My PSA has been rising for a year, I am turning 64 next month. Upon my urging my doctor do something, he finally decided on Xofigo. When I asked him my years left given my stage four going on three years he said without hesitating; "the average is two years". My wife started sobbing. Is there anyone out there who is in my shoes and has beaten the "average"? Thanks. - Jim
XOFIGO: My PSA has been rising for a... - Advanced Prostate...
XOFIGO
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Jamesjohn63
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What's your treatment history?
Erleada and Orgovx. I have mets in my L2 and pelvis. My PSA started rising from .1 a year ago to n ow 2.5
Hello, I was diagnosed at the end of May 2013 with a PSA just over 1700. My urologist told me I had months left and to get my affairs in order. He is now my ex-urologist and it is nine years and nearly three months later. The first four years and four months I was on the ADT drug Zoladex (goserelin) and the last nearly five years on a combination of Zoladex and Xtandi (enzalutamide). My advice to you is threefold. One, get a good oncologist. Two, have a supportive wife, family, and friends. Three, develop a positive attitude and don't ever, EVER give up! Good luck!
Hi RyderThanks for sharing your experience. Do or did you have bone mets? (stage four). Jim
Yours is a great story, Ryder. Nearly 4 1/2 years on ADT alone is fantastic and gives me hope as I start my fight. How did you find the side effects when you started on Xtandi?
Hello, Thanks so much. I am truly very fortunate. As for side effects: loss of body hair but not the hair on my head, fatigue (take the pills at night), complete loss of libido (I am 77 so not as big a deal as 10 or 20 years earlier), peripheral neuropathy (might be caused by back troubles) and hot flashes much earlier in treatment (but they seem to have gone away). Those are the main ones but hey I am still here and I plan on living a little bit longer. There were many people who got me through some very difficult days at diagnosis and if I can provide some inspiration to others, I am quite willing to do so. Stay positive and keep battling. Hope that helps!
thank you Ryder Lake. I am only 64. I have no lobed at all. I am ok with it so is my partner. I walk 4 miles at sunrise seven days a week, Working only sliming down now. Bless you and your loved ones. Jim
Nobody knows how long you are going to live with all the treatment possibilities available.
If the PSA has been going up when in ADT and Erleada the cancer has become castration resistant (mCRPC).
You qualify for Provenge, a vaccine which could prolong life.
When an anti androgen fails it seems more efficient to do chemo than another anti androgen. Chemo could be a reasonable treatment and it could treat the cancer everywhere in the body a difference with Xofigo which will treat the cancer only in the bones. Xofigo is indicated if your metastases are symptomatic and there are not visceral metastases.
accessdata.fda.gov/drugsatf...
If it is possible, consider a direct biopsy to study the genome of the cancer and see if it could respond to olaparib, rucaparib, keytruda or other drugs in clinical trials. A liquid biopsy could be other options if the PSA is high.
Other possibility is treatment with Lu 177 PSMA. You will need to have a PSMA PET/CT and see if the mets express PSMA.
There are clinical trials which will treat mCRPC patients who never had chemo. If financial possible, you could obtain treatment abroad.
clinicaltrials.gov/ct2/resu...
There are also a multitude of clinical trials for mCRPC. You could consider to have a second opinion in places such as Sloan Kettering Cancer Center in NY, Dana Farber in Boston, MD Anderson in Houston, UCSF in San Francisco, UCLA in los Angeles etc.
Hi TangoI am aware I am castrate resistant. I already had chemo two years ago. My PSA just started climbing, over the last six months from .1 to 2.5. that is why Dr Goodman wants to start me on the Xofigo. As far as the LU- stuff it is just not available. Called everywhere. You have me a a lot of information. I have to wade through it. Thank you for taking the time. Jim. PS when Oscar Goodman said I can expect about two years my wife started sobbing. That is why I am looking for hope.
Consider the clinical trials with Lu 177 PSMA or other clinical trials and second opinions. There are new antiandrogens called protacs in clinical trials, there are also the immunoligical treatmenst with BITE and CAR T cells and many others.
I would concentrate in getting LU 177 in a clinical trial if it is possible and second opinions.
how do I learn about CAR T and BITE, not finding anything specific to it w/ PC
You could ge in touch with Dr. Dorff at City of Hope in Duarte Ca
tdorff@coh.org
cityofhope.org/clinical-pro...
ncbi.nlm.nih.gov/pmc/articl...
Could you please fill out your profile?
PSMA scans are now available in most states. Get a scan..Call UT Southwestern in Dallas. If you are avid there is a place for you...They are correct about getting a good oncologist.Read my bio...This nut just upset you guys..Blue Skies..
Hi again Tango
I was on Doxetel two years ago. I a just had the Gaurdant 360 blood test and await results. Is this what you refer to? Did you have that one?
Yes, the Guardant 360 is a liquid biopsy for solid tumors approved by the FDA. It works if there is enough tumor cell free DNA. I never had a liquid biopsy.
If you had chemo you qualify for LU 177 treatment. It will treat the cancer everywhere and it can prolong life.
Even if you had chemo the cancer could respond to chemo with cabazitaxel.
Personally I will push for LU 177 PSMA treatment, less side effects and equally efficient or better than chemo in controlling the cancer.
Hi Tango
My doctors helper called all over Southern California Nevada and Utah looking for LU-177. Nobody has it. My wife has been calling around too. No luck so far. Do you know who has it?
No, I don't. I know that Dr Lenzo in Australia has Lu 177 PSMA I&T, believe they charge around 9K per treatment. In Europe it is more expensive.
The clinical trials may have it
clinicaltrials.gov/ct2/resu...
There are other ligands in clinical trials that use radioactive compounds different from the Lu 177 PSMA which is not available and they do not depend on Novartis
Hello, My friend is getting LU-177 through Kaiser Permanente Northern CA (South San Francisco) He might be going to UCSF to obtain it. Started 7 weeks ago when it was first available.
try ucla
Hello, From my neck to my knees. Widespread bone metastases. Gleason 8. Various scans lit up like a Christmas tree. Lesions everywhere. Fortunately no soft tissue involvement (i.e. liver, kidneys, lungs) and my cancer had not progressed further than the neck (i.e. to the brain). Twice a year I have a Prolia aka Xgeva (denosumab) injection to maintain bone strength and lessen the possibility of a skeletal related event (SRE). Recently my PSA has risen to 2.0 and when I see my oncologist next we have to decide what is our next step. Hope that helps.
thank you, it gives me hope when my doctor just told me I have about two years with a met in my pelvis and one in my L2
Hello, Beware, BEWARE of physicians who tell you what your life expectancy is going to be. Everyone is different and only the Good Lord knows how long you are going to live. If Doctor Goodman is an urologist, ditch him and search for a medical oncologist in your community, preferably one who knows about newer drugs like Pluvicto (Lutetium 177). One of my pet peeves is urologists who refuses to surrender patients to cancer agencies and specially trained oncologists. Good luck!
he is a cancer doctor, in fairness is qualified his remark with 'averages". thank you, I need prayers. cccnevada.com/doctor/oscar-...
Coincidentally, jst happened to be looking at the official Canadian cancer website, and they gave 5 yr survival probabilities for different type of patients...for metastatic the number was 30% survival at 5 yr. I don't know if that number reflects the latest treatments for metastatic.... so this number may well be yesterday's news, hopefully, and certainly not a prediction for any one man......many here still resisting "the beast" many years after 5 yr mark!! Happy to know he did specify the 2 yrs was an average...from what Ihave read recently, the number is higher now, but how much??? Hopefully your Doc hesitated and provided some context before evn suggesting an average? I'm sure that is the last question most Docs want to discuss/answer ??
I did ask him straight out about the how long issue. He could only sight stats but qualified it. I want to beat the odds. Just retired for most part and really enjoying life in the mountains of southern Utah with a big garden and 4 miles at at sunrise. strange how I do not worry and do not even think about the past or the future much. May I offer my favorite book/movie? "Siddhartha by Herrman Hess. A masterpiece that provides a beautiful context about life and finding meaning in it all.
Hesse's Sidhartha is one of my favourite books.
Maybe you can try Olaparib?
Guess I'm not average, 5 yrs and 4 mo. so far since diag. of stage4 with bone mets.... + quickly rising PSA and invasion of neural and veinous bundles out of prostate area../ Full spider web of G-9. I've run out of soc treatments and some others... now starting BAT to see if it helps..
Best of luck to you..I will have to look up what G 9 means and BAT. Learn so much from all of you, thanks very much
G9 , short for Geason 9 on biopsy. BAT --alternating very high and very low T. High to hold back mutated cancer and low to hold back hormone sensitive cancer... Just trying to reach a steady balance to keep them both in check...Doug
thank you very much
Hello, I took the time to read his bio and Dr. Goodman is an oncologist which makes me (and hopefully you) feel better. He has excellent credentials and I think the Comprehensive Cancer Centre in Las Vegas was where one of my "heroes" Dr. Nicholas Vogelzang worked prior to his retirement. Qualifying his answer with the "average" life expectancy also makes me feel a little better. Still, I do not like medical doctors telling patients how long they have to live. A medical doctor once told my brother who was suffering from pancreatic cancer he only had a month left to live. He was right. It was a month almost to the day but he almost destroyed my brother in the process. Remember everyone is different and there are exceptions to every situation. Once again good luck!
My 81 year old brother has been Stage IV since 2008. He just received his third cycle of docetaxel. He hopes to receive Pluvicto in the near future.
I am not past where you are.. but in a similar spot. I am continuing to have PSA rise and been through several courses of treatment. Xofigo is next for me also. And I can only hope we both have longer than your Dr gives us.Goood luck my fellow warrior
thank you, I hope we can keep each other posted on progress.
I’m 76 and have been fighting the beast since I was 61. Play tennis 2x week, golf every Tuesday. Work out 3x week. 2011 told I have 3 more years. Eat healthy, limit alcohol and meat but enjoy everything. On Lupron/Erleada. Let your wife read this. And best of luck. No one can tell you when your going to die.
Thank you. I really do not like the expiration date. On the other hand I have lost so many friends in their 50's. The last, Jim Miller was fine and then died in six weeks when he found out he had esophageal cancer.
I would like more of your bio, if you don't mind. I have been on Lupron, Erleada, & Xgeva for 4 months. Had RP, IMRT/IGRT, G9 in 2018. On Lupron for 2.5yr., PSA<0.1. After stopping Lupron for 1.5 yrs. PSA started to rise 9 months ago to 0.4. Had Radiation to T-11. 3 mon. later rose to 7.3, that's when I went on the Erleada & PSA down to 0.2.
Are you Castrate Resistant? How long have you been on Erleada? My MO likes it due to less side effects.
G-7 (3-4),2007 seeds/conformal beam rad. Old school. 2010 PSA rise to 15. Moffitt for biopsy, negative. Bone scan neg. MRI shows lesions in lymphs. Intermittant lupron for 5 years. By 2015, castrate resistant. Mayo Rochester with Kwan. Taxetere 6 months, then Radiation early 2016. Ok for 2 years. Rising PSA 2018. SBRT with Okunieff, Shands Gainesville, 2 lesions in Lymphs. 2 years later, SBRT again in Gainesville. Axumin scans every year. 2021, Brain tumor, craniotomy Gainesville Fl. PC tumor removed. This year, 3 small PC tumors return. SAS radiation to 3 lesions in brain. Put on Lupron/Erleada. Tumors shrinking. Rest of body, clear. I still have prostate. Took multiple DNA studies. I don't have the genetic markings for PC, but did spread agent orange, Vietnam, '69-'70 in Nui Ba Dein Mountain, Vietnam. Ate lunch in basecamp on a half-empty drum of the shit. I think it might have had a contribution to my PC journey. Have great health insurance, with VA as backup. I think that's it. Thanks for asking.
Most of us on this forum, I assume do not still have a Prostate? You have done well! I am 74 & was in the Army but avoided Vietnam. Went to Germany & worked on & tested our Nuc's. Was around a lot of Plutonium but it was housed in lead. So, don't think that led to my PC, but who knows?
My MO likes Erleada because of less side effects. He has 20 patients on it, currently. Thanks for the info. & keep up the good fight!
Glad you got duty in Germany. Must’ve had a physics background. Reading this forum every morning helps us keep going. Also info from experts like TA is hard to find outside this site. Keep fighting bro.
Have a degree in Civil Engineering (2 yrs. of Physics) & didn't graduate until 1971, when we were getting close to pulling out of 'Nam. So I was more fortunate than many, during that time!
I had radiation in 2018 and had no detectable PSA. Then in 2019 my PSA climbed. I was on Lupron at first and then went on Docetaxel for six months, Chemo is not fun. After that I have been on Erleada and Orgovyx and it kept my PSA down for about 18 months. Now it is up to 2.5. Lat bone scan an CT scan showed no changed back in March.. I have now ones on the 24th and an orientation to start on Xofigo.
My MO calls Erleada, Casodex 2.0 & really likes it. But as we know, each person can be different. What GS rating were you?
Best of Luck & thanks for the additional info.
I was diagnosed 8 years ago with prostate cancer that has spread to the bone. I was 54 years old at the time. The first thing you need to do is possible is get a second opinion if possible at one of the National expert sites mentioned in other responses to give you confidence that you are on the right path. There are many treatment options. I took xofigo while doing adt therapy. They did genetic testing of my biopsy and found I was brca-2 sensitive and put me on olaparib which has been working for a year so far. They also irradiated the bone Mets on my spine. There are many options for your doctors to consider and I think the biggest risk is not being aggressive with treatments. My doctor originally said I had 5 years…. He has since retired and I’m going strong. Please try to get a second opinion. Best wishes! Rick
Thank you for the info and encouragement. Best you you and your loved ones!
Diagnosed 2 years ago and mets in lymph nodes in pelvis and then PSMA found 7 meds in abdomen. I've been on Lupron and Erleada since then with no changes on bloodwork or in physical status. Stay strong
thank you and I wish the best for you. I do not feel so alone now.
You are never alone. We lean on each other to care and to lean on in times of confusion. There is so much care on this site
Diagnosed almost 3 years ago, expectancy 32 months (OS median). Today 0.1 PSA, using a PARP inhibitor - Olaparib.
HopingForTheBest1 in reply to
Are you BRCA2?
in reply to HopingForTheBest1
Yes, biallelic BRCA2 - also ATM
HopingForTheBest1 in reply to
I am also BRCA2+. Olaparib has been my most successful treatment to date. It lasted close to 2 years, keeping PSA undetectable, until it ran its course for me.
My Dear Brother James, You are NOT a statistic. Period! A good attitude can only help you so make sure you have a good one. Live one day at a time and breath. There are many many treatments coming down the pike. Get yourself in the hands of a good MO.
thank you for the encouragement. Best to you.
We are all in this together!
This is a helpful interview about Radium 223 by a physician who also runs trials using Lutetium. onclive.com/view/role-of-ra...
First you need a new Doctor. Find the best oncologist in your area. Use this website as a basis for finding the doctor if you need help. I am now 20 years fighting the beast. They told me I was going to die 15 years ago. I have extensive bone Mets and have just completed my 5th Xofigo injection. My PSA has been rising and is now 19, however, my Alp is only 80, down from220. As our brothers have stated here, you need to have a positive attitude and a good oncologist. We all are here to help you if you want. Have you tried chemo yet? Tough six months but may reset your disease. Many on this site much more knowledgeable on this subject than I, but it has given me another two years to keep fighting the fight and my next treatment will be Lulu 177. Best of luck keep us posted.
Jamesjohn63 in reply to
thank you so much. I think Oscar Goodman is pretty renown. I should have been more clear that he qualified his two years as a data average. He put me on docetaxel a couple years ago. Not a great experience. How are you tolerating the Xofigo? I have read some who did not do well going into the 5th treatment. Thank you vey much for the encouragement! Jim. cccnevada.com/doctor/oscar-...
I just finished my last shot of Xofigo. Scans next week will tell the tale, but I had very few side effects, mostly light nausea. My PSA has gone from 900 to 90 so far.
thank you, this is encouraging. Wishing you all the best for you and your loved ones
in reply to Jamesjohn63
You to Jim
in reply to Jamesjohn63
Hi Jim
Xofigo side effects for me are more fatigue as you go through the treatments and also you have to be careful with the possibility of diarrhea. Much easier than doxitaxel.
Good luck keep us posted.
Tom
Jamesjohn63 in reply to
thank you Tom. Heading down that path. Bone scans and orientation with Radioactive doctor or what ever the specialist is called on the 24th at CCCN
Brother I was Dx 10 years ago with Gleason 9 , t3 by surgical biopsy. restaged 7 years later to stage 4 with mets in neck nodes but still here and living strong. We all have that date but only God knows when so never give up and keep the faith.
I appreciate the encouragement. Best to you and yours,
Every once in a while someone asks on this forum for feedback from long haulers. There are men here who have lived with prostate cancer for 10 or 20 years. That doesn't mean you will live that long, however.
Nobody knows the answer to that question.
I was diagnosed in March 2020 and told by all 3 oncologists that I have 3 to 5 years. Since then my PSA has been undetectable every 3 months and scans show no progress of the tumors. Does that mean I'm going to live 10 to 20 years? Who knows.
Absorb the shock, get the best medical advice you can get from an oncologist, and follow their advice.
thank you Steve!
Yeh, I know the initial feeling. After being told I was stage 4, I went home, turned out all the lights, and felt sorry for myself the rest of the day. After the oncologists told me "3 to 5 years", I thought, well that means a fair number of people live longer than that. Maybe I'll be one of those.
I know (not well) two men who recently died from prostate cancer a week apart. It's no joke but it's not an automatic death sentence either.
Expect the best information you can get. If you feel like your doctor is not delivering the good, find another.
None of us know how long our lives will be. The best we can do is to live in the moment and as Great John (I think) said remember EDIAM - every day is a miracle. Philosophy cannot make prostate cancer or pain disappear but certainly gives me a tool to deal with my husband's rollercoaster journey for the last two years. We know a lady who did not buy clothes for five years after her cancer diagnosis. Then she relaxed and realised that she was in imminent fear of death for such a long time and had not been living a full life. My husband's attitude has been very good and most of the time he gets on with projects without thinking how long he might have. In the last two years, he renovated a bathroom, built two green houses (one in our old place and one in the current allotment), and is planning on his next dream project. Michael Singer's Untethered is a book that I have found very helpful.
thank you, I will get that book. May I recommend Siddhartha? Movie and book. Beautiful.
Hi I have read the book more than once but did not know that there is a movie on it.
I am 5 years 6 months on stage 4. Feeling pretty good, PSA is 0,017 and steady on Zytiga and prednisone. I can pedal my bike 10 miles, walk 5 miles, work in the hot sun, sleep at night, play with my grandkids 15 of them, swim, walk my dog ...but no sex. It is a fair trade if you ask me.
I agree with you, you are a blessed man. I wake every morning and feel that way. At 545AM a get my knee wraps on, Biofreeze on my back thanks to the wife get my Bose headset on, grab a Bobo's Bite ( I freeze them) and walk 4 miles. My cat waits for me so she can sit on the chair next to me then jumps on my lap. Very hilly here. Up down and all around. I am 64 on 9.11
You are just a kid, I turned 69 on 8/6. I wore my current dog out though. He is now 12 and he cannot keep up. I couldn't keep up with him until the last 2 years. I am feeling so good, I may get another dog to train and walk with. It used to be my favorite thing, walking in the evening after work. I told people about 8 days ago, that I felt better than I have in years. It may be true, although it hurts to sleep sometimes, and I use a Bidet instead of tissue because of the twist. Life is good, so good it scares me sometimes. Thank you Jesus....Not on my timeline, but yours.
My PSA is rising after being .1 for two years. Do you have mets ? I guess I have to read your bio
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