To your knowledge, is it usual for a man diagnosed today with metastatic prostate cancer (bones and lymph nodes) to live more than ten years, with the treatments available?
How many years is it possible? - Advanced Prostate...
How many years is it possible?
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JNunes
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•
Certainly:
menshealth.com/health/a2530...
Thank you, Tall_Allen.
I had already come across these article but I will read again.
I have been reading here on forum, that many of the diagnosed men remove the prostate. In the case of my father, the initial treatment was with radiotherapy located/radical in 5 sessions. I have had this in my head, and the fear that he will have a worse response to treatments.
(At the time of initial treatment, doctors said that radiotherapy would have the same effectiveness as removal of the prostate.)
Unfortunately there are so many factors that cannot be accounted for regarding the nature of the cancer itself. Some are known such as favorable mutations which respond well to newly released medications but many are not know . Of course baseline health, age and co-morbidities are very important too.
I was 43 when I was diagnosed with metastatic prostate cancer with no useful mutations and I am burning through all effective treatments after just 3 years and I’m healthy, fit and eat well but this cancer came out of no where as is “very aggressive” according to my oncologist.
Million dollar question for sure but who knows. I ask him all the time...how long do I have to live and he never answers because he can’t. 30% 5 year survival is quoted for all comers with metastatic prostate cancer at time of diagnosis. I am aiming for 5 years hoping science will catch up but I am not overly optimistic as I am already entering clinical trials as of next week. Good luck to your cancer warrior. 💪🏼
• in reply toCleodman
Amazing Cleodman........ I’m pulling for ten to twenty more for you sir .
Cleodman. Good luck with the trials. Same as you, diagnosed at 43, running through treatments way to quickly and cancer is very aggressive. I'm now on Carboplatin but have had brain tumours to deals with in the past 3 month. Lost so much weight which is worrying.
@easeytiger oh I am sorry! Brain mets is probably my biggest fear with spinal mets in the c-spine leading to paralysis being a close second. Have you tried fasting with chemotherapy? Just water for 2 days before chemo then 1 day after to make the chemo more effective? Hang in their my brother and let’s us know how you are doing please.
Thanks. I did the fasting on my last chemo and had no sickness. I've lost a lot of weight so fasting isn't as good idea at the moment.
Brain mets have been treated now with radiotherapy but was not the news I expected.
Hang in there. Where do you live? I know some doctors doing clinical trials. You have nothing to loss in giving it your all my friend.
I live in Cambridge, UK. The Royal Marsden who are the leading cancer hospital in the UK are on my case and I've been on one immunotherapy clinical trial, probably have many more to come.
Yes I know it well. I used to work in the NHS in Leeds, York and London as an A&E doctor. That was back in the early 2000’s. Have you any access to the CarT trials? That will be my next one after the one I start this week if unsuccessful.
CarT they take your blood and genetically modify your T cells to better recognize and bind to your cancer cells. It has some great results in other cancers. They are just starting the research here for advance prostate cancer.
So I think my treatment will look like Carboplatin for two more infusions, then a scan as the RM said genetically it's likely it could work well. After that, it may continue or change to Radium 223. As you probably know the trials were stopped in March, so I haven't had any contact with the team in Sutton since then.
I believe that one’s state of mind and support network, when combined with proper nutrition, activity and not simply having treatments, but entering into this “situation” with a firm belief that getting treated means that life WILL change. Diet, exercise, emotions and every little thing one does will also BRING change as well. Not only accepting the changes but always feeling that tomorrow isn’t just survival, it means new possibilities and hope...well, I guess that as long as we wake up to each day with a smile, no matter how difficult it may be to put that smile on one’s face, then get up and fight to win, may mean that those who focus on survival can make it through each day, moment by moment. The days may be good or bad, but each moment means more and more time has passed. One day the person may wake up, put on that smile and realize that years have passed, not just the two weeks a careless doc gave as that person’s “estimated time of survival.” What a horrid thing for a doc to say to a warrior! There are docs who do hand out those pink slips and that makes me seethe! We have as much time as we want, if we feel or want it. I have witnessed many scenarios, both good and not so good, but attitude, accepting the changes and living in each moment with a can-do spirit seemed to make a difference. Moments DO add up. Live to smile another day. If the smile is difficult I understand, but it IS an easy form of exercise...for a moment or two...
Sent with love from me to you, My warrior got many pink slips and smiled past each one. I wanted to kick the doc, but my warrior wouldn’t let me; he just smiled.
My husband at age 51 got diagnosed with stage IV Gleason 9 June 2018. So far so good with Zytiga/degeralix injections/avodart. What regiment were you put on when diagnosed three years ago, and is your PCa now castrate-resistant after 3 years? or is it still castrate-sensitive? Wondering what your history could help us know about my husband's prospects. He's also really healthy and fit. Best of luck to you and let's hold out for another 20 for both you and for my husband!
6 cycles of docetaxel chemotherapy, Lupron injections every 6 months, radiation to some mets in my T1 vertebrae and I had a radical prostatectomy. They tried going for cure. Didn’t work obviously. Yes I am castrate resistant now. Happened just at the 3 year mark.
I'm sorry to hear that it's castrate-resistant. My husband's bone mets were so extensive that they didn't even have the option for a "cure". He was offered chemo + lupron or zytiga + lupron (or digarelix). January of 2018 was when they approved the latter as being as efficacious as the former, so my hubby had a different option available in June 2018 than you would have had just a year before. His current regiment has a 32-month average efficacy before PSA begins to rise again, but we're hoping he'll be on the higher end of that range because he responded so well to the treatment. Hopefully by the time his PCa does become castrate-resistant, they'll be even more options for him.
It's very doable. Many members here have lived 10 plus years with metastatic prostate cancer. I plan on it. I'm nearly 6 years in and just bought a new 50K truck that I plan on driving for quite a few years. To quote Jimi Hendrix " 'I'm the one that's got to die when it's time for me to die, so let me live my life the way I want to.".
• in reply to
Hec yah! You’ve got stuff to do ! 😂🤙🏽
• in reply to
We got a lot of things to see.
JNunes• in reply to
Naturally, we observe and compare.
As i said to Tall_Allen, i have been reading here on forum, that many of the diagnosed men remove the prostate. In the case of my father, the initial treatment was with radiotherapy located/radical in 5 sessions. I have had this in my head, and the fear that he will have a worse response to treatments.
(At the time of initial treatment, doctors said that radiotherapy would have the same effectiveness as removal of the prostate.)
• in reply toJNunes
Many men have an rp only then with a need for more treatments afterwards. I wasn’t a candidate for surgery either. For me it was just imrt and adt. No going back on these decisions now .
Simply - no one knows how long anyone has. I am certain of uncertainty. I really try to live in the Now with hope.
JNunes• in reply to
I know...
I wish my dad didn't go through this.
I wish he were lucky to have a good response to the treatments available and live many years.
Thank you.
• in reply toJNunes
We are all wishing the same for your father . I love to see any child with such love for their father. It’s a testament to his character in raising such a caring human being as yourself . None of us know what tomorrow will bring? But with love good things are possible . I’m happy he has you !❤️🌵
• in reply to
“ Tiger blood” CharliecSheen said
I like the word "possible" better than "usual". The statistical probabilities don't apply to individual people. The important thing to keep in mind, IMHO, is that if you survive 20+ years using only currently available treatments, you'd be unusual but you would be far from the first person to do so.
On the other hand, if you live to 200 years of age, you would be the first person out of billions to do so.
It is not easy to live with a diagnosis like most people here.
I admire everyone here.
I know that my question is the result of some desperation. But it's hard for me to hang up and just wait and see.
Most days I feel that I need to be doing something to help my father, although I feel powerless. So I look for information, I look for some hope ...
Thanks.
• in reply toJNunes
Your love and caring is all that’s needed.
Yes I have survived nearly 15 years and my psa is only 0.019
Wow! May I ask gleason and treatment?
Diagnosed in August 2005 with a PSA of 24 and a Gleeson of 4+4 Cancer was metastatic in the right acetabulum
I don't know your story, but I'm happy for you.
I would like my father to be allowed to live so many more years.
• in reply toMullumbimby
🥳👏🏼
I'd say it is mostly a matter of luck...good or bad > otherwise, all science can provide is probabilities, which are not predictions of the outcome for any one man!!!
Well, I know that anything is possible. I also know that bad things don't just happen to others. I don't feel more deserving than anyone else. However, our head always tries to find some justification so that our story can be different and without so much suffering.
It is difficult to deal with the illness of someone you care about so much. It doesn't seem fair. Although my father has always been fine so far. No symptoms. Only psa as an indicator and then treatments started. I've always seen him well. He was always a tough and strong man. It is difficult to imagine that this strong man will have to deal with a disease that does not allow us to cure, although he can respond well to existing treatments.
Anyway, my anxieties ...
Yes, I think bad things eventually happen to almost all of us. ... I don't think any family escapes....at least none I know of. Still, heart breaking when we learn that anyone is suffering......and being human, natural (?) to worry that we miight be next!! Maybe best to look at it as a glass half full..... a pancreatic cancer diagnosis brings with it a 95% probability of a fairly quick demise. My wife had thyroid cancer and surgery......we were lucky, VERY LOW recurrence rate, and death rate lower than PCa. She has already lost one sister to lung cancer and another to metaastatic breast cancer. The 2 oldie men on my block have already had PCa surgery, and the only 2 male pastors we know have both had PCa surgery....like a plague ? Hang in there with your Dad.....he is blessed to have loving family......many men don't. I'm sure it is difficult for him to be told all this negative stuff...when he is still feeling fine!!! Not easy to accept!! Having no current symptoms at time of treatment must result in better prognosis for treatment success... cherish each minute you have with your Dad......and all those you love, right? Hope I'm not too preachy??
No, not at all, don't worry.
I really appreciated your words. we all have or will have our pains. it's part of life. we never know ...
I wish you all the best for the future.
JNunes just curious but does your dad have metastatic disease or advanced prostate cancer?
• in reply toJNunes
Such compassion is wonderful. We all must go through seeing our parents age and let’s face it , We all are one the same path. We all get old and then illness gets us . The point is to live for today with your father . Spend time if you can . Show him that you love him. That will carry him.❤️
There are a lot of middle aged men who die suddenly with a heart attack or in a car accident. My cancer has taught me to cherish each day and to enjoy my time with those who are closest to me. As for death, it will happen when it happens. In a perverse way, these last two years with advanced prostate cancer have been the best two years of my life. I'm loving every day that I am alive!
4 years next month, stage 4 with Mets in my spine,sternum and femurs. Scans in 2 weeks . I have started building hot rods and babysitting grandkids. Do what you can when you can. Headed to a swap meet today ❤️ Fighting the monster 🙏🙏🙏
I'm happy with your story.
I wish you many years of a quality and happy life.
I will be 3-years in January with stage 4, PSA now is 0.2., Lupron since the beginning and now have added Xtandi with its side effects. Have been ale to tolerate it so far. Will be 84 in January with hopes to make it to at least 90. I have found the best sources of support folks like you all here, meditation, then the internet generally, then my doctors, and then with that ammunition, I follow advices, stay busy, then have a couple of beers and pretend I don't have cancer.
If you get bored, I've always wanted a '69 Mach 1 with a radical 428 in it(or maybe even a blown Coyote). Flares on all 4 corners to accommodate some nice fat stickies. Add in a full blown modern suspension and braking system to make it carve corners and stop on a dime. In Calypso Coral please
Next up is a 62 Ford Falcon. Rat rod. 302 with a AOD transmission and a 8.8 rear ending posi trac. Already have the slicks for the rear 😀😀😀😀
I"d like to get a wrecked shelby gt. Put running gear in my 66 fairlane..
• in reply tolarry_dammit
🙏Living!
6 yrs in from a DX of 3-6 months, qualified for checkpoint inhibitors Blockade immunotheraphy, currently in Complete Durable Clinical Remission NED..48 infusions thus far over 4.5 yrs and ending at 50 total, infusions every 12 weeks currently, just turned 65 and live a normal active lifestyle, one of the lucky ones to be surviving a Gleason 9 4+5..very aggressive scNEPC diagnosis.
Was wondering if you had bone metastasis at time of diagnosis. My husband is 74 and diagnosed 1.5 years ago stage 4 with bone mets. He to had a gleason score of 9. Still taking hormone shots. Zytiga and Xtandi did not significantly lower his PSA. Got first injection of Xgeva and has had spot radiation and starts chemo next week. His PSA is now 60. Had to postpone chemo for carotid artery surgery so PSA has risen from 27 to 60. We are trying to be hopeful with chemo. On Tramadol during day and extended release morphine at night for bone pain. Lesions on ribs and spine plus pelvis, femur and eye socket.
No bone Mets, Gleason 9, pelvic nodes, had Radical prostadectomy so tumor could be Genomically Sequenced by Foundation Medicine...PSA was only 10.5...fir highly aggressive form of PC, ..found I was Adenocarcinoma with Neuroendocrine differentiation which doesn't express PSA, I was microsatellite stable, negative for PDL1 but the tumor carried a Hypermutated TMB that qualified me for Checkpoint Inhibitors Blockade immunotheraphy, got a response after 3 infusions of Pembrolizimab Keytruda and still in Remission 4 yrs now and 6 since diagnosis in 2014.
Fantastic
I’m 56 and living with mcrpc for 3 years now. I plan to live to 90
JNunes• in reply to
God willing. I really hope so.
May an effective cure / control for everyone arise.
Thanks you.
I have G4+3 in 2006 and L3 met in 2010. Have had RT, Chemo, ADT, and now Zytiga For 27 months so far. Current PSA < 0.1, however I don’t think about how long, but more about how I live my life. Enjoy while you can, do the Lord’s work, and love your family, friends, and strangers, especially now with world as it is. We all need God’s love.
I was dx late 2011 (46 yrs old) Gleason 4+5 PSA 50, they said very aggressive. University of MN put me on a trial using chemo and hormone therapy which helped tame the beast, then rad prostatectomy summer of 2012. Removed 25 lymph nodes in abdomen, some of which were infected and PSA rose again. Failed Zytiga in 2014, my onc, when pressed, gave me 5 years. I had lesions on my spine, ribs, frontal bone, femur, and quite a few lymph’s. 21 chemos and three years later I started Xtandi and continued Lupron. Been on Xtandi 41 months and Lupron for what seems like forever. They told me Xtandi efficacy for guys in my situation was 24 months. They gave me 18-36 months last February, 17 months ago. All of that to say i have an undetectable PSA and all lesions I had are dormant and continued good scans. I keep asking my Onc if I’m cured, he says no, that I will eventually fail, but I wonder. Seems like this could go on and on. I’ve had a hell of a run.
I hope you continue well and respond in the best way to the treatments available.
The best for you.
I read some of your other posts. U of M first in your case, now Rochester with Dr. Kwon? I live in the cities so make the pilgrimage every three months to Gonda 7th floor.
Tell Kwon Johnny P says hi, we have a storied history. We retired to Phx so now Phx Mayo. I miss Euge.
I will. I'll see Kwon this coming Friday when I accompany my father to his appointment. That's right, father-son advanced PC. It's a thing.
Unbelievable!
Eugene asked how you were doing...but I had to confess our acquaintance is online only and I don't know!
Don’t worry how long you will live. No one knows. You can die from many things while having cancer. Make your life count and live to do so.
I suffer for my father.
I would like another reality for him. I know, because I already realized, that the world of advanced cancer is difficult.
You are a kind and caring person. Really there is no absolute. Ask lots of questions. Pick a treatment that most gives you the quality of life you desire. Find a research facility if possible to get access to clinical trials. I have advanced cancer in my lymph nodes and bones. I pray for healing and for my doctors. I try to do as much as I normally would do. I trust in my Jesus that I am lead in the right direction. Lastly, honor your dad’s decisions, even if they do not agree with what you want. He needs to have the dignity of decision. Be blessed, I am sure he is happy you are advocating for him.
Your Dad is 60 years old... I predict he will be around until he is 79 years old. With all the new meds being introduced he will be hanging around with all the old ladies he used to date.
Now as for you.... you have to keep your mind on yourself and make sure you're around to celebrate his 79th birthday...(someone has to be able to blow out all those candles)....
BTW those 19 years will go faster than Fran2020's 50K truck.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/18/2020 1:23 PM DST
Dude, I was diagnosed stage 4 at forty fucking two. That's why I have this title "final boss," as a joke. Fortunately I was a Gleason 7.
Other than having massive shoulder pain when my mets went into my rotator cuff's, I've been good the entire time.
From the start of this fight (not a journey, I fucking hate calling it that) I was told focus on the "quality of life" I can have. You need to as well.
You just have to roll with it. A guy who was diagnosed around the same time as me is probably in hospice right now, but his was Gleason 9.
Hello FinalBossMatt, I forgot that you were diagnosed at the age of forty fucking two. Well you do have a good fucking attitude on focusing on fighting those dirty little fucking bastards...
I too am the Final Boss in my household... that's what my wife said I should call myself. Keep posting here we need you to set some of these guys here straight.... You'll be around till you're eighty fucking years old.... Aim high shoot low....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/18/2020 5:18 PM DST
I go back and forth some days I am in a fighting mood and say f___k cancer, somedays I see it as a journey as I discover new things about myself and life, and somedays just looking at my family brings tears and I am asking for help from above. Keep up the fight.
There is absolutely no one who can answer that question
Many have defied the odds still alive after being given 3 years to live 20 years ago
My oncologist told me recently it wont be long before they find a way to prolong prostrate cancer for many many years
That a man will die not from cancer but with cancer
There is hope for yet
I already read in the internet what your oncologist says.
I hope so. We need that 🙏
YES YES YES!
Elgie diagnosed 2003 stage 4, Gleason 4 +3. Currently in remission.
🌻
That's awesome, but what do you mean remission? When I was first diagnosed my Urologist said I am never really going to be in remission at Stage 4. Has your PSA just been stabilized for years?
Yes, below 1.0 for 6 years.
Okay, right on.
In my case... complete Clinical Remission NED 6 yrs...clean 6 month Scans, annual bone scans and PSA that hasn,t budged from 0.10 for 4 yrs since being on Immunotheraphy checkpoint inhibitors Pembrolizimab/Keytruda.
What is NED?
Nice job on the therapy.
No Evidence of Disease
Okay got it.
• in reply toerjlg3
Woohoo 🙌
As warren zevon sang.. "life will kill ya"......we all have an experation date.....
Yes, I am 20 years out and have been in remission for 6 years now. I stopped all chemotherapy one year ago. I have been on Lupron continuously the whole time. I live a reasonably active life with physical constraints due to muscle weakness and degenerative disc disease just to keep staying alive more interesting. I have a positive attitude about living and stay engaged in may creative activities. My most important resource is a group of 10 friends I call my Posse. When I need a ride for a test or treatment they are there. When a sudden trio to the hospital occurs they are there. We hang out and share many laughs together. My wife passed away 5 years ago from a horrible Brain Tumor so that taught me a lot about the act of dying. I just got a new dog, NOT A PUPPY and she has increased my steps each day and keeps me company on the dark days. My exercise watch loves me now.
• in reply toJohnstonearch
Good to have a posse! 🌵😎
I am in year 5. Tubular Prostate Cancer. Aggressive. Had Lucrin the first two years, than Casodex. Drug holidays on and of. Now in month 5 of a drug holiday. PSA 0.05.
I used supplements and a lot of Artemether. It made a difference. Just want to mention artemether can cross the blood brain barrier.
I do appreciate this post and seeing everyone talking about how long they've been fighting.
Although I am optimistic for a long life and do fight with humor. Some days I really do get frightened as hell.
My first set of hormone medicine pills lasted about 9 months. Kinda scary when you're told each treatment should last about 2 years before cancer figures it out. I went on 9 month break from medicine which kicked ass. When it started to rise again I went on Cassodex which worked for about 5 minutes, and I started Abiratred when mets went into my rotator cuffs making my shoulders hurt like a mother fucker. It crashed but started going up a bit. Doc said instead of 1 Prednisolone pill with the medicine, I should take 2 which should either make it plateau or go back down.
I did really get into a dark place during this corona lockdown. I wanted to quit. Not kill myself, but give up since people were turning this lockdown and what to do it into a fucking joke saying you shouldn't hang out with your friends for a BBQ but have at it with protesting.
I reminded myself how I never quit on anything, and I can't do it now.
It makes me nervous leaving Thailand to go back home to Florida, but I know the sky is the limit with the treatments back home.
I never bought into the 20 or 25% 5+ year survival rate of Stage 4 people but since the aggressiveness of my cancer is low and seeing all of you bad asses lasting as long as you have, I'm taking this mother fucker with me. I make the rules.
I saw a tee shirt that said "I plan to live forever. So far, so good."
Thank you for all the responses . I am a fan of this kind of sharing. I really believe that science will find a durable solution - until then take care of mind, body and spirit is our goal.
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