
your dad did all the treatments and is 8 years out which is par for the course. When a guy fails primary treatment PCa is a killer...the clock starts ticking when Lupron fails and crmPCa sets in...it used to be the time line was 6-12 months...now with the 2nd line drugs Xtandi, Zytiga, and Apalutamide the time has been extended to 5-7 years for most guys..sometimes longer depending on how aggressive the PCa is...there is no magic bullet
IF you want to look at trials, to see if you are eligible for any that look interesting, may I suggest a keyword Lutetium, or Lu-177, or the way the chemists name it 177Lu.
It looks to be pretty good. It is treatment targeted to PSMA, which is a protein on the cell membrane of prostate cancer cells, predominantly.
Dadeb, please try to not beat yourself up over this. If you had known about other options at the time, you'd have taken them. If there's failure here, it's in a system of medicine which does not provide a universal best level of care. You have been devoted to your dad's care all this time, and now that you're here, you've found support and information from people who truly care....because they have been living with this disease too, and its successes and failures of treatment. Best wishes for a better outcome.
Daddeb sounds l like you did what you thought was right for your Father and that is what counts, no use living the past. I will keep him in my prayers as I do for all my fellow fighters here. Leo.
Prayers up Warrior, is dad home? He's got to get some nourishment/ fluids in him NOW. Sleeping is good the body fights best when at rest, but activity IS what assists with circulation. LOVE encourage LOVE some more. The MIND/SPIRIT is a very powerful thing, probably the most powerful, and he's tired now too. Stay STRONG remain diligent, its okay to be sad and REMEMBER to always be positive, you MUST, he thrives off of your energy as well. Blessed be Dad.
So sad for you and Dad , 7 years ago my father in law had his prostate removed, the urologist said he got it all. Did not do radiation or chemo. Did the check up every 6 months since , his PSA started bouncing up and down so did radiation last year, 9 days ago didn’t feel good had a ct scan ,cancer everywhere , DIED last night. Mistake was he stayed with his urologist instead of going to a oncologist. It’s sad when these doctors will play god and not send the patients on to better doctors to get help. RIP Gerald Byrd
My thoughts and prayers are with you and your dad. People often forget the emotional and physical toll that PCa, or any any life threatening disease for that matter, has on the caregivers, so may you be blessed for your loving care of your father.
I know it’s much easier said than done to tell someone to not get mired in the muck of guilt and regret. I was born and raised Catholic so I already had guilt instilled in me before I exited the womb. In fact, I probably felt guilty about the pain I gave my mom during my “coming out party.” And I’ve had more than enough life experiences and decisions on many things I’ve done (or not done), said (or not said) that I still deeply regret, but I was once told by a wiser person to not dwell on my regrets of those events...they are history. You can’t change them. Living in the present is enough of a challenge without dragging the baggage of the past around. Look to the future. I share Tall_Allen’s philosophy that he put so eloquently in his reply. Eleanor Roosevelt (can’t believe I’m quoting her) said, “yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why we call it the present.” I guess the point is that, like all of us, I still have regrets, but I refuse to let them control my life. When those thoughts pop into my head I ask God to (again) forgive me for them, and I move on. Like Tall_Allen, I find prayer to be restorative and comforting. In your case, you did nothing wrong...nothing. You made the best decisions you could based on the information you had available at the time.
I hope the Keytruda comes through for your dad. It does have a lot of promise as a PCa treatment.
Have a blessed day! Remember there are people out here supporting you and praying for you and your dad.
Please don't waste your precious energy and time beating yourself up! There is no handbook for PCa choices. It's different for every person. Prayers for you and your Dad. He sounds like a fighter! You too! 🌷
We can’t change the past. Everyday is a new chance to do better and enjoy life.
I suffered from clinical depression for 26 years before dx with PCa . It took me 15 years of psychiatry and various meds to find an effective medication , cymbalta, to treat it.
Depression , if not treated, is in my opinion far worse than PCa. If I hadn’t cured it before dx with PCa I wouldn’t have been able to handle this new problem.
As you can see from my profile I’m stage IV Gleason 9, and have had numerous treatments. But I’m doing fine. Going on my fourth ADT vacation. I’ve also had three major orthopedic surgeries since dx.
I cannot stress too strongly the importance of treating depression because it kills your desire to live and to fight whatever physical malady comes along .
Great post! Thank you for addressing depression. What kind of Orthopedic surgeries did you do? I ask because my husband just had a diagnoises of his PC returning, he was almost 10 years out from the first diagnosis. Three months radiation, two years of hormone shots.
Not sure treatment plan this time, it is contained to the prostrate but last time it was agressive, so assume after June 13 MRI guided Biospy we will know. My husbands hips have been killing him and they found bad servere arthrities in both hips and fluid on the right one. Not sure when to get him into a ortho with all this going on as well as they found a small tumor on his adrenal gland that is giving him issues.
Thank you again for talking about something that still in a way is taboo for some,
I had right knee meniscus arthroscopy in 2012; right rotator cuff arthroscopy in 2013; and right total shoulder replacement in 2014 three months after open RP. I have arthritic joints and have used celecoxib ( Celebrex) for relief.
Great news! Glad you were able to focus on total care for your self. I don’t know if he could handle hip replacements any time soon , going to look for alternatives when we start looking.
everyone has said what i wanted to say, already...but, you said he had two units of blood. did they give your dad FLUIDS, too. THIS happened to my husband in the ER at the VA, one time...they forgot the fluids which he needed AS MUCH or MORE than the blood units. A quick trip back, sat him right back up for a few years.
God will continue to be your strength. There is amazing resource here and they have helped me a lot. Do not be too hard on yourself and never give up either. Continue to stay strong for your Dad and get your other siblings or family members involved.
One of the things I did when I notice my Dad slipping into the silent mood, I will send text messages to my siblings to call Dad and help me out. After speaking with Dad and reminiscing on past events in our family, sharing happy news and all, my Dad will eventually regain himself.
You are doing the right thing by first joining this amazing group and drawing strength from others and second exploring options.
How old is your Dad? And do you have other family members to help you? Are you able to try taking your Dad to MD Anderson in Houston? Will that be a possibility for you?
You will be okay. Just continue talking to your father and maybe play his favorite music for him.
Take good care and please feel free to update us.
May God strengthen and uplift you. May He grant your father, healing from His Heavenly Throne above and surprise you in a good way. May you know peace and favor, in Jesus name, Amen!
Please don't beat yourself up so much. This disease is one big crap shoot and while there are many treatments - some work to prolong life and some don't --- no one really knows the best way to go. It could very well be that whatever you feel guilty about not doing would have not made any difference in its progression. We all on this forum really do feel your despair and just know that we have you in our thoughts and hope and pray that the next post from you will be full of hope.
Please don't beat yourself up over this. You did the best you could!. Please realize you have to rely on the doctors that gave care to your father. All I know is the older you get, the less the system wants to be aggressive to keep you alive. I am in Canada with "Universal Health Care" it does not matter, older you are the less care you get.I am fighting to get things done & it is now AT A SNAILS PACE.PSA is only at 0.29 after 18 years, but I should be at zero.
I will pray for you and your dad. It sounds like you have been a kind and caring child. This is everything that a parent asks for. I lost my dad to cancer and I could kick myself over his prostate cancer treatment .. but I gave him my heart and love and I know that is what matters. Hugs for both of you!
Hugs to you. You’ll also need to read everyone’s kind word here for yourself. I’ve been recording them in my journal for re-reading. I can’t thank everyone enough, esp when they’re going through their own trials. 🌷
Prayers your way. I hope you are able to enjoy and be present in the time you have with your father now. We all look back and see things we could have or would have or should have done better or differently. Life is too short. You clearly love your dad and undoubtedly he feels that...and all of those things...the 2nd and 3rd and 4th opinions...they’re not for everyone either. I will say a prayer for you and your dad.
Praying that you both will find comfort in the Lord, no matter the outcome. However, please don’t beat yourself up by “mistakes” of the past. Many individuals in THIS group has had success in prolonging quality of life despite growing and terminal cancer. Be strong and keep supporting your dad. When the time comes, give him the best send off as possible and enjoy the time you have with him. He will be at peace if he knows that you will be ok.
Oh my sweetie- I have been there- my sweet mama passed away almost two years ago with Ovarian Cancer and I beat myself up every day for the first year on the woulda-shoulda- coulda stuff. I hated her dr but my mom trusted her, she landed in the ICU twice over things that I feel like could have been prevented , she would text on her cell phone during visits and then when it came time for hospice to be called in she basically dropped my mom and never looked back. I have dealt with alot of anger at her, at cancer,, at the system and most of all at myself. I have been trying hard to get Better and not Bitter! I have heard that life can only be understood lived backwards but we must live it forwards- good luck and prayers going forward- much love!
It's a hard road. No one knows how anyone is going to respond, or for how long.
I'd like other experienced people here to maybe add their thoughts about estrogen patches. The reason I say this is that at UCSF up until maybe 7 years ago, (not sure where they place this now) their protocol used estrogen if the other drugs stopped working. This was just at the beginning of Abiraterone which they later named Zytiga.
We've been swapping things around, up and down.. being creative. We used estrogen patches. We did need to use nattokinase, or cardiokinase. (blood thinner because of the estrogen) I don't suggest anything, just the researching of it. We definitely watched diet, and used this natural blood thinner. also a baby aspirin ... we did and do take risks.. this is why I only share what we do personally knowing we take full responsibility for our choices.. I'm the so-called 'hawk'.. with my husband.
I only offer this thought of research because it was listed as a last choice close to ketoconazole ... which we chose not to try. It worked for 3 years...
I'm a daughter here too, for my dad. He was detected end June 2017 with a psa of 2790 Gleason 8 TRUS biopsy. It has spread to the bones and lymph nodes. Multiple places. With Degarelix since 10 months, psa is down to 33 this month. But recently he has been losing weight and his appetite. He sleeps all the time and gets tired easily. I'm so worried.
Hi Dadeb, Reading the comments here by these fellow fighters of pca & caregivers there is nothing i could add except to say you & your dad are in my prayers.
I hope he is resting peacefully & you are concentrating on the now.
Prayers are huge. We’ll take them all. Thanks you, and we pray for all of you everyday.
I hope you will keep on ploughing through for yourself and your little sweet girl. Everyday there seems to be another treatment-better than the last. 💪
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