Lupron or not that is the question

I have wrapped up 6 rounds of chemo while taking a monthly Lupron injection since November. My PAA has dropped to a .1, should I take a Lupron break? I have been on and off Lupron for the last three years and it kicks my butt, but it works on keeping my PSA suppressed. Each break gets shorter with increased velocity and doubling time. Should I risk taking a break or suck it up. It has been three years since my RP surgery followed by 38 rounds of radiation with Lupron. Stage 4 with Lymph node Mets.

[Tall_Allen]

Does your break last long enough for your T to recover?

[Hidden]

Right now I get a shot every 30 days. Based on my history I might get three months before my T is decent. Right now it is 7.

[Bjry]

I’m also finding it tough to decide whether or not to continue with ADT on its own – in my case Zoladex. Not the same circumstances as you. In July 2018 I was diagnosed with Stage 4 Gleeson 8 PSA 152, in April this year after 9 months of Zoladex and 6 cycles of Docetaxel PSA my PSA is 0.07.

My MO recommends persevering with Zoladex alone until my PSA starts to climb. I’m not attracted to long term monotherapies for anything. But 9 months on Zoladex isn’t that long so at this stage I’m feeling if the horse is still winning why change?

[Hidden]

I’m scared right now to take a break . I too was #4 ,gl8 and I did Rt and double adt until

Orchiectomy almost two years ago . Still on test adt drug. Undetect for over 31/2 but I fear a rapid return if I stop adt .

[Boywonder56 in reply to Hidden]

You had orch....and still do adt?...thought thats why u had jewels hacked....enlighten me

[Hidden in reply to Boywonder56]

First shot firmagon .But i also started tak -700 adt test drug at same time.4 pills per day . That knocked PSA down . Then I switched to Lupron . Dr asked me to wait for one year to have surgery . I did . Then no more Loopeypron shots . Still on the test drug until failure . At least no shots . Nobody wants me to change course, for fear if I stop the adt the pc will rage back over me . Been there done that. It’s a greedy sob once it gets its tentacles around our jugular it’s hard to break . So yes , total castration is me . It’s a miracle that I survived the first round . The future is for others to think about . We deal with today . Eat healthy and enjoy every day above ground . Do whatever you think is right to extend your stay in this grand hotel . Peace and good luck moving forward . It’s one hell of a journey ., Good luck 🌵

[Hidden in reply to Hidden]

Also , doing the snip snip doesn’t fully prevent symptoms . I still have all of the same symptoms. Just no more chemical shots . I feel it’s easier on my cardio and organs to not have the chemicals running through my canes more than I already do . I gave no plans to break from the pills . I’m floating along for now until I hit a snag . Live for today . The future is not a given for any of us once stage 4 ..

[Hidden]

Lulu, My concern as well. Thank you!

[Hidden]

Do you want your PSA to rise?

GD

[Hidden in reply to Hidden]

I do not want my numbers going up, but taking a break is the only way for me to keep working. Work life balance?

[DrWrite]

Not sure what you should do, but wow...did you say 38 rounds of radiation? In what area?

[j-o-h-n in reply to DrWrite]

To try and answer your question. 38 rounds of rad sounds like the prostate bed after RPD. Sorry If i'm not correct... but I'm a butinsky...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/14/2019 5:22 PM DST

[Hidden in reply to DrWrite]

The prostate bed, they thought it was what was producing the PSA, but my numbers didn’t drop until Lupron was in my system for 5 months. Since then The auximen scan showed a large lymph node in my groin that was in the area radiated. Hopefully the chemo worked. I will stick with the Lupron But I hate the way it makes me feel. Oh well, it does work for now. 😊💪

[Scorpio99]

2 years of Lupron injections were recommended by my doctor for the purpose of lessening the chances that cancer cells could return in the next 5 years after I had completed prostate removal surgery and 38 radiation sessions, getting my PSA down to .01.

[Break60]

Did you have RT to all pelvic lymph nodes? Like you I took holidays from adt after 13 months but Psa doubled in two months every time. No more holidays. See profile. Now I’m on estradiol patches . No more Lupron . The patches work the same with fewer side effects. Google PATCH trial for info.

Bob

[Hidden in reply to Break60]

He did take several lymph nodes but they were negative. The seminal vesicles were positive. I am going to ask about the patches. Thank you.

[Break60 in reply to Hidden]

My nodes were negative too but two years later PCa showed up there so I had them zapped. I was stage pt3b also. See my profile.

Been there done that!!

[monte1111]

I think i'm a lupron lifer. More power to those of you who can take a vacation. Maybe I'll be there someday. Enjoy.

[Hidden in reply to monte1111]

Thanks for the reply, I might very well be a lifer as well, another vacation might be a poor choice. I knew the feedback on this site would help me decide. Thanks!!!

[Boywonder56 in reply to monte1111]

They tell me that too...ductal gleason 8/9s...with mets at dx...its lupron....and in titan trial...but no other options..peace..

[Break60]

I hope the fda approves the patches after the patch trial is over so Lupron makers go bankrupt! The stuff is a man killer!!!

[JimVanHorn]

I started with 42 radiations in 2007 and they found metastases in 2011. I had 30 more radiations and started Lupron (3 month shots) later changed to Eligard (generic). I stayed on Lupron for 6 1/2 years and now I have no cancer. I found that after the first year the side effects of Lupron were not as bad. I wish you luck in your decisions and above everything else just keep truckin'.

[Hidden in reply to JimVanHorn]

That is great! You obviously never became hormone resistant? Are you now treatment free?

[JimVanHorn in reply to Hidden]

I never became hormone resistant, my PSA was 0.006 for 5 1/2 years. I am treatment free from cancer for 1 year now, but I have diabetes, heart diseases, and kidney stage 4 disease. I did not have radical prostatectomy (RP) and I can have orgasms (dry) but my T can come back with time, which would help. I am urinary incontinent, sleep with a CPAP mask and I am 74 years old now. I am selling my Condo and moving into a nursing home in July. I am amazed that I am still alive! My life is relatively normal and I have decided to eat a vegan diet, because of kidney and diabetes diseases. I go to a gay church here in Orlando and they really helped me get through cancer with support and prayers. I also go to 12-step programs and sponsor two men, which keeps me busy. I hope you understand that this disease has times when you have low energy, and other times when you feel just fine! Watch your lab reports for everything including B-12 or vitamin D 3 or Potassium. All of these can make you feel tired if the levels are off. My creatinin kept going up because of my kidney disease and that made my hemoglobin go down, which made me tired. But you can get your test results on your home computer and look at everything. Then ask lot of questions because the cancer doctor is interested in your cancer, not your entire body. So stay in charge of your recovery and just keep on truckin'.

[Hidden in reply to JimVanHorn]

You are an inspiration thank you for your advice and message!

[jedgar1]

I had the same situation after RP and 38 Radiation treatments except I had a met in a rib. I was getting a treatment plan of intermittent Lupron. I changed Drs and I have been on Zytiga and Lupron for 14 months. They did SBRT to the rib met. It was thought at one time I had mets in two lymph nodes and they were going to treat them the same way. The drugs are hard but my PSA and T have been undetectable for 8 months. My plan is two years.

[Hidden]

Thanks! I will discuss with my oncologist. Glad there is options. I have decided that I need to stay on treatments so my numbers stay low.

[Don_1213]

Interesting. Google turned up endo.com/File%20Library/Pro... - which has some interesting numbers on side-effects. From the chart provided by the drug manufacturer - it appears that some are much lower than the commonly reported SE's from Lupron. The study that report on had 138 subjects, and here are the numbers:

Table 1: Incidence (%) of Possibly or Probably Related Systemic Adverse Events Reported by ≥ 2% of Patients Treated with VANTAS for up to 24 Months

-------------------------------------------------------------------------------------------------------------------

Adverse Event, Number, (%)

-------------------------------------------------------------------------------------------------------------------

Vascular Disorders:

o-- Hot flashes*, 112, (65.5%)

General Disorders:

o-- Fatigue, 17, (9.9%)

o-- Weight increased, 4, (2.3%)

Skin and Appendage Disorders:

o-- Implant site reaction, 10, (5.8%)

Reproductive System and Breast Disorders:

o-- Erectile dysfunction*, 6, (3.5%)

o-- Gynecomastia*, 7, (4.1%)

o-- Testicular atrophy*, 9, (5.3%)

Psychiatric Disorders:

o-- Insomnia, 5, (2.9%)

o-- Libido decreased*, 4, (2.3%)

Renal and Urinary Disorders:

o-- Renal impairment**, 8, (4.7%)

Gastrointestinal Disorders:

o-- Constipation, 6, (3.5%)

Nervous System Disorders:

o-- Headache, 5, (2.9%)

-------------------------------------------------------------------------------------------------------------------

* Expected pharmacological consequences of testosterone suppression.

** 5 of the 8 patients had a single occurrence of mild renal impairment (defined as creatinine clearance ≥30 <60 mL/min), which returned to a normal range by the next visit.

-------------------------------------------------------------------------------------------------------------------

All I can say is WOW.

Only 2.3% reported decreased Libido? And 3.5% erectile dysfunction? How can this be correct? If the drug is effective - it must be suppressing T - which is the goal of the drug. The reports of just these two side effects seem to be reported by close to 100% of men who report on using Lupron (in forums.)

What's different? Anyone know of any further studies showing these sort of numbers, because I'm going Friday for my Lupron shot - and if this is SO much less damaging - it begs the question why the hell am I being injected with Lupron?

[Longterm101]

How long have you been using vantas?

[Longterm101]

And then go fishing !!!!

Stay healthy

[Longterm101 in reply to Longterm101]

I forgot to add...

Take those supplements and fish !!! 😉😉😉😉

[Cynthgob]

Is it covered the same way lupron is covered? Medicare?