Apologies if people find this thread somewhat reductive and simplistic (not my intention - rather, I am curious about prognosis in a contemporary timeframe) but I was wondering whether members might be keen to share how long they have survived thus far since diagnosis of advanced prostate cancer.
Perhaps include basic info such as:
Time since diagnosis
Age at diagnosis
PSA at diagnosis
PSA now
Gleason at diagnosis
Location of mets
Brief summary of treatments undertaken
I'm very aware that this doesn't tell the whole picture of prostate cancer, nor is it attempting to. Nor is it discounting the fact that every case is different. I would just be curious to gather this info together to perhaps give us a more rounded idea of contemporary prognosis in light of recent advancements in treatment
Please reply if you are keen and willing to share.
Many thanks and best wishes to you all
Jack
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Jlcwonderboy
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PSA now <0.1 Note, Ductal does not always produce PSA. Tests on pathology slides indicate at least 30% of the cancer does not produce PSA. Cancer is followed by scans
Gleason at diagnosis G 4+4, T3N1, Ductal
Location of mets pelvic lymph nodes
Brief summary of treatments undertaken.
Feb 2016 Surgery
June 2016 Started Lupron (will be on it for two more years)
DX june 2006, Bpsa148, GS 10, age 49 ,widespread metastatic disease to bone and Lymph, originally spotted 3 cm spot on lung which turned out to be benign. Prayer, zolodex, Casodex ,zometa , nilandron, estradiol patches , Ketoconazole, zytiga, xtandi ,zytiga with food when it stopped working and now chemo, xgeva. Current psa 67 , psa nadir in 14 months after starting therapy at 3.0
Diagnosed March 1, 2017. Age 59. Stage 4, widespread metastases to spine, femurs, ribs, pelvis and a few lymph nodes. PSA 463, ALP 605. Started Primary ADT (Lupron) immediately, 6 rounds of Docetaxel Chemo beginning of April and last infusion on August 7.
Survived 6 months so far. PSA is currently .2, .2 and .19 for the last 3 months. ALP is 62.
You are doing it right Gregg, I can not believe all the information you have shared on this site, and you have only been in the game 6 months, By your taking charge of your care ,you will do well I am sure. Already your psa is way lower than mine ever was.
Oh gregg, what a man of substance you are! I was under the impression that you have started this journey at least 10 years before me. 2017 is simply unbelievable! You see things so clearly and almost perfectly that makes you an excellent mentor. I hope your treatments will erase your pathology to give a long lease of life that you well deserve.
Thanks! I went through a period of shock and sadness at first like everyone, but then decided that I wasn't going to waste any of whatever precious time I have left worrying or being sad, etc. I just realized how much more I appreciate my life now that I have to fight for it.
Diagnosed May 2015, stage 4, PSA 227, Gleason 4+4=8, bone met in T8 vertebra. Lupron since diagnosis, taxotere 6 rounds starting 3 months after diagnosis. PSA dropped to 9 in 1-month, undetectable within 4 months. Stayed undetectable for 12 months, then slowly started rising. Currently PSA is 1.4. Will start Zytiga when it reaches 2.0.
StageIV Gleason 9 Mets to pelvic lymph nodes. Psa 17 at surgery
RP, firmagon till 2016 with casodex started 2015. Started Xtandi Nov 2016 after PSA rose to 23. PSA now 2.6 with latest nadir 1.6.(appears to be rising...still monitoring )
Diagnosed in March 2015 at 68 years with no symptoms but PSA 7.9ng/ml. Immediate treatment RP + IMRT + ADT ( 2 years ). Staged : T2c No Mo. PSA stable since beginning of treatment up to now at 0.008ng/ml. No treatments at present. Doing quite well.
Age at diagnosis was 50. In 2000. Surgery, radiation, Lupron on and off cycles from 2000 to 2015. Orig, PSA was only about 4.2. Went to undetectable for years.
2015 diagnosed with advanced metastatic in the spine and in part of the iliac crest. PSA only about 2 or so. We discovered that my cancer was basically non-psa secreting so PSA was not a good marker for all those years. I was only diagnosed in Septemer 2015 because of severe stomach pain (referred pain from spine mets - took a week for docs to figure that out).
That was followed by rounds of radiation to spine and Iliac crest area. Plus Eligard(Lupron). PSA was undetectable then rising a bit near 4 ish. Oncologist realized that Lupron was failing.
Now on Zytiga, Zometa (for bones), predinsone And continuing Eligard.
Oh, and I managed to have a serious unexpected heart attack on December 16, 2016 (about 11 PM). I was fortunate to have called 911 within one minute of feeling chest pain because I actually had to be revived during the ambulance ride. Later that night a stent was put in.
Oddly enough that heart attack was (almost) a good thing. It was a wake-up call that got me eating better and exercising more. I feel better now than I have in 10 years. It also kinda shook me out of my slow burning "poor me" prostate cancer mindset.
I was fortunate to have local heart rehab program available to me. I did 12 cool weeks of that (3x per week), then did 12 more on a "metabolic wellness" program.
Now I'm still walking fast 3x a week and working out. I used to run (v-e-r-y slowly) but Docs told me not to run anymore because of the jarring on the spine. So now I walk fast-ish and pretend I'm running. Actually, I try to walk faster by using kinda goofy-looking "race walking" techniques (Google it and you'll see what I mean). I used to care how I looked running, but now, I really don't give a damn what I look like because I am still "out there" doing stuff. I do admit to sucking in my gut a bit when a pretty woman walks by though.
Anyway, I am doing pretty darn well these days. PSA remains undetectable (but remember it's not a great marker). Have bone scans and CTs every 6 months to check. The last one was March or April and showed no increase in mets anywhere... so that's good.
Original age at diagnosis 50. Advance Diag. at 68. Now 69 and counting.
I know I gave way more information than you asked but I figured it's time I contributed.
Dx March 3, 2017. Age 52. PSA 415. GS 8. Bone mets to pelvic and hip areas. No sign of metastases in lymp node. Thank God. Started 50mg of Caxodex on March 16th. After 7 days PSA 215. Started 6 rounds of Taxotere on March 30th and had 1st shot of Lupron along with xgeva. After 4 rounds, PSA down to 0.1. Completed 6th round on July 13th. Bone pains have subsided significantly, but, there are still very minimal aches. Tolerable with no pain medications required. I feel great and with lots of energy.
March 2014 Diagnosed with Gleason 9 and 8 in all sections of prostate. PSA 2.6 Age 70
ADT, Brachy, External beam radiation. in 2014
ADT ends 9/15 negligible PSA
PSA climbs to 1.6 July 2016 . back on ADT
PSA falls to 1.0, MRI shows small lesion in August 2016 . Continue ADT
Feel bad in early Nov. CT scan shows cancer spread to liver, lungs, and more in bone. PSA up to 25.
Chemo started in Dec. 2016
DNA done on liver biopsy showing nothing actionable
After 9 rounds of Chemo (Taxotere + Carboplatin) Scans show something on lungs. Lung biopsy unable to determine what spot on lungs is.
Deep Vein thrombosis found due to uneven swelling of legs. Add Lomax to list of meds.
Had 11th round of chemo in mid August. Still on ADT. PSA is at 0.7 . Acid Phosphatase, Alkaline Phosphatase, and PSA all have been behaving well. Scans so far have shown disease has stopped advancing. Chromagranin, CEA and LD have not been reduced as dramatically. Scans taken 9/1 but no results yet.
Hand and feet nails seem to be better since I started using ice during Taxotere infusion.
Diagnosed 8/12 at age 65. PSA=29 and Gleason=9 & 10. Many lymph node mets. All drugs for 4+years--Lupron, Firmagon, Casodex, Avodart, Vivelle patches, Zytiga, high dose Ketoconazole, Xtandi, Revlimide, Leukine, Somatuline, Lynparza, Metformin. Nadir .041. 3 occurrences of DVT and PE. 44 sessions of proton beam radiation. PSA rising. High dose testosterone. Current PSA=7.2
Diagnosed in June 2006 at the age of 60...PSA 12.9
Surgery in November 2006... Gleason 3-4 TB3 NO..PSA afterwards 1.2
Radiation in January 2007....PSA post radiation 0.5
Started ADT in October 2007..combination of Lupron/Casodex and Finisteride. PSA went undetectable within one month...0.03
On and off ADT since 2007 with PSA rising within 1 year of stopping ADT.
Had Carbon Acetate scan in 2012 found a suspicious pelvic lymph node,had radiation to the lymph node and started ADT. PSA went undectable within one month.
Continued ADT on and off and psa would come back, started ADT again and it continued to go back to 0.03 almost immendiately.
In 2015 had another Carbon Acetate scan, nothing found.
In 2016 my med onc decided to try and get me on Zytiga to try and give me a more long lasting sustained off treatment period even though the Casodex was still effective. Insurance approved it much to my surprise and delight.
As of today I am in an off treatment phase and my latest psa at Dana Faber was 0.04.
71 years old and turning 72 next month, try to exercise daily as well eat sensibly. One thing stands out that I still continue today on the recommendation of my med onc was having a glass of Pinot Noir per night with a few pieces of very dark chocolate 85%.. Its something I enjoy and will continue to do so.
I have been very blessed especially with not having any incontinence issues after and since the surgery and the effects from ADT have been mainly fatigue which at times have been difficult.
Dx April 2013 PSA 67 GS (4+5) 9 at 64 years of age, no mets, put on Eligard (Lupron) and a one month course of Bicalutamide PSA came down to <1.0.
Dec 2013 8 weeks of radiation PSA steady at 0.02.
April 2015 PSA still around 0.02 taken off Eligard.
April 2016 PSA 12 and doubles in two weeks to 25, no mets. Back on Eligard.
May 2016 PSA 1.3 remains around that level for eight months.
January 2017 PSA 9.4 I had progressed to CRPCa, my radiation onc hands me off to a med onc.
February 2017 scans reveal bone mets in the pelvis, lower spine and base of skull but no soft tissue mets, asymptomatic.
April 2017 added Zytiga and Xgeva to the Eligard
May 2017 PSA 1.4.
June 2017 PSA 0.13.
August 2017 PSA 0.13
Throughout the entire time I've been asymptomatic though whenever I've been on Eligard (which is four out of the last almost 5 years) I've experienced considerable fatigue but adding Zytiga didn't make it worse. Probably the worst time I had was during the radiation treatment which triggered a severe flare up of my chronic rheumatoid arthritis which had been mostly under control for decades, this subsided shortly after the treatment ended. I might add that in October 2014 I successfully underwent knee replacement surgery.
That's my story and I'm sticking to it :). Thanks to the other responders to this thread, I found your experiences interesting. Good luck to everyone.
Dx 2013 PSA 6.6, gs9; RP in 2013 : stage pt3b ; PSA rises to .3; ADT and SRT to bed in 2014; PSA rises to 1.2 in 2015; MRI finds two suspicious iliac lymph nodes ; ADT3 for 13 months, started and still taking metformin , estradiol patches, cabergoline, calcium, vitamin D3 and RT to all pelvic lymph nodes. PSA rises to 2.3 in 2017; axumin scan finds met in femur ; restart ADT3 , start xgeva , SBRT to femur, PSA .3 holding steady.
I finished Xofigo last October. My experience with it was good. Minimal side effects, no complications. Pain relief from multiple bone mets started after about 6 weeks on Xofigo. PSA was .66 on completion of Xofigo treatments. Unfortunately in January I fractured my T7 & T8 vertebrae in a fall. Fortunately the fractures did not displace and the vertebrae did not compress but I did have to go back on Hydromorphone for pain relief as a result of the fractures. Then, in July the T8 compressed. So I had vertebroplasty on T8. They couldn't get the needle in T7 so I had five radiation treatments to it. I am now on a 50 mcg fetanyl patch to control the pain with Hydromorphone for break through pain. My PSA has risen to 5.35 so my medical oncologist has started me on Xtandi. The fetanyl patch has made controlling the pain much easier. I am still able to do my daily activities, play bocce 5 days a week, and light exercises. As long as the pain is under control quality of life is still pretty good. I hope this is helpful information to others on this journey. My treatment history since diagnosis in 1999 at age 55 Is as follows:
You wrote, "I would just be curious to gather this info together to perhaps give us a more rounded idea of contemporary prognosis in light of recent advancements in treatment." This type of 'survey' will give a highly skewed idea of prognosis.
PSA now: undetectable as of last PSA test 8/6/2017
Gleason at diagnosis: 4+4
Stage T2
Location of Mets: One met on each femur; shrunk by 40% after Xtandi
Meds: Casodex 1 month
Lupron: 3/2014 (6 month injections); PSA rose to 2.8 12/2015
Xtandi: 12/2015 (Clinical Trial)
When Xtandi fails, and it will fail, my Kaiser doctor and I will look at my getting tested for immunotherapy, clinical trials and other promising treatments. I have a great doctor who is the "go to" Urologist/Oncologist" at Kaiser. I'm very pleased that the hormone treatments are keeping me alive. My libido is completely gone; I get fatigued and need a nap; I get brain fog; but what the hell at my age, now 77, I'm at peace.
I feel bad for you younger guys and keep you in my prayers. PC has taken away a great deal from you. Don't give up; stay positive; you're alive!
These are exciting times in PC research. Life expectancy is increasing versus 5 years ago. I pray for a cure. in many cases depending on your body, there are prospects of being in a durable remission state for many years.
Location of mets: bones, spots in pelvis and skull. Skull liesions no longer visible
Brief summary of treatments undertaken: Started on Casodex, but found it raised liver readings 5x normal. Taken off Casodex after couple weeks. Started Lupron and Xgeva in August 2012, 6 month injections. Continuing on Lupron but have changed to Prolia. No other treatment.
Now at CRPCa. Oncologist talking about either Zytiga or Xtandi meds. Next visit this Friday Sept 8th, for CT, bone scans and bloodwork. Apprehensive!
I am amazed at the amount of men starting out with stage 4 and huge psa who did chemo along with adt and it sent their psa to undetectable, which as anyone knows is a huge indication of favorable prognosis , and a paradigm shift in PC. I wish I had known 11 years ago. On the other hand I see almost no one with my stats at dx, who were dxed in 2006, who posted to this survey,Where are those guys? My hope is that by getting that undetectable psa with chemo, many of you guys will be fine 11 years out.
I was diagnosed in Oct 2016 at age 77, PSA was 7.6, Had 3D assisted biopsy took only 8 snips,all cancerous 3 were G8, 5 were G9. Fortunately no mets were found, 2 suspicious lymph nodes less than 1 mm. Immediately put on 50mg Casodex and 2 weeks later began Eligard. PSA slowly declining, after 6weeks was 1.12 then 3mths later was .96, then to .76, then to ,74. My current PSA is .64, still declining. My tumor is considered localized but inoperable because of it being outside the margins and involving the Vas-deferins. I have also had Beating heart Quad Bypass in 2010. Smoked for 10 years, quit in 1967.Alcohol use (abuse) for 30 years, dry for 25 years.Heav into supplements for 40+ years. No weight problems ever. Since having inoperable PCA decided on Radiation. Had total of 45 sessions ending 2/15/2017. 25 sessions included surrounding lymph nodes, final 20 aimed only at gland. Glad I am retired, Took up golf again after 25 years. Used to be a single digit handicapper. My current goal is to shoot my age someday. One small problem is Hydronephrosis in right ureter, It has improved as ureter can now be seen on last ultra-scan about 3 months ago. Suffer from hot flashes and great fatigue, losing muscle mass, gaining fat. Starting weight training to combat this.
Tumor = T3b N1 M0 Stage IV
Taking Provigil for energy, IP6 + Inositol Powder fo immune boost, Plus too many supplements to list.
Best to all who report here, you are my lifeline.
Bill
Diagnosed Dec 2015 Gleason 9 PSA 335. Lymph nodes involved, bone mets to pelvis and spine. Age 50.
Started 3 month Lupron Jan 2016. Refused upfront Chemo. PSA 1.5 after 6 months. Scans show lymph nodes reduced to normal size. All bone mets mostly resolved. PSA started rising slightly June 2017 and Doc placed me on Zytiga as well as per new trial results.
Vegan low carb diet with cheater chicken dinner once a week. Ridiculous amount of supplements as well as natural treatments.
Side effects of Lupron and Zytiga are practically nonexistent.
I believe in maximum information-minimum intervention in dealing with this disease and plan to stay healthy and undamaged long enough to be cured by advancements in immuno-oncology.
I hope others that are newly diagnosed realize that they are capable of one day beating this disease and don't breathe in this nonsense that it doesn't matter what you eat, you're all going to die. By educating yourself in all aspects of treating this disease, you may find yourself in complete control of it and will live for many years with a good quality of life.
Diagnosed fall 2013 a age 55. Prostate removed 12/2013, psa 35, gleason 8. No llymph node involvement but seminal vesicles involved. Started with casodex. Psa continued to climb. Discovered 3 bone mets in pelvic & spine. Moved onto Lupron (ADT). Managed psa for approx. 2 years. Hot flashes were primary side effect which I managed with Gabapentin. Moved onto Zytiga for approx 18 months with no side effects. Moved on to Xtandi for 6 months with no side effects. During this time my psa would go up and down. Med Onc said "at this point its just a number. Its your quality of life that we really care about". Received a couple rounds of radiation treatments to pelvic area due to some bone pain. Continued with Lupron and Xgeva throughout. Bone scans now reveal more bone mets with rib and more spine involvement existing mets show more activity, lymph node involvement around lungs, nodules have developed at the prostate bed and around base of bladder. Just completed first docetaxel treatment of 10 sessions. Only side effect so far is a day of feeling like I was coming down with the flue. Bone pain seems reduce and psa is down to 18!!
not been on this forum for 5 months, so only noticed your survey. Here are my stats
Dx Oct 2017, age 73, PSA 960 at start, now down to about 7, Gleason 4+3, mets widespread in bones, esp. humeri and femora, on ADT leuprorelin and had one round of docetaxel. Within days of starting ADT I came off pain medicine, and orthopaedic specialist says lack of pain shows ADT is working well, and likelihood of bone fracture is now very low, just avoid running and similar impact stuff.
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