Mikes last immunotherapy treatment was on 3/09. He progressed and had several falls and other complications which placed him in the hospital twice. His oncologist deemed that he was too weak to continue treatment. He currently has over 50 nodules in his lungs, swollen kidney and swollen lymph nodes that are causing severe low leg edema. We made the decision to place him in hospice April 14th. Everyday he becomes weaker, sleeps more, increased confusion, completely unable to care for any of his personal needs. He eats less and less food each day. I know this is not a life he would choose to be living. I am heart broken. Our 6 and 9 year old seem very confused about what’s going on with daddy, even though I’ve tried to explain everything without causing a panic. I have no idea how long this will go on until he passes away and can be out of this broken body. Does anyone have any insight on how long patients usually hang on after treatment has failed? His cancer is small cell prostate cancer in lymph nodes, bones and lungs.
Mike is on hospice: Mikes last... - Advanced Prostate...
Mike is on hospice
Only someone with full clinical data and findings might be able to estimate this..
I can tell you this- treatment began to fail and put my husband in the hospital 3 times in 2019.
On December 9 they required him to go to hospice care.
He left this world on 1-24-20.
My heart goes out to you.
I understand what you and your children are going through.
Please if at all possible read the book Final Gifts-
I am reading it now and wish I had read it before I lost him.
I believe your husband is much younger- Tom was only 71, but at any age this is extremely difficult to go through.
Peace be with you and know you are not alone.
😂❤️
Blair77, I am so sorry to hear of your pain and Mike's approaching death.
Please feel our collective support and comfort as you live through these difficult days.
"Big Virtual Hugs" for both of you, from us all.
As for your question(s), ... I can only speculate, based on some of my own limited experiences.
I would imagine that the timing of death can vary, depending upon which life-sustaining body systems may drop below the long-term survival performance level. If he gets to the point of refusing all foods, or especially liquids, the time will be relatively short. You may face a choice of interpreting any Advanced Directive he may have in regards to the withholding of liquids that he cannot drink normally, or to associated IV fluids.
Similar things could apply in terms of kidney failure/infections and whether or not he gets treatments of antibiotics for that. Likewise for insufficient lung functioning of fluid accumulations around lungs, heart, or liver,, and whether or not he may get any oxygen assistance or have drainage performed.
Likewise for the levels of pain medications to maintain his respite from any pain, and any trade-offs with his state of consciousness, etc.
Likewise for things that can happen more suddenly when there may be blood chemistry imbalances that could eventually impact the heartbeat.
I have known several men from Support Groups who died from advanced prostate cancer. Most died within a month or less of the time they actually went to hospital hospice or hospice in a hospice facility or at hospice at home. Some of them seemed to be doing relatively OK, but died within 24-36 hours after a particular thing suddenly crashed. Now is the time to call-in as much personal reinforcement and social support as you can, ahead of need ... particularly if you may be feeling alone and overwhelmed. You will still need your sleep, and your children will still need their care.
Talking to the children will be an on-going thing. Their teachers and other parents of their friends may be able to help if they are kept "in the loop". Some good general sources of things to consider will easily pop-up in search results if one Googles "talking with children about hospice".
There will be lots of other stuff "after he is gone" that you will experience, too. The "details" of legalities and paperwork and stuff that, hopefully, you may find someone to help with or to whom to delegate some of it during the first couple of weeks after the death.
I have also known several widowed survivors/caregivers who kept coming to various types of Support Groups after their man died from advanced prostate cancer. All kinds of things came up. Emotions all over the place, of course. Unexpected moments of intimate recollections and stories that happened before, during, and after the death, and the days, weeks, and months afterward.
If you can consciously plan for some kind of extended support like that during first several months after the death, it might help. Those are the places where you can share how it was when you found there were just so many tears that could come out of your eyes at any one time. How it felt to be next to Mike and to hold him toward the end or in the moments after he died. How it felt to smell Mike's clothing, or to go through his wardrobe and his "stuff" for the first time after he died, etc., etc., etc.
It's one day at a time. Hopefully there will be lots of love, support, and compassion to balance any of the other stuff that cannot be avoided. Please keep us posted.
Charles
Well said Charles...
I am so sorry for this
May you find strength during this time
and May peace follow too
These words seem just words I really want to wrap your little ones And keep them safe from the hurt they will feel my heart breaks for you❤️
I'm so sorry to hear about Mike, and as sorry for you and the young children. I hope they are able to make him comfortable.
I'm so sorry about this. It sounds like your husband is too young. Prayers for you and the kids.
God bless Mike and your family. Psalm 23.
I am so sorry but also so angry that this young man is going through this. I can only wish God's blessing. I prayed for Mike and will continue to do so.
Hello Blair,
My heart is breaking for you! I really feel like I’m living this nightmare with you, just maybe shortly behind. I have a Mike (47) with small cell. He has mets everywhere. Not doing well. We have 2 boys 11 and 8. There are just no words adequate enough to express my sympathy. Just know you are not alone. Please message me if you’d like.
Nikki
Hi Nikki,
It is a nightmare come true. We tried everything but maybe not fast enough. Seek out everything you can. Push for more and faster, I think we moved too slow and waited too long for more out of the box treatments. I hope you do not follow our path, it is hell.
It is a living hell! He has tried carbo+etop and immunotherapy and it wasn’t effective. He completed targeted radiation, not really effective. They now have him on carbo+cabazitaxel, don’t think this is working either. Next up Lynparza (Mike hasBRCA2). After this, not sure, unless a good clinical trial comes along. He was dx stage 4 from the start. With extensive mets in bones and lymph nodes. I am keeping your beautiful family close to my heart. I know your pain, you are not alone. 💔🙏🏼
My mike was also on carbo+cab they kept him on it from August-December even though I don’t think it helped at all, but did make him weaker. Ask for scans to make sure the combo is helping,not just wasting time and causing more damage. Hugs
Don't you dare blame yourself. You aren't a doctor. You and your husband did the best you could. This disease puts so much on the patient when it comes to making treatment decisions. Nothing fair about this disease. I'm sure your doctors did the best they could too. Give your children support and encourage them to make their goodbye's to their father.
So Sorry to read this. My thoughts are well and truly with you, now, tomorrow, next week and the months ahead. Get as much support as you can. It truly is a hellish nightmare. My husband passed away Nov 12, it feels like only yesterday on one hand, on the other hand I feel I am slowly coming to terms with being a widow. We also tried as many treatments as possible. I still feel we would have had a different outcome if we had been living in Australia rather than New Zealand.
whoa 🙏🙏🙏😩
Hi Blair,
I am so saddened to hear this... and have been in tears reading your post and the replies. I truly hope that you are all able to somehow make it through, and that you and the kids can find peace. I am 46 with Stage IV for 3 years and I am terrified about what is approaching. With 3 young boys, it's all the more daunting.
Huge hugs to you all... there really aren't words to express how I feel.
Cam XO
Life is definitely not fair. I lost my dad at an age similar to the age of your oldest. We talk about and remember him still find 50 years later. You guys can make it thru this. We did. It was really hard but there will be a light at the end of the tunnel.
Schwah
May God be with Mike and especially with you and family. No rhime or reason how this works.. I live each day as if it could be my last and all I can do is share our love with all we know. Praying Mike is in no pain and God be with you and the kids
My hubby at that sort of stage 12 weeks but when your hubby is ready then thats when it will be what a vile disease this is xx
I read in the Bible that you say Mike has the worst luck in the world I think he's a pretty lucky guy to have someone like you and the kids it would be hell to go through this alone all I'm here in the same boat waiting for the shoe to drop. Sending out positive vibes but you and the kids see the good in all this because we're supposed to learn from this life as tough as the lessons Maybe
That was bio... voice to txt🤨
Bless you both
So very sad
Maintaining comfort levels would be my main goal
Prayers for you all
It is heartbreaking to see someone this young go thru this. I wish your family peace.
This entire community weeps for Mike, and for you and the children. May all find comfort.
I am deeply saddened to hear of Mike’s medical decline . My wife and I and all here on this site surround you with our love, prayers, and comforting support . Having worked in hospice for many years clinicians will certainly keep Mike comfortable and his passing peaceful applying their collective skills. For you and your young family I pray for God’s merciful hand of grace and comfort at this very difficult time.
So very sorry...
My heart goes out to you, Mike and your kids.
This is heartbreaking. So very sorry you all are having g to go they this. Prayers out to you
I have been following your story. My heart breaks for you and your family . I am praying for him and wishing your family comfort and peace.
I am so sorry to hear this news. My god bless you and your family.
My Mother's hospice experience was a learning time for me. We had been feeding Mom her favorite treats, ice cream and such, when the hospice director told us that only causes her to linger when she was in such obvious pain. It was the same way with encouraging her to drink water which we had been doing as well.
I agree with someone else posting to keep something with the smell of your husband as a memory. My Mom had a hairpiece that I kept in a baggie for years afterward just to open and get a smell her. I was so happy to have that.
Also don't hesitate to crawl right in bed with him to cuddle with him and your children as well. They will always keep that memory.
I am still trying to get him to drink and eat because I can hear his stomach growling 😔. This is good information to know, thank you.
I hope your final journey with your husband has some peace and minimal pain and anguish.
I join the others in extending my heartfelt condolences.
May God bless you and the family in this time of trying to do your best under difficult circumstances.
Mike maybe holding on for you and your children . My husband was holding on for me and once I told him “ you worked so hard your whole life and now it is time for you to rest “ I saw the sense of relief in his eyes and he died the next day.It was one of the hardest things I had to do but one I did out of love . Prayer to you and your children during this time .
🙏
So sorry to hear of Mike's situation. My prayers for you, Mike, and your young family during this difficult time.
I wish I could think of what to say except I’m in tears and my heart just breaks for you.
Just tell you God bless your family. Prayers for Mike. ❤️
Virtual hugs from Argentina.
Viva Argentina! 🇦🇷
My heart goes out to You and your poor husband.You should talk to his caregivers about end of life. They will tell you . Go Bless.
I'm so sorry for your and your children. There are medications to keep Mike pain free. Sending prayers for you and your family..
My prayers for you all. May Jesus bring you comfort and him peace.
Hi Blair,
I wish Mike was able to turn the ship around. He tried everything to do so. I hope you can try to get some fresh air with him and that he is comfortable with his current care level. My prayers are with you, Mike and your children 🙏
I’m sorry about everything you’re going through. My husband was diagnosed with metastatic prostate cancer in the lymph nodes in March 2018. He fought really hard and received the standard care treatments until Dec 2019 when he participated in a 30-day Car-T immunotherapy trial at City of Hope. The car-t worked for the first 15 days and we were all excited but then it stopped working. Doctors said the t cells became exhausted and were dormant. At the end of the 30 days he had fluid retention from in the abdomen, both legs and feet and could hardly walk due to the edema and extra weight. He was in good shape before the trial. He was in Hospice in February and passed away in April.
So sorry for your loss. This disease is so cruel.
Thank you 🙏🙏. It was very difficult seeing him suffering so much in his last days. He was a wonderful man and I know he is now with our Lord, free from that body. I have an angel in heaven, and your husband will be your angel and will protect you and your kids!! God bless you!! ❤️❤️
❤️🙏
To lardoz,
My sincere condolences on the passing of your dear Husband last month. May he rest in peace at the right hand of God. I know you will keep his memory alive in your heart forever. Stay with us we need wonderful caregivers like you.... God Bless.
j-o-h-n Monday 05/04/2020 6:46 PM DST
I am so sorry for your loss. Hard to believe that after 2 years of struggle, it is just suddenly over. I am wishing you and family and friends all the best.
🙏
Like many others I am in tears reading this. My father in law was in hospice at home a little over a month before passing. He gradually became less active and ate less. Then one day he felt much better and got dressed, and went back to bed. Such brief improvements are not uncommon near the end we were told.
When it gets really close to the end, the doctors likely will be able to say pretty accurately how many days or hours he has left.
May Mike's journey be peaceful, may you find strength in the days ahead, and joy in the memories of the time you had together.
I cannot imagine what you and your family are going through. I think it is all of our greatest nightmares to have a drawn out series of treatments that really is no match for the disease and to have our family and friends along for the ride. Your husband is very young, as are your children and you also. It is a tragedy all the way around.
As far as how long it may take, it sounds like he is ready, based on what you have said about his condition and it will not be too long, unless he has a last minute surge. Even then, i is usually temporary.
Having you there with him will help ease his passing. It sounds like it is no longer about treatment but about comforting him and saying goodbyes. Often people need "permission" to leave, especially in situations where children and other family members are involved. He needs to know you and your children will be okay.
I wish you and you husband a smooth transition for him and that you will be able to revisit the memories of him with your children after he is gone through stories, photos, videos, and connections with grandparents. It will undoubtedly be incredibly hard but it will also be freeing for your husband and ultimately for you and your children, once the has gone.
I wish you all the best and that eventually you will find a way to have a new life with happiness and joy, as well as memories of what wonderful times you had with your husband over the years.
Don't forget to take care of yourself, take days away from your children occasionally to renew your spirits and have something to offer them when your are together.
To Blair77, Your question:
"Does anyone have any insight on how long patients usually hang on after treatment has
failed? "
I don't. God does. The end question is something I ask myself many times a day. In your husband Mike's situation I pray for a miracle for him. Miracles are few and far between so I pray he is not in pain and that his suffering ends quickly. Mike is a young man with a young wife and young children, who has been fighting his disease for two years and needs a rest. I think about the children and how they will manage when Mike finally rests. Do you tell them that he was so exceptional that God wanted him near him at an early age? Who knows what to say? At this moment I don't feel sad I feel angry. Life? What's it all about!!!
I hope you have an immediate family to help you at this trying time. Our H.U. family is always available for you regarding help and consoling. I never met Mike but tell him that I and his brothers here love him and miss him. God Bless you and the children....
j-o-h-n Monday 05/04/2020 7:24 PM DST
Mike, you and your family are in my prayers,
Reading this is gut wrenching. My husband also has small cell cancer of the prostate. It took 6 months to get that diagnosis, after Mri's and a biopsy of a lesion growing on his sacral nerve. Because is psa was undetectable,his oncologist ignored it. Tried as I might I could not get any action. Long story. This is a God awful disease. Your husband is with one of the top small cell oncologists in the nation. In March,we went to Boston to see Dr. Misha Beltran. She and your husband's doctor are amongst the few researching and trying to find effective treatments. Please don't blame yourself. Easy to say,hard to do I know. From reading your posts,I am amazed at your knowledge and dedication to saving your husband's life,especially with small children. It is an overwhelming task for me and I am a RN and retired. Please know that you did it all. Dr.Beltran offered us no miracle cures only hope that there may be some treatment on the horizon,if my husband lives long enough to see. It is the very worst of the worst cancers. I am so very sorry for you,your husband and your children. It is truly unfair. Knowing that I may, and very likely will,find my self in your exact shoes,I know that there is nothing I can say to help. I hope hospice offers you some peace and medication ensure smooth passage.That is their job . Rely on them.
Thank you. I really did think I could find a pathway to fight this disease. I read medical journal after medical journal spending my nights scouring the internet for something that could save him. I would have done anything for our story to have a different ending. Please keep asking what more can be done. I hope your journey doesn’t end like ours.💖💔
We are all the same Blair. In the end we all will submit to Gods Mercy . In this we are all
Equal.. no more suffering .🙏
So hard to hear this. And Mike so young. I've had an infant son, a daughter and my wife all pass. Each time, I thought, if only we had taken the path not taken. They were all supposed to outlive me. I had survivor's guilt each time. Brush those thoughts aside. Make sure they keep Mike as comfortable as possible. Ask your friends and family for help and support. You will find the path that you and the children need to take. My best wishes to everyone.
There are no words. I’m praying
for mercy for Mike. There is no rhyme or reason for brutal suffering.. My heart has been breaking for Mike and you and the kids from your first post . One thing dear Blair is that here we can all relate to what you are suffering. You are by no means alone . There are more than 10,000 of us here that will all face the same music at end stage . Do you have anyone helping to you with emotional or physical support ? I hope that you have family members or friends stepping up to help out? ? Im in Prescott Az. Each one of us men in different stages with pc will need to leave our wife’s and loved one s behind at some point. It just comes down to when the suffering is too great . Hang on to your children tightly . You all will be together for their lifes just starting out . They are
Loving you forever . I’m sorry this has happened to mike and your family. You must carry the family torch and Mikes flame forward now. May God shine light on you in the darkest moments. God bless you all 🙏🙏😫
Thank you so much for your post and your transparency. Lifting up you and your family in prayer.
I'm so sorry to hear this. I am so sorry I have no comfort to offer, but I am sending prayers to you, your husband, and your children. I am so sorry you are all going through this particularly so young.
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