Newbie here. Dx july 2019, G7. Radiation June-august 2020. 18 months on Eligard, and I’m past ready to get off if the ride. At this juncture, I have at least 2 questions (likely already covered, but could not find thread.)
1. Is there a format to express staging/treatments?
2, what will I gain by continuing Eligard.
Thanks. Peace. Prayers.
Could you provide more details about your staging at diagnosis? How long did your doctor suggest staying on Eligard?
Thank you all. Pirads 5, G7 4+3 in 11 of 12 cores. Highest PSA was 40.5. I think I read T2c, N0M0. IMRT completed 12 months ago. Eligard was suggested for 24 months. Currently PSA and testosterone are both undetectable. Will 6 more months be the difference between being “cured”?
Please accept apologies for posting on this metastatic board. I find all of you to be helpful to others. Thank you
I don't think the evidence is there to support the benefits of an additional 6 months. But I would do it even if there was any chance that it could make a difference in part because if things did take a turn for the worse, I wouldn't want to be thinking later "Maybe if I had ..." That's why I did the optional early chemotherapy although that benefit has been proven in clinical trials. That's me though and I realize others look at things dfferently. I've been on Eligard for 4 years already so that effects my opinion. If I was only looking at 6 more months I'd be happy, but that's me.
You will gain weight by continuing eligard.
Already did. That 20 pounds, can’t shake it.
That's typical. I told my doctor "I'd like to lose some weight." He said "It wouldn't hurt" Then he said, "But it's going to be difficult being on Eligard". I'm not sure I'll ever lose all the weight I gained on Eligard.
1. We use the AJCC TNM system for staging:
prostatecancer.news/2017/03...
It also is common to use the NCCN risk categories (on p.28):
nccn.org/patients/guideline...
2. If you were N0M0 (see staging, above), 18 months of adjuvant ADT is all you need. A trial found that for high risk PC, 18 months of ADT are equal to 3 years.
sciencedirect.com/science/a...
You may also find more peers on the other Malecare forum than on this advanced PC forum:
healthunlocked.com/prostate...
Thank you kind Sir. I’m hoping this is the science behind my decision to stop Eligard now instead of sticking it out for 6 more months. You are a gem.
Welcome Cheez. Consider yourself lucky to have caught this at a 7 .. I was an 8 but t-4 meaning my prostate exploded pc tumors throughout my pelvis blocking bladder causing k failure. Thus I had tubes out of my kidneys and a foley for almost two years
Non-op so Idid Lupron and a test adt drug along with 8 weeks of IMRt . The adt and imrt shrank the tumors allowing me to pee again. You don’t ever want to go there. And you won’t. It worked. I was given a 50/50 chance to survive it. I got hit hard by every side effect of adt . I’ve had 3 t and no PSA for over five years now. I did one monthly shot of firmagon . It took my PSA down . Then I moved to Lupron then chopped the balls to stop the Lupron shots . I’m still
Taking 4 little pink pills a day to stop adrenal production of t… I couldn’t lift more than ten lbs until I got those tubes out. I lost all muscle and bones and went in to osteopenia . Now my joints are rapidly depleting into pain . So do weight bearing if you can . Protect yourself from osteo and cardio issues by diet nutrients and exercise. You don’t want to beat p cancer then let your heart and joints give out . How old are you? I’m 60 with over six years in .
APC is a long winded sob .. we carry this to the end , no cure for stage 4. Some guys have gone decades past much worse dx es than yours. Love life and I know adt sucks . Six years on that train.
In 2003, I was a Gleason 7, PSA 6.8. Had Brachytherapy and 25 sessions of IMRT. In 2004, with a PSA of 32.4, I was metastatic. I could share what I did, however, it would not mean anything at your stage.
Recommend that you continue to have at least quarterly PSA test to closely monitor. I would also enter into a discuss about micro-metastasis with your Radiation Oncologist.
Other than that, enjoy life.
GD
Mike,I just read your bio. 18 years. We all can learn from you Jedi Masters. Check out JoeyMs bio. Difficult to follow or see any clear trends, yet there must be trends.
Best,
Mike K
(Spyder54)
Mike, no Jedi Master here...... just common sense and an avoidance of “Internet doctors”.
My journey has been vastly different; some immediately say, antidotal.... when I received the news of metastatic lesions, my first RO (Brachytherapy) immediately injected a Lupron and a script for Casodex. He went on to explain SOC and that any physician could prescribe Lupron; saving me a 400 miles round trip. I listened then asked my guy if he were in my shoes, what would he do. After a pause, “I would find the best damn MO available who specialized in PCa; not any MO who treats other cancers. I would want someone on top of their game; well versed.” Do you know one I asked. His reply was that he did not.
The next week I was with my another RO (IMRT). Same scenario but this guy being in academia and research replied that he did know someone and he would call. The next day I entered the the world of academia and research for metastatic prostate cancer and clinical trials. The rest is history.
First, I recognize that I was most fortunate and that the vast majority do not have the access that I had and do not have the opportunity to be a guinea pig. Second, when my peers questioned my path, I just smiled, but damn it given a prognosis of 2 to 4, maybe 5 years, I was not going down without a fight. In reflection, the 5 or 6 guys who I knew took shortcuts and did not follow the MO’s instructions because a medication made them sick and they stopped an oral, are all pushing daisies. If nausea and vomiting medication did not work, I changed medications. Consequently, I lived on Zofran for six months. I took heed that the poison infused in my body was killing thousands of the little bastards.
To me, early treatment for metastatic prostate cancer while the body is strong are keys. It did not work for everyone and that has more to do with scope of disease and a weakened body. I could not worry about side effects as most could be overcome. Most of all a shun of “why me” attitude.
I am here because the Good Lord was not ready for me and an outstanding medical team stood for me. I turned down the job that was a life long dream because it would involve a 1100 mile move. I had friends and acquaintances from all religions and cultures across the world asking if they could Pray for me. I turned nothing down and was thankful that they cared.
There are several men in this group who have successful long-term journeys. I honor their commitment. Reminds me of when I taught Leading Change in many seminars.......
Best of luck in killing the little bastards.
GD
GD, Thank you for that. I have asked 2 other Jedi Masters a similar question. We can learn much by being good listeners. It is an art. Amazing how different each of the 20 year stories go, and how each of you made it this far.
A few similarities are ….Centers of Excellence, Faith, Love of life, Being early, and aggressive with treatments while we are strongest.
I will keep listening. I strongly believe we are closer than ever to Cure. I actually believe that we may find it here first, as we are patients and know the actual vs perceived effects of treatments.
Really appreciate you sharing.
Here is to another 18 years GD,
My best to you and yours,
Mike K
St Pete
As you can see from the comments here, there is no evidence that 24 months is superior to 18 for men with N0M0 in terms of OS. There are probably studied in the works that will eventually resolve this one way or the other, but it's clear that the difference, if there is one, is extremely small.
Let's suppose there is a slight advantage to 24 months in OS. Would that represent a compelling reason to subject the patient to the additional 6 months? Doctors would certainly say so, but that's because, in my experience, they really don't care that they're talking to a patient who may be miserable beyond description.
To me, it's incomprehensible that a person--any person--with a license to practice medicine is unwilling to have a conversation that goes like this: "It's unclear if more ADT will help you. But since you wish you were morally justified to blow your brains out, we'll be discontinuing this treatment immediately."
This is precisely where I had to go with my MO to get him to stop talking me into more ADT.
Bicalutamide and Eligard
ADT...Eligard vs. Degarelix?
Orgovox your experience with this
Has anyone seen testosterone rise on xtandi while still on lupron?
Orgovyx dosage when on Erleada
