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No Lupron side effects after 2 months

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Posted 1/10/2019 3:48 PM (GMT 0)
Leading up to my first Lupron shot in November I was scared out of my wits and extremely anxious about the possible SE I had heard and read about from books, online, and those who personally experience them. It has been almost 2 months since my first of two, 3-month injections and, so far, I feel no side effects. I am grateful and relieved. My RO and urologist's nurse tell me that if I made it this far without SE, I likely will not experience any moving forward. Is that true from your collective experiences? If so, I want others who read this forum to know that it is definitely possible to not feel SE from Lupron.

Further, the Lupron has been effective: I dropped from a .34 PSA to a .07.

I begin my SRT treatments on 1/22. 40 treatments to the full pelvis, with the hope that any cancer that might be in my lymph nodes will also be eradicated (I showed LVI in my post-operative pathology). I am hoping and praying for a cure and the same for others (or their loved ones) on this forum who are battling this terrible disease as well.

I will keep you posted on my progress.

Paul
Posted 1/10/2019 5:15 PM (GMT 0)
We do like good news. Nevertheless, I suggest that you ask for a testosterone test to make sure the Lupron is 'working'. Furthermore, I predict that you will encounter some side effects at some point. They are to be expected due to the low testosterone levels. But whatever you are doing, keep doing it (exercise, etc.).
Posted 1/10/2019 5:19 PM (GMT 0)
that's great! I think you will feel side effects but maybe they won't be too harsh. from my experience and what I've observed with Lupron there's such a relief in the beginning that we think we may be the exception.
Posted 1/10/2019 5:20 PM (GMT 0)
good news so far.

The RT is an endurance test, but you'll get there. Long slow process.

Keep us updated.
Andrew
Posted 1/10/2019 5:32 PM (GMT 0)
<<<My RO and urologist's nurse tell me that if I made it this far without SE, I likely will not experience any moving forward. Is that true from your collective experiences?>>>

So far for you, so good. Unfortunately I believe, based on my research and the many experiences here, that your nurse is being overly optimistic. Not unusual. With a little luck, any S.E. you have will be mild and of short duration.

Hang in there!
Posted 1/10/2019 6:36 PM (GMT 0)
I agree that it is prudent to test the T levels, but the initial drop in PSA is indicative of the ADT working. Remember, side effects are very individual based. That yours have been minimal, be thankful. That may change, no one can know for sure and predict what will happen.
Posted 1/10/2019 7:32 PM (GMT 0)
I've been on Firmagon (Degarelix) since May. Different drug but same effect as Lupron - suppresses T and lack of T suppresses PSA. My T has been <3 since a month after my first shot. I've had no hot flashes, fatigue or other side effects other than just possibly some increase in knee and hip aches - though that might just be due to age. Even though most here report SEs there are statistical outliers like me. With luck you may be one of the lucky few.
Jim
Posted 1/10/2019 8:06 PM (GMT 0)
Paul,

I'm hopeful that you will manage to miss out on most of the more disagreeable side effects, especially since you've made it this far without running into them. If I read your signature right you are only doing six months of ADT. Most of the more bothersome side effects are cumulative and just about the time they start to kick in it will all be over. Six months is easy time.
Posted 1/10/2019 9:27 PM (GMT 0)
Paul, my side effects started in a small way at about 6-8 weeks out. But they have been rather mild overall.
I hope you stay on the easy road,
Posted 1/10/2019 10:18 PM (GMT 0)
Hi Motown - We're on similar schedules. I started Lupron in November and began EBRT at the end of December, also to the whole pelvic bed and lymph nodes. I didn't notice many side effects from the Lupron alone, although it quickly dropped my PSA from 4 to 0.37. I started Zytiga about a month later and it feels like to really took my T to zero (although I don't have labs to confirm) and I'm hoping for a very low PSA in my next test.

Side effects haven't been too bad, a few hot flashes and more tired towards end of day. Still, I'm keeping up the workouts (surfing mainly) and find that I feel a lot better afterwards. Hope things continue to go well for you.
Posted 1/11/2019 12:43 AM (GMT 0)
ADT side effects can vary from person to person. But often it is so much hyped up that some people try to avoid ADT even though it can be essential for their treatment. I have been on ADT for nine months with my cyberknife treatment in 2017 for an extra-capsular recurrence. Now because of lymph node metastases I am on ADT indefinitely. During my treatment in 2016-2017 I had many episodes of hot flashes and general fatigue. This time I am having hot flashes. I wouldn't call it intolerable. I would be happy if my metastatic cancer keeps responding to ADT.
Posted 1/11/2019 6:27 PM (GMT 0)
MotownPaul,

One thing that having prostate cancer has taught me is reaction to procedures, drugs, treatments can be very different from one person to another. You may have ADT SE later on that may be minor but I believe you will have still have some sort of SE before your 6 months is over.

Had my first 3 month shot mid Sept/18 and was very active after mid Nov/18 with very little reaction to the Lupron. Early December, I noticed that I could not climb the hills CC skiing as easily as when starting in early November. Libido was dropping at this time, hot flashes a minor night time experience but generally, my regular personality did not change. Now close to 4 months into treatment, I haven't gained weight but I have lost a lot of muscle and replaced it with fat around the belly. I definately have slowed down on rigerous activities even though I try to stay as active as possible..

Hopefully, your future situation with ADT will be nothing more than a minor disrution on your life. Let us know in a few months time what SE the Lupron has had on you.

Dave
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