I want to find out ......

I want to find out how many patients out there had, at diagnosis, Gleason 8 or higher and after your first bunch of treatments and medications, you hit UNDETECTABLE. My second questions is out of this group of patients, how long has your PSA been undetectable/ in remission so far or how long was it undetectable/in remission before it started to go up?

Thanks for your information.

motosue

73 Replies

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  • How are you defining Undetectable? I have noticed different people have different definitions...

  • My bloodwork paper and doctor says "less than .02".

    thanks.

  • My original diagnoses was G 8 (4+4), T3N1, Stage 4 D1, Ductal Prostate Cancer. Had DaVinci surgery last April (had to fight to get it as they thought is was to advanced). They took out the prostate and 14 lymph nodes (one "100% cancer"). Last June started a two year program of Lupron and finished 38 rounds of radiation last October. My PSA has been non detectable at <0.1 since last June. The concern is that about 30% of the cancer did not respond to PSA when stained.

  • thanks for your reply Dr_WHO.

    motosue

  • Dr Who - how did the radiation treatment effect you? Get wiped out? Able to work? Thanks!

    David

  • Towards the end of the radiation I had major fatigue. Could not even ride my bike ten miles. Had minor issues with control (both urine and BM), which I am still dealing with. Most of the issues are connected with Lupron (muscle loss and fat gain, joint pain, fatigue, fuzzy thinking). They are thinking of taking me off Lupron.

  • Thanks Dr_WHO! I already feel the fatigue thanks to Lupron (had first injection jan 31, scheduled for 7 more @ three month interval). have yet to look forward to the radiation - they are telling me I get 40 treatments (starting this May or June) so no doubt will experience similar issues that you did. And we are all different so respond a bit differently but it is still a kick in the butt!

    I appreciate you taking the time to answer my question!!

    David

  • I think you did well to insist on the surgery. Standard of care is to leave it be when not contained. I think it is crazy to leave the main tumor in place so it can continue to shed cancerous cells. Aggressive cancer deserves aggressive treatment. Sounds like you are doing well.

  • WSO,

    I can see your argument about shedding cancer cells but I can offer a counter argument on the other side. There doesn't seem to be a full consensus by experts.

    Here's the counter argument:

    Death from prostate cancer doesn't come from the prostate itself, but from the metastases in vital organs like the liver, lungs, heart, brain, and so on, and most of the pain and suffering comes from the metastases too.

    The systemic therapies (ADT, chemo, immunotherapy, targeted therapy) are aimed at ALL the tumor cells. When successful, they keep all of those cells under control, including those in the prostate. The cells stop replicating and stop metastasizing further. Many of them die. If and when the systemic therapies stop working existing tumors are going to start replicating and metastasizing again whether or not there are still tumors in the prostate. Cells shed from the tumor in the prostate are just in the noise of a much larger problem. It's not clear that they make a significant difference.

    So, should we get a difficult major surgery with significant side effects that may not make a difference, or may not make a significant difference?

    I don't know if my argument is right. It may be that yours is right. I don't know if anyone knows for sure, or for which patients your argument is right and for which mine might be right. Until the answers are known, getting cytoreductive surgery or radiation is still a crap shoot.

    Alan

  • Alan,

    When I was first diagnosed, my first thought was also to get it out but the doctor said that they won't operate cause the cancer is out of the prostate already so he sent me to do High Dose Radiation Seeds in my Prostate to kill the cancer tumor. I guess the seeds did their "job" cause now my doctors always say, when they put their fingers into my rear, that my prostate has shrunk a lot and it's so tiny now. At least for now , I'm good . Hope it doesn't grow back in my prostate again. :-).

    thanks Alan and WSO. Great health to you guys and all others here.

  • I was Gleason 9 at diagnosis, immediately went on to ADT, had surgery, then radiation and got my PSA down as low as 0.04. That lasted a year, and at my most recent PSA test in February (15 months after initial surgery), it jumped to 0.1. Next test is in May, with likely Xtandi next.

  • Thanks cfrees1.

    motosue

  • Willifred,

    I was Gleason 10 ,stage 4 M1B at diagnosis, bpsa 148, in 2006. No local therapy for stage 4 (inoperable).I have been on continual hormone suppression for 10 years and now chemo. Since the start, my psa nadir (lowpoint) was 3,and that was about 18 mos after dx. I have never been Undetectable. I would feel cured if I was undetectable, at least enough to forget about this damn disease for a few years.

    Dan

  • February 2016, 46 years old, Gleason 9, original PSA 286 and bulky disease in my pelvic and para aortic nodes. Bone scans negative. Casodex and Lupron immediately and then I went through 6 cycles of docetaxel starting in June 2016. Preoperative PSA .5 and open prostatectomy December 2016 with extended lymph node dissection. 42 nodes removed and only 1 tested positive. What doctors thought was cancer in scans was actually scar tissue where cancer was. ADT and chemotherapy treatment beat it up pretty good. Current PSA <0.01

    Ron

  • Day, Your results to me represent the difference in thinking in prostate Oncology from the 11 years ago when I was diagnosed to your current very aggressive treatment, that seems to have put you in complete remission, and to have that happen is huge! and bodes very well in my opinion, that you have beaten this disease. I was 49 when diagnosed. I have often felt that what they think they see in scans may not be what is really there, In your case it is shown to be true.

  • Thanks for the positive words Dan. I really don't know where things stand with this disease and the true test will be when I come off ADT in 2 years.(Actually 1 year and 9 months but who's counting!) I don't look at cancer as in remission, to me its putting it back to bed and try and keep it sleeping. It will always be there and everyone has it. Its been quite a run so far and most hospitals still wont offer surgery for advanced disease. I actually had the head of urology at a research hospital (Roswell Park in Buffalo, NY) tell me I was wasting his time even being there looking for a prostatectomy. The boys in Urology at the Mayo Clinic in MN thought different. Always get several opinions and I cannot stress that enough.

    A tip for you and anyone going through chemo is to bring an exercise step and do light exercise during the infusions. It will keep you from getting fatigued and gets blood to places that relaxing wont. Its no an easy treatment but I feel worth it.

  • Thanks Day, I was actually up in the country today cross country skiing on the remnants of the last storm, should have known on Mayo, must be 25 years ago Horst Zinke from mayo decided to proceed with a prosectomy on a patient with known lymph node disease and instead of stopping the procedure , continued and removed lymph nodes and showed that it would give better response, amazing how many have still not got that word.

    good luck and keep in touch

  • Thanks for your information. Sounds like you're doing great! congratulations! Wishing you many, many long years or even a cure.

    motosue

  • My PSA was 7.5 when I was diagnosed in February 2015 with GS 9 PCa. I underwent RP in March 2015 and within 2 weeks before starting any further treatment my PSA fell to 0.079.I started aduvant treatment in April with IMRT and a 2 year course of ADT2 ( Zoladex and Calutide 50mg ). Up to date all PSA readings taken every 3 months have remained at 0.008. I will be completing the 2 year regimen on 30th April 2017. My PCa was staged T2cNoMx and other details can be seen from my profile.

    Sisira

  • Thanks Sisira,

    My bloodwork only goes down to " less than .02". My doctor used to measure below that but at one time the number became confusing because the lab said going really low is difficult to measure accurately. Good luck on your journey.

    motosue

  • Febuary 15, 2008, my birthday, G4+4, cyrosurgery (by Dr Scionti), .02 for 6 months, at 4.4 ADT 1 year, 6 years AS, now ADT started 15 Febuary 2017.

    Doing well enough to stay mostly engaged except for ED.

    PeteG

  • 20PeteG16,

    Can you please clarify for me.

    What do you mean by "4.4 ADT 1 year, 6 years AS".

    Wow, you were diagnosed in 2008?!!!! Congratulations.

    motosue

  • motosue,

    My PSA never got above 5.7. Diagnosed on my 57th birthday after the results of a color Doppler guided biopsy pathology result of 4+4, T3b. I confirmed with AFIP and Scoop Jackson PCa Clinic at WRAMC in Washington DC. They confirmed only radiation with 32 months ADT, but I stayed with Dr. Stephen Scionti for cryosurgery with few minor side affects. His partner Dr Adams and I decided ADT after about one year for one year. Nondeductible for near 6 years by doubled within the last year, I am not six weeks into ADT. Hopefully for less time, but only if my body responds. return to active surveillance is my hope in the near future.

    PeteG

  • Good luck 20PeteG16. Hope your body responds quickly.

    motosue

  • Thank you for the kind words, seldom do we take the time to be considerate.

    Pete G

  • Gleason 8 on diagnosis and prostectomy. PSA was negligible for 5 years before starting to rise.

  • Thanks chascri ! Okay, let's see what others say . Perhaps 5 years might be the average, after going "undetectable". I'm just past 5 years of "undetectable" myself. So I want to know if I should be prepared for my PSA to start going up. I know everyone's body is different though.

    motosue

  • I was diagnosed in July 2012 with a Gleason 9 cancer that had metastasized to my bladder and pelvic lymph nodes. I started ADT immediately (Lupron and Casodex) and had external beam radiation in November/December 2012. My PSA peaked at about 10. In January 2013 it hit the undetectable level (<0.1 by my Doctor's definition).

    I stayed on ADT for 26 months - until October 2014 and then stopped all cancer meds. My PSA stayed undetectable until November 2015 when it went up to 0.1. In August 2016 it went up to 0.2 and remained at that level at the time of my last PSA test at the end of January 2017. Next test at the beginning of May.

    I am hoping that my vegan diet and heavy exercise program are slowing it down, but cannot really be sure. In any case I am doing much better than I expected at the time of diagnosis - it will be 5 years in July.

    Best of luck to you!

  • Thanks smroush ! My doctors tell me to watch my diet and to exercise too. I think my slow running brings in oxygen to my body. I thought I read that cancer doesn't like oxygen. ??? Congratulations for reaching 5 years. That's where I am too. My doctor told me I could go off on meds for a while and go back on but I am scared so I am still on without stopping.

    motosue

  • I saw an article sometime in the last 6 months about a study that showed that exercise stimulated the immune system and thus does help prevent or slow the progress of many diseases.

  • Ahhh, that's perhaps the reason all my doctors told me to exercise when I was first diagnosed. I thought they were crazy cause I thought it might spread my cancer more. :-) Now I have a different attitude about exercise. It's a must I think . I think exercising keeps my body strong so I can take and tolerate all the meds my doctors gives me and that running , however slow, makes me suck in oxygen into my body that perhaps cancer cells don't like. Just my thoughts.

    motosue

  • At dx I had Gleason 8, 4+4, had prostatectomy but showed PSA of .01, so had 37 radiation treatments and Firmagon. Quit ADT after two injections (hated it) and PSA has been slowly rising since. After 4 years is at .98. Watching for 2 month doubling time and/or when it reaches 2.0 before taking further steps. It is just a matter of time.

  • thanks Neathuh1 !!! Good luck on your journey.

  • Age 69 at Dx , gl9 , RP gl9 stage pt3b nadir .1, SRT, undetectable while on HT , off HT and PSA rises to 1.2, then HT and RT to pelvic nodes, PSA undetectable until off HT. PSA rising again now 1.3, So only HT has successfully reduced PSA to undetectable.

    Bob

  • Yeah that's the very reason I'm don't want to stop my HT treatment. Scared that it might go up. But it seems like when you go back on it, your PSA starts to go back down to undetectable ?

    How long since you've been diagnosed? When you go on intermittent, does it feel that much better? I guess your desire comes back huh.

    motosue

  • Desire comes back but ability does not unfortunately 😭! I have total ED , can barely find my little friend!

  • I know what you mean. I have the same kind of friend. I can't find him when I need him. :-(. I got to go digging and pull him out and stretch him before I can pee. I am wishing that my exercising will get my belly fat off my tummy. I got ED too but I am hesitant to take my Viagra that my doctor gave me. I guess I am afraid of getting that possible 4 hour erection. Yikes. Sounded like something good at first but I think that would be painful after while. :-(

    Slowly I'll get my nerve up to take my Viagra and hope that it makes my friend come out of it's cave and salute me. :-)

    motosue

  • Haha! Good luck!

  • motosue - I like your description of your little friend! I have the same issue. At first I thought the Depends were just mashing it all up tight out of sight but no longer using Depends but a thin shield for spotting accidents and still up tight out of sight! Seems from what I learned when the prostatectomy is done the urethra is cut so the bladder may be moved out of the way. then reconnected but the "hose" is shorter internally resulting in our little friends becoming shorter. Nice to know I am not the only one needing to stretch out the equipment in order to pee. I am now on the three month interval Lupron injections - have had one getting second this April. Along the same vein as short equipment, I did a testicular cancer self exam and was surprised to discover the "boys" are now about a third less in size, shrinking! Has anyone else experienced this from the Lupron shots? To me these are all small (no pun intended!) prices to pay in order to control The Beast of PC. Life sure changes! As Tiny Tim in the Christmas Carol said, god bless us all!

    David

  • Originally diagnosed in May of 2013 with a PSA of 67. Biopsy indicated Gleason 9 (4+5), scans showed the cancer had spread to nearby lymph nodes. After an eight week course of radiation and two years of Lupron my PSA was >.01. Lupron was stopped but a year later my PSA spiked to 20 and I went back on Lupron which brought my PSA down to 2.0. Unfortunately 8 months later my PSA went up to 9.4 indicating my cancer was castrate resistant and a bone scan revealed metastasis. I've begun Zytiga and Prednisone as well as continuing the Lupron shots and am now getting Xgeva shots. So far I've been asymptomatic and have tolerated the meds quite well.

    Ron

  • Hi RonL,

    So your PSA went down to "less than .01"? How did your doctor handle the metastasis? Radiation . That's what I did, and my doctor said it did the job. Hope so. I am afraid to go intermittent like my doctor suggests cause they might not be able to control and make it go to undetectable againt once it starts to go up. Yikes! So I've been on Lupron for 5 years, and 4 years on Zytiga/prednisone and Xtandi.

    No side effects as far as I know and easy to tolerate except the Prednisone makes my forearm skin so thin that it breaks and bleeds at the slightest bump. I now wear long sleeve shirts to hide my busted up forearms cause it probably scares people when they see me. That's an order from my wife. :-(

    Good luck to you on your journey.

    motosue

  • The bone mets are a recent development. When I was originally diagnosed back in 2013 I had no metastasis. At that time I was put on Lupron and had 40 radiation treatments. I took Lupron for 2 years then went off it with a PSA of >.01 which held steady for a year. Subsequently my PSA went up to 20 and I went back on Lupron. That brought my PSA down to 2.0 until earlier this year when my cancer became casrate resistant (CRPCa) and a bone scan revealed metastasis. At this point a secondary hormone treatment was added (Zytiga) and Prednisone for side effects as well as Xgeva to strengthen my bones.

    No skin problems yet or other side effects aside from fatigue. I'm glad to hear the Zytiga has worked so long for you, hope I'm as lucky. Good luck and take care of yourself.

    Ron

  • Thanks and much Aloha to you Ron.

    motosue

  • RonL - how did you handle 40 radiation treatments? I am facing same number of them soon. Much fatigue? Able to work during radiation treatments? Any incontinent problems return - seems regaining continence is what Dr is waiting for before initiating radiation for me. Turning out to be quite a journey to say the least. RP surgery and ADT sure change things. I look forward to having one day without discomfort from all this stuff. Good luck to all in this group!

    David

  • A lot of fatigue, no incontinence before, during, or after but no RP. As well the treatment sparked a major flare up of my chronic rheumatoid arthritis which subsided after the treatment was finished. Fortunately I'm retired but had I not had the arthritis flare up I might have been able to work though the daily treatments would have created scheduling problems. Yeah, it's a hell of a thing. Best of luck with your treatment David.

    Ron

  • Thanks Ron!

  • I proceed my comments with a prayer that my prostate condition continues as I now describe it. Diagnosed in 2012. Had hormones and IGRT. PSA undetectable since that time. Next PSA check is in April 2017. Keeping positive thoughts on this situation.

  • Wow, fmarr. Congratulations on your good work with your doctor. Still on continuous hormones? Good luck on your next PSA check. We're on the same track looks like.

    motosue

  • Hormones was for 18 months from 2012 to 2013. Lupron only. My radiation was both Cyberknife and IGRT for a total of 6 weeks.

  • Gleason 4+4=8, RRP Oct 2004, no other treatment, two successive <0.006s four years later, undetectable (< 0.1) until 2011 (almost 9 years later), rose to 0.24 by early 2013, dropped back to 0.10 late 2013, then took off to 52 in Jan 2017, so I began ADT in Jan and chemo in Feb.

    Keep in mind that a sample as small as this forum is not sufficiently robust for decision fodder.

  • Wow, no treatments except RRP, and stayed undetectable for 9 years!!! I'm impressed. I'm scared stiff of going off my meds. I'm a whimp. Good luck with your ADT and chemo. And thanks for your wisdom about the small amount of sample from this forum.

    motosue

  • Good morning all, I was a Gleason 10 at Dx, PSA of 16, staging was T3b - local Metastisis to seminal vescicles but none to nodes or bone at this point, "tumor" had fused to my rectum, had RP last October rectum was stripped of attachment without any perforation of same, 2016. I am 65. In Dec. 2016 psa WAS 5.65 so did 5 weeks of Casodex and had first lupron injection Jan 31, 2017 while PSA dropped to 2.3. So waiting for "undetectable". Get another PSA this "April when get next injection. Scheduled for 7 more injections over next two years (every three months). Am waiting for 40 radiation treatments (external beam) , waiting for continence (down to one shield a day from multiple pads per day) before starting radiation (perhaps this May or June start). Surprised at the extended degree of discomfort from surgery in pelvic area. SLOW recovery in that regard, slow slow improvement certainly not day to day or week to week but every few weeks notice slight improvement.

    David

  • Hi bjorner3,

    Hope you get your "undetectable" real soon. And glad that you are getting improvement every few weeks. Such positive movements. Great! Take care and think positive like you are doing. We can survive till the researchers find the magic bullet that we are waiting for. :-)

    motosue

  • It started to go up 18 months after I stopped all treatment and meds.

    Clint

  • Thanks clintmeek . If I do decide to go intermittent, I have something to go on regarding how long I should be off before going back on. What I am kind of confused of is that I read from the beginning of my journey is that whether I go intermittent or not, the survival time is still the same. Hmmmm.

    motosue

  • I was on ADT with Lupron, Casodex (then Nilutamide), Avodart, and Cabergoline for 5 years. In 2014, I had the Provenge treatment. I stopped Lupron 6 months ago but continue the other drugs. My PSA has been constant at 0.006 and my T < 6. If my PSA starts going up, I will restart Lupron at some point. Clint

  • Hey Clintmeek,

    Do you feel noticeably better since dropping Lupron 6 months ago? Or is it too early to tell yet?

    Also you must have a super duper lab cause my lab can only read my PSA at "less than .02". Cannot tell if it's moving or not with that kind of indicator.

    Thanks.

    motosue

  • I can't really tell any difference yet.

    Clint

  • G8 3/2014 with 1 bone met on each femur. Undetectable PSA for 15 months with Lupron. Started Lupron/Xtandi trial combo in December 2015; PSA still undetectable, 15 months later. Mets have shrunk by 40%. Other than that no changes in quarterly Ct and bone scans.

  • Hi afab,

    Wow Lupron/Xtandi shrank the met by 40%. That's pretty powerful. Thanks.

    motosue

  • Diagnosed in October 2015 with Gleason 9, PSA 6.2. RRP in Jan 2016, removed local lymph nodes, seminal vesicles at the same time, all positive with cancer. Oncologist Urologist said they could not get all of the cancer and termed it "particularly aggressive". Two weeks after surgery, PSA was 0.19. Was put on Lupron for a year and quickly dropped to < 0.01. Then tried intermittent treatment. After 3 months, 2.0, and after 6 months, 10.2. Scan showed cancer in lymph glands in pelvic region. Back on ADT immediately (Trelstar) and back to < 0.1 (Quest seems to only go to one decimal point here.) Been like that ever since. Urologist and oncologist (both new since I moved) both say "Do not change anything!" No other meds, try to eat fairly healthy, taking statin, lycopene, capsaicin. Next test in 2 months. Lots of side effects from the Trelstar, but much better than the alternatives. Good luck!

  • Beermaker,

    Good luck on you next test in 2 months! Yes, I'd rather have side effects rather than the alternative.

    motosue

  • Gleason 8, 6 month eligard shot then HIFU instead of radiation. Undetectable several months after the surgery but the eligard was still in effect. Discontinued the ADT and waiting to see what my PSA looks like in a couple of months. Fingers crossed.

  • Hi WSOPeddie,

    Good luck on your next PSA and your journey. Take care.

    motosue

  • yes, no(2)

  • Sorry , didn't understand what "yes, no" means.

  • I had a Gleason of 8 stage 3 PCA. Lymph nodes were removed when I had DaVinci surgery to remove my prostrate. My PSA was .08 3 months later. I had a shot and 26 radiation treatments. It dropped to .03 then .02. As my T-levels came back my PSA went up to .04 which the doctors said was normal. Unless you get to .1 they don't get upset.

  • Thanks Van for your reply. Good luck.

    motosue

  • I was diagnosed April 2016, with Gleason 10, metastasised to many skeletal sites. I had focal cryotherapy (2 rounds) and I also had a zolodex implant. My PSA Nadir was 0.20 and then it started to creep up to 3.0 within 3 months. Now I'm back on Zolodex and also had 1 round of 6 of Docetaxel, PSA currently 1.0.

  • Gleason 9, failed Surgery could not have radiation as post Op PSA, was over 7, DX, with Micro-Metastasis---Went on quadruple, now Quintuple Blockade--hit Undetectable in 60 days--and have been such for a year. But remember I have a massive, unusual supplemental program, that goes with the drugs.

    Nalakrats

  • Can you detail your "massive supplement program?

  • I have put out most of my program before, it changes as new things become available and marginal supplements may be subtracted. This is a long process, for me to detail---please check my history, and see if you can find what I wrote in the past. I get about 20 requests a day--so I am doing the best I can. But it should be in the HealthUnlocked Cloud. Let me know

    Nalakrats

  • Thanks for your intriguing post as always. I thought I had a lot of meds. You take meds that no one have heard about yet ! Well I have not heard of the different supplements that you posted recently. Good for you. :-)

    motosue

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