On Nov. 25, 2018 I lost my soul mate of 45 years to recurrent prostate cancer. He was diagnosed 7 years ago as Gleason 8, underwent 42 radiation treatments and 2 Lupron shots, and in Feb., 2018 at age 83 his PSA started rising, to 5.0. When they did a CT scan to restage the prostate cancer, they found incidentally an aggressive transitional cell cancer of the kidney, supposedly unrelated, and said it had to come out, and we'll deal with the prostate later. Kidney surgery was successful and when we went back for a 3-month follow-up they found PSA was 20 and sent us to MO. A bone scan then showed skeletal mets., and the MO tried Lupron and 2 weeks of Casodex, no response then 2 weeks of Xtandi, no response, then 2 weeks of Zytiga, no response and PSA doubling every few days. He was hospitalized several times for dehydration, sent to rehab. for 2 1/2 wks. and at the last time his PSA was over 3,000. He died at home 1 week later.
I am grateful to God that he did not suffer longer. My advice is: 1) think carefully about continuing treatment. I wish we had given up and just spent the last 6 wks. at home (instead of 3 ambulance rides, hospitals and rehab) but I kept thinking we could squeeze a few more months out of this beast, that perhaps one of these expensive, high-powered blockbuster drugs would do the job. 2) When PCa recurs it seems to come back with a vengeance. Be prepared for the worst. 3) Outpatient hospice care is not that helpful--visit only when you call them and depends on the quality of the nurse assigned to you, not on the people selling the program.
Be grateful for every day you have with your loved one. It is a gift from God and He will sustain you until you are happily reunited in heaven! Blessings to all.
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Hawk99
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I'm sorry for your loss. You have had to make a lot of very difficult decisions. I hope you are not beating yourself up about them. It's very kind of you to help others based on your experience.
Thank you for your kind words. I keep wanting to rewind the tape but God's plan only moves forward, never backward. I hope to be able to help others so his death can bring glory to God.
The fastest I've ever seen personally was in a 45 yo man with 2 kids - he died within 2 years of diagnosis. He had small cell PC. In this case, there were two cancers.
My husband- diagnosed at 54 had 4 line of treatments before he passed away 21 months later. Docetaxel 6 rounds finished Aug 1 2017, by Oct we found new bone Mets. Started Zytiga in December for 2 months - did nothing PSA went from 31-688. PAC micrometastasis to his lungs- cabazitaxel started in March 2018 PSA 1098 dropped to 124 after first round, by Aug his bone met pain was coming back- tied a few more rounds of cabazitaxel as his numbers were ok- Oct he went on Cisplatin and etoposide- died Dec 29th.
So sad for you. I feel your pain but also your strength. And I empathize with you in your grief. Please remember no matter how hard our men fought to stay, God had a special plan for them and reached out his hand to carry them onwards to free them from suffering. I truly believe that.
I am sorry to hear of your loss. I wish that your soul mates end of life experience was not so troublesome. Peace be with you and your loved ones soul. Soul mates are tough to lose, cherish all the positive memories. God bless his soul and bring peace to his soulmate dear lord.
Thank you for the prayer. I'm hanging on to Jeremiah 29:11, knowing God has a plan for me just as he did for my precious loved one. His work on earth just ended before mine, and now he's enjoying eternity with the Lord. Can't wait to join them.
I am glad I am on your prayer list. I am afraid of being buried and want to be killed by a Gator. Being on you prayer list saves me the time and expense of traveling to the Congo...being on your list brings the Gator to me. You could probably charge for this service.
So very sad for you. The "system" at times seems to have no heart. When my wife was ill, I always did what the doctors said was best. Am I a dr.? Course they were who got her into the fix she was in in the first place. Her brother took care of her mother who had lung cancer instead of placing her in hospice and we thought that was so noble. By the end we all knew that was not good for him, his family or her mother. You have strength, may God bless.
I know you are still grieving from last November, but would you be kind enough to tell us where your husband was being treated and by which doctor(s)? Thank you... May your husband rest in peace and may you find solace in knowing that he is no longer in pain and is in a better place.
Thank you very much for your reply. Again I wish to offer my condolences to you, your family and your friends. They say time heals all wounds but scars remain. May the memory of your dear husband remain in your heart forever.
from what i found on this site any psa above 2000 is a death sentence. the facft that he lived to 83 isn't a bad deal. u think of all the people u read daily in the obits of the local newspaper they die from 40 or earlier to past your husband's age. he lived a very,very long time. i've been at it going on my 11 year and so far things are manageable but when it gets to the point i don't want anymore treatments let me go comfortable to meet my family and friends in heaven.
When you have stage 4 PCA your PSA is not the major factor in determining your prognosis. Our MO stated she had a gentleman with a PSA of 10K and he was out on the golf course, while she had another with a PSA of 50 bedridden. My husband's PSA was 500 when he passed away.
I am so sorry to hear this news. Y’all have been a in my prayer this morning, thanking the Lord for the years you have had together, and for comfort to you as you now navigate this life on earth without your soul mate.
Thank you so much for your prayer. Except for God's grace the pain of this loss if almost unbearable, for great love leads to great grief when it is gone. I am attending GriefShare, a Christian grief support group, and they assure me that I will get better in 6-9 months, though the sadness never leaves.
I am so sorry for your loss. I just lost my husband of 24 years in Dec 2018. Your faith will help carry you through. I too see the mercy and grace in my husband's death. Our God is a loving and merciful God. May you find peace and strength, especially in the quiet time.
Please try and not have any regret or guilt about his last month's. You did not know it was his last month's. You did what any living wife would do, you fought for your husband's life.
So sorry for your loss. Thank you so much for sharing your end-stage experience. Take solace in knowing that he is whole and healthy again in his new home. Peace
I have about a 2-week supply of Xtandi and Zytiga unused. These drugs are too expensive to trash-our co-pay was thousands. Can anyone tell me how I could donate them to someone in need without getting in trouble with gov't regulators?
So sorry once again. You can see by the lack of replies that no one seems to have an answer. I googled before and all I really got was that no agency would get involved: re medical tampering, prescription drug issues, etc. I will probably have several unopened bottles of Xtandi when I fail and move on. Like you my only thoughts would be donation and helping others. Maybe hang on to them for awhile? Maybe an answer will come. God bless you for thinking of others at a time like this.
Offer it here. I got a few months of leftover supply from “wifeofvet” that she offered after her soulmate passed. She just sent them by mail and no red tapes to worry about. That was a blessing to me when I was facing a 30% copay of Zytiga.
I’m so sorry for your immeasurable loss. We make the best decisions we can at the time we must make them and while second guessing is hard to avoid I truly believe we are making the decisions we are supposed to make all the time. I’m sorry for all the pain you and your loved one suffered and for all the pain you’ll continue to bear. I know you’ll find strength in your happier memories. God bless.
😢😢😢 so sorry to hear the monster has taken another brother, my father is 87, his doctor has decided as we did as well to give him drugs to keep him comfortable no surgeries. I have stage 4 with Mets myself so it seems the monster will get one of us one of these days. All we can do is talk to our maker and live each day to the fullest. 🙏🙏🙏😡😡🙏
I’m sorry for your loss. It takes awhile to erase these end memories and get back to the good times, but it will get better.. Any one of those treatments could have added time, but it wasn’t to be, so you did your best. Prayers for you and your family.
Grieving is part and parcel of this life on earth, isn’t it? the Lord promises peace to his people as they look to him through prayer. Phil 4:6-7, I remind myself of this daily...peace guarding my heart and mind. I think this is a holy peace, knowing the God of heaven is hearing our cries, this goes beyond our understanding. Grieving is to be expected with such a great loss, but for us, it is not without hope.
The “what if’s will only cause undo stress...continue to speak to your soul the truth of God’s love for you, his faithfulness to you and your husband in his last days. Your last months may not have been your plan but they are under the sovereignty of God for his purpose and your good. You can rejoice that your husband is free and no longer bound by this body of sin, but in the presence of the Lord.
The Lord will be your comfort in this overwhelming season of mourning...joy will come, he will turn for you your mourning to dancing and clothe you will gladness...this is our promise in Christ Jesus, psalm 30:11-12. (I will need reminders of this when my husband’s time comes and I am in your shoes. I’m speaking all of this to my soul as I type. It is a battle to keep one’s head/heart where it should stay when all around us is such pain and loss.)
Do not fear, for I am with you; for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with my righteous right hand. For I am the LORD your God who upholds your right hand, Who says to you, Do not fear, I will help you. Isaiah 41:10,13
He will meet you during this season of mourning, even if you don’t feel it at this time or anytime soon. He is faithful to accomplish that which concerns you. I trust your church will continue to minister to you as you walk this hard road, tell them your needs and allow them to serve you during this time or in six weeks when it seems they have forgotten.
Thank you too for that very helpful information too! So hard to know when to pull out all medical tools and when to let it go and lean into making best death possible. No easy choices. Thank you for posting.
so sorry for your loss. when my soulmate passed it was after three months of pure hell trying desperately to pull out all stops. the end was unendurable for us both. in that time, he went from 185 to 82 pounds, unable to even stand up on his pencil thin legs. right up til that time he was a rugged and strong 69-year-old. i agree whole-heartedly with what you say. if i had known how the end played out, i would've stopped all treatment with my medical power of attorney rather than try to reach for the stars. a year has passed for me. i can't even picture him sick in my mind. all of my memories are of our younger (pre-cancer) years. the mind has a great ability to protect us from horrible things. god bless.
Your experience sounds similar to ours. In the last 3 months he went from 215 to 155 lbs. and none of the block-buster drugs slowed down the PSA doubling every few days. Thankfully he had no cognitive or memory issues, never became depressed, and the skeletal pain was manageable. I was the tearful one but we kept fighting with one treatment after another. I encourage others to take careful stock of your prognosis and plan accordingly, realizing it's all in God's hands. Thanks so much for the encouraging words that this grief will subside.
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