Hey everyone.this is just my 2nd time posting here. My dad is currently in hospital since Thursday. My heart is broken we can't even see him. He has been battling prostate cancer over 7 years. We were told then it was incurable and that he had 2 or 3 years left. He had a great quality of life up until maybe last year when the back pain started. He has had chemo and near enough everything else. Even with the pain last year he was still up and about every day most days at 7am and babysitting the grandkids. Then he started radium 223 a few days before Xmas 19 and then that'swhen he went down hill. He had no side effects from chemo but with this is was brutal. He was brought in for a blood transfusion a few weeks ago we thought he was on the mend. But he got his bloods taken weds and Thursday we were told his iron and blood count was even lower then last time. He was in pain aswell but was still chatting away. He also didn't have a temperature that day but since he's been in he's just gone down hill. They have given him iv antibiotics and had an x-ray and his lungs are clear. It's so strange how he got so bad. They said he might benefit for a few days in hospice but I'm just so afraid he won't come back out. I'm so scared iv been living and caring for him these past few years. Sorry if this post is long and muddled up 💜
Need prayers : Hey everyone.this is... - Advanced Prostate...
It sounds like your father is in bone marrow failure from the Xofigo treatments. My husband is in the same position, after his 4th injection. The Xofigo web site warns 2% of patients had bone marrow failure, hcp.xofigo-us.com/prescribe... but I've done some research and found that to be way off. One site said patients need to be warned that the chance is more like 40% for those with a lot of bone mets!! Had we known this BEFORE we started the Xofigo, perhaps we could have been EXTRA careful before each injection and stopped sooner to prevent this from happening! -or perhaps we would have gone to NY after all to have the Ac 225/LU177 treatment instead!! (my husband was on the list at Weil!)
Don't give up hope as there's a chance your father's bone marrow might recover. There was someone else here who in the same situation and, after many blood infusions, his bone marrow did finally recover. If I remember correctly, it took about 3 months. - and I read of someone else on a different site who it took 4 months.
I'm so sorry this had to happen - sending hugs and prayers.
I acually had read your post just the other day as I was searching for similar stories. Hope your husband is doing well now..he had 3 radium 223 treatments but oviously they had to stop it at that. We were told nothing about the major side effects just that it might cause stomach upset and that. He lost his appetite and lost weight but but was starting to come around last week so this is why it's such a shock. It's the not knowing that's the worst thing. He was lucky as in he had years and years of good quality but we never thought it would end.💜
Was his MO checking blood counts before each infusion? My husband's blood counts were always checked 3 weeks after each Xofigo infusion, so that they could make sure it's ok to order the next dose, then he came back a week later for the injection. In hindsight, he should have had blood counts checked the day OF the injection as well!! Maybe not for the first couple, but after the 3rd, which is where the numbers were looking a bit concerning, imo. Also, the medical professional who gave the injections told us it wasn't unusual to require blood transfusions to help patients get through all 6 injections, and that for those who have to stop, it's usually at about the 4th injection.
I often call the company/maker of the drug/treatment being used by myself or family member (furry members included) to ask specific questions, etc. It's amazing how much more you can learn. When my husband went into bone marrow failure, I called Bayer, and was surprised at the very different experience I had. Bayer was blatantly tight lipped - they would NOT tell me one thing, nor would they let me speak with one of their Xofigo specialists! Instead all they would do is take down my husband's information, etc then give me a case number - NOT something I was expecting at all. I wonder if they're becoming worried about liability......
Yeah they had checked his bloods.i know they said before the final one that his iron was a little low but they would go ahead anyway. I think we were a bit niaeve because he done so well with the chemo and everything else he had we just thought this would be fine Aswell. How wrong we were. That's so strange that they won't tell you anything. It really would make you think tho. Oh did you try the cannabis? My dad was taking it for nearly a year and it really did make a difference. We noticed any time he stopped taking it the pain would always come back.he acually ran out of it 2 weeks ago and then when he started getting sicker maybe just a coincidence but it def done something. We had to get ours from a friend of a friend as it's illegal in Ireland. X
Thank you so much. Yeah unfortunately it's illegal here. Can't understand why when I'm.prettysure cigarettes are a lot worse for you. It really did help him when we had it. Just put the oil into capsules and 1 a day. Just praying hel get through this and we can start enjoying him enjoy. Can't imagine life without him. Stay safe 💜
It’s still illegal in most states here also . I’ve told the story of my beloved father . I was living 2000 miles away when he passed in 98. My dad came to see me a month before he passed. He told me that he loved me. A first in my lifetime. He was saying good by and I didn’t know it . He might have passed from heart issue or an asthma attack .Mom
refused autopsy . She was in a neighboring state and he died alone . The good news for me it that he told me he loved . I had a dream 3 months later. Cloaked in white long flowing hair and beard he said to me” I’m OK” then vanished.. This put me at instant peace with dad. This bond is eternal in my opinion. Not a day goes by that I don’t love him still. Our fathers are in our dna.. peace to you 🕊🕊🙏🏼
Yes, tried the medical marijuana, but could only get 2:1 cbd:thc, not the 25:1 cbd:thc our integrative Dr recommended. My husband had some unpleasant effects from that and didn't want to use it again. Also, I read marijuana can sometimes cause low platelets. Perhaps because it's an uncontrolled substance, so who knows for sure what's really in it??
Here's a more recent research study, just 2 months ago, Jan 28th, 2020, revealing much higher incidences of plummeting blood counts from Xofigo:
That this I declare about the Lord. He alone is my refuge, my place of safety; He is my God and I trust Him. For He will rescue you from every trap and protect you from deadly disease.
As stated in Psalms; I Pray this for your Dad. And may the Holy One of Israel Shower you and your Dad with a Shalom Ha Gadol. This is a Great Peace that Transcends Time.
I'm sorry that your dad is having a hard time. Does anyone know if they give the growth hormone to patients whose bone marrow isn't producing white cell, neutraphils and the like. I know they can administer red cells and platelets but the rest has to come back on it's own . Sometimes a growth hormone is used in other cancers.
Meditate everyday . Focus your mind on one point of light that you see behind closed eyes and just keep observing that for 4-5 minutes. You father has a specific lifespan written for him before he was born. Whatever that lifespan is, accept it. You can not reduce it you cannot increase it . You have done your best with medical attention . So now do not be afraid. Because your fear will disturb his mind. Spend quiet time with him when you can and be thankful for it. Sometimes simple acceptance will calm you down . If you cannot physically see him then try to send him positive vibes . It will all be good eventually .
Also Drop your fear . Just drop it like a soiled garment from your mind. You have been a wonderful caregiver to him . Be grateful you were able to do that . Many are not so lucky. Fill your mind with peace and quiet . He will sense it too . And who knows if his lifespan is not complete yet , he will come back ! We are only puppets . So you play your part well and he will his too
When he was first diagnosed there was lymp node involvement. During the 7 years it acually hasn't spread too much. The first bone involvement was maybe a year ago.mainly around the back and that. Acually not too much. He had 1 radiation just at Halloween and he was great just up until he started radium 223. I won't give up on him I just know it's not his time yet xx
LOVE be in LOVE, many blessings come from love when there is so much fear. Many of us have to practice this Being in Love. Being in your heart helps. Life is not fair, it is not easy, though we have a destiny and know it is any relief to you that we are not in control of our last breath. We've been through many obstacles- I continue to not give up.. ask your inner guidance for help and listen quietly to what your inner knowing says.. You are not alone and if I may say, in my belief, your father is not alone. Keep trusting, keep sending him Love... keep that steadfast.. and please let us know how you are he are doing.
This is an incredible journey, like no other in my view. Tough as it is, there are many blessings..
Your Dad is nt scared there he is worried more of how scared you are. He sounds like a doting grandad and dad. I am sure he will be less worried if you are less scared. Please remember god is on his side. Wishing good health and recovery to him. Sending love and healing prayers. 🙏🙏🙏
I’m so sorry to hear this. I don’t have time to post all the details but this sounds so similar to what happened to my husband. He’d had prostate cancer for 17 years and all throughout including the many chemo treatments he continued to live like nothing was wrong. Luckily he was never in pain.
In December he had the first Radium 223 treatment, we went together, he drove, then afterward he went back to his business. That afternoon he said it was like all the power left his body. He went home and got in bed and slept for almost 2 days. He never regained his energy and died on February 25th.
I am convinced it was that treatment and so was he.
That is a great blessing. Nothing is worse than brutal pain. Still nothing about this easy .. all we have is the here and now. This should teach you that life is precious. So that you can enjoy full long healthy life . And take nothing for granted... we get taught the most important lessons in hardship . Be strong and love him well . ❤️🕊🕊🕊
I am so, so sorry. It's been barely a month since your world was turned upside down. In these uncertain times, it must be hard to face the world without your husband. I do so hope you have children, relatives and friends to help and guide you. We all go on. I know you will too. I hope you have others to cherish, and others to cherish you. God bless.
Please accept my condolences on the passing of your Dear Husband last month. He fought his battle for 17 years until that unfortunate Radium 223 treatment. He like all of us was just trying to beat this wicked disease. May he rest in Peace and remain in your heart and your memory forever. God Bless.
j-o-h-n Tuesday 03/31/2020 11:17 PM DST
So sorry to hear this. I’ll send a special Prayer for him and his family to our Creator. Did you mean “benefit for a few days in hospice” or is this a typo or did you meant hospital? Hospice is designed for no further treatment and the patient is made to be comfortable in a compassionate setting.
If not a typo, then ........ Question. Why can’t an ambulance transfer from the hospital to home?
Last fall, as my 101 year old Mother started the process to cross over, I made the decision to have Home Hospice rather courtesy of the combined Army and VA Hospital. For me the decision was easy as she wanted to die at home like all her family before her. There is comfort to be in a familiar location surrounded by those who care. Due to the COVID-19 pandemic, those in hospitals are isolated from family. In my opinion this is so sad and my heart goes out to you.
Thanks so much. The doctor said they the palliative care team and his oncologist were thinking if his tests for covid come back clear that maybe a few days in hospice might do him good before he returns home. And that's why I don't want him to go in there as I know he won't come back out. I told him I would rather him home but ultimately it's his choice. I just hate the fact that it came on so suddenly
I'm so sorry to hear this.. I'm sending prayers for your father and your family. I'm in touch continually with my church all the time.. I myself just got out of the hospital last week after serious low blood counts form the treatments I am taking last 3 1/2 years. I had to have 2 blood transfusions which hopefully will help. My wife or kids could not come in to see me either. So I understand your feelings.. I was not happy about that either. I just want to add.. If something would turn up extremely bad, which I hope not.... I know provisions can be made for you to visit.. There is a protocol like that at the hospital I was in. There should be a protocol available in your situation.. Wishing and praying for all the best for you and family.. Barry
Thank you so much. I hope you start to feel better soon. Ya it's strange because I hope he can come through this but can't see him so if it's bad at least I can see him then. I was talking to him on the phone again today and he said he's just so weak he has no pain just tired. I think the fact he's in a room by himself and he has no1 to talk to not even a tv in there isn't helping him either. We are a very large family and hes never ever on his own and if I was gone away for a few hours he had his tv and the doggy.now he's got nothing. He cant really use a tablet so I'm going to send up his little radio.not much but even if it puts a smile on his face to hear music. 💚
Dear loving daughter Nathalie..Thank you for sharing dads plight with us . This is horrible . Poor guy. You’re loyal love has kept him here thus far . How old is he please? Not being able to be with him is the cruelest of all. For this I am very sorry for you . I thought that you were going to say that he has covid 19. ? Glad it’s not that . But the seriousness can’t be diminished.. please give me your fathers first name and I’ll pray pray and pray some More..in times like these it is sometimes all that we can do ..I’m Scott in Az .🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼💔
Thank you so much. They tested him for covid 19 but thank god the tests came back clear today. They said his temperature is gone down and his pain is gone but still so tired. They said his HB was still low so they are giving him more blood this evening. He turned 67 a few months ago so not old at all. He's the strongest best man I know and too hear him so weak on the phone breaks my heart in 2. His name is Christopher Reilly and we are in cork Ireland 🇮🇪💚💚
I am so sorry to hear about your pain - this is the worst time to have someone in the hospital! My daughter is in the hospital with possible Covid-19 and we cannot be with her - I know how hard this is. My husband also had three Radium treatments which resulted in low blood counts before he had to stop. My heart goes out to you at this very trying time - I am hoping your father will turn a corner and that you can be together again.
Hi - I didn't want to say anything because you are going through such a difficult time but my husband passed away on March 13 at the age of 56. He battled for close to 3 years and had a more aggressive type with lots of bone mets, including to his skull. He was only able to do 3 Radium 223 treatments. I hope and pray that your father recovers quickly and that you get to see him again.
It is clear how much you love your dad and what great care you have taken of him. As difficult as it is to understand why someone lives so much longer than a doctor may predict, it is just as hard to understand why that same person takes ill so quickly.
Every patient is different in what helps the most and what may have the most severe adverse effects. I don't know what the doctors are telling you but it may be time to focus more on spending time with him and comforting him. He may make a great rebound but he also may not and you should be prepared for that also.
If it is his time for your dad to go, making him comfortable and making him feel safe and loved are the most important things you can do. It sounds like you have had some wonderful years together and those will always be there for you and your children.
I wish you and your dad the best possible outcome and lots of time together.
No need to worry about muddling up your post. Please give your Dad my regards and tell him if I'm ever brave enough to drive on the wrong side of the road I will look him up and take him to the local pub for a pint. Then I will challenge him to an arm wrestling match....(loser pays for the pint)... Take care of him and take care of yourself.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/31/2020 11:09 PM DST
I'm honestly over whelmed by all the prayers and lovely posts form ye all. Ye are truly beautiful people. I got to bring dad home today. They said the damage done to his marrow can't be reversed. I'm just praying for a miracle. He is comfortable with his pint of guinness haha. I just don't want him to feel scared. Thanks so much to everyone and I will keep ye up dated. Stay safe 💜💚