Well, after three infusions, I've been taken off the VISION (Lu-177) trial. It wasn't doing me any good and there was starting to be damage to my liver and kidneys as side effects. My cancer was doing quite well, however.
So, for me, there are no further treatment options. My cancer has proven to be far tougher than anything that could be thrown at it. You really have to admire it.
I'm going on hospice now (one criterion is no further treatments). At least I'll be rid of the side effects! It's all new territory now so I don't have a clue what's next. What is, is and we deal with it as it happens. I have the most wonderful wife any man could ever ask for with me on this trek. There aren't words to express how much her love and help mean to me. I am truly blessed.
Courage, mes braves! The way is forward!!
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Stegosaurus37
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Sorry to hear this news. The greatest truth of life is that any one who was born..will have to die some day...cancer or no cancer. No one can be immortal.
At this point the goal is to have as much comfort ...as possible...I hope your doctors are compassionate enough to keep you 100% pain free and anxiety free in this news phase of your life. Lots of good wishes and prayers for you and your family.
I recall that you've obtained permission for some of the atoms from your ashes to make their way to a quite lovely place on Earth after you die. We all should be so lucky as to be able to look across such a lovely view as we remember our dearly beloved ... and even the occasional Stegosaurus. Peace to you and yours.
Oh, how very sorry I am to read about the unsuccessful Lu-177 effort! How admirable you are! You fought valiantly & move on to the next step with great dignity & reconciliation. You are blessed indeed to have your devoted, loving wife who has stood by you throughout & will keep you in her caring embrace. You & your wife are in my prayers.
I'm sorry it didn't work for you. I also am impressed by the power of cancer to use unconstrained evolution to work around almost everything we throw at it. It would be immortal if it didn't kill its host. There are many palliative therapies. One patient I corresponded with got a lot of pain relief from Mitoxantrone, an older kind of chemo that did not increase survival but did relieve pain. Of course, radiation does wonders for pain.
Have you thought about giving BAT a try ? Low / No side-effect load, and half the time it works ! It usually resets the ability of Zytiga to work again too...Whats your PSA history while on Lu-177 ? Best of luck to you regardless..
I've thought of it, but I'm not sure. My cancer seemed to be doing fine before ADT and has certainly been doing fine since. So I'm not sure whether the presence of testosterone would make a difference. Still, it doesn't hurt to ask so I'll bring it up with my oncologist.
Use your search bar and find out what you can about BAT. f you decide it would be worth trying be aware that many doctors will denigrate such a treatment. You have nothing to lose and a chance to extend your time and meaningful as well. You might have to find a doctor that will be open minded enough to --go to BAT for you.
You might wish to speak with another member on HU, Oct18.
You say your weaponry is in short supply. With a wife such as you have been blessed to have can you gird your loins one more time?
You know about the Right to Try Act don't you? That could possibly open a door to another treatment, which shows promise, that is at this time undergoing trial.
If nothing seems feasible or promising then be at peace that you have done more than many of us would have done.
I admire your strength. Do take some time to look into vaccine/immunotherapies if you have not already. City of Hope had a patient with an extraordinary response if I remember correctly.
I pray for your continued strength fighting this battle. Do not lose hope. Take time to laugh and make the most of every day. Your posts have added greatly to this website and I hope you continue with your thoughts here.
I'm saddened to read your post, but we will all reach a point where laying down our swords is a better choice than continuing the battle. I do hope that you will continue to post as long as you are able.
You and your wife will be in my thoughts. May this last stage in your journey be peaceful.
I haven't lain my sword down. The fight still continues; I'm just running a tad short of weaponry. You can lose but you are never defeated until you quit. Attitude is everything; don't lose that.
Sorry, I guess I misunderstand hospice, as my only experience with it was when my father-in-law went on it. In that case, have you thought of BIRM or fenbenzadole(spelling?) or any of the other supplements that people here have tried?
Kim Jun Un shot his own uncle with a cannon .. APC deserves no less . We are trying to save the host however .😂. Just a metaphor for my distaste for our mutual nemesis APC .
You’ve been through so much. I’m sorry to read that you had to come off of the trial. Bless you as you continue life’s journey.
Sounds like you are making the right decision for where you are right now. That's the key: what is the best kind of care for me right now? Often people endure terrible side effects for no gain and deprive themselves of the best care they can get. By being on hospice, you can focus on being comfortable and making the most of the time you have left. If some great treatment option comes up, you can go off and persue treatment.
Really hoping for the best for you. It takes a lot of courage to go through this journey through uncharted territory that we are all on. We are with you in this.
Everyone else has relayed my same sentiments. I admire your ability to realize what is best for you and your wife. You are truly blessed. When my day comes I hope I can approach my waning days with such dignity. You and your family are in my prayers.
We were able to get my father a palliative radiation treatment for pain while he was in hospice care at home. His pain was from cancer in the sacrum and hip. It took a little doing to swing it, but we had a great hospice team and got it done, including getting advice from them on transport to and from the radiation clinic. We think it bought him some time, but are certain it helped delay pain. The key word is “palliative”, since hospice doesn’t cover curative treatment.
You have an attitude that we all can learn from. You have made choices that you believed right along the way, assessed your viable choices for treatment and when you and your doctors believed that all useful treatments had been exhausted to decide to end treatment and move onto hospice care. You do not seem to be profoundly sad or unhappy with your choice but seem to be more accepting of where you are.
I hope you have been able to enjoy your life along this journey and that now, as you move into this new transition, that you are accepting of what is ahead.
I think you are a model for the rest of moving through the phases of our lives and our disease that follows us. It all seemed summed up by your comment "My cancer was doing quite well, however." This matter-of-fact observation shows your respect for how it can impact your life.
I wish you continued clarity and a peaceful transition. Thank you for sharing your experience and outlook with us.
Hi Stegosaurus, Sorry to hear that Lu did not work for you. It did not work for us either. My husband was only able to have two infusions, very little side effects and we were hopeful, but the results were mixed and I believe that because the cancer was in his bones quite extensively it was going to be an uphill battle. So now we are in a similar situation and I intend to try and look after my husband at home. He is going to be discharged from our local hospital this coming Wednesday and hopefully with the help of health assistants and equipment from Hospice, and my amazingly supportive adult children and friends it will all work out. Good Luck with the rest of your journey I will be thinking of you.
Indeed the way is forward; you are truly inspirational. You have fought it from every angle and I believe you and your wife will address the next chapter with grace. Thanks for what you have given our group.
Stego, I just prayed for you as you start a new phase of your PC without meds. I pray that you will have time to take care of personal family affairs, time to tick off a few more bucket list, time to spend with your loving family and wife, and most importantly accept Jesus Christ as your Savior. At 77 (my guess after reading your older post), this decision may not be as bad as one would think. If you are able consider each day alive as a gift of God and that He still has a purpose here on earth to do His will and give blessings to others you encounter. Someday, I will also be at the same stage where QoL is more important than life extension by giving up on treatments. I am currently at 73, I have began to think about these things too.
A whole bunch of people who don't know you are very saddened by this. I even shed a tear for you, and they take some squeezing out these days. But never give up and think positive through whatever cards are dealt to you. You've seen a lot of good years. My daughter saw 13. Rejoice in what you've achieved over many great times. I wish you well
One of life's many kickers. Accounts for my weird sense of humour like many old souls around here. It's not the length that counts it's the quality. I tell my wife....
So very sorry to hear the Lu-177 did not work for you. My husband had qualified, but was denied. He's still in the trial and is now on Xtandi , standard of care.??
So nice to hear you have have a wonderful loving wife by your side. It's so hard to watch your loved one go through this.
Hey Steg. I am really sorry to hear the Lu-177 didn’t work for you. I really admire your strength and positive attitude in dealing with that news, and what the future holds. When I start running out of viable treatment options I hope to emulate you and become an honorary “Stego-man.” 😎 Meanwhile, I will keep you in my prayers. 🙏. Stay strong.
Dear Stego, I live in Oregon (as you mentioned in one post you do also), in Bend specifically. I mention it as I have been living with death upon my shoulder too, since my diagnosis in 2007. That ignited my exploration to find the deepest understanding of life and its meaning altogether. I undertook the study of deep meditation from the Kashmir tradition. This has proven to be the greatest gift, providing great understanding and supportive peace, such as I cannot even describe. After 7 years of study I am now a teacher of this form of deep and effortless meditation. And I offer it for free to those approaching the end of life, such as yourself. I am offering this to you if you would like. It takes just one or two sessions to learn and to have the whole practice for yourself. The gifts of such a simple practice are great. My personal blog/website with more info is meditationbend.com.
Sorry pal, but it is the journey most of us will face, sooner or later. That said, I would still make up a short bucket list of some things that you would like to go while here and try to do as many as you can. Even hopped up on Oxyi will still allow you to enjoy some things. Our group here has a drag strip hot rod that we take cancer patients on short tours around town and perhaps others can likewise think of ways to make the last days of our comrades better.
I think that all of your brothers wish you a happy journey.
May God bless you with love Stego .. I am put a back by your news friend . Whoa nelly .. I too have this type of love at home . Nothing else matters . I am reeling from this news . 🙁😫.. wtf?
As many others are, I am stunned. There are those who went on hospice, and then came back. I seem to detect some hope in you yet. I really hope you stay with us for a while. We'll keep the light on.
Steep- I admire the way you expressed yourself in your post and hope to be able to deal with my future as gracefully and brave as you are dealing with yours.
Be well my friend. Tough news to hear but your chin is up and you got the love of your life next to you. That all one needs. Prayers for your journey (we're all going there someday)
My best to you Brother on this new chapter of your journey. Yay! to no more d*mn side effects. May you have a long and uneventful hospice stay. So, glad to hear that your wife has been/will be with you.
Wow,so sorry to hear that..Myhubby58 is on taxotere.He going for his 3rd treatment..But it ain’t over yet Stegosaurus37..Stand tall and strong..God gotcha..
"Courage, mes braves! The way is forward!!"... point taken, Steg! I've been following you since joining this forum last year, and wish you the best... I won't forget the vinyard post... To quote the Kingston Trio (yah, there's a Sinatra version), I hope "It Was a Very good Year"...
We all find Out just how strong we are at our most difficult times. Your strength is an incredible inspiration! How awesome to have a spouse by your side that you feel so strongly about. That is truly a blessing
Wow, stegosaurus, you are incredible! What an amazing positive attitude about this nasty disease. So sorry 177 didn't seem to work. You've got to admire the strength of the human cancer cell--too bad we can't launch it into space and blow it to smithereens, permanently!
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I've been on Erleada (Apalutimide) + ADT for 16 months...Still works, but waiting for the other shoe to drop.
Started hospice
I'm at the scary door labeled chemo
Questions on treatment?
Worried Daughter 
