jUST CURIOUS

So I am just curious because I see a lot of people on this site and others that seem to go long periods of time on Lupron successfully. Many articles say Lupron fails on average of 18-24 months but the spread is like months to decades. I would like to see if I can get response from the masses as to how long Lupron worked and get a feel for what the current average is. Thanks in advance for your input/response.

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  • Dr. Myers says if you have PCa in just the lymph nodes 10 + years on lupron but if it has spread to the bones expect 6-36 months

  • Thank you, gusgold. I guess that on Firmagon the results are similar.

    I've been on mainly Firmagon for three years, switching to Lupron a couple of times, and then had a bilateral orchiectomy to stop the Lupron, and now I remain on Xtandi. I had extensive pelvic lymph gland involvement and a few bone mets. My PSA was rising, and now after the orchiectomy it has finally fallen to a very low point, but I'm having major problems with bone "degeneration," from shoulders to feet. My pancrease is also atrophic and I've got a small abdominal aortic aneurysm, plus a number of other things, including more lymph gland mets.

    I feel like I'm falling apart. But setbacks are inevitable. I was diagnosed in late Oct/early Nov., in 2012, with a very high PSA of 744.

    Thank you for the info, even though it doesn't look good.

    CERICWIN

  • Ceriwin, You are in my thoughts and prayers..Battling this horrific disease. You are truly amazing with all you have been through.

  • Thank you so much, Ladysingstheblues,

    But there are others who have been through more than myself, and who have been fighting it longer, too. But I did have a "crash course," beginning with such a high PSA and the lymph gland metastases being so extensive. And an orchiectomy, which was the most difficult decision of my life, so far.

    It has been a rough road, and it's not over. There are more bumps in the road ahead of me on this journey.

    CERICWIN

  • I can only cite my own experience but I have been on Lupron since 2003. I was diagnosed in 2001 with PSA at 8, I don't remember the Gleason score, but had one positive sample of twelve. I had radiation that proved to be a failed therapy.

  • My husband was diagnosed 2004, 55 years old, first Lupron shot was Feb. 2005 and he's been on it ever since, no breaks. Cancer was already metastasized into his tailbone, outside the margins, up the neck of his bladder, etc., your basic prostate cancer nightmare. We just saw his urologist 2 weeks ago, a very happy doctor indeed! My husband, Les, just had a bone density test and his urologist was shocked to see how good it was. No osteoporosis, he was expecting his bones to resemble swiss cheese. Les doesn't take any supplements unless I nag him into a Centrum Silver. His diet is average, no healthy choices of stuff, just food. He does get plenty of vitamin D since he's in the sun most of the time. (we live on Kauai) His PSA has remained 0.01 for years now. He was stage IV after surgery and Gleason 9 or 10. His tests prior to surgery were all wrong, supposedly the cancer stayed in the gland, etc. His psa at time of diagnosis was 16.9. We live a full life and don't dwell on cancer. He doesn't think of himself as sick. Every 6 months he gets his psa and other blood work done, which is all in normal range, and gets his shot. I know that shoe will drop one of these days but we certainly don't sit around and wait for it to drop! His doctor told him he could go 15-20 plus years on Lupron. I believe it. You should, too.

  • G-d Bless. .. wishing for another 20 years :)

  • I was on Lupron/Eligard for well over a year, got my last 3-month shot August 22, they had me on Tamsulosin HCL 0.4 mg along with the Lupron/Eligard shots, until the side effects got to be way too much trouble, dizziness, head, chest, stomach aches, and my legs felt like lead, when they took me off Tamsulosin all the side effects except the leg problems went away. Had 60% of my prostrate removed, 43 sessions of radiation, for 76 I seem to be doing quite well, I work out every other morning for 3 to 3 1/2 hours, I still get exhausted and have to take naps a little more frequently, the biggest drawback of this drug is no sex life, it seems it doesn't allow the body to create testosterone, so for all intents and purposes I'm a woman, or at worst a transvestite. I have no idea how long this drug stays in one's system after you stop taking it, we will see. I don't know if this is helpful or not, but there it is.

  • Diagnosed gleason 8 in 1999. Recurrence in 2006. Intermittent lupron therapy 2006 -2011. Continuous lupron 2012 to date. First scans showing bone mets 2008. First severe cancer pain from mets in 2012. See my profile for details of all cancer treatments from 1999 to date.

  • I have been on Lupron mono therapy for the past 7 years. I have extensive mets on my pleura(lining of the lungs) and a few were in the lung. None were in bone. My PSA is slowly rising and now has a doubling time of 12 months. It was 1.64 yesterday so we added Casodex. My original diagnosis at age 56 was a Gleason 6, PSA 11.6. I opted for a seed implant and external beam radiation. They also told me to expect Lupron to work for about 2 years and then fail. i remain very active for a 75 year old and aside from hot flashes and no sex, I have a full life. We are saving Abiraterone and Enzalutamide for next steps when needed.

  • I'm 84 diagnosed 2005 PSA 3.5,gleason 6. Started lupron interrmittently in 2007 (lymph node) then started Lupron every three months plus casodex and avodart in 2014 with PSA of 0.35 until steady rise starting late 2015 to 1.92 this week. Always castrate testosterone.Expect Start Zitiga sometime this year.So I got 14 years from Lupron---- thanks to Dr Higgins.

  • I have been on intermittent ADT since 2007 and I am now on my 5th cycle of treatment difference this time my Onc has substituted Casodex for Zytiga and God willing it is still working.

  • I have been reading papers on PubMed for a dozen years & the 18-24 month range for ADT failure has been part of first-paragraph boilerplate for at least that long.

    My understanding is that it means that the bulk of patients with mets will fail within that period. As someone who failed RP at age 56, that made me leery of Lupron. At age 68, Lupron may well be in my future, but I am still in no hurry.

    When the subject comes up, there are always a few people who have been on Lupron forever & who try to reassure those contemplating it. But outliers can give a false impression. Most of those who became CRPC within 24 months are not around to tell their stories. & some of the long-time users do not have mets.

    I have dug out a few recent studies.

    [1] (2015) "Statin Use at the Time of Initiation of Androgen Deprivation Therapy and Time to Progression"

    "In our ADT cohort of 926 patients, 283 (31%) were taking a statin at ADT initiation. After a median follow-up of 5.8 years, 644 patients (70%) had experienced disease progression while receiving ADT. Median TTP {time to progression} during ADT was 20.3 months ... Men taking statins had a longer median TTP during ADT compared with nonusers (27.5 ... vs 17.4 ...] months"

    That's brutal information. Half of the men not on statins failed ADT within 17.4 months.

    Considering that median survival was 10.1 months longer for the statin users, I fail to understand why statins are not routinely started at the same time as ADT in non-users.

    [2] (2016) "Serum testosterone level predicts the effective time of androgen deprivation therapy in metastatic prostate cancer patients."

    "testosterone levels of ≤25 ng/dL after the first month of ADT offered the best overall sensitivity and specificity for prediction of a longer time to CRPC"

    Look at Figure 2. "Time to CRPC" in days.

    I can't show the figure here, but it looks to me that if T does not get below 25 at one month, 75% of those men will be CRPC within 500 days (16.7 months). For those who attain lower T values, 75% will be CRPC within 700 days (23.3 months).

    [3] (2014) "The effects of nonspecific HIF1α inhibitors on development of castrate resistance and metastases in prostate cancer"

    This study included men on ADT who did not have mets at initiation, so results can't be compared to [2], say, where all the men had mets.

    Tumors that outgrow their blood supply do not receive sufficient oxygen (hypoxia). They induce a survival factor: hypoxia-inducible factor (HIF)1α. The cells become aggressive & difficult to kill.

    "Digoxin, metformin, and angiotensin-2 receptor blockers (ARB) are three commonly used cardiovascular medications, which have all been shown to inhibit HIF1α by different mechanisms. The effects of these nonspecific HIF1α inhibitors on the development of CRPC and metastases were therefore investigated in this study."

    "men on HIF1α inhibitors had a 73% lower risk of developing castrate resistance compared to the men receiving no inhibitors"

    "The median time for developing CRPC in patients not on HIF1α inhibitors was 2.7 years compared to 6.7 years in patients using HIF1α inhibitors"

    As an aside, my integrative medicine doc has given me low dose nitroglycerine patches off label. They cause a prolonged dilation of blood vessels via nitric oxide, & therefore combat hypoxia.

    ...

    Overall, the message of this post is that (a) yes, median effectiveness of ADT is relatively short, but (b) there are various things that might significantly prolong its efficacy.

    -Patrick

    [1] ncbi.nlm.nih.gov/pubmed/261...

    [2] ajandrology.com/preprintart...

    [3] ncbi.nlm.nih.gov/pmc/articl...

  • Great information and thank you. Its also hard to know where I fit in the curve because I failed RP with a persistent PSA of 9.6. It is considered micro-metastatic but that just means the tumors are too small to show up on the scans. Fortunately I did respond well to the Lupron which at 3 month intervals dropped from 9.6 to .41 to .14 to .03 to <.01 which was said to be a good indicator that Lupron will be good for a while. I was curious but still in the dark as we all are with this disease.

  • I don't think ABR's are good if you have kidney disease. What about an ACE inhibitor to functiion as a nonspecific HIF1α inhibitor?

    Rich

  • I don't think ABR's are good if you have kidney disease. What about an ACE inhibitor to functiion as a nonspecific HIF1α inhibitor?

    Rich

  • I've read you posts with great interest. I am scheduled for an eligard (similar to lupron?) shot next week. If you've managed to avoid lupron, what medications are you taking? I am gleason 8, with a weird low PSA of 2.7.

  • Some circumstances require Eligard {Lupron}.

    Rich

  • recurrent cancer in 2011 started on Lupton. One year on, 14 months off.Off right now but will start again in Sept. All the Dr's say is that my cancer does not seem aggressive but no opinion on how long it will last.

  • Like everything else prostate cancer it really varies.

    In response to the comments about the literature boiler plate it seems to me that this is a result of using boiler plate again and again without anyone questioning its reality. It is concerned, blindly, as a matter of fact, but......

    Joel

  • I just wanted to say that this is a great support message board. As a newbie on a different board the admin there really gave me a hard time even giving me 'infractions' and nasty emails if I strayed off thread or messed up somehow. Glad to be here.

  • Our story is quite different and uncommon, in my opinion. Lupron (with docetaxel) gave ex 6 months until castrate resistant. PSA deceased from 2739 to 12 before increasing. Diffuse bony sclerosis noted from neck to knees and lymphadenopathy, but no visceral mets at diagnosis 4/2015. Age 45. Still kicking, daily pain a reality. Still able to ride bikes and ski with our two small children.

  • Hi, I guess I should check in. GS3+3, psa 4.2 in 1997. Pd seeds + xbrt in '98. Recurrence apparent by 2001 with psa climbing to 10 before I started Lupron+Avodart+Casodex. Have now had 3+ cycles of intermittent (will start #4 Lupron cycle next week), so that makes it 15 yrs or so.

    Fortunately, I've never had any serious side effects from Lupron (so far, knock wood!). I'm 80, still walk my dog 2 mile/day and play 1-2 hrs of decent racquetball twice a week. Yes, I'm slowing down.

    The guy in Hawaii who believes his Vit D is OK needs to confirm with a real test. I'm in smoggy NJ and do take 6000 IU/day to keep my D over 50.

    Yes, my original cancer was a pussy cat, but somewhere (probably iliac lymph) it has a time bomb with my psa doubling time somewhere between 3 and 6 months all these years.

    Herb S.

  • I was diagnosed in 2009, PSA 8, Gleason 4+3, failed RP and EBRT and started Triptorelin in late 2010. I have been on intermittent treatment since then but this time my PSA only got down to 2.5 so I am switching to continuous monthly injections. My general health is pretty good with no sign of mets so far. When I started my oncologist said 5 years on Lupron was par for the course. I think everyone is different.

  • Been on Lupron for 48 months. At diagnosis my PSA was 23, and a bone scan showed positive. My PSA hit a low of .080 last year and then started to climb. By April this year it was at 0.214. I get my next PSA reading this Friday.

  • No surgery I take it?

  • Correct. Since it had already spread to my bones surgery was not an option.

  • My latest PSA taken last week was 0.4. It appears I am entering the 'castrate resistant" stage. My ONC says he will add to my treatment when PSA reaches 2.0. I am guessing chemo, but don't know. I see him next on Oct 10.

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