Hi;
I'm 72 had 28 rounds of Radiation, Gleason score 9 ( 4&5) and on Lupron since Sept 2018 and PSA is 0.07 now and contained to gland only...Does anyone have thoughts of 12 months Lupron then stopping and lets watch PSA or is that too soon ??? Is it harmful to stop and start if need be ???..My T level is 15 and have very little energy..
Thank You...
18 months are the lower limit for the duration of the ADT:
ncbi.nlm.nih.gov/pubmed/299...
Thank You , great info..
If you don't have any known mets outside the prostate and a low PSA I would think you are a candidate for intermittent ADT. I'm not a doctor, it just seems feasable to me. If you do it, I would test PSA monthly at least initially. Watch the number and doubling time. It's not a permanent decision, you can always go back on it if necessary.
Something to talk to your doctor about, but it's really your decision.
Thank you, will talk to Dr. again
This is adjuvant ADT which shall give the radiated cells an additional hit to improve the result of the radiation. Therefore you should not do intermittent ADT in this case.
No one can advise you correctly because treatment guidance comes from large-population studies that may or may not apply to you. Yes, the studies point to "18 months" as an emerging "standard of care." It is not a rule; it is a recommendation based on sound scientific research. You have to decide for yourself and you have to live with the good/bad/neutral effects of your decision. AND as gregg57 has pointed out, you can change your mind depending on how your body responds. I think it is important to remember that the oncologists do not have to live with the effects of the treatments they recommend.
Thank you and agree 100%
If Lupron is still working, my advice is don't stop. At this point you could run the risk of becoming castrate resistant.
Hard decision will think about your reply, thanks
I agree with GP24. You are going for a cure. You are definitely not a candidate for intermittent ADT. Stopping and restarting may cause resistant strains to predominate.
If the biggest problem is energy, are you exercising (I know it's the last thing you feel like doing)?
Only exercise is Golf and chasing my grandchildren...I think your correct about stopping and starting..
Thanks
Exercise is a good medicine for people on ADT. I am on Bicalutamide and Lupron for the last six months for my metastatic cancer. I have hot flushes. I am angry. I am frustrated. I don't feel like going to the gym. But I force myself to workout three to four times a week. And I am over 78.
Thanks dac500 , hang in there ...I will try more exercise.
I stayed on Lupron for 6 1/2 years and now I have no more cancer for 1 year now. Lupron keeps your prostate cancer cells from sub-dividing and forming new and younger cells. One cancer cell forms two cancer cells without Lupron or some other ADT. The side effects of Lupron went away after the first year and I did not want to go through that again. I checked ALL my lab tests for anything that was below normal. I found my B-12, hemoglobin (RBC count) were low and my Potassium level was high. It turns out that I have kidney disease as well. So now I have erthropoetin shots (Procrit) and my hemoglobin is normal again and so is my energy. I used B-12 tablets from the health food store under the tongue and I felt better. My B-12 is normal now so I stopped the tablets. I changed my diet and my Potassium came down to normal levels. My vitamin D 3 was very low from radiation and I am on a prescription of 50,000 units twice a week to rebuild the storage of vitamin D 3 in my body. (I was taking 2000 units daily wile I was on Lupron). I was snoring with sleep apnea and now I use a CPAP mask and now my oxygen levels are 97% when I wake up. If I take a nap in the afternoon I use my mask and feel great when I get up. I go to church twice a week and have a group that prays for me and listens to me spiritually. I am a member of 12-step programs and sponsor two men in the program. When I need sleep I take a nap. So look at ALL your lab tests and ask your doctor what you can do to change the results. Recently I have gone on a vegan diet with egg whites for breakfast and occasionally grilled fish if I go out to eat. The diet makes me feel better as well, I don't feel full and sluggish. I eat plenty of food and I am loosing weight! I don't eat packaged foods or canned foods. So above everything else just remember to just keep truckin'.
Glad to hear your doing well and cancer free for over 1 year now, hope it stays that way forever...your very lucky side effects went away.
Thanks for your input and stay well.
You can try anytime i guess. The question is if your psa and disease will stay at bay. Mine did not after 2 years i stoped and psa went up 4 points in 6 months. Its lupron for life for me . Plus the other junk.
Sorry to hear your numbers shot up, hang in there ...
Thanks for info....
What does your Medical Oncologist say? With a 4+5, I would like that you have systemic disease. Until you have additional treatment, Lupron is the only thing keeping your disease at bay. If your MO agrees with this statement, stay on it. If he does not, then stop. However, as someone who was metastatic in 2004, I think that you PSA and T will rise dramatically.
As far as no energy, you have a debilitating disease, reduce the hours of activity, rest in between periods of activity knowing that it will take you much l8nger to recover. For example, mow the yard, then hydrate and rest a couple of hours; same with golfer any other physical activity.
This is an excellent topic to discuss with your pro. Good luck and kill the little bastards.
Gourd Dancer
Will do, kill the little bastards now that's positive thinking...
None of my Doctors are recommending any other course now other than Lupron..I hope that's a good sign.
Thanks for your input , take care..
You're getting a good range of patient experience and guidance here. Note no two guys are alike in this disease and especially Lupron response.
1) If you haven't had Genetic Counseling and testing (now Std of Care for your Dx #s,) its highly encouraged.
2) Just for (not much) fun, look back at your likelihood of capsular escape at diagnosis relative to (thousands of) guys that had your numbers and chose surgery instead of (as me) purely radiation and ADT. mskcc.org/nomograms/prostate The numbers for ECE, positive margins and cancer in lymph nodes there are actual pathology reports from carved-out tissue from their surgeries. The numbers are sobering. (~90% in my GS8, PSA 16 Bx/Dx case--perhaps higher with your numbers.) Only value here is education of what we're likely fighting--"containment in capsule" is a pretty lean probability with high and very high grade PCa pre-treatment.
3) Radiation and ADT are synergistic. ADT helps radiation work. Rad benefits take time, even years (like 2) to fully impact/kill bad/targeted cancer cells. [As do side effects, BTW--as in 'the gift that keeps on giving.']
4) Lupron has side effect momentum even after stopping official treatment. Took me 6-9 months to START feeling human again. Tho some guys (small percentage) say they have no or very low side effects. FWIW, not me: I was a 'hyper-responder'. I felt stupified, near lifeless and totally libido-less by 4-5 months in---then it got worse. I didn't much care if the sun came up at all. Looking back, I literally can't remember 2016. I lost 19% bone density and didn't even know to get it tested. You only take Lupron to save your life (my bottom line,) NOT your quality of life.
I was told Lupron for life (2015 Stanford MedOnc), then 3 years=OK (Scripps early 2016,) then 18 month OK (/'non-inferior' to 36 months) per a just (then) released Canadian study. NOW guys are getting 'half dose' Lupron & 6-12 months (depends on which MedOnc/RadOnc you talk to.) MD 'consensus' is fuzzy at best. Act on no single trial (or MD guidance, my personal experience & encouragement.) Consult multiple MDs and study proportional to your interest in your life-expectancy and QOL hopes. KNOW that only YOU can decide the course of your life--until and if you give up your right to decide to ANYONE else. MD's are great guides with varying degrees of expertise, opinions and experience.
I bailed out of Lupron at 16 months. A decision I do NOT regret. Your Tx decisions are YOURS after the best MD guidance you can get (I'm an engineer, NOT an MD.) Don't read this as a recommendation--it's just one man's experience. Your mileage WILL vary.
Your T and PSA # and speed of decline are good, not 'ideal'. I was blessed with T in low single digits and PSA <0.01 within 8 months of ADT start (which was a big factor in my decision to stop.) Monthly PSA checks are smart to know your real nadirs and timing.
Find "centers of excellence" for best MD's vs local 'retail' urologists (nice, well meaning people, but living/practicing a decade or more behind latest medical knowledge in MANY cases.) It is YOUR life.
Good luck and (please!) find a support group of guys that have experience ahead of you. I've got now over 200 guys (best friends!) in different groups I've met and listened to--a LOT. We can't look back, but I really wish I'd been smart enough to know those guys 5 years ago...
Thank you so much for this informative information and sharing your journey with me and others...I have a lot to think about and you really have helped me to consider what's best for me and get informed more...the support group sounds like a great idea...and I think it will help..
When you bailed on Lupron was it replaced with another med or hormone drug ??
Thanks again, glad your doing well and take care..
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