looking forward to reading some hopeful survival stories with bone mets, please!
Any long term survival stories? - Advanced Prostate...
Any long term survival stories?
Written by
Jojoteacher
To view profiles and participate in discussions please or .
87 Replies
•
Diagnosed at 54 going strong 8 years later, cancer being held at bay. Life is good
Hi MrScruffy,
I was wondering. If you are taking a 4 month shot every six months your testosterone is probably recovering a bit in between. Are you getting blood tests tracking your testosterone? It would seem like a fast-intermittent treatment you are on and I have often wondered what would happen if I did that and you seem like a mini-clinical trial in progress. Please share more technical info - this could be a great revelation. Thanks!
pretty sure nothing out of the ordinary going on here. Getting 3 month shot every 3 months. Testosterone has been <2.5 for years now. Except for lots of gym time I am not doing anything out of the ordinary. No "cancer curing" supplements or non SOC treatments to slow cancer, just don't believe in "micromanaging" my care. Just living my best life. Sorry, nothing out of the ordinary or ground breaking going on here
Hello,
Bone Mets from my neck to my knees. Initial PSA at diagnosis was 1700. Fortunately no soft tissue involvement. That was eleven years and two months ago. Seek good medical help and never surrender.
You did not take chemo ?
I have never had chemotherapy. The clinical trial I am in, is investigating the use of Lutetium pre-chemotherapy. I have already had three infusions with a fourth scheduled for next week. So far so good!
Oh which trial is that. I’d like to follow as I started with 3 x Lu 177 then had 3 Docetaxel which is pretty non standard. Interesting it’s being trialled as it made sense to me to do whilst I was fit and I worked through it all plus had to commute countries gor the early Lu-177.
Good luck
Just curious. what is your PSA now?
Hello,
It has gone up slightly. The last one on July 3rd was 0.14. I get another reading this coming Tuesday (July 30th).
What all treatments have you had before this trial ?
Hello,
Five years on Lupron type drugs. Mostly Zoladex ( which I am still on) but also a year on Firmagon (degarelix). Next five years mostly on Xtandi (enzalutamide) but a year on Zytiga (abiraterone) plus Prednisone. Some radiation. No chemotherapy so far.
You were only on one adt - lupron for many years ?
Hello,
That is essentially correct. I had Casodex (bi-calutamide) for about a month when I was first diagnosed but that was dropped when I started Zoladex, which I am still on eleven years and two months later.
What was your Gleason score ? So you started xtandi almost 5 years after being on Zoladex
?
Hello,
That is correct. PSA at diagnosis was 1700 and my Gleason score at diagnosis 8 (4 x 4).
Hi! Great news my husband was diagnosed with Gleeson 9 and he is not very optimistic so this is great news! What was your Gleeson score?
Eight (4 x 4)
well 8 years next month, Chemo , ADT and Xtandi for me, Nutritionist said in the start to eat anything I could get down . Love pie and ice cream. Just stay busy ( I build Hot Rods ) now. Keep the family close . Made all the final plans a long time ago. Had hip surgery last month , funny wife ask me if I dreamed of living long enough to need that . Just stay busy, positive and plan for tomorrow, Plans can always be changed but plan to live to a ripe old age. Keep up the fight warriors. 🙏🙏🙏
what type of hip surgery did you have? After I completed 10 rounds of chemotherapy and was looking forward to a break my sore hip was revealed to have a fracture and I had surgery. Not total replacement not sure the name but they put a rod down the femur and then screw through the femoral neck to hold that in place, which is what was fractured. then another screw at the bottom of the rod to hold that in. It was two months ago and I still feel like I have a long way to go. Before this, I was very active. I’m only 52.
I had talked to the doctor about the left hip to do a partial ball and bone but when they saw the damage to the right hip ( cancer had eaten all the way thru just below the ball and socket. They wouldn’t do the left without stabilizing the right. So they drilled down through the right one and put in pins and screws. Then they replaced the left as planned. Both at the same time. 73 here and it’s been 6 weeks and I’ve gotten rid of the walkers and cane. But long ways from perfect yet.
That sounds pretty extensive, best of luck on your healing
Thank you. Hurt for a while 😢
Dx’d almost 7 yrs ago at age 58. Gleason 9, PSA 56 with bone mets in my hip/pelvis. Nothing in the lymph nodes or soft tissue. Treatment has been primarily ADT - Lupron and Abiraterone. Also RT. No chemo. The cancer is being held at bay so far. Except for relatively minor ADT SEs I feel okay. Life goes on ….
Hi there
Not long term but at the end of 2021 I had bone mets popping up everywhere - spine, rib, shoulder blade and a rising PSA.
Currently my scans are clear and PSA undetectable. Never had symptoms and now on a Apalutamide monotherapy ( non standard of care) still working full time and living life to full despite my stage 4 status. I took a ‘throw the kitchen sink at it’ position and had 7 months of full on treatment till I went undetectable. My MO has de escalated my ADT so on a holiday from it as I super responded to my treatment combo. I am being monitored and have no idea what did what as I had Degarelix, Lu-177x 3 Docetaxel chemo x 3, SBRT to some tough mets, 20 Vmat radiotherapy sessions, 2 x brachtherapy, Apa lutamide ( still taking this one) and I also volunteered for the OVM- 200 vaccine at phase 1 clinical trial.
I barely think about my PCa atm until my next PSA test flags in my diary!
Wouldn’t treat seven years as long term but expect many more years to go. When diagnosed in 11/2017 it looked much worse.
Diagnosed 2/?/17, didn't think I would be here. I went completely in the opposite direction for about 2 years. Eating like a teenager, gained close to 40 lbs. Went throught chemo, on Zytiga, just got back from a 5 mile bike run... keeping it about 16-18 mph. I find it best to push hard, lay back, push hard again... Life is good, the dreams are the worst. Stressful dreams, days are pretty nice. PSA been .10 or lower for about 2 years.
did your doctor have concerns about riding a bike? I was diagnosed in 2016 with mets. No chemo yet but Lupron, Zytiga, Xtandi (which didn’t work at all), numerous rounds of radiation. Finally got in an immunotherapy clinical trial (Amgen 509). Was in the trial for a year before being removed for side effects. 1 1/2 years later, the immunotherapy is still working well even after stopping the treatment. I was an avid bike rider too. Rode about 1,000 miles a year. However, my oncologist was very reluctant to endorse bike riding because of sitting on a seat directly below the prostate. I dream of getting back on a bike every day.
He/She... two different MO's over 7 years, have always said to me, just stay active. I have a softer seat with a hole for the prostate. 1,000 miles a year is a lot. I do about 10 miles a day but not every day. I've actually been thinking of getting an E-bike that would allow me to go long distances while pedaling, and when tired just putt putt to my goal. I live near a 30 mile dedicated trail for bikes, and want to be able to do the trip in two days. The wife doesn't want me going so far. An E bike would allow for safer travel. At this point in my life, it is the journey not the speed. I watch the STP riders every year, Seattle to Portland and marvel. Not for me .
Hey Jojo,
I’m T4, G-9 (5+4) and 12 years out from dx. Working full time
and in it to win it.
how is 26 years!!! More to follow
hi my dad is 86.. in October 2021 his PSA was at 5000.. paralyzed , bone Mets , they said 2 months .. today it’s at 0.031 they did spinal surgery, said he’d never walk again, he’s walking after 2 months He’s on Abiraterone and prednisone.. and *whole foods diet and high doses of turmeric, garlic, vitamin D, and takes THC and CBD.. and more. Doctors are all shocked .. each person is unique.. keep the hope. Keep the faith.. hope all goes well!!
I am also at seven years with my first treatment ADT+Zytiga. Crossing fingers for a few more years of stability before further battles.
All the best !
hi Jojoteacher, i have been fighting the disease for12 yrs now and I AM STILL ACTIVE and nobody would know i ihad MCRPC if they met me. I had my RP when I was 52 . (2012). Recurrence with bone mets on the Iliacand pelvis as well as in L5 after 8 years.(2020)
I was put on Abiratrone +prednisone plus injections evry three months to lower my testoterone ( triptorelin) and one to prevent bone fractures. (Xgeva)
In April 2023, My PSA increased to 4.1 in a span of three months from . 077 and so I had to do aPSMA pet scan with contrast. It showed my lesions have resolved except for the L5 which was bright in the scan. We were all surpirised because the PSA was rising butthe lesion were resolved except for 1.
I had to do SBRT and VMAT, and another Petscan after the RAD treatment. To deal with the L5 and other lesions..
Now my PSA is slowly going down at 1.33 ..i see my doctors evry3 months. I have 2 Rad oncoand one Uro-onco plus an MO.
I am as active as before and no pain. I ride mymotorcycle and my horses as well as go on trips with the wife..i live one day at a time and do not worry about the. beast..i leave the treatment to my doctors and I just have to trust that they are doing the best they could until a cure or a semblance of a cure can be found.
Hi Bronzee I am one year in on Abi/Pred + Lupron - how long after you started did they add Xgeva to reduce bone fracture risk? Thx.
diagnosed at 61. now age 68.5 and living well.
I suggest: Love much, laugh often, Get on ADT. Work out diligently and consider a plant based whole food diet.
husband diagnosed in 2013 at age 67–and I was diagnosed with bilateral breast cancer at the same time. We traveled 90 min each way for “his n hers” radiation treatments that summer. I’m fine; he’s been holding it at bay with mostly undetectable PSA during these 11 years. Every 12 weeks implant and Xtandi for awhile (had a TSA on that), now Nubeqa. Last PSA showed a rise so he’ll get a PET scan at next month’s visit. But we have had some good years despite the man boobs, etc. He was an active athletic man so side effects have been tough on him, BUT… still here and still together since we were 18 and 19 years old!
Your brief story of the life and love between you and your husband is inspiring and illustrates how love and a beloved support, strengthen and fulfill your lives. Enjoy these days and those to come.
I was dx with numerous bone Mets, Gleason 9 back in 2014, thanks to great doctors ( PCa specialists), aggressive treatment and especially the power of prayer and Gods healing hands, I’m still here. You can read my profile to see what treatment I’ve had, etc.
Ed
8 yrs 2 months,firmagon now lupron and the first two yrs on xgiva till dead jaw syndrome. All good golf 3 times a week red wine every night👍🍷👌and btw no sex 😂😂😂
Eleven years here and still going. Tried everything and not finished yet. There have been some tough times, but grateful.
I'm still here 6 years after being diagnosed with multiple distant bone Mets. Still on Lupron, my original and only treatment.
So far so good. But PSA is up, although scans seem to show no progression. And things can change quickly.
I have an incredible story. Fall of 2011 Gleason 9 bone mets spine, ribs, femur, frontal bone, lymph nodes.
21 bags of chemo over like 3-4 years. Cryoablasion twice. Zytiga then XtandiLupron for 88 months now.
PSA undetectable and lesions dormant today. I was told I was toast twice with this amount of time and that amount.
Here I sit. The drugs are hard but I have the most amazing grandkids that I thought I would never see.
Imho, it’s the most amazing survival story.
Peace
Peace indeed. 👍🏼👍🏼
I think that long term survivors could try to help this startup, Cure51, which is trying to get an AI insight into exceptional responders and cancer survivors, all the outliers. Many big centers around the world are already taking part in this so maybe your data is already with them but I am wondering if they accept individual patients.
My dad was diagnosed at 65. He started with radiation seeding and Lupron shots with no bone mets. At 75 developed some bone Mets in shoulder. Started on medications-can’t remember all of them, but he had a great quality of life until he passed recently at age 88 due to the pc. He played softball until age 83. Actually had no pain until the last week of his life!
Diagnosis was 02/27/18 late stage prostate cancer with multiple bone mets from skull to legs only treatment is Zytiga, Prednisone,six month Eligard injections and Provenge back in 2019. Definitely not the man I was before all of this but life is still good. Mets are stable no uptake no advancement to any vital organs or soft tissue PSA 0.1 since 2018 Never give up never surrender Leo.
Diagnosed 18 years ago with PSA 88, Gleason 9 and Mets from my skull to my pelvis. Zytiga, prednisone and Lupron. I am active, I look forward to the future and I refuse to give up!
Great! What clinical trial?
That’s all you have done ? No chemo or radiation?
See my Bio. I had surgery, radiation, hormone suppressants and mild chemo before I got into a clinical trial at M D Anderson in Houston, TX.
At diagnosis at age 67 in 2018, I had "high burden" metastatic prostate cancer with PSA 148, Gleason 8. Since then I have been on Lupron and Xgeva. After a short course of radiation to a metastasis in my neck, I began chemotherapy with docetaxel in September 2018. I had an excellent response with PSA near zero. I did well for almost 3 years then my PSA began to rise. I added Xtandi (enzalutamide), again with excellent response, for over 2 1/2 years then my PSA began to rise again. I had a trial of Talzenna (a PARP inhibitor), but did not tolerate it and did not respond, so it was stopped after 2 months. I began a course of Lu177 in December 2023 and just finished 6 cycles. I have had an excellent response and continue to do well after over 6 years since diagnosis. Other than fatigue, I have had not significant side effects (other than expected effects with chemo, but that was 6 years ago). CT and bone scans have all been stable. I anticipate another surveillance period for now with continued Lupron, Xgeva and Xtandi. When PSA rises again, or if scans show any progression, the next course of treatment may be a repeat course of LU177, or more chemo. I'll discuss that with my oncologist. Even during chemo, I have been able to travel with family and friends and generally remain active, other than needing a nap many afternoons. I remain realistic but optimistic.
Diagnosed in 2007 Gleason 4+3 small bone met on pelvic. No chemotherapy no radiation. Been on lupron now for three years. 73 years old feel great. I work out three days a week plus golf two days a week. I feel very blessed. Take care. Psa undetected.
Diagnosed with 3 bone mets in October 2016. PSA of 80.
Ending Year 8 of fighting the Beast with PSA at 1.16
Lupron, Zometa and Xtandi are what has worked so far.
Going for another 10 years. Figure America is gonna be engaged in both World Conflicts and Conflicts here at home. So I can take care of homeland while younger goes overseas to war. Always gotta have a plan.....🤣
Dx with 4 bone Mets and 1 dirty lymph node of 34 removed during prostate surgery 12 years ago at age 54. Gleason was 9. Had 3 vacations from Lupron and Zytiga during first 5 yrs. Had radiation on largest tumor (in my hip) 2 yrs following Dx and again 2 yrs ago as PSA began rising from undetectable to very low levels. PSA rising again and will likely have to switch meds/therapy in 1-4 months. Have had unrelated back surgery, knee replacement (8 yrs ago) and hip replacement (6 months ago). Play Pball EVERY day (I am addicted and it been great for my overall well being, both mental and physical. I have even lost about 8-10 lbs of weight I put on after initial treatment. Happy to be living life with my wife and watching my 3 boys grow up from little kids to young men. Hang in there and best wishes.
My dad lived after the removal of his prostate cancer for 17 years.
They told him then, that it had spread.
Even with bone mets at year 14...he lived a life full of travel, optimism, plans, and vitality.
He kept his appetite and pain levels at bay with THC/CBN marijuana gummies ( the CBN cuts out most of the psychoactive parts of the marijuana)
and never did chemo or took pain meds.
He golfed even when doctors told him not to.
Traveled to Italy, and Ireland in 2022 ( when doctors told him his immune system was compromised) ,
and passed on August 17th 2023, a month after his 88th birthday - 2 weeks after my parents 67th anniversary, and the day after my mom's 86th birthday.
His life was VERY full up until the very end. He was an amazing man.
A man, not a patient.
A dad, not a person with a disease that everyone talked about. In fact - he only would talk about it to me and my mom and doctors IF he needed to know something new, or if I had some new research that I had found out about - whether it be naturopathic, of a new medical scientific breakthrough.
He died peacefully at home after 24 hours of hospice on no pain meds, in his sleep - with us there.
I pray for your strength and optimism.
with love
Dawn
Story of survivor - “22 years with metastatic prostrate cancer” : fredhutch.org/en/news/cente...
Diagnosed 5 years ago, astronomical Psa loaded with bone Mets. I had 3 rounds Lute - 177 no more Mets then sent home. 6 months later Psa started to climb went back had one more Lute-177 but this time 20 rnds of IMRT, followed by Lupron for 18 months to maintain 0.001 for 18 months then nothing. I had a year and a half holiday - no treatments of any kind. My running ability improved, my sex life returned again - it was sweet, but now the dragon began to raise its head again. To be continued...
5+4 18 years
MrSpouse 21, 80 years old two weeks ago, just headed out on a 20-mile bike ride today. He's in Year 10 1/2 of this thing. He was dxd in 2014, Gleason 9, all cores involved--80%-100%. Has had ADT off and on, mainly on, 9 weeks of radiation, Zytiga/prednizone (failed), Docetaxel (10 infusions), + Xgeva since 2019 but just 2x a year now, and spot radiation 2 mos. ago on after a PMSA Pet scan revealed a tumor on T12. Hated all of it but pushed through. His PSA is going up, so another PMSA Pet scan is scheduled at the end of August. Oh, and he had his fourth pacemaker installed last year. He was also heavily exposed to Agent Orange in Viet Nam in the sixties.
Mr. Spouse21 avoids the words "battle" "journey" in connection with PCa since he was in Viet Nam and journeyed there twice. But but he hasn't come up with other synonyms for how he's tackled PCa--I would say pissed-off resignation, pardon my French. He mainly follows what various cancer docs have told him to do and and doesn't think much about PCa in between though the ADT side effects suck daily, especially when he gets up in the morning. When he met with a bigshot oncologist in 2018 for the first time, the guy said to my guy: "Have you got your affairs in order?" and on the same visit said his prognosis was 3-4 years. Well, six years later he's out biking in the heat today. Oh, that same onc, whom we met with recently, said MrSpouse 21 was a chemo "super responder --seemed astonished that Mr Spouse was still alive--and might recommend chemo again over Pluvicto if further treatment is needed.
In between the big radiation and chemo treatments, Mr. Spouse 21 has lived a good life as a husband, father, grandfather, and road warrior (motorcyclist up until four years ago; bicyclist now.) but in a diminished way compared with his pre-PCa self. He took two major hiking trips overseas with me, Spouse21, somewhere between radiation and before chemo. Went on two other overseas month-long trips and had a blast.
So on the life front, he's done a lot. He does feel slowed down and is not the tip top fellow he was ten and a half years ago (when he was already on his second pacemaker.) We joke with his local oncologist that he was in good shape to get cancer. Very true despite enthusiastically eating meat or fish a couple times a week and less enthusiastically eating veggies. He enjoys daily wine or beer and occasionally has a bourbon. PCa has taken away a lot, so he's not going to deprive himself. At eighty, it's hard to sort out what aches and pains are PCa/treatment related and what are just being eighty. But right this minute, he's out on a beautiful summer day having a big ride and will probably stop for a package of Hostess Orange Cupcakes along the way. He's literally an Agent Orange and Orange Cupcake survivor!
So that's his "long time" PCa story, which I share, so that you can take some encouragement from him and the other long-term survivors or their partners to prioritize living your life as fully as possible while dealing with PCa. I hope you, too, will be a "long term survivor."
Thanks for asking and all of the answers! I am almost at my 1 year mark. The oncologist give us a horrible doom-and-gloom prognosis after my biopsy. (1 year if you do nothing, 52% chance of lasting 5 years if we "do everything". I was positive on 11 of 12 biopsies. Gleason 4+3. No detectable metastasis, but assumed in adjacent soft tissue due to the tumor cover the entire prostate surface.
PSA only got to 29 (I took it back to 19 with diet and supplments before my treatment started). Coming up on 2 year of ADT (Abiterrone/Presnisone/Lupron) and a round of HDR brachy. PSA down to <.01 since treatment started.
Fatigue has been my only symptom prior to diagnosis and it has been at a debilitating level since treatment started. I have taken everyone's advice here and started at the gym up to 6 days a week, but the fatigue comes and goes in waves, and some days I do one thing (like take a box down from a garage shelf) and it has me panting and catching my breath for 20 minutes or so.
My wife has been depressed, angry and devastated since my diagnosis. We are planning to streamline our lives, travel as much as possible and focus on our health and stamina (she survived breast cancer but has a chemo-caused bull body pain, advanced osteo-arthritis in her knees, pancreatic cancer markers, and no a candidate for knee replacements due to her pain and inflammation issues.
All of your survival stories are very encouraging, and I feel fortunate that my status is so much lower than many on here who have survived for over a decade. It truly gives me some optimism. And I read the stories to my wife to give her hope,
Thank you all for the encouragement and optimism!
Heading to Hungary, Scotland, England and Ireland for 2 months in the Fall and planning a trip to Japan in the Spring. Travel, food and culture are our passions and we plan on focusing on that part of our lives for how ever long we may have together.
Good question and discussion starter. Thanks.
At diagnosis (Stage 4, lung mets), I was told that I had 18 months, 24 months at the outset. Had a second opinion consult, and was told that the prediction sounded about right. After that gut punch I threw over my old life to focus on LIVING all I could during my remaining days.
Now, almost 4 years later the sense of impending doom has passed, and I'm living a good life. I used to resent the doom and gloom prediction of 18 months, but I have become grateful for it because it challenged me to re-examine my priorities. I've always been pretty positive, but early on in the cancer treatment I addopted the mindset that "I'm not dying today, so I will enjoy this day!"
Life has continued to have its ups and downs, but on the whole my life, and my appreciation for life are improved from the four years before diagnosis. I'm not grateful for the cancer and treatment side effects, but I appreciate how it motivated me to be grateful and savor the delights in my life.
what treatments did you do
Nothing unusual,
- Started on Casodex the evening after my lung mets were detected on an MRI
- Moved onto Lupron (4 mos) and Zytiga after a couple of weeks
-Switched from Lupron to Firmagon early last year to to mental health side effects from Lupron
For some reason my cancer responded immediately to Lupron and is continuing to respond positively to Firmagon
PSA non detect since early on and remained so as of last week. At my last MO appointment my Onco said that I could potentially be in remission for a long time on this same regime.
I'm counting my blessings on that one
thank you. No chemo ? What was your Gleason score ? Any bone mets ?
Gleason 9, no bone mets detected.
The tumor board was split on chemo/no chemo at diagnosis. My MO sided with the "no chemo" opinion. Not knowing anything at the time about PC, I went along with him.
Husband first diagnosed 7 years ago at age 71 and had radiation seeds then one shot of Lupron. Was fine until two years ago PSA started to rise to about 10 but no Mets. Then this last December’s scan showed some bone Mets and told he is Gleason 8. So started on quarterly Lupron and aptalutimide (plus Prolia and extra calcium). So far responding and keeping it at bay and his QOL seems unimpacted but for some fatigue and hot flashes (now minimized with low dose estrogen patches). I don’t know because maybe he’s 78 now but his MO said at the time that he’d likely die of something else not this. I was not as knowledgeable about this disease then (still feel pretty limited) but I hope he is right! The stories in this thread very positive. I read the blog every day so be doesn’t have to as he’d rather this not be a focus. He doesn’t drink, was always slender but now a little Lupron belly, still very frisky, sings, plays guitar, and has a positive cheerful outlook. Am grateful for every day I get!! Good luck to you!! This is a great community and I would feel so alone otherwise in understanding what we got going on with this beast.
Hello JoJo,
Glad you asked this as I've loved reading all the amazing stories. My husband was diagnosed at age 67 with Stage 4 at initial diagnosis in early 2020. We passed the 4 year mark and he's still going strong! He had low PSA (3.8) but all 12 biopsy samples were cancerous, Gleason 9 and multiple mets and lymph node involvement. Because he had more than 5 mets, drug therapies were the only option. In my husband's case, besides ADT (Firmagon at first, now Orgovyx) he had Docetaxel and immunotherapy (Opdivo) as part of a Phase 2 clinical trial. He's done amazingly well. When he was first diagnosed we didn't think living this long with that kind of diagnosis was possible. As you can see by the many stories, it is!
There are so many different treatments and every man is unique so there is no guarantee what works for one person will work for you. As Larry_Dammit said, staying positive and planning for the future are key. For me and my hubby of 47 years we are planning as many special trips as we can since that's something that brings us great joy. We are already planning trips for next year. We know he has cancer but we live like he doesn't as we don't dwell on it but live life in the here and now. Best of luck to you and wishing you and all the other men here many more years!
Alana
Diagnosed Dec. 6, 2016 with GL 8, PSA 16.5 and 3 small mets. RP, SBRT, IMRT and start of Lupron and Zytiga all n 2017. No Evidence of Disease since August 2017; no further treatments since June 2019.
My husband diagnosed in 2008, read bio and postings. Abiraterone gave 6 years good QOL, but became toxic to liver.
April 2024 - 4th treatment of R223, MDT stopped further treatment as progression. Not giving up but local Oncologist can only offer chemotherapy nearly killed him 1st time, on morphine patches and Oramorph for bone pain, mobility greatly deteriorated.
Asked for referral to The Christie Hospital Manchester, hospital of cancer excellence, waiting to hear..
Don’t have radium 223 without having 18f pet scaN, TELLS who will NOT benefit from R223 as some patients get progression while having treatment, my husband has, progression in coccyx while undergoing treatment.
The hospital who provided R223 told us that no funding for a Pet Scan how sort sighted. why weren’t we told we would have paid privately which would have avoid all the pain & misery & not forgetting the further cost to the NHS for the care now needed. Found an article by Chris Parker, but to late for my husband, we call it NHS DIY
79 this coming August. Have had PC for over 18 years. Had radical prostectomy in 2007, 8 weeks radiation in 2009, two salvage operations to remove left vas, then left ureter and left kidney; followed by ADT Eligard and bicalutamide for 6 years; PSA around 0.08. Plus the usual fatigue, weight gain, muscle loss, brain fog, but still kicking playing golf, tennis, and fishing.
first diagnosed in 2000. Still going strong.
Diagnosed 2012, been through lymph node mets, skull mets, bone mets, still okay at 12 years out.
Hubby biopsied in 2016 at age 64. Gleason 7, PSA 5.5. Had surgery and 35 rounds of radiation in 2018. PSA never went lower than 5. Switched to cancer center and scan showed Mets to bones.
Treatments since then:
Chemo 6x, Zytega, Xtandi, Chemo 9x, Pluvicto: Cabazitaxel now until he no longer can tolerate it.
Before Pluvicto, scan showed Mets in spine, pelvic bones, left femur with PSA 27. After 4x of Pluvicto, PSA 235 and scan showed Mets throughout skeleton, skull to femurs. After 5x Cabazitaxel PSA is 59. He is now 71
Hi Jojo. No mets (that we can see yet), but I have been dealing with PCa for almost 14 years now (diagnosed at 52 in November 2010).
Had a radical prostatectomy that ultimately failed when my PSA returned. Underwent salvage radiation therapy in Summer 2022 and it, too, has failed. My PSA continues to climb, but PSMA PET scans can't seem to find where the cancer is located (at a PSA level of 0.37 ng/mL). My last PSA in May was 0.52 ng/mL and we'll retest in October and try another PSMA PET scan to see if we can determine what's going on.
At this point, I just go from one test result to another and try to make the best decision possible with the information at hand in that moment.
My full story with far more details is available via my bio.
All the best to you.
Husband diagnosed in 2016, PSA 74, Gleason 4+3, three bone mets, large lymph nodes including one that was baseball sized. After Taxotere, Zytiga, Provenge and Lupron, he's undetectable, still working and looking forward to retirement next year. Some fatigue (falls asleep right after eating) but still mows our yard and our daughters yard. Grateful for every day.
hello Jojo,
I was diagnosed in Aug 2014 stage 4 Mets to the bone , head to toe , Gleason 9 given six months to 1 year to live PSA 280. Started on ADT. Brought PSA down to .02. Stayed there for 3 years before finally started to rise. Since got onto Extendi,chemo, and finally Radium 223. Nothing helping. PSA continues to rise though Radium has slowed it down. PSA now at 42. I did a PSMA pet scan and the results were not encouraging. Bone Mets have expanded with new cancer cells detected. We are now figuring what to do next . LU 177 available but at a hefty cost of $40000cdn. a shot. Radiation is out. Back to Chemo? Anyone with any suggestions? I have had a great life for the last 10 years. Need 3 years to get to age 80. I noted in some of the posts warriors who are alive at 21 years and adding. Keep up the fight
God bless
I
PSA 59, Gleason 9, "extensive and innumerable" bone mets. Spine, ribs, pelvis, mostly. Diagnosed Stage IV March, 2017. Also with spinal disk compression fracture. 8 rounds docatexal, started on lupron and xgeva. Then and now Xtandi. Maintained .2 psa for years, now increasing at .1 per 3 months and is .6, so about 7 and a half years. Still have prostate, no radiation. Next step will probably be chemo again. And then go from there. Good luck all.
I’m going to say something controversial. If you’re diagnosed with PC bone cancer and the cancer is only active sclerotically my opinion is you’ve a good chance of remission with the usual modalities. In my case 4 years of ADT including Zytiga/prednisone and Eliguard. I’ve dropped Zytiga due to side effects. Sclerotic involvement allows targeting of PC by better infusion of the affected cells imho. I’m six years in October with stable undetectable PSA having bone nets everywhere at Dx.
I have been blessed by a great care team from Mayo Clinic. I was diagnosed with metastatic prostate in 2007. After a radical prostatectomy, radiation, chemotherapy, hormone therapy and bone cancer in 15 locations from spine to scapula, I have recently been in temporary remission after receiving Six treatments of Pluvicto.
During the 17 years I have had this affliction, I have now 7 grand children ranging in age from 1 to 16. I am so very grateful.
Been over 7 years since I was dx'd with bone mets. They did disappear and I am now at .25PSA. So not bad. I was 212 at first 10 years ago this month. Didn't think I'd make it this long. I did travel to India for vaccines which definitely got rid of the bone mets for the last 7 plus years. l know I am pretty lucky for sure. I'm not 100%, but am still getting around, pulling weeds and stuff like that. Been a long time for sure.
Chris
Not what you're looking for?
You may also like...
Long term chemo success stories
I've asked this before with no success stories reported back by patients, but are there any...
Dental Issues with long term survival?
I am having multiple cracked teeth and dental infections after 20 years of ADT and continuing...
CHAARTED Trial - Long-Term Survival Analysis.
New CHAARTED paper below, reflecting longer follow-up.
"In this phase III study, 790 patients with...
Hi PSA long term survival anyone still here?
So is anyone surviving with high PSA or is it really the higher the PSA the shorter survival time?...
Long Term Disability
Hi folks, really starting to ponder some help here.
Quick summary - dx'd August 2023 with...
Long-Term Care?
Are you still making any long term plans or commitment to long term projects?
long term disability LTD
Long Term ADT HT
Long term Effects of radiation 
