I’ve had Lupron injections twice so far, once in April 2020 and a second time in early Jan 2021.
My side-effects are not uncommon in themselves, but I am surprised to notice that they differ wildly from one shot to the next.
The side-effects that I’ve experienced across both injections are loss of libido and lack of energy.
For my first injection, my side-effects were very severe brain fog, finding it impossible to do a full day without taking a nap in the afternoon, pain and fatigue in the middle of my back, being emotional on the teary side of things and alternating between freezing and hot flushes at any time.
For my second injection, all I’ve got is just a touch of brain fog, hot flushes on some nights, insomnia on some nights and I am easily irritated/angered.
So I am having a much easier time of it the second time around but I do not understand what that means. Is it less effective somehow?
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Mascouche
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You are 100% correct about exercise being good against fatigue. I already exercise about 1 hour per day. I still experience fatigue and would be ready to go to bed at 6pm if I did not push through it until at least 8pm but I am certain that it would be worse if I did not exercise. I am still a shadow of myself as I had much more stamina when I had access to my testosterone but at least I can see myself living in my current state for a while provided it doesn't get much worse once I add Zytiga to the mix. But then again, if I can offset some of that with an estradiol patch then all should be good.
The first shot usually hits you hardest. I have taken 8 three monthly shot so far. I still have regular hot flushes but I have learned to ignore them. Emotional swing can be very random. For me, even a small incident can bring me to tears for no reason.
I would get tears the first time around but now I find myself snapping at my family and that is not like me and they have made me realize that.
If every subsequent injection only gives me side effects that are the same as what I have got now, then doing two years on Lupron is conceivable. However I have yet to start a second line adt (Zitiga) so we'll see how I feel when that begins. I'm meeting with my oncologist in 2 weeks to review my scans from 2 weeks ago.
When you do start Zytiga, please post any change in side effects that you detect. I and many others started Lupron/Eligard and Zytiga almost simultaneously. So we are unable to discern which side effects are associated with Lupron/Eligard, which are associated with Zytiga+prednisone, and which are simply associated with testosterone production cessation. While your experience report will be more anecdotal than scientific, it will be interesting for me to read.
Will do. Anyone has any idea on whether Zytiga+prednisone side-effects are felt immediately or whether they come after X number of days/weeks? Just asking so I know how long to wait so I can safely say if I feel any different or if the Zytiga side-effects won't have had a chance to kick-in.
I'd take laughter over sadness or anger any time. Laughter is supposed to boost your immune system while the others are negative emotions. Of course, if you are having an uncontrollable fit of laughter while attending someone's funeral, it could create an awkward situation.
I have been 3 years just hot flases but taking arbitrone and the hot flashes are more intense especially when I am in a warm area and more of them. I too tried ant depressants but after 5 days I lost my appetite and had headaches with nausea so stopped them. I can live the hot flashes, let's me know I am still here and it is a ongoing joke where I work. My emotions are more intense, choked up when I see things on tv.
I exercise about an hour a day, usually between 11h00 and 12h00 to break my work day in two. I begin with the Wim Hof method (breathing techniques, back and legs stretching, pushups with no air in lungs, reversal with legs in the air,...) 10 minutes on the vibrating platform at 80% of max intensity alternating between doing squats and pushups on it. 10 minutes of running on the treadmill. 10 minutes on the heavy bag. 50 sit-ups. 5 minutes on the bouncer. Ending it all with a shower where I put it fully on cold for the last 30 seconds which is quite invigorating.
Sounds good, although some of it is not familiar to me so I can’t really know. Is your weight under control? Diet good? Any health issues? I’m looking for clues.
Also, why 9 months between the shots? Only 2 total?
Consistently good diet and exercise habits usually mitigate the ADT side effects very effectively, though not always.
I would check my testosterone frequently if inconsistencies continue.
I have a good BMI as I am 5'8" and 155lbs. I eat mostly WFPB with the occasional fish or mussels. So other than cancer, I am quite healthy.
The 9 months between the shots is because those are 4 months long shots and when I was due for the second shot last August, I opted not to in order to try other things since the side-effects of the first shot were bad enough to put my job on the line as I found myself unable to perform as a developer.
Since my PSA starting climbing as Lupron exited my body, I did try Casodex 150mg near the end of 2020. It was not bad at 50mg but once I hit 150, I lost a lot of weight rapidly (went down from 160 to 147) and bad enough side effect that I was at the hospital 2 days after Christmas. And to top it all, the side effects weren't worth it as my PSA rose from 4 to 59 during the last quarter of 2020.
So I opted to go back on Lupron but I did not expect that my experience would be so much better the second time around. It still isn't fun for sure but at least I am able to do adequate work this time around. Hopefully that will continue and I won't end up having different side-effects on every injection.
I've had one Lupron injection in June and one in September, and then Eligard in December, three months apart. Will start the daily pill form Orgavyx in March. I have had adt injections with Xtandi pills, four per day, which I will continue with the daily adt pill . Lupron and Xtandi so far works like a charm lowering my T very low (3), reducing my metastases and PSA <0.1), and of course cutting libido with no other significant side effects. However, lately I had some tearing which might be a side effect, I hadn't thought of it until you mentioned it. I had a few thoughts.
First is that there could be a bigger side effect from a six month dose than from a three month dose. It must be bigger to last six months., I have no idea how a dose can last so long, but six months is a long time so it must be at least twice as much drug as a three month dose. You might benefit by switching to the smaller three-month vaccination. Even better, switch to the daily pill Orgavyx form which just became available in January, and might be much less drug per intake into your system. That could be much lower side effect because much less daily intake. Somehow the longer term injections must gradually wear off, and put more drug into the body at first, less later. I have no idea how it is regulated. I would think more activity might cause more of the drug to get into the bloodstream?
Secondly, I know someone who has had anger fits or snap fits and I worry it might be caused by alzheimers anger fits. The person normally is pretty cool but for some unknown reason gets outwardly intensely and unreasonably angry over small things. Just a thought, it might be caused by early stage Alzheimers rather than a drug reaction. So that could be totally unrelated to the adt, whether due to some drug, supplement, or who knows what?
I personally am taking an anti-seizure drug and I suppose any kind of fiddling around with neurons could affect emotions. I mean that could be more likely than adt. When we start getting a bunch of drugs into our systems we have to expect some affects on our brains including emotions and/or heat flashes, brain fog, or anger fits. We cannot de-inject or uninject. Add to that the Covid injection. So side effects seem "necessarily so".
p.s. I think it is okay to get choked up over the invasion of the U.S. Capitol.
It must be difficult to determine if a symptom is due to Alzheimer or not when taking ADT since brain fog, forgetfulness, emotional changes can be induced by both. Since I am only 52 and the only family member that I know had dementia at age 88 (my grandma), I think the Lupron or maybe the Lupron/Concerta combo are likelier cultprits for my being snappish of late. I do find myself saying "Sorry, you know I am not angry with you" fairly often but my wife and kids are supportive and they understand the situation.
I don't think you will be permitted by your insurance company to take abiraterone with Orgovyx. Phase 3 on Orgovyx had it all by itself. They are now running a 1 year trial with Orgovyx and abi. I am on Firmagon, shots every 28 days, and the plan was to go on Orgovyx. My MO checked, and insurance would not pay for it. Oh well, maybe at the end of the 1 year trial, next winter, I can take Orgovyx and abi.
Is the insurance covering the enzi also? And your doctor goes along with this although Orgovyx is not approved for use with adjuvants? I wish mine would. Are you in the USA?
Yes, although I have copaid only $25/month for the enzalutimide(Xtandi), insurance has covered the rest. I'm in SF Bay Area California. Note that I am taking the Xtandi with Lupron or Eligard through February, changing to Orgovyx in lieu of Lupron/Elidard eaarly March. I will inquire asap whether I will continue the Xtandi. You raise a good question.
The amount of drug injected is exactly double for the 6 month shot vs the 3. I took the 1month shots for several months, and the additional side effects were not bad at all.
But being told I will be on ADT for life, at age 51, I decided for Orchiectomy. I am glad I chose it vs continued shots, the additional side effects of more chemicals in my body.
Hi CSHobie, I understand your decision and might be making the same if I knew without a doubt that it would be for life but I wonder how one can know for sure. If your cancer turns castration resistant or if it because neuroendocrinal, then is there a to be on ADT or castrated versus letting testosterone back into your body?
Also, since you've been both on ADT and are now castrated, how do the side-effects compare on both sides of it?
I've been told that side-effects are not due to the drug but that they are related to not being able to tap into your testosterone so shouldn't they be the same?
Hi Mascouche, I wish there was a huge difference night and day, but it is very subtle.
I would say brain fog lifted a lot, my mood is much better. My penis is MUCH more alive again. With the shots it was shrinking and felt totally lifeless. Now it is not shrinking anymore, blood flow looks very good, more full, not shrunken. I can get a semi erection again. I still use Caverject for sex, I have not tried Viagra again.
The main benefits, if any still remain to be seen. According to reports, men who had Orchiectomy vs shots, have a lower chance of bone fractures, and cardiovascular problems, and dementia , if I remember correctly. We'll see what happens.
Unfortunately, for guys on long term shots who think their T will come back again when they go off injections, it won't.
After several months on injections, it will take years for your T to come back. It is about the same as me, we both will need T patches or T injections, to get our T back to good levels.
Would strongly suggest you try using an estradiol patch similar to Vivelle Dot or the generic Dotti, 0.10 mg/day changed every 2 to 4 days. You will likely feel much better with emotions, brain fog, energy and hot flashes. And it will protect your bones. Ask your MO for a trial and see.
I asked my MO and he shut me down rapidly by saying that he would never authorize that. I'll try again when I next meet him on Feb 23 but he rejects that once again, I'll probably try to ask my GP if she'd be willing prescribe me those patches.
I've gone through 2 urologists and a radio oncologist before starting with my current oncologist last July. My second urologist seemed like he could be good but I only met him once and he referred me to a radio oncologist because he said he couldn't do anything for me. My first urologist and my radio-oncologist were either liars or incompetents and I just did not feel like I could trust them with my health. My current oncologist is fresh out of school and truly seems to be honest and to mean well but I think his hands might be tied by hospital rules or something like that.
Just want to provide a few examples of what I meant by my not trusting some of my doctors... My first urologist kept insisting that cancer treatment is the same for every country on earth which is total bullshit since not only does it vary across countries but it even varies within my own country. For example you can get Vitamin C injections in Ontario but you cannot in Quebec though both are in Canada. In the case of my radio-oncologist, he would one day say that PSA is super-important (when my PSA was at 116) and then a couple weeks later he'd day that PSA doesn't matter (when my PSA was at 1.9). After my very first scan, he'd say that my cancer is progressing very fast. How the hell could he say that from a single scan. In order to know if something is progressing fast, you'd need to measure at least two scans so you've got something to compare. With a single scan, you can say cancer is found here or there but how can you say that it is spreading fast when you do not know if your patient has had cancer for 6 months or if he's had it for 10 years already? I could not trust a doctor that changed his story all the time and made conclusions that weren't based on tangible evidence. I am much more thorough that that even when doing data/financial/stats analysis so imagine when we're talking about something as important as my health...
Mateo, thanks for the post, I looked into it and it seems that a small dose may be useful for bones, muscle and fog. These are very important for sure. I will talk to my Dr.
I was at a new MO on Friday, and he specializes in bones, but he did not mention patches at all, but he did mention Bisphosphonates as a possibility. This is one of the Specialists that wrote the Ontario Provincial guide on PCa Bone mets.
I've been on Eligard injection for about three years now and it unfortunately won't get much better. I still have all the familiar side effects and many more. Leo
I did get better on the second injection when compared to the first one. Hoping it lasts with future injection and also hoping it doesn't get much worse with eventual 2nd line ADT.
I am sorry that things got worse over time for you Leo. Have you tried things like exercise or estradiol patches to see if they made your quality of life better?
I am now realizing staying active is not enough. It is too vague, and the activity might not target the right muscle groups.
Go to a Physiotherapist and get exercises that keep your core muscles good. This is what I am realizing now, my activities were not effective in strengthening my spine.
I've had those and the hot flashes, but my injections are once a month, and I'm undergoing taxotere every three weeks, so it's hard for me to tell what is connected to what. I have Urinary Incontinence and my penis shrinks right after the Lupron shot. Plus I had an RP. Low energy and I'm cold a lot but weather here is below zero for last two weeks.
As far as emotions, mine tend to the anger side, mostly when driving, ( does covid make people drive more erratically?) and it's disturbing to me. Usually I'm pretty calm.
I'm hoping my energy level gets a bit better as spring comes on and I can fit in walks and exercise and enjoy yard work and riding my motorcycles and tinkering on the older ones.
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