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Advanced Prostate Cancer
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When is enough enough?

I'm facing a difficult decision. My PSA (620+) continues to rise and bone scans continue to show growth on my spine and ribs despite efforts with all mainstream treatments.

It's been suggested by my MO that "we need to get you into a clinical trial while you still look good" meaning while I'm relatively healthy. I've looked into available trials. MD Anderson, in nearby Houston, has only phase 1 trials and some seem possible none seem exciting.

I'm just so tired. I can't generate much optimism for a new effort, that would no doubt include weekly trips to Houston and unknown side effects. I have back pain but I don't feel sick.

It seems ungrateful not to try. When do we know it's time to switch to palliative care?

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Have you done any genetic testing to see if you have any "actionable" mutations? You also may have neuroendocrine (small cell) developing from treatment. Those cells aren't sensitive to hormone-based treatments. Finding out may help you to better direct your treatment.

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It is truly the toughest of tough calls. I am right about the same place with you. My PSA is around 1000, and after 10 rounds of Doectaxel since Jan of this year, I am at the crossroads myself. All of these infusions and it only got down as far as 776...from 2250 in January. My MO thinks maybe the 10 is enough, and it is time for a break. He will not go over 12 infusions without a break. I had to take a break for three weeks in June after breaking a tooth, going on antibiotics for ten days...and the bone pain that accompanied that break after missing the chemo was overwhelming the 2nd and 3rd week. I go get scans next week, and if there is no node or organ mets, then we are going to use 223 to get the bone mets that are currently from my head to toe....thousands of them. My bone scan looks like a psychadelic Christmas tree.

If there is organ or node involvement, the we need to get back on chemo...Jevtana if just nodes, and lord knows if there are organs.

Most days I feel decent, mostly just tired. Can't really sleep well...and they have me on a super strong Opiod regimen to control the pain (Norco 10mg 4x day, Morphine 15mg extended release 2x day, Morphine 15mg immediate release for breakthroughs.

So here we are after nearly 3 years since Dx, and with huge life changing decisions coming. I know that I have time left, and want to maximize it with a decent QOL. The questions now beg- when? When to stop the aggressive treatments?

We are looking at Clinicals as well - let me know if you all come up with something good, and I will do the same. Peace.

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l hope the best for you.

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All the best to you

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Thank you

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On the side of you and life, and your life isn't over. I'm wondering what combo meds you tried along with holistic treatment to maybe brave things in a balanced manner, but I respect and admire what you've done as my dad chose to go in ultra aggressive as well as you said , you have years left my friend. Keep us posted.

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Thank you

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It is a difficult journey. Please keep us posted!

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I will Mel. Thanks

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Cancer is not combat. It's life. The metaphor that cancer is a fight places the person with cancer in the position of having to win or lose. If l die is it because I'm not strong enough or smart enough to have won? There's a lot of guilt for a cancer patient. l worry about not having lived up to my promises to my family , not having provided enough. As a caregiver please consider the impact of the words you use . What is intended as support and encouragement can become one more load to bear

Thanks for your encouragement . If you discover that miracle one shot cure please let me know.

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Whether you stop treatment or not (an intensely personal decision), I hope we can agree that palliative care can be a concurrent step rather than only a successor step. My cancer team works with me to manage pain now. I am using fentanyl patches and oxycodone to manage pain while I continue treatment with eligard, xtandi and xgeva.

I don't know how to answer your question, but I wish you well in reaching an answer that is right for you.

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Great to hear from Yost!

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Yes, it’s good to hear from you, Yost. As of yesterday, Zytiga has been reduced to two tablets. My husband will begin Xgeva in October and switch from Vantas to six-month Eligard injections at the same time. Our specialist does not recommend more chemotherapy. He told Les that it is okay to opt for palliative. I didn’t collapse of fright, thank God, but have had a tough day today. Not Les who has been tilling for hours. I think he “gets it” though. “What I need is time,” he says. Don’t we all. He’s going to try going from 10 to 5 mg of prednisone. I bet he can. No pain yet except when bending. We’ll keep fentanyl patches and oxycodone in mind. Many thanks. Mrs. S

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As Yost said it truly is a personal decision and It's your journey. There is no one way to answer you .Some days can be better then others and you mentioned QOL. A lot of things to consider is for certain .Gods Speed to you Sir.

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Thanks

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Only you can decide what is right for you. I would feel horrible to give you advice on your treatment decisions and be wrong. I am a only cancer patient that lives with prostate cancer.

What I can tell you is that I live in Houston and I am being treated at MD Anderson. I was there today. I can tell you that my experience has been good and I am responding to treatment. But you and I are not the same person.

If you feel like you are not done with living, fight! But you have to decide that for yourself.

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Thanks Best wishes

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l went to MDA first thing , five years ago. It's a great place. It's well organized and they take service seriously. I'm overwhelmed with numbers of people there. So many people with cancer.

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Nationwide epidemic..

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Rmanns I will pray for you to be at peace...

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Thank you,

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Sorry to hear you're having such a hard time, it's a difficult choice that only you will be able to take.

What treatments did you have? All of them? Sometimes you can try rechallenges of the same ones and there's a chance they might work again (like Xtandi and Zytiga after chemo).

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I've tried many things, including switching from Zytige to Xtandi.

Thanks

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Had this discussion with my wife when treatments had me so far down I was worthless. Just spent my days in my chair or on the couch. Couldn't get out of a chair without help. Sat around wrapped in blankets because I was freezing at 80*. Ended Chemo and 4 1/2 month later was still going down hill. 24/7 belly pains from moderate I could handle to sever witch folded me up and put me back to bed. No QOL. Cut back on meds and got better. We decided that possible 3 years felling better was a lot better than 10yrs surviving as an invalid.

Drs not happy with me reducing dosage, but I had no life. Won't go back to no QOL just for a little longer on this earth. DNRs and POLST in effect so no extreme measures when its time to leave.

Good luck with the decisions we all have to make one of these days.

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Thanks

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Best wishes!

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I can't help you with your decision but I my thoughts are with you whichever way you decide to go. Some of us here will die with prostate cancer and some of us will die of prostate cancer. At age 56 with advanced PCa (widespread visceral mets) and PSADT of 1 month I am in the latter camp - unless someone finds a cure in the next few years - and I know that down the track I will be facing the same decision as you. There is no right or wrong its our life and we choose how to lead it. Good luck brother.

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Thanks Take good care.

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I’m in your camp.

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I'm curious as I'm still learning, what is psadt. I know what art is but I'm trying to understand the distuishing line you made between being one that will die with not of pca?

Maybe , I believe in miracles too much but my dad fell I'll 2 years ago with will over 100 Mets through body. I'm amazed at the speed of research. Please dont take this wrong, but luckily for you we still live in a pretty patriarchal society and more attention is given to diseases that only affect men. Women's diseases, such as endometriosis, get far less attention by media and big pharma so my hope is that a bias against my own gender that is proven in American medicine, will actually still work for the myriad of miracles ahead for you and my dad. And if not I love your courage, your openness, your acceptance. Its awe inspiring to me. My best to both of you, actually all of you xoxo erica

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Hi Daddyishealing, PSADT = PSA double time. In my case its 1 month. PSA is currently 10 but at this rate it will be 640 in 6 months. I am now hormone refractory and chemo resistant so unless something new comes along soon PSA will be off the scale very quickly.

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Right there with you. Odds are doubling will slow but that doesn't really matter. I watch the numbers obsessively just because that's all there is, but it's the actual growth now, so scans come too far apart and never seem to tell the right story.

This message strand has been very helpful. I'm not as frightened as l was.

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We are all in this together but check the funding rates for types of cancer. PCa is not well funded because of the perception that it's just old men, and more accurately PCa has not been easy to crack with immunotherapies.

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Damn I hate this disease. I will give you my opinion only because you asked us. You will know when it’s time. If you are asking the question, then I don’t think you’re ready to throw in the towel. Explore the trial options and pick what you feel is the best one for you and roll the dice. If none sound worth the effort, you will know. You have a big fan base here rooting for you if you decide to keep up the fight.

Schwah.

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Thanks

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my husband lived four great years with stats like that after 9 years of treatment before that. only the end stage was horrible and only because of an error made by a nincompoop who assumed he had sepsis when he didn't and withdrew the antibiotic she put him on causing the c.diff that killed him. don't give up. you only live once and you've still got good times ahead. go out an have some fun.

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Thanks

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clinicaltrials.gov/ct2/show...

Have you looked into this trial?

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Hi there

Like you I have the same symptoms of rising PSA (not as high as yours) and still relatively healthy (asymptomatic is the word MO use). I had a skype consultancy appointment with an australian MO today who had been treating me with Lutetium 177 for soft tissue metastasis with some degree of success last year but with my rising PSA and bone mets spreading has suggested to me look at some new treatment called Actinium 225. Just wondering if you have this available in the USA???

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Actinium225 is being used at UCSF. Dr. Flavell presented an anecdotal case of a complete remission by psa <0.1 and by negative Gallium-psma scan for a patient with bone mets from head to toe and a psa of 3k

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Thanks, l don't think I've seen trials for that drug.

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Wow!

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Does anyone know link to trials. If I find I'll post

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ClinicalTrials .gov then search by name for Actinium225

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Only you will know when the time is right- and I think deep down you will just know. You will know when u feel like you can’t take any more treatment or side effects. Whatever your decision there will be many people here and elsewhere supporting you x

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Thanks

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Good words..

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Firstly I want to say I have no right to tell you what decision you should make as I’m at a much earlier point in my Cancer but I’m thinking of you and the horrible situation. There is one thing that struck me. After my operation I went to the local Cancer support centre and bumped into a guy I was in school with many decades ago. He has lymphoma for many years. He said he went through all the regular treatments but none of them worked until the doctor offered to put him on an new one and that finally did. If there is a clinical trial you can get in maybe it could be the one treatment for you.

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Thanks, yes it could happen.

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Do it.. I’m on a test drug until failure with great results so far. I wish this for you.. yet ,only you and an expert will find the right thing for you...no one can reduce the weight of this question we all will face.. Take advantage of this day. We’re all just passengers on this ship.

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Awesome lulu. May I ask what treatment . I'm trying to learn more. Xoxo

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Dear Rmanns, You've been facing some deep challenges of your life. I don't have to even speak about what it's like. If I've learned from being on this journey with my husband the endless decisions we make.

I've been processing this from day one, where my husband found it better for him to keep his head out of it except when I brought him the choices after researching. This process actually helped me find my own personal philosophy for living and dying. It doesn't make it all easier, but it does allow me my own strength and freedom.

I look at how to deal with the ever-changing situation. As I thought about your situation, a thought occurred. Is it possible for a change of scenery, or to take a break. No doctors, no working on it.. be in things that bring comfort to you. Maybe take a break especially mentally- give yourself some space so that something can enter that is congruent with you. Take off the pressure. We found that we have to give ourselves breaks. When we are in more critical situations, it's been harder, but we pace ourselves the best we can, when we can... and then, move forward. I'm only sharing what works for us. Cancer wants to take our life, before it does physically. The anger I have is that I don't want to be controlled by 'cancer' and this helps make me stronger. Otherwise, I'm on the floor.. and when I am on the floor, it's okay too.

There are so many stages. Our minds go to many places.. It gets pretty difficult and crazy making.

I attuned myself to recognizing when a decision isn't there, it just isn't there, it's not ready to express itself. I learned to trust that also. And, then the balancing act of realizing we have to kick our butts to get something moving.

Space from the pressure is a relief and good medicine. It gives me strength and clarity to stay strong in my beliefs.

We don't give up. I don't think there really is a giving up. It's more likely changing ones' focus.

Our way is to 'ask for help'... from our belief system- I like to 'exhale' then wait to see what door opens with information.

I read a beautiful book about synchronicity, it says, 'take the first step', no more, no less and the next will be revealed.' I ask for help- I open the door, and when the first step does come- I take it.. just the door opening energizes me psychologically/spiritually.

I can see you opened this door to the group. That's a great step. My wish is the doors open with your choices. Know you are not alone. It's no walk in the park. It takes grit. At the same time, there's an inner recognition of our strength, and a deep respect for ourselves.

do you know the song.. by Jackson Browne, 'take it easy'.... I love to put that on for a few minutes and let go... genie

PS: I've been told... my writing is too long.. please pardon.. this journey is something I am with every day...

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Don't worry about the length of your post, every word rand true.

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Thank you. Early in life I did learn the strategy of taking the first step and then waiting. It has helped me innumerable times to discover what l actually wanted. Jackson Browne also wrote "Doctor my eyes . . . " that reflects the permanence of some experiences. I'm finding myself reacting to those permanent experiences. Clearly, there is some last step, if taken cannot be taken back.

Again thanks for your good advice to step back and relax when l can.

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Rmanns, I'm not sure there is a last step if taken that can't be taken back... For me, it is where one focuses. There was one fellow here about 6 or 7 years ago. I forget his name. He was a regular poster. He decided to choose palliative care and actually felt his quality of life improved... he did better than he had been doing, and that carried on for a good while. I'm not sure of the details. It was quite moving to be a witness to his choices and communication. We are so lucky to have each other. It seems there are many people's views for many people.

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Genie-Paul, you inspire me as you cope and adjust .. In you ,I see hope for my wife in the future to continue on and transition with peace and harmony. “ A break” we all need a break from APC thinking. Yet ,here we are ,comrades in suffering and life.. blessed are the weak and suffering ,for they shall inherit the earth. If one believes in spirituality and or an afterlife then the end is not so scary. who would choose to die in fear of what’s to come next.. ?? No one. We don’t have control over much . Except our outlook . I’m working on it. This voyage for me is a soul searching event as well as it is a ride in a chemical expetimental craft that can over turn at any time. Stay healthy and thrive our friend.. Peace to you on this September day. Scott

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Dear Scott.. Apparently, we have a special connection because I feel the same about you. I have so much to share. I will return as soon as I can. I want to share 11 years of our history with the PCa diagnosis and what we've done as far as protocols. We definitely have gone out of the box... and continue to do so...

I'm also not certain that one has to believe in anything except a deep respect for the challenge they faced in life- and that PCa doesn't make up our lives. I will say that I will probably do no real intervention with any heavy conventional drugs when I receive news that time is coming close. I hope to believe, the life I've lived will carry me...knowing I've helped people.. helped change lives, raised to kids, two grandkids.. helped my husband these past 11 years.. It's an honorable way for me to think about who I am.

I do have my own brand of spirituality... I also believe that I've seen it.. experienced so much synchronicity that THIS can't just be it.. but if it is... I still feel how I've lived will carry me. I say this particularly for the many people who don't have an after-life belief system. Or, the many who may have doubts. They also must have the space to feel they can take their last breath and feel their spirituality is how they think and feel about the life they have lived.

And, if they are in doubt of that life lived, remember the Jimmy Stewart Christmas Story. It's very powerful.. We have changed lives. Our lives have been of value. And, our lives will continue to be of value no matter what, even when we are not physically here.

Thank you Scott.. I so appreciate your words.. genie

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Life (Does) have value.and we must find it. and life is suffering.. I respect your integrity. A clean conscience and a job well done with the family . Its not only a reward for you, but a blessing for your family. A life without this genuine love is not living. We pray that our spirits stays strong when our flesh grows weak. Peace ... & thank you , as always . Good to hear from you..

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Your eloquent words resonate with me. Thank you! Joe

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Genie would you mind sharing the beautiful book about synchonicity you are speaking about? I too am a wife who reads, studies, researches everything possible for my husband who, like yours, prefers to stay out of it.... I am thinking it will help. thank you

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cloc, yes, of course, though you may be surprised. I was surprised when at the time, my 81 year old friend and healer living up in Montana asked me to read the book by Ken Roberts, A Rich Man's Secret. 'an amazing formula for success'.

Now, I was told, this man may not have actually written this book. My friend from Montana knew him. It appears to be one of these success books, though really it ISN'T.

205 pages.. very simple reading and a very simple story...

I was told to read it overnight since he wanted the book back the next day. He was a mentor teacher for me.

I will be interested if anyone does read this and what they think about it.

Every moment takes us to the next moment. Synchronicity has been so powerful in my life, that I can hardly see this person, ME, creating these most amazing coincidences.

Something so personal is, we all know what this diagnosis is like, and yet, the gift for me and my husband is how close the two of us have gotten. The recognition that WE are going through this together. This has taken years, tears, triumphs, pain, battling each other at times, coming back to the middle again. From the very first trip to the so-called cancer campus, I remember so well getting in that car, ... where there were no words except shock and fear, to the ever moving moments where two individuals are sharing something so deep and intimate, with every emotion possible- and knowing no matter what, we are being guided. This book has helped me feel this.

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Thank you---your writing is very comforting. I feel you.

I adore my husband. I want to ride this out with him AND stay emotionally close to him. So thank you again

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“ getting in the car “ and facing APC together , shock & fear. Boy ! We can relate to these words. and I cry while I read that. Good tears because I too fortunately have a strong loving partner by my side. Take care

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Ty for this post, so very calming and wise in both dealing with illness and in life. Beautifully written . You certainly have the strength we all aim for. Xoxo keep truckin. Wishing you more open doors, flow, energy and natures synchronicity be with you always

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I am so sorry you find yourself in this difficult situation. I want to be completely honest with you in my response. This is of course only my own thinking and, unfortunately, the decision is one that only you can make for yourself.

From your post it sounds like you are so very tired. The treatments you have tried so far have not sbeen able to stop the cancer from growing. Of course your MO suggests that you get on a trial; that is his job to make you aware of options that are still available to you. But not only do I hear you say that you have no optimism that these treatments are going to work when nothing else has, I also hear you say that there would be a lot of effort involved in order to be able to partake in a trial, travel included. I am getting the sense that you don't really want all that.

I think there is no right or wrong time to decide when enough is enough and when to switch to palliative care. It depends on how you feel in yourself. So, if this is what you prefer doing at this point in time, then perhaps it is the right thing to do.

I know there are people on here who would encourage you to keep fighting and to keep trying everything. I don't want to say that. I want to say: Do what isright foryou, what feels right for you, and look at the options realistically.

Please keep us posted about your decision.

Best wishes

Mel.

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Thank you. The thing I'm finding is that as death becomes more real finding clarity about what l want becomes more and more difficult. l thought l would be braver at this point.

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Braver? Nobody is?

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Hi Rmanns, I just read 21 replies to you and plenty of men have come back from having Psa > 1,000 and lots of mets in bones. But few ever achieved this with any form of chemo I have eaver heard about, and the only way to kill the cancer now would be Lu177, Actinium 223, or Radium, ie, Xofigo, and the latter works by replacing calcium in bones which have high traffic of calcium to and from bones at met sites. I am not an expert, and I don't know what condition your bones are going to be at the met sites where Ra replaces Ca.

But any discussion of further chemo would seem pointless unless someone can proove it will work before it is undertaken and this is a big ask of any doc and really, at a certain stage, no doc can predict anything, and any further treatment is a gamble.

The cost of the radio therapy above could be so high that you need to be wealthy to be able to buy it, and and without the dough, docs won't do a thing for you, except advise tou to get your affairs settled, and then direct you to palliative care where they give you opiates to kill pain. I have many bone mets, but Psa is under 30, no pain, and I have no clue yet if chemo is working, and am considering trial in Sydney of Cabazitaxel OR Lu177.

But I could just buy the Lu1177 from local clinic $40,000 for 4 infusions. Or maye get Ra, 6 infusions for $68,000. But if I had no money, these expenses would be too high and I just end up in pain then palliative care.

My sister died at a hospice 2 weeks after her admission with Oa in 2005, at age 60. She had had 4 chemo shots, all failed to kill Oa. She was forced to hospice, unable to eat or pass solids. She became a morphine addict real fast, but her body was much weakened, but was able to walk about gardenas with us and talk OK on day before she died, 2 weeks after admission to hospice.

Pain at night became bad, and the nurses increased her morphine level in the IV drip, and she could give herself morphine hits when pain became bad by means of pressing button at bedside, and at 6am one sunday morning, and alone, she died of self administered morphine overdose, ie, cardiac arrest.

I had a fellow friend of 72 go the same way, totally unable to communicate, eat, or drink enough to stay alive and with Pca spread to bladder, plus bad lungs from cgain smoking, and several othert things. The carers where he was put by relatives did the job of easing him out of existance in a merciful way. His wife had bad dementia, and died after him, unable to know anything going on.

Euthanasia is rarely ever discussed by politicians because it is an entirely toxic taboo political subject. But its being proposed here in Oz in 3 states and my Territory, and meanwhile it is being widely practised at the end of life care places where those who really have to care for ppl dying really know when someone is ready to go, and nothing can be done, so they just ease them into oblivion.

Remarkably, God has not ever appeared at a hospice to accuse them all of being murderers. God brought little comfort to anyone in a hospice, and IMHO, to die peacefully means you need to cope with one's own ending. IMHO, dying is a remarkably non-spiritual event.

I have been able to survive to now with very little support from my family because I was a spectacular failure at successful marriage, so I had no kids, no grand kids, and my friend number is low, so I face being alone each day, as I have for 40 years since I was married once. The dear lady left, after deciding she did not want to proceed to be a real wife, and who was I to argue with a lady?. Nah, just close the door gently, live on alone and maybe something turns up, but it never did, so I will fade away alone. But while alive, I had a career of making many other ppl happy with my work, so my life was not pointless, I was useful to my fellow man because I worked hard. All this about life is quite OK with me, no need for a huddle or wailers around me, and I hope the world enjoys my dough when they get it.

Pain relief now has become slightly more sophisticated and one guy in group here said he had an implant with slow release of fentanyl, and Targin, and these are much better than morhine, but addictive, but the addiction is not a worry, you are allowed to be addicted,

because its not forever, and you will never have to kick the habit.

I wish there was a way to avoid the Abyss, the fall down into it, but it is what we all face at some time.

Patrick Turner.

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Did you ever try cannabis oil. I don’t know if it works but many swear by it for symptoms. Going to try it myself.

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tried hemp oil to no good result. l have friends with chronic pain who swear by thc

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We rely on cannabis. It has been one of our sacred plant allies. I know this doesn't sound scientific. I have spent years researching cannabis. Israel, Spain and the Netherlands have all done extensive research with what the Netherlands published much easier to find.

It's very scientific. We have an endo-cannabinoid system throughout our entire body. There are receptors that communicate with the cannabinoids in the cannabis oil. You have to know what you are buying and may need to experiment.

We first began with higher THC, but then found for prostate cancer, for the most part, higher CBD works better- hormonal cancers.

I can't say for anyone what strains, ratios, THC/CBD... each of us is different. And, yes, I've heard also how well THC helps people. I am anxiety prone. THC is more difficult for me. I have a cousin in Florida who would never have considered cannabis, but after back pain she is now using it with great results.

You deserve the answers you are looking for... May they come to you in a beautiful way. This is my wish for you Rmanns. genie

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I grew 9 Sativa plants in 2014 summer, and got 22gms of oil, which in fact was a dark brown grease. At first I needed only what easily fitted in the top of a pin to get a good high after 830pm to after midniht. There was no paranoia and it was very relaxing, and no bad side effects side effects next day. I took enough to get high for 8 months and because it as so calming it obviously had low THC and high CBD, and over the 8 months daily use I used 11grams, and there was ZERO change to slow increase of Psa, so for me, cannabis is useless to cure cancer. I stopped cold turkey, and there were NO withdrawal symptoms, and I resumed living straight.

What I grew is very different to Indica variety that has been select - bred over many years to make it high yield and low CBD and high THC. This junk is what is making many teenagers become schizophrenic, so the street dope sold is terrible stuff, so DO NOT smoke or eat it.

I ate 32 apricot kernels a day for 9 months and saw ZERO change to Psa.

What other silly myths would you like me to bust?

Patrick Turner

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3yrs on RSO for me.. helps many things including appetite and moods.

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I’m a fan and have been on it for my 3 and 1/2 yr journey with pc.. No visable signs or PSA past the first few months.. I won’t stop the RSO. It helps me with everything . Without it , I’d have little appetite , daily bad moods, and a lot less enjoyment of my passing days.. Good Luck carlo8686...

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See what a person discovers hanging around in the early morning at Rmanns’ Post? Wow! Patrick, your writing is honest, brave, helpful, practical, incredible, unforgettable. Obviously, you’ve had a life that wasn’t and isn’t pointless! Go well, not soon. Mrs. S

P.S. Mr. S has just joined the land of the living and can’t have his coffee yet since he has just taken his Zytiga. Now the retired English teacher gets to have his “dessert” first reading this, and I don’t mean reading me.

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Is drinking a real concern after taking zytiga? I’ve been doing that since I started 3 months ago. Thought it was only food. Bad deal.

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Coffee

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I never worried about it.

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Sorry. “Coffee” was a misleading abbreviation for coffee with toast, peanut butter, and jam, i.e. food. Les is trying the fasting method but hoping to get permission this week to eat a low fat meal with the Zytiga and take one instead of four tablets. I’ve replied about that elsewhere. If our specialist agrees, we’ll be sure to let everyone know. Go well and enjoy your coffee as we do. Amazon delivered a couple of pounds here today. Your use of “drinking” was as incomplete as was mine about “coffee”. Now I see the clarification below, and you have mine. Peace.

Mrs. S

P.S. Waxing on... I was notified of the first part of your reply while listening to Michael Lewis read “The Coming Storm” on Audible. (Absorbing subject—the weather.) Seeing the word drinking above, I muted the author on the iPhone and rushed to HU on this iPad. What a world. Back to the book.

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Now the clarification is above, not below. My reply has been bumped to a new location.

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I think I would have told them zytiga boys to fix their pills. Gotta have my coffee. Dark roast my favorite.

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Amen. Why didn’t Janssen’s test them WITH food on fewer tablets? Duh, right?Thanks for writing, carlo8686. Dark roast for us, too. Best-Mrs S

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I have read conflicting studies about peanuts and prostate cancer. Peanuts were to be avoided. Recently watched a YouTube Video that said peanuts are good for prostate cancer contradicting everything I had read before. Called my herbalist. He said to stay away from them. Until I find more data I will follow his advice, not the new finding. I was hoping to use peanuts as a protein source. I do miss peanuts.

Currumpaw

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To Currumpaw,

My husband is committed to peanut butter. I eat it in moderation, but it is the only food I may be slightly allergic to, i.e. if I eat too much my face shivers. Bread is his first love. What to do? Take away all his remaining pleasures? Big sigh. Mrs. S

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About three years before I was diagnosed I began changing my diet towards organic foods. After being diagnosed I started removing foods that might contribute to or nourish prostate cancer. I became a vegan in early months of 2018. A mostly organic vegan. One of those difficult people. That may be the last key for me as my PSA has consistently dropped since then. I too would like to reintroduce peanuts to my diet not only because I enjoy them but also for the protein they supply. Being vegan isn't fun but I can forego the peanuts if my PSA continues to drop. Peanuts or life?

On the 4th of July I was as always invited to a family get together. I brought the wine. Yes, I would have a glass of it. When the table was set with a sort of buffet there seemed to be two dishes that I could eat. Unfortunately the baked beans were the pork and beans variety. There was a three bean salad that had some onion sliced on top of it. I ate as much of the three bean salad as I could while leaving enough for the others. My thought was it is better to fast than to eat something that will feed the cancer cells in me.

I used to make triple decker peanut butter and jelly sandwiches that were famous for weighing about a pound. Solid whole grain bread with various grains and seeds, maybe 8 ounces of peanut butter and jelly. I truly miss those sandwiches but when my PSA has decreased again after another PSA test peanuts and peanut products are a sacrifice I can make--it is a lifestyle change.

Look for some avocado toast recipes.

My best to you.

Currumpaw

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Before I read you, I bought guacamole at Costco this afternoon. Does that count? Seriously, tomorrow our APC doctor is going to have to be on his toes to beat your reply which Les has read twice tonight. Eliminating peanut butter (given memory loss from Firmagon/Lupron/Vantas) is his decision. I cannot, never will be his boss. I’m continuing to read more of your replies. Thank you for giving me much to think about. Leswell's spouse

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It isn't easy. Having been athletic I have had times when certain foods were off limits, times when I lost 20 lbs. in 30 days while working a physical job and a tremendous amount of exercise and running. I have also gained a bit over half a pound a day of solid muscle in a bit less than 3 months, 48 lbs., by eating humongous amounts of food including --peanuts! Read about Ruth Heidrich. She beat cancer by becoming a vegan and wrote Forks over Knives. Metastases on her ribs, no chemo or radiation. Running was her thing. The last I read about her she had completed the last Iron Man or Triathalon she entered while being over 80 years of age! Funny how when I finally went vegan all the way and began running my numbers dropped faster. I still have a long way to go. I am hopeful. The impact of a runner's feet on the surface sends shock through the skeletal system which causes the body to deposit minerals in the bones and must stimulate the immune system in the bone marrow. I get IV vitamin C infusions and do LIVE O2 sessions.

Vibration plates have become a mainstay for professional sports teams. I first read about these plates several years ago. One was demonstrated on YouTube in Sarasota, Florida. Us elderly were standing on them. Not only do the plates promote bone density for those unable to run but it has been found that the vibration accelerates soft tissue healing, including healing from surgical procedures --which is the reason why the NFL and other pro sports have added the vibration plates to help their players recover from workouts and injury.

I have a friend whose father had prostate cancer nearly 30 years ago. He became a vegan because he didn't wish to follow his dad down that road. I spoke with him recently and he congratulated me on becoming vegan. He is a member of a vegan club in RI where they get together and go to vegan restaurants. He told me that many of the members have become vegans because their doctors had told them there were no farther treatments for their cancer. A member on another site I am on, we became friends, told me during a conversation that he attended a vegan get together. He asked them why they had become vegans. He said about half had had cancer and were told that their future was bleak or the doctors had said that there was no more that could be done. Everybody was healthy.

Dr. Greger has a YouTube video in which peanuts are said to be good to eat for those who have prostate cancer. Peanuts are rated as the #3 nut which are good to eat for men who have prostate cancer. This is new--I stress the word new. Peanuts may very well affect prostate cancer adversely in one way, but, in the past, studies have shown that peanuts are a food that cancer patients should avoid. That is why I called my herbalist. He is in his mid-eighties and studied in Europe. He has many years of experience and has seen much. There may be something else about peanuts that we should avoid. Until I get more information I will continue to abstain from peanuts.

Being vegan is so hard. It is almost impossible to find a place that is convenient to get something to eat especially if trying to eat organic foods as much as possible. I would suggest that if you find a dish that is palatable, make enough to last a few days. Buying, preparing and the cleanup takes a chunk out of my day.

Remember, I started changing to organic foods almost 3 years before I was diagnosed. I was eating over 60% organic I would say. When diagnosed I began eating just about all organic foods and started eliminating foods. Today I am a vegan whose PSA has decreased on the last two tests. I am careful about adding things or stopping some of the things I have been doing.

There is nothing easy about this. It is difficult. Things on my newsfeed such as "Try These Recipes For Fall". I look at the recipes and perhaps find two of twenty-five that are vegan.

Best off luck.

Currumpaw

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Thank you for the good vegan news! We haven’t arrived at that state of bliss but have eaten mostly organic since Les’s garden is 100% that. Lots of salads. Meat consumed is in small amounts and mostly grass fed. Peanut butter is allowed, thank God. Our prostate cancer specialist today was kind and realistic. Any more chemo is unlikely to add more than a couple of months. None of our doctors hopes for cure. Enjoy the days while Les still feels well was this one’s sage advice. At the moment I’m trying to access the urology portal, but the software will not accept that my husband’s mother has no middle name. I’ll have to call the office one way or the other to get the PSA and T results from today.

Les is having a bone scan and CT in October and will have a six month Eligard injection and one of Xgeva after his Vantas runs out. Zytiga has been reduced to two tablets; dutasteride cancelled and finasteride continued. Right now Les is tilling for the second time getting ready to plant grass seed. We spent most of two hours waiting to see our doctor. Why is that more exhausting than running? How I wish we both still were. In my forties, I loved the sensation of “flying” up a small hill at Lake Phalen. I made It 16 miles (with knock knees) and did well for my age in a couple of races. These days Les’s lymphedema is prohibitive as he could fall, but this winter we’ll bike in the basement.

Congratulations on the new diet and muscle! Interesting about the vibration plates. Go well. Mrs. S

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Organic peanut butter and Ezekiel bread..

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Ezekiel, Daniel, Hosea, Joel...I can still hear the ditty I sang as a child for the Gideons wearing a new dress, a gift from my Grandpa Billy.

Yes, we’ve enjoyed the Ezekiel bread with Koeze peanut butter from Grand Rapids, MI. (Just realized it’s only natural, not organic.) The doctor said to eat peanut butter if Les wishes. He also said palliative henceforth is okay. Not with us it isn’t! Back to bread. Les’s favorite for morning toast is the pecan raisin bread from New French Bakery which isn’t as healthy as Ezekiel. He puts an attachment on one half of the hand-held mixer which does a great job of blending the Cream-Nut version. Dear Lulu, why should we give up when Les isn’t even on pain meds yet?! I know this doctor is well informed and couldn’t be nicer, but he’s going to get ill himself from all the over-scheduling.

I won’t send a copy of the letter I brought him on Tuesday but I will my response to his lab orders which we had no time to discuss and will likely bring a wheelbarrow load of telling-me-off responses. Go for it, friends.

You can tell I’m confused and heartsick. On the one hand we were told is was okay to go home and die with pain meds. On the other we’re to be scheduled for a “fill and pull” Hematúria Study at the hospital. One or the other, not both, wouldn’t you say? Just venting. Don’t do anything stupid such as argue with your doctor. Anyway, here is my probably embarrassing and uninformed reply:

“Hello on Thursday, Sept.13th. Although you presented the palliative care option, which we are aware of but not ready for, there wasn’t time to discuss your lab orders. We have no question about the requested bone scan, but do have a couple of thoughts about “fill and pull” catheterization in light of Les’s Stage II bilateral lymphedema and the risk of infection. His hospital visit would be less traumatic without the “fill and pull” part of it. I don’t know the percentage of persons beginning Xgeva (should those injections be affordable and come to pass) who are required to go through a fill-pull especially at nearly age 80. Would a passive void trial be possible, and how much information would it yield? Are we doing this because Les has blood in his urine? We don’t know the results of his urinalyses.

Sincerely,

Mrs. S”

P.S. Lulu, I need to check your recent posts. Definitely not keeping up. Watering the new seed comes first—after replying to you. Hot and windy in MN today, but thinking of and praying for those on the coast of the Carolinas. Trying to imagine pounding in nails to board up our house. Praying for our APC specialist, too!

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Yeh, prayers to those in nature’s fury this season. Pecan raisin bread! Mmmmm .. this urological suffering wasn’t in our “golden years “ handbook .. I’m sorry les is feeling the brunt of it. Grandpa Billy probably knew a few things. Keep yourself up!

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Thanks for staying up with me. Les is asleep. Love to you and yours. Jan

I want to send you a pic of Grandpa Billy! He co-owned Waukegan Steel Sales during WWII and persuaded my dad to stop teaching math in Seattle and join the war effort by managing the business. Not a blood relative, a Dane, but the grandfather I knew best. The real one was something else— fought in four wars beginning with the Spanish American, would you believe. Long story. Sleep well.

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I love the stories..Like to see the photo of billy. 4 wars must be a record. .. A Great Dane taught you well. Your spirit is strong. American steel sure produced . Seattle now boings hub.. stay well , deep breath. Thanks for speaking!

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Can’t quite shut up. We both wrote at length for a time to Dad’s brother, Lou, whose career was at Boeing. (My memory is that he had final approval on the release of some planes.) Mostly wrote to his wife, but he carried a picture of Dad and me throughout Italy during the war; Dad kept him supplied with film which I returned to his kids, my cousins. He and his wife lived on Puget Sound and airmailed us crab, handpicked over by them. Great couple. I miss them.

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Oops. First, Lou sent my parents his photos which I inherited after my parents’ deaths and then returned to Lou and Ruth’s adult children. THE END for now.

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I ask my radiologist if my diet will help my PC and the reply was no hurt or help. I have changed my diet anyway. Feel better.

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Dear “carlo8686”, Feeling better matters! Congratulations on having the will power to make those important dietary changes. We, too, have tried to be moderate, but have often succumbed to habit and desire. At the moment, our options are few which we have been weighing. I would urge Les to join a BAT (bipolar androgen-based therapy) trial at Johns Hopkins if, at his age and in his relatively good physical condition, he were accepted. He would likely choose to stay home.

If he should die before I do, I prefer that he do so feeling and looking more like the man he was three years ago having at least some testosterone, memory, muscle, and hair. Sans BAT or other Aaron Rodgers-like “Hail Marys”, I will do everything possible to preserve his and my privacy and dignity. For example, unless persuaded of any curative, pain-lessening, or humanitarian value of a C.T. Hematúria “fill and pull”, we reject that procedure. No explanation was given about why it was ordered or what it entails.

Les is not just my husband of fifty-six years but also my hero in the classroom and at home—in deed and, as our family and a few of his grad school teachers would agree, especially in word. “You write so well it’s scary,” wrote one professor.

In short, a whole body bone scan is allowed but invasive procedures that could cause infection or sepsis are denied unless defended. Not giving in yet. Hope you don’t either, Carlo. Mrs. S

P.S. not necessarily to you but to all newly diagnosed Stage Four prostate cancer patients: Please carefully weigh the pros and cons of early ADT + chemotherapy (or ADT + Zytiga). I wonder how many oncologists, urologists, and prostate cancer specialists would consent to enduring that standard treatment themselves. One cannot continue doctoring or teaching or you-name-the-occupation given the likelihood of dementia caused by androgen deprivation therapy.

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Thanks for your thoughts. Tough choices are ahead for all us.

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Thanks for understanding our pain and listening.

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Whoa Patrick! What was your work that made others happy? If you don’t mind me asking?

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I started work as a carpenter's apprentice and I felt it to be a noble trade, after all, Christ was a carpenter, and then I thought He had some relevance. I don't now believe a word anyone says about a God because all ideas about a God or multiple gods seem as valid as Father Christmas or fairies. But being good without God seems valid, and so if I tried to please all those I worked for my life had meaning; I could see and touch the efforts of my day. I worked for a company first, then workd as a self employed building contractor for 20 years, and most clients were happily married couples who I liked and my work made them happy.

But my knees when bad and I swapped to teching myself how to repair electronics and my work made a lot of ppl happy, and so ppl didn'y have to buy something new.

I manufactured some gear as well, and ppl enjoyed it.

My life was never graced from any lasting love from a lady, so I had no kids, so I found making other ppl happy was all I could achieve, and it didn't matter much if I didn't make myself happy.

But despite what i type, I am happy enough, even though riddled with Pca that will kill me one day.

Patrick Turner.

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Must be nice to build with your hands things that will stand the test of time. An honarable profession for sure.. I too am happy despite my pc limiting life. Keep truckin !

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RManns,

You say you are tired of traveling. It may be worth the effort to check out the Phase III Vision trial in Houston.

clinicaltrials.gov/ct2/show...

My hubby didn't meet the specs, so we are in Berlin for the 177LU treatment. Fortunately (?) he tested positive for PSMA and hopefully he'll respond to 177LU.

It is your life - you may need a short rest from all of the docs and needles - and maybe some morning you will wake up with the answer to your question.

Whichever you route you choose, it is the right decision.

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Yes, I'm tired of travel. l imagine the trip to Berlin has been daunting. Yes I've seen that trial and given it and others to my medical team. Thankyou.

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Oh my, that’s a tough question. I think that is up to you,your spouse and god. I’m in the same situation with my Dad, he’s 87 and just told that after battling prostate cancer for 20 years that he only has a couple of years no matter what treatment they do. He was told even if he didn’t do treatment the time line would be the same. What does your doctor say about your prognosis how long do you have without drugs 😡 Friend in Colorado lived a year and a half without them. Controlled the pain and had a fairly active life up to the end . Sorry your at this point 🙏🙏🙏 Fight the good Fight

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Thanks for your response . My dad was 90 when he chose not to continue curative treatment. As much as we hated it we honored his choice. But I'm only 65 and have been an active physical guy. I've been told l have 5 to 15 years from diagnosis 5 years ago. The doctor l trust most told me l might have another year, probably not 2. I'm not in terrible pain. I'm still relatively healthy, other than the cancer.

But we don't often hear about the end. l went through it with my dad. But l don't know much about what is normal. I'd like to know a resource of what to expect.

Thanks again.

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Other than the “C”we’re doing great.. that’s what I’m told also.. but I too ,have surpassed my initial expiration date ... We walk on eggshells grasshopper.

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I think you should fight with every tool there is.

Xofigo significantly decreases bone pain.

I did a clinical trial and had to leave due to extreme side effects.

Have not heard you mention Zytiga.

Please do not give up.

This is a battle and you should come out as the winner.

Get another opinion.

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Thanks for your response. I've tried to be honest about a place we will all find ourselves. Rad223 was not helpful in reducing my pain . l gained 2 important years on Zytiga. l do not want to list out my 5 years of treatments and gain well intended, but not entirely useful, advice. I am actively pursuing phase 1 trials. l haven't just given up , but at some point l will say no more. Because that is what we all have to do. We have to be a grown up and consider the impact on family, friends , and taxpayers. l watched my dad die from prostate cancer about a year ago. l know that his death came rather quickly and without obvious increase in symptoms. l was surprised , he simply didn't seem that sick, until he was.

This is not a battle. This is life. l won't be made to feel that my impending death is due to a lack of effort on my part. Would you be willing to look my wife in the eyes and tell her if she had just made more of an of effort to provide support and care l might still be here, or my medical team or suggest to them that I just didn't try hard enough to stay with them. Words matter. Please be careful with them. I'm sure meant to encourage and support.

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Certainly no attempt here to offend.

I use this site to gage myself.

I was unable to pull up your profile or history.

I was diagnosed 8-2015.

Stage 4 with widespread bone Mets.

The cost of Zytiga is very hard and I wonder how long it will continue to work.

Could not tolerate a clinical trial drug and they put me on Xfofigo in addition to Zytiga.

Zytiga about a year now.

So I wonder if in another year it will stop working for me.

Then what?

Lost my own father also to this disease as you did.

Thoughts are with you!

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Xofigo should not be given with zytiga

biospace.com/article/unique...

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Thanks. I'm not sure of current stats for Zytiga but "average" meaning too high for some too low for others, it was a little less than 2 years. But after Zytiga there are options , most often chemo or some new options hopefully available soon like Lu177. l would encourage you to do 2 things : 1, take advantage of this time and 2, start the conversation now about what makes sense for you as a next step and include oncologist and loved ones in that talk. Knowing that our life is temporary is hard and a blessing. We are no different than everyone, except we are aware of our limited time.

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Life and time are fleeting for us .. “take advantage of this time” words to heed indeed. Thanks !

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No harm intended here. Lost my father in law a few months ago to prostate cancer,I was diagnosed 8/4/16 with stage 4 with Mets in ribs, spine and lymph nodes. And two days ago my father 87 was told that he has 2-3 years due to his cancer after battling it for 20 years. I have the greatest respect for anybody and there care givers that have to face this monster. I simply will not go out without doing all I can to stay alive. When that’s not a option I will go quietly if I can. 😢😢😢😢

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I'm sorry for your loss. And so sorry for your dad. We don't have to go quietly. But we don't have to think of winning and losing. When we are gone we won't have lost . Sure, try anything that makes sense but when we get to the point that the possibility of gain is not worth the effort and risk to our quality of life we haven't lost, we've lived. We've made to decision we've faced life and embraced it. l hope you are doing well now. Take good care.

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I think we all may face that decision someday, however, by your post I am thinking that other than back pain you are actually able to do most anything you desire, so I don’t know if you are really at the end of the road or just GIVING UP on treatments. My own thought is that as long as I am able to be productive daily, I will continue to fight this cancer. Our type of cancer is one of the most researched disease and many new treatment will come of it. Stay active, enjoy your family and loved ones, join one of the new immunotherapy related treatment like PARP and PTEN studies, even if they are Phase 1. It will give you hope, but also us that that have not reached that stage. When that time comes when I am no longer able to contribute to society and am a burden to my loved ones or others, then yes, I will consider that.

One other point, progress in treatment of PC is due to many of us willing to try new drugs or other methods. PSA is just a number. When and if your QoL is no longer positive, then it will be one serious decision point.

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Sir, you don't know me or what l can or cannot do, or what l might want to do. You provide a good example of the guilt inducing reactions that simply make the final decision even more difficult.

Let me assure you that yes we will "all face this decision someday.". I hope that when you need to decide you will have people around you who can help you take that last step with dignity.

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I am truly sorry if I have offended you. I was trying to express my own demons when I get depressed on this endless treatment that we all feel as we ride the train. I live in Dallas and commute to Houston every 6 weeks since 2010, and as long as I can, I will continue to do so to find a “cure” for this beast until my QoL is no longer bearable. Sorry again. I pray that you will be at peace for whatever decision you make. It is hard.

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I understood you were talking to yourself. But you need not place that guilt on yourself either. I appreciate this response. Thank you. l hope within your battle you leave room for appreciation of the joy today and you allow others to process thier grief while your still here.

You take good care

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D -H since 2010, that’s some effort to survive. God bless you!

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I love the honesty and bravery of this question. Though I am hopefully a few years from these kinds of decisions, I am engaged in deep consideration of such questions. In some ways, i have been curious about dying long before I knew I had cancer.

I appreciate the responses that acknowledge the question and admit that it is a very personal decision. It is also telling to me how some responses completely ignore the question and immediately offer suggested treatments, or encouragement to "fight". To me this reflects an aspect of our culture that i believe can subtly (sometimes not so subtly) and needlessly torment someone who is dying, or who is ready for dying. Although I am living well at this time - perhaps one might argue that I am not 'actively dying' - I have a terminal illness and consider myself much more a dying person than I have ever been.

It is so important to me that my loved ones AND my doctors and anyone else ... are able to listen and learn <with> me about dying as I open to that part of life. I'm not taking about death, but about dying; which I believe can be as much of a profound aspect of living as birth and coming into life (...or adolescence, school, work, partnership, retirement, etc...) if we make room for it. Dying may not be pretty; it may be hard work; it may ask a lot of everyone involved; but I believe it is worth doing with awareness and acceptance when the time comes. I consider it an important part of <my> life journey as a whole. I also believe it can be a very important and meaningful experience for the not-yet-dying to travel with the dying. I have had the honor of doing so myself in this life. Dying can be beautiful too, even when pain is involved, if we have the eyes and heart to see.

I find it can be very hard for me to feel supported by many people, and the broader culture, in reframing my experience of cancer in this way, but even while I'm still pursuing health and life, I am taking close notice along the way of who can really be there for me and with me as my dying takes on greater prominence. Some people are clearly too shut down or in denial of their own fears to be there for me. Some people can almost directly admit that they are just too afraid, as they pull away from honest conversations about the dying part of living. But for those who can be there for me, I will also be there for them on my own side of our journey together - and I try to show them how this can be true. I hope that for some, my own dying presents an opportunity to see through their fears to something that is more important: an important aspect of living, and loving each other, which demands something of us in spite of our fears.

I hope you have people who can really be there with you as you face these decisions and this time in your life. I wish you a good journey. I don't believe you can make a wrong choice, you can only do the best you can with the information you have and the values you have cultivated in this life.

p.s. I find myself coming back to your statement that "it seems ungrateful not to try". That sounds something akin to guilt, not gratitude. Sometimes gratitude arises spontaneously, but our attunement to it can definitely be learned, cultivated, deepened and <practiced>. Regardless, I would say that gratitude lives within us: although it may inspire us to do or give for others, it's not something we owe anybody. I know my own gratitude because it feels tender and good. If anything, you can be grateful for the love or encouragement or opportunities given, and still make your own choices. If you choose additional treatments with clarity around these feelings, then perhaps your gratitude can feed your soul whatever the outcome.

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Thank you so much for your thoughtful response.

l do have people in my life who do try to help me see dying fully , clearly.

I have tried to live my life in gratitude. I've tried to be appreciative of the joys discovered along the way. Guilt may be a part of my reaction. l do worry if I've fulfilled my responsibility to loved ones. Obviously that worry is not something l have control of. I've worked hard and been a "good man". But the emotional reaction of guilt is just that, an emotional reaction. It's there whether l want it or not like a startle response, or a tendency to avoid looking at death.

I'm trying to find what is affirmative in the process of dying. I'm finding that the closer l come to death the balance swings more toward emotional reactions of guilt and fear.

Thank you and l hope the best for you.

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Thanks Rmanns. Yeah... I take comfort in my understanding that there are no 'wrong' emotions: I don't choose my emotions, but I do get to choose how I work with them; and that only begins by recognizing and accepting them as they come to me. Over and over I witness in myself and others how people tend to be much less compassionate and forgiving of the faults, mistakes, and troubled feelings that they find in themselves than they way they often naturally respond to the suffering and confusion of others. Self-compassion is something I work at, and it sounds like you are too. Be well and keep up the good work.

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Such a personal decision, depends on your age, your health otherwise and what you want out of life. I've got the paperwork for end of life meds (legal in our state) and I'm hoping I'll know when it is time to see what is next ... In any event, best to you in your battle.

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Thanks, Have you thought about how you will know? As my health deteriorates I'm finding reason becomes far less important than emotional reactions.

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Inhumane not to be legal for all. Why it isn’t legal? Because the profits are in stringing us along.. Why should anyone’s choice to end their life in 2018 be a shotgun. Barbaric.

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Your choice is yours, I know that along the way we are all faced with tough choices with surgeries, radiation, chemo, and on and on. Everyone wants us to do whatever it takes to fight and for the right reasons. But we have to also make the choice to live our life each day with or without the drugs. Whatever you decide will be right with no regrets. I agree that palliative care should be sought out earlier since it is there purely to help you live not help you die. When it comes my time to face the dance I will reach out for the support and love this site shares. Be strong and be brave my friend.

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Yes. Generally speaking, this is the best online forum of discussion I've ever participated in, on any subject. ❤️

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It’s the only one I’ve visited and we get real answers and compassion ...

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Keep contributing!

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Thanks. I'm finding it so much harder to decide as the choice becomes more real.

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I want you to know that I really appreciate hearing all of this from you, for the ways it supports my understanding on my own journey. I am grateful to you for openly and courageously sharing your questions and your experience. Thank you.

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The book and documentary film, Being Mortal: Medicine and What Matters in the End, by Atul Gawande, addresses many of the subjects mentioned in this discussion.

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Thanks I'll look into that. just download a summary and analysis. I'm looking forward to reading it

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Another book which may help you find clarity is Die Wise by Stephen Jenkinson. It is beautifully written and addresses the end of life in a comforting way. Peace to you!

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Stephen Jenkinson has helped me. I did spend a weekend with him. I came away with my heart open. I felt more freedom afterwards. He has a number of videos on youtube.

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I listened to the audiobook of Stephen reading Die Wise. It's not an easy read, but influenced me profoundly in positive ways.

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Thank you so much for addressing this subject which my husband and I just read every bit of. We have discussed when to quit extensively. This website is wonderful, the best, but most speak of staying positive, fighting on, etc. You and many others have been so refreshingly open well it’s made me cry.

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We faced that decision last year after Kevin’s cancer re-invaded his bone marrow. He had intracranial bleeding and Mets to the liver and this was after all conventional treatments including Provenge and Jevtana (quickly progressed during this chemo). He was admitted to the hospital for platelet infusions but the cancer kept devouring those and the internal bleeds would not improve. After a week of this, plus a Dilaudid pump, he decided, at 45yo, that further treatments were pointless and he ceased receiving infusions and entered hospice. He passed the next day. He was comfortable and was not fearful of death. This is your decision as we are all different in what we can/want to endure. Kevin suffered a lot and really only kept up the treatments and side effects for as long as he did to be on this earth longer for our young children.

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As Tak-Druk said so well, heartbreaking.

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Very heart wrenching .. May god bless you and your children.

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Well I put it this way.... I told my wife to place that mirror over my mouth before they stick me in the oven. So hang tough and remember God is on your side.

Good Luck and Good Health.

j-o-h-n Thursday 09/06/2018 8:34 PM EDT

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I am reduced to tears and feel the pain of all. I am the wife of one who is locked in the ego of Manhood being stolen at age 52, given 2 years to live at best and now living 5 plus years, still struggling to find a place in this world now that the treatment of the disease has taken away the career, the ability to manage urinary continence and at times bowel as well, the fight to get going in the morning and sleep soundly at night, the emotional roller coaster of ADT (not to mention weight gain and breast development), weakness in the left side, a limp, pain in odd places, numbness in the feet, heart palpitations, hot flashes, bleeding in the bladder sometimes leading to obstruction and E/R visits, mental instability and depression...I have supported him through it all and I am the crazy one. Anyway, It Is, it is painful for all, it is individual in decision making and it has no answers. no winners, no losers. I stay because I know that when the time comes for grace and the ability to say "No More" we will all reconcile and be nothing but Love. May you know your own inner voice to tell you when it is time.

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Heartbreaking. Thank you for sharing. Sometimes it seems impossible for me to understand the burdens some of us are given. Bless you and your husband.

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and Thank You to you and your vulnerable honest post that started this thread of conversation with so many - my heart is breaking but at least I can feel again. One day at a time for all. Love and light to you on your quest for peace and understanding.

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just realized that it was Rmanns that started this thread, but really, anyone could have, right? same questions for all. Same answers, different order for all. This community forum is so helpful! Time to start another day...

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Your honestly about loss! Your wisdom about Love. The grief of seeing someone you love continue to experience loss. It's the most difficult to this point in my life- it is also ever-changing. The only people who understand this are the people who have experienced it.

I do understand your tears and the pain of it all. It's been a process for me. I learn to live in between the spaces... in the moment... I respect how hard this is... and I can't say enough the lessons of it being ever-changing that the average person would be driven crazy by...

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Strong and truthful description of a brutal reality ... much of which I share.. heavy duty .. I like your opinion and approach , thank you... I can relate to all of that of which you speak. .. peace to you...

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Also, we are in the gateway of the Vision phase 3 trial through Mayo clinic as all other options are exhausted. If he makes it into the drug test I will post results as they come. Currently, psa 10 with bone mets to sacrum and L5, failed xtandi and zytiga. Psma test scheduled next week in Houston.

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Do a trial! Hail Mary, but if we are honest every single member has asked himself the same question... We all will submit sometime.. at the point suffering outrageously outweighs any light in our lifes. those that have suffered understand your question is. real . Each of us different yet all the same in the end. Being otherwise healthy feeling I comprehend intrepidation of more treatments.. For me I won’t let go of hope until I exhaust every means available.. I have strong reasons right now to do so . Most of us including myself wouldn’t be here today with out treatments. But , I guess the answer is , when you say you’ve had enough and cant take it any more. No judgement from others should matter in your final decisions. For now, I still think it’s best to think about living !

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Thanks, I've done a trial before. I was very ill and gained little benefit. Today was a good day. I'm grateful for that.

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A “good “ day should not be diminished.. or wasted.

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You strike me as a warrior. There is no dishonor or fatalism in seeking peace. This human existence is temporary and is perhaps best celebrated by living to the fullest potential of this moment, not the avoidance of its end. Your decision, no matter what it may be, should not be a struggle to define the moment or thought upon as an ungrateful surrender, it is a reflection of all things past balanced against the acceptance of all things future.

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Thanks, well said. l find myself less accepting of death as it comes closer. The trials are truly the last straw to grasp. It takes more courage to say no to the trials than yes. And then there's a real consideration of hanging on to delay my family's grief. Real or no. It is harder than l thought it would be.

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Just FYI l started IMRT to my back for pain relief, and along with a more aggressive morphine dose l am in far less pain. A dose of dexamethasone (?) has boosted my energy. l feel incredibly better and I'm up and out more as well. l still can't decide a next step . l know this is temporary but I'm making the most of it.

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my psa went to 35 and my clinical trials is called provenge. thats where they give u some meds and then let your immune system and this drugs fights my psa level. what its suppose to do is increase ones immune system and from what i read guarantees me 4 good years added but they also say u should a psa no higer then 31. now at 620 i have no idea and iam surprised your oncologist hadn't gotten u into that provenge program when the level was in the thirtys. i've talked to guys when there psa is in the `1 000-2,000 and there time was winding down so to me 620 isn't all that bad but remember all oncologists have their own treatment plan. i live in Washington not close to seattle where they have a hugh docs, who specialize in this cancer. since i have quite a few oncologist for the past 10 years, to me there just maintenance docs. what they hear about they react so its all about who u feel confident in.

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state and i googe all the time abouttreatments i don't totally rely on a oncologist if u feel the doc isn't checking,reading giving postive feed back change him. i have been with cancer nw but i still do my own checking things out leave it up to u, its your life not theirs

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You're actually the first person I've heard mention good out comes with provenge. I'm glad to hear it. It's a drug that is very helpful for specific individuals as I understand. Very glad for you. I've been reading many clinical trials with new approaches. I'm hopeful there might be a good match for me as well.

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Sorry to hear. I'm a stage 4 PC guy who's been on Lupron & Casodex, and Taxotere for 6 treatments, now on Zytiga + prednisone. Have you tried the hormone meds? Not sure what other treatments you've done. You can check out my story (steve55777) and those of thousands of others on another great site / resource: healingwell.com / prostate cancer. My PSA was at 60, now at 0.60. Hang in there.

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