Received a 3 month Lupron injection last week. Can someone share how long it takes to feel the full effects of the medication ? I'm awaiting insurance approval for Xtandi but I should start this week. Will Xtandi make a big difference in how I feel ?
Lupron Question: Received a 3 month... - Advanced Prostate...
Lupron Question
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SoonerMark
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It took me two months. Xtandi does have side effects too. You could follow the Embark trial and get Xtandi without Lupron. This is more effective than Lupron alone.
Thank you GP24, I appreciate you sharing your experience.
Some of the symptoms come from the drug itself (on subsequent injections, not on the first), some are from the lack of testosterone.
Age can be a factor too.
From what I was able to see when attending a zoom group meeting about prostate cancer, the older men of 60's and more did not appear to feel any different following their 3-months injections. But some of those who were in their 40's and 50's, myself included (and glad to see that I was not alone), felt worse that the rest of the time for 3 to 6 weeks after each injection.
I just restarted ADT recently and this time around I am using Orgovyx. Initially I thought I was doing better than on Lupron and I guess I was since my only problem was feeling confused/drunk at around 14h00 or 15h00. But about a week later, many of the old booboos (pain in feet, not able to do as many reps at the gym, insomnia, ...) are already back even though I had almost 13 months without ADT.
At least I don't have hot flashes as I still take Norwegian Kelp every 2-3 days.
Best of luck to you!
Same for me and my age regarding lupron
I sympathize with you. I used to think the feeling worse after an injection was maybe all in my head because the general consensus usually said "The only side-effects come from the loss of testosterone". If the latter was true, I should not have felt worse for weeks following the injection since testosterone was absent 100% of the time.
Thankfully because of the zoom meeting I was able to spot the trends separating those who were going through the same thing as me and those who do not see any difference from the injection. Age was the critical difference.
In case it may benefit you, I'd like to let you know that I am now on Relugolix/Orgovyx and unlike was the case with Lupron, this time my side-effects seems to be mostly from the lack of testosterone. I am not completely floored as I used to be after a Lupron injection.
tell us more about Norwegian kelp please. What form, how much, when do you take it? Ty
What I take are capsules purchased on Amazon. The lable says Norwegian Kelp 600mg (providing 300mcg of iodine). I take a single capsule every 2-3 days now but when I began taking it I was taking it every day for a few weeks. I do not take it at a specific moment of the day and sometimes I take it with food, sometimes not.
My wife and sister, both menopaused, are also taking it for their own hot flushes. Worked for them as well.
Ty
You are welcome and best of luck to you
Thank you for the tip on kelp, I've ordered tablets from Amazon.
Me too
I started Lupron and Xtandi within weeks of each other, so it’s hard to separate out the effects. My sense is that the effects (intended and side effects) came on gradually over the first 3-4 months, grew/multiplied over time and peaked around 18 months. Not gonna lie: It sucked. But I feel like my (then) 58 year old body tolerated it better than many others and it seems to have worked as intended.
I also worked hard at the gym, on my diet, slept a lot, and gave myself a lot of grace to get through it. You will not be your old self, but it’s OK. You just have to get through it.
The Lupron side effects begin after 2-3 months and get more noticeable after that. The Xtandi will compound it. Fatigue especially. How much you feel it depends more on your fitness and strength habits than all other factors combined.
Whatever you’re doing for exercise, work harder if you can to stay ahead of it. On ADT, strength is lost and metabolism slows simultaneously, and it happens fast! Strong intervention is required to counter this.
Give fitness and strength your full attention and you will be fine. The alternative is something you absolutely don’t want!
libido left in 2 weeks. Hot flashes started slowly after that. Then the lethargy slowly set in where you don’t want to do anything. My weight never changed, but I’m sure some muscle was replaced with body fat as my pot belly seemed to get bigger. I was not told to increase exercise till a year later when my oncologist (of 30+ years) told me I would die of a heart attack instead of prostate cancer. I took up pickleball 2 years and that has made a huge difference in my attitude. I just started Orgovx 2 weeks ago. Libido gone, still waiting for hot flashes to return. My T dropped from 350 to 3 in just 2 weeks! My PSA dropped a bunch too!
You'll read a variety of reactions to Lupron. Everything from "eh, what's the big deal" to "oh, my god, I'm gonna die/kill myself." Each of us is different. And, our docs are just as variable in the help they offer. Mine? Not so much. There are probably hundreds of stories on this site about Lupron and its side effects. Take a look at them. You'll find that you're not alone, you will get through this, and that your life is going to change...no matter what you do or don't do. Unfortunately, for me, I had an awful reaction to it (well, actually, to its impact upon my T level) and its effects lasted longer that anticipated. I still have the wt and man boobs, and the genital shrinkage was/is a real treat! NOT. But, the sex drive did return and I think I probably fall in the "cured" category now (PSA 0.02-0.04 since 2018).
Good luck to you.
EdinBaltimore
I have had it 3 times and had porn star breasts. Had 3 plastic surgeries for gynecomastia
Oh man, sorry to hear that. I'm glad you were able to have surgery to help.
Does insurance pay for that?
Yes. It is a side effect of a prescribed medicine
EdinBmore is right, these meds effect everybody differently. Lupron took about a month to six weeks to knock me down but it was bearable. I did get used to it somewhat. Xtandi I took for 18 months and found it to be awful, combined with Lupron, so that I'd rather die than take it again. It gets into the brain, unlike most other drugs for prostate cancer. But again, some people take these meds including Xtandi and tolerate them OK. The only way to know for yourself is to just do it. I hope it goes well for you.
This feels like standing in the street waiting on a bus to run you over.
Lupron will save your life but be prepared for big changes….No energy, No Libido, Hot Flashes. A Vienna sausage and 2 pistachios for your private parts, 10-12 lbs around your middle that you can’t get rid of..,.There’s just gotta be a better way….
jmarsh• in reply to
Same here except my energy level is lower but not horrible - maybe down 20-25%
Nobody can answer those questions. Generally, the ADT medications take time to take effect and to wear off. Think about the alternative and that should give you motivation.
i know when my husband started Lupron/Zytiga his PSA reduced in just ovet a month. I did notice some memory issues associated with the Lupron (research as it does not affect everyone this way but is a potential side agfect). He has been taking combination of D3/K2 which seems to have lessened his memory issues. Hope all goes well!
Don't Know I was on Lupron 33 xtandi 16 month couple of hot flashes in the beginning my side effects were weight gain and muscle loss 64 yrs young.
Hi, Good questions! It seems to me that the impact of Lupron and Xtandi on how one feels is so individualistic that it's difficult to make generalizations. I've had Lupron injections every 90 days since 2019 when my Gleason 9 cancer spread to my low back. For me, the first several days after the injections are challenging, with muscle soreness, fatigue, very significant hot flashes, nausea, etc. After four or five days, I see pretty rapid improvement. Lupron reduced my PSA to undetectable in 90 days, for a few years. Then, my PSA climbed and scans revealed more tumors so the oncologist recommended Xtandi. I've been taking it for about 16 months along with continued Lupron shots. PSA levels fell initially, but now they are beginning to climb. Xtandi leaves me feeling mentally slowed, with some confusion and lack of energy. I don't like it, frankly, and now that my PSA is rising again perhaps I can be switched to a different medication. There is an alternative oral medication that has similar results to Xtandi without the mental status changes, but that one carries significant risk of making current coronary artery disease worse. Since I have some serious coronay artery disease issues, I've steered clear of this drug . I hope this helps! The major lesson is this: Lupron and Xtandi side effects are highly individualistic but they seem to work.
Mark, I too am 58. Been taking Lupron/Xtandi for 88 months, so long I don't remember how long it took. Just want to add that exercise is very important. You will lose muscle mass very quickly. Ive never stopped working out and I go hard. It helps so much in my daily life. Im certain that without all the resistance training and cardio I would not be able to do all the things I am able to do on a daily basis. JMHO
Peace
I am 79 and exercise with weights alone with walking both really made a huge difference for me. Walking controlled the weight and I have lost 15 pounds along with portion control.
I am off the Lupron and my T has returned to the 700 level like before the Lupron and boy do I feel great. Still exercise and walk. It has become a habit and the endorphins surge really feels great. I sleep like a baby but still have to pee twice a night but some of that I attribute to just my age.
PSA is holding steady at around .04. Looking forward to the big 80 in 2025.
I began Lupron last November. I was worried because I had heard terrible things about it. However, I am fortunate that I was well into herbs, supplements and exercise before I started. There are several herbs that support muscle and libido. I am taking glutathione, sulforaphane, horny goat weed, astragalus, pygeum africanum and several more herbs.
I found the transition to be surprisingly smooth. So, a couple of things: 1) you will have a mild increase in testosterone for the first 3 weeks. This is the time to romance your partner. 2) Between the performance enhancing herbs and exercise, I actually have more strength and stamina in weight lifting, biking and running - (didn't see that coming). Also, my PSA fell fast! (from 90 - 6.2 in 9 weeks! With the exercise, I can still function as a man (although it takes somewhat longer than before).
I'm only two months in on my first Lupron injection and a month in on Nubeqa, so I even hesitate to comment. I've had the same questions. So far some side effects have been obvious--substantial testicle shrinkage, hot flashes, some afternoon fatigue. I do have a hard time sleeping, but that's been a long-time challenge for me. The hot flashes just add to the mix!
After reading about various people's experiences, I've tried to shift my mindset a bit. I used to wake up every day and kind of wonder, "Is this the day, I'll .....?" I've tried to redirect some of that energy into some of the practices that have already been helpful for me--exercise, nutrition, writing, prayer, gratitude. I know that that this uphill climb will get a lot steeper, but so far I haven't lost any strength. A few things that I've done that I have found helpful is walking with a weighted vest just about every day. I'll walk with my wife who also has one. We get some funny looks and comments in the neighborhood, but that adds to the experience! I'll also try to plan at least one walk a week with somebody else. It adds to the accountability. The ADT hasn't taken away all my competitive juices. I've also started incorporating some breathing exercises, mobility work, nerve glides, vestibular drills and some other crazy stuff that seems to give me more energy. I also take 5mg creatine monohydrate every day and drink some Re-Lyte hydration stuff after my walks. Playing pickle ball has also helped me to escape thinking about cancer for at least a few hours. I'm experimenting with sauna and cold plunges too.
I'm 54 and like everybody else am fighting for as many good years as I can get. Looking forward to anything people have done that's been helpful to mitigate side effects. As much as I appreciate all the studies and trials--where would we be without them!--I really value the personal experiences and practices guys have found to be helpful. You can't do a randomized controlled trial on everything!
I initially had Lupron, which brought my PSA down but with horrible side effects. I then tried a monotherapy of Darolutamide (similar to Xtandi) which worked well for 8 months, hardly any side effects. When my Psa started to creep up, I switched to Orgovyx and Nubeqa, which is working fairly well. It does remove libido pretty thoroughly, but with less severity over Lupron.
I received my second 90-day Lupron injection yesterday. I was concerned that my side effects from Lupron would suddenly intensify, and I asked my oncology nurse if I would feel the effects immediately and then have them taper off over time, or what?
She said that it is called "Lupron Depot" for a reason, that Lupron is sort of "deposited" into your system to slowly and steadily release over the 90 days. She said I would notice no difference in the intensity of my current side effects, such as hot flashes and low energy. So far, so good.
How long does it take to feel the effects? Depends on who takes it.........
Good Luck, Good Health and Good Humor.
j-o-h-n
You always bring a light hearted response, thank you.
Age 63. three weeks after the injection my testosterone was undetectable. Starting having hot flashes and fatigue.
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