My husband of 45 years lost the battle with this disease.
He was diagnosed at stage 4 Gleason 9 in August 2015.
Most of the protocols on this site were used in his treatment. We constantly researched treatment options. It seems that most new options were geared to therapies around BRCA gene mutations, of which he did not have. He was not neuroendocrine. We gathered second opinions, questioned the M/O constantly on any new protocols we read about. Remember it is possible to skype second opinions with MD Anderson and other major treatment centers.
What is important to realize is no matter how you feel through ADT or other therapies try to keep active.
In the last year he became very weak and was unable to continue any type of therapy, and was hospitalized after each attempt. But try to keep walking, running, dancing, eating well even though you do not feel like it. Keep strong so you can continue therapy.
They say in the beginning of treatment you will die with prostate cancer not of prostate cancer.
Tom died of prostate cancer and peacefully at home surrounded by his family.
Hospice now uses liquid morphine and other drugs which help to control pain. His pain was more related to the liver rather than bone, although he had extensive bone Mets.
In October we learned of brain metastisis, underwent cyberknife treatments to brain through November and Hospice was called in on December 9 th.
The last few months he enjoyed multiple daily visitors and family. We played musical instruments and sang with him - he ate whatever he wanted although his appetite was greatly diminished. He seemed happy.
So remember to continue to swim, walk, run, dance, or whatever suits you so that you remain strong as long as possible and treatment can continue .
Never give in!
Written by
DSEE
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I'm very sorry to hear of your loss. I agree that maintaining as much activity as possible is important - I especially like that he was dancing and eating well - it sounds like he really enjoyed his life with you.
Thank you for such an insightful and carefully worded post about how you managed the journey at what must be a very 'raw' time for you. So many posts inform us of the great advances and progress in the treatments but for some, like your husband, things don't always go as you hope. Posts like yours demonstrate the practicalities of life when things don't go as we'd like no matter what we do and how others, like you, manage to make a simply terrible situation at least as comfortable and bearable as possible for both the person and those around him.
Just from what you've written I'm sure you have created some truly beautiful memories over the years and these are something that will remain and hopefully sustain you in the months ahead. My thoughts are with you.
Thank you for being so generous with your advice after such an emotionally difficult time. All my best wishes to you.
Thank you for sharing the story of the last 4 1/2 years lived by you, Tom, and your family. I was diagnosed at stage 4 Gleason 8 in December 2015.
My wife of 47 years does an exceptional job in being my caregiver for the things I can’t do. Your story reminds me so much of our story. However when I read your story and others like it, I have strong sensations and emotions that your recent memories of this battle are very much my future.
I am so sorry for your loss. I hope you take some comfort in the wonderful life enjoyed by you and Tom. You have written beautifully of this life during good and bad times. This disease quite often results in the bad times overwhelming the good times, but you two fought through the bad times together.
I send you my best wishes for a good life as you and your family move onward from your recent loss.
One last thing: you don’t know how much your story means to me on this impossible journey. Accept my gratitude for the strength you have provided to me. I learned again that my wife and family will dance again when this is battle ends in the future.
Thanks for sharing your story as difficult as it may be to accept your husband’s passing. May he RIP and his memories live on. It is a stark reminder how serious this disease is, and that physical activity is the best way to fight it and SE’s. Best wishes. T
My condolences on the loss of your husband. It’s very kind of you to detail your experience at this difficult time. My husband also has stage 4 Gleason 9. He went from no exercise to working out at least an hour/day. He’s also cleaned up his diet and lost almost 40 pounds. I had no idea you could use Skype for second opinions; thanks for letting us know. I wish you the best and hope you find peace going forward.
Sorry for your loss, and at the same time comforted by the wisdom of your words and the choices you both made to maximize the quality of life of both body and spirit during the last few years and months. Thank you so much for sharing these details.
I am so sorry for your loss, and yet I am also happy to feel that both you and Tom have inspired me and hopefully others who have received these words of strength, life and wisdom.
I’m very sorry to hear about your husband’s passing. I’m glad to hear he was able to stay happy and enjoy the company of family and friends until God called him home. Thanks for the reminder to remain as active as you possibly can. He was an example for all of us in that regard. My prayers are with you and your family. Mark
I am so sorry for your loss. Thank you for your beautiful words of encouragement and caring. We started this difficult journey the summer of 2018. My prayers are with you and your family.
My condolences on your loss. I hate hearing of another member reaching the end of their journey, particularly when their name is Tom. But, if it must happen, peacefully at home is the best way to go.
I also must agree with staying active and enjoying life. It helped me recover quickly from my first round of chemo, which it turns out was very fortunate as I start another round tomorrow, only 10 months after the end of the previous round.
We actually discussed your treatment strategy with his oncologist. Once they added the carbo taxotere combination he could only tolerate one treatment.
He was hospitalized for a lengthy time. Then they tried cabazitaxel all for liver Mets - and same result. After hospitalization you are very weak and he really never recovered. I feel if he was physically stronger through exercise prior to hospitalization he may have been able to withstand more chemo better.
You are in a good place with your treatment. Keep up the fight.
I'm so sorry for your loss. It sounds like you have a wonderful family. At least they were able to spend a lot of time with him before he passed. A wonderful family will help get you through. Thoughts and prayers to you and your family.
I am so sorry for your loss. Sounds like you helped provide a loving and comforting home for your love. Sending prayers for peace.
As I read your post I became quite in awe of the caring actions and love your husband received from you. The wives, daughters and sons left behind who post here are truly heroes.
You end a post that we all wish we never have to make with uplifting advice to us on HealthUnlocked! Thank you!
What a touching post. So very sorry for the loss of your husband. This post hit me hard, tears, because it mirrors my exact situation. You gave great advice that i took to heart. Many blessings to you and your family.
Peace be with you. I appreciate the fact you were so open in your comments. It’s very hard to keep battling for each day. And so hard to decide when enough is just enough. I’m sorry for your loss.
Dear DSEE......I’m sorry that he was taken away from you by this brutal disease. It is right to celebrate his life and those 45years together . Many prayers of mercy 🙏🙏
Sorry to hear of the passing of your beloved Husband my heart breaks for you and your family. You were there for him and that's all one can ask .God Bless you and take care
I'm very sorry for your loss, it's always incredibly tough to loose a loved one. But, you fought a long battle together, and your husband knew that he was loved and support every day in this journey!
My heartfelt condolences to you, your family and friends. Thank God you had 45 years together and that you and your family were with him at the end. He is with the angels now and is thinking how wonderful a life he had with you and with his family. May he rest from his weary battle and may you all keep him in your hearts forever. God Bless you all.
I’m so sorry for your loss and thank you for sharing your story and wonderful life with your beloved husband. This gives me insight to the future and emphasizes how precious our time with family and loved ones is. My prayers are with you, God Bless.
Thank you for posting and for the wonderfully wise words about swim, walk, run, dance, or whatever suits you. You're right and it's kind of you to think of others at such a hard time. I think your husband was blessed to be with you.
I have been in and out here since my Dad passed and I just saw this, but I wanted to send my deepest sympathies to you! DSEE was kind enough to share helpful recommendations with us and I was so grateful for his help. I'm so sorry to hear of his passing. Peace to you and all who loved him!
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by d*mn PCa.
What should I expect at the end?
Radiation or Chemotherapy on Prostate?
Keytruda and brain tumors
Treatment options for metastatic prostate cancer? 
At Home with the Lord
