This is a long post - patience is advised. My warrior husband passed away on Nov 19 after a 13 year battle with Prostate Cancer. He was originally diagnosed in 2008 with a Gleason of 3+4 and PSA of 35 at age 59. He had a radical prostatectomy followed by 34 radiation treatments. His PSA remained undetectable for a few years. When it began to rise, he went on Lupron injections/ then Casodex. In 2018, his PSA jumped to 19 and his Urologist referred him to Oncology. He continued with Lupron . He had Provenge which helped for a few months. Then he was offered a clinical trial of zytiga + Predisone with Xgeva every 6 weeks. He was on this trial for a year until lymph node involvement made him ineligible. The oncologist offered the chemo Taxotere - he had 3 infusions and scans showed no improvement and significant weight loss. The scans showed some bone Mets as well as lymph node involvement. Next would be one infusion of Jevtana. In the meantime, I was furiously researching clinical trials and new therapies- we had several Zoom consultations regarding clinical trials but could not find a good fit. I was interested in Lutetium 177 but there were no spots in trials available. By Late October 2020 with PSA climbing radically, I reached out to Booking Health and got him an appointment in Berlin, Germany for his first Lutetium 177 treatment. When I saw his PSMA PET CT there, I was shocked. He had mets throughout his skeletal system and three spots on his liver. His PSA was at 1350. The first treatment went pretty well but he was horribly ill on the way home to the US. We didn’t think he would live to the end of 2020, but gradually he started feeling better and his PSA started a decline so we went back to Germany in January 2021 but this time to Dr Richard Baum in Wiesbaden. Dr Baum thought my husband would benefit from a tandem therapy of Lutetium 177 and Actinium 225. Again he started to feel better and saw a decline in PSA. The third treatment was in March 2021 and Dr Baum said he was a super receptor of the treatment. Again his PSA was lowering dramatically and he felt well enough to golf and no pain. He gained weight back and really was enjoying life. The last trip to Wiesbaden was in June 2021. Dr Baum was pleased with his progress and his PSA had dropped to 20. However- this was not to last- by July his PSA was inching upwards and he was becoming transfusion dependent. His platelets were very low. By August his PSA was up to 84. His labs were too low to return to Germany. I understand that this could be a side effect of the treatment.
Our local oncologist ordered Xtandi as a last resort and did not offer much hope that it would help. It made him very sick and exhausted. He stayed on Xtandi for about 6 weeks. In late September I took him to a Prostate specialist at Duke hoping for a chance at a trial. We saw Dr Andy Armstrong there ( wonderful doctor) and he told us that my husband was too transfusion dependent and platelets were way too low for a trial. The only suggestion he had was for a low dose Jevtana which he thought was risky because of my husband’s condition. By this time, he was getting transfusions every two weeks and getting weaker. He decided on no more treatment- only the transfusions but even with them, his condition worsened.
By the first week of November, he was hospitalized for 5 days for severe dehydration and his platelets were at 12,000. He was given IV fluids, transfusions and platelets. He had stopped eating and it was difficult to drink. After a week at home we decided together it was time for Hospice. Unfortunately the hospice we chose was a nightmare - just bureaucratic paperwork. I took care of my husband with the help of his Pain Doctor who was an Angel. He passed away at our home on November 19.
Prostate Cancer is a brutal enemy. As I sit here writing this, I am praying I did my absolute best . I do know what I would do differently if given the chance. When we learned of his diagnosis, I would have insisted that we go to a specialist in Prostate Cancer first. I believe when you get the dreaded diagnosis of cancer, your first inclination is to have it cut from your body. That is what my husband wanted to do. I would encourage everyone to breathe and examine all of your options. This may not have made a difference in how long my husband lived but that is my one regret.
God bless you all on this journey. This will live with me until I join him in Heaven.
Written by
poppymom0211
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I am so sorry for your loss. Please don't have regrets. They offer no help. Your advice is solid though that we should take a breath and research all options. My hope for you is that your memories of your husband will always be a blessing to you and all who knew him.
It is difficult to look back and say I wish I did this or that as the outcome may not have been any different. It appears you did all the best treatments. May your love and memories of each other be cherished and stories be told of your adventures everyday. David
Wow. Your post reads like an encyclopedia of all the best things to do. 13 years is a long time considering how virulent his case was. He was lucky to have you as his partner, working for him all the way.
Dear poppymom, 13 years explained . What a tenacious battle you both fought . I’m happy you had him home . That is were the heart is . I commend your love and caring for him til the end . Your wings carry him to were you meet again . No more suffering . It takes great strength to share . Your truths are our realities as well . We all punch the APC as best we can . I pray for your health and happiness after mourning .. I don’t think anyone could have done more to fight this then you two did . I say that in the end pc doesn’t win .The spirit goes on . Take care ,thank you💔🙏
Words dont cut it....you did a great job....pc is like skating on thin ice....across a very wide river....in time may the good memories ....bring a smile....peace bw
What a beautiful story...thank you for putting all this information down. I am so sorry for the battles you and your husband had to go through. I have tears just relating and knowing our time is coming. Hugs to a mutual wife of a warrior that has and is still doing her absolute best day by day...
Sending you big hugs poppymom. 13 year battle...you both have been through so much! It sounds like you have tried everything available. Please don't have any regrets. To have you by his side must have been such a comfort and source of strength for him. I hope you have the support and help you need right now. Please know that we know and share your pain.
13 years of your efforts and love. . God bless you and may his soul rest in peace. Please don't have any regrets , this fight is brutal and you did all you could. May you have all support and help you need right now.
My thoughts are all beautifully expressed in the replies above. My thoughts are with you and your husband was blessed with your love.
I know that I will likely succumb to the scourge. But I'm completely at peace with it. It is not in my hands. And who am I to second guess? It is in my nature to fight it so I won't give in easily. But when I go, I go.
You had 13 years. You did what you could. If you had done things differently would he have had fewer years or more? Who knows? You'll be with him someday regardless.
So sorry to read of your loss. You did a fantastic job of caring for your loved one. Cherish your memories and have no regrets for doing your very best.
Thank you for writing this-- it's very helpful to us facing the same destiny. You supported him so much-- don't have regrets, this is a complex disease that can take many paths. Wishing you peace and strength.
I am so sorry to hear of the loss of your husband but am very thankful for your post. May you think of your husband often and only dwell in the good memories you have of him.
God Bless you and your hubby, you did all you could. To be honest you had 13 great years together, just remember the good times. PC is difficult and many do not make it 13 years. I know when I was diagnosed ( I was already at advanced stage 4 with bone mets everywhere) my first opinion said maybe many years, my second opinion said 12 to 18 months. Its been 20 months, I was hoping for 4 good months with my wife and its been 20 wonderful ones. The doctors will tell you they dont know, everyone is different and everyone takes treatments different. Look he was golfing in March, wow what a dramatic bounce. Just think on the good times and one day you will see him again! This time in a much better place where we have no more pain, no more tears and no more diseases! Take care and God Speed!
Please accept my sympathy on this horrible loss of your beloved husband. Tall_Allen of this group is one of the top experts (if not the top) here, and I thoroughly agree with his reply to you. You did everything right and went way above and beyond what most caregiver wives would or could do. I wish you comfort, strength and peace.
Dear poppymom, Please accept my sincere condolences on the passing of your dear husband on November 19. For 13 years you both fought his terrible disease with all the strength you both could muster. You have been an inspiration to all of the other caretakers on this site. Your dear husband's pain is gone and he is thinks of you every minute. I know he will be with you for the rest of your life. God Bless him and God Bless you.
You were and are a warrior for your husband. My heart goes out to you for providing such strength and support! We should all be so lucky to have someone like you!
May your husband rest in peace and may you find some peace in life. You have been beside him all the way on his long journey. Now you need to rest and take care of yourself. My thoughts will be with you.
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