Lately I’ve been kinda agitated and down ... grouchy. Feeling a generalized light on specific abdominal discomfort... stuff neck .... light headaches . Seemed to sorta creep up on my slowly. Just plain unpleasant .... didn’t know why.
This morning I got my 5th three month lupron injection ( buttocks ) .... came home ,had a snack and fell asleep. I woke a couple hours later and “ now “ I feel like a new person suddenly. Discomfort totally gone ... neck fine .... headache gone ...dramatic attitude lift. WTF .... does Lupron have a withdrawal component ? Has anyone else here noticed that or has someone slipped me a Mickey ? Yayahahahaya whatever I feel great all of a sudden .... wow ...nice holiday timing if it is. Your thoughts ?
Peace brothers ✌️
Dunno what’s with this editor..several typos above but won’t let me fix ‘em. Stuff neck = stiff neck ..light on = light non ...
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Kaliber
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Yea tried that ... it’ll let me add on but not place my cursor back up in the text. Using a iPad. Weird .. I can edit my replies to other people’s posts ...dunno.
I get Lupron and Xtandi together and from the very first the debilitating side effects have been life changing for me. Big boobs, shriveled genitals severe hot flashes ... chills , the works. Most of the time I’m fighting to stay out of a wheelchair. Can’t walk across the street without huffing and puffing out of breath ... talked about it with my oncologist... about 30% - 40% of patients experience the same thing as me he says .. the rest some variation.
This is about when the Lupron part wears off ... Getting more used to it all now and able to notice the subtitle changes. I still feel great ...all the “ withdrawal like “ stuff mentioned above still gone. As long as I get my “ fix “ I’m more than good with it .... considering that I’d be dead by now without it. ( initial psa 1400 , blood work grim, half of first oncologist visit spent with hospice crew ) . I just wondered if others thought they experienced a seemingly withdrawal type event when time is near to re-up their Lupron. Clearly you don’t feel a withdrawal event ... it’s interesting stuff.
1400.00 initial PSA. I’m trying to evade or avoid or sidestep or jump over those same SE’s. I’m on my 2 90 day Lupron and day 7 of 1st in my lifetime abiraterone 250mg. Only minor hot 🥵 flashes and massive leg cramps middle of night or early AM. I trying to exercise those PIA( pain in the a_ _ leg cramps away.
Am eating more potassium vegetables and fruit. Thxs for letting us know Kaliber.
I think I may have noticed this last time ... but for sure this time. I don’t think it’d be much of a problem for most , considering the heavy main SEs ... I just wondered if anyone else thought about it.
Yea these SEs can be nasty ... still .... considering the alternative,.... not “ all that “ ‘eh brother yayahahahaya
We got this brothers ... we bad ... not gonna let the small change get to us are we ? Those leg cramps sound awful tho yayahahahaya. Yikes ...
Maybe a medical grade jacuzzi ( powerful jets ) would be a helpful addition. My wife has the same debilitating legs cramps ... really intensely awful sometimes ... her toes , hands etc curling up etc. .... writhing in pain ....first she rubs / rolls n some stuff called cramp 911 and about 99% of the time that stops them nearly instantly. The rest of the time she jumps in the jacuzzi and massages them away with the powerful jets. Those hurt like hell.
I’ve been taking 2 -100mg tabs twice daily of Dr’s Best Magnesium Chelated high absorption tablets for the past four years my friend. That’s my go to supplement to support AFIB re-currence . So far it’s worked for that condition. Yes, I’ve been AFIB free since July 2016 my last Cardioversion date.
Now I’ve got to conquer leg cramps. I’ll be exercising more today especially my legs. Am eating more more high potassium veggies and vegetables too.
The loss of testosterone caused by Lupron and similar drugs knocks out a lot of the mitochondria in your muscles. The mitochondria are little organelles inside the muscle cells (and other cells too) that convert nutrients into usable energy. If they are damaged, the result is that you feel very tired and deprived of energy.
There is a way to fight this. Exercise can do a lot to restore the health of the mitochondria and get more energy into your muscles. I suggest that you try exercising. Start slow and easy. Walking may be a good start. Then gradually build up. A lot of men find that just walking a few miles a day makes a world of difference. If the weather is bad or you want to just stay indoors and watch TV, read, listen to music, or whatever, try walking in place, i.e., just stepping up and down. You can also climb stairs, walk on a treadmill, jog, swim, shoot basketballs, or do any other exercise that you like.
Yep, like Art Linkletter used to say, think it was him, exercise is the best medicine.
I probably got the wrong guy but exercising does my legs and body and arms and feet going strong. Agree totally AlanMeyer got to exercise muscles to get the mitochondria cells activated. If I don’t get in 2 exercising routines daily I my legs tell me OUCH CRAMP OUCH at night or when I get up to pee. Never ever thought I’d love exercising even Eliptical machine and leg curl and leg extension machines.
Yayahahahaya Hi Alan .... I love it every time I hear this ...and I know that lots of guys here actually could exercise as you mention. For me however , having the strength to just struggle to get out of bed in the mornings, catch myself with the walls and see if I can balance and start to walk .. even worse struggling getting up off the couch to pee every 20 minutes is often like a horror show. I always doggedly try to walk to my Kaiser office visits and I have to stop and rest every 20 - 30 feet ... seriously gasping for air , arms hands and legs shaking ..turned red , nearly fading away sometimes. Almost every visit , some staff person follows me around to see if I’m Ok , and more than one volunteer has nearly demanded I let them wheel me up to the clinic.
Jog ... treadmill ...STAIRS .... Yayahahahaya you don’t know how much I wished my friend .... I try to think I can look ahead to a time when things get a little better ... when some semblance of my previous life will return ... but my palliative care crew likes me to be optimistic and have hope but wants me to keep it realistic and remember that “ these “ are the good times and not to have unrealistic expectations for my future . I’m not going to “ get better “ , at most I’m just going to delay things as long as possible. Probably with an ever so slowly ebbing reality. Just exactly like a lot of guys on here. This isn’t the get better group .
I do always have the option of going off adt and I earnestly would feel much better for a while , but with a body paved with mets on every bone and LN ... it wouldn’t last for long. Last October, “ they “ thought I had 6 maybe 8 weeks on the outside, considering my scans and especially my blood panels and physical condition. Adt has literally been a lifesaver, but at a cost.
I do a lot more than you might imagine ..
And I’m way better with all this than most people might expect me to be ... I’m still here and not going anywhere anytime soon ... that makes my wife happy and makes me happy too. I got this , I’m much stronger than these tidbits... bring it on yayahahahaya
I’m <0.01 psa and <20 T .... Lupron - Xtandi doing its job nicely .... 7 months in a row ... now more worried about stroke or heart attack from physical strain. Last two months developed non specific diagnosis in the Kardia machine app and my Ekg detecting bp machines. Blood glucose went unstable ( GP activity working on both these ... ) long as I take it easy ... keep the strain down , I’m pretty good mostly ... considering. I’m managing to stay pretty comfy and upbeat managing my strain - stress and keeping all the discomfort and pain well controlled. I have a secondary massive bone joint disease , literally every bone joint in my body is screwed , deformed and painful ... it’s so co- mingled with the Mets they now consider it all one single PCa disease diagnosis.
You know .... if you lift your arm and it hurts , quit doing that and do it differently yayahahahaya. QOL is where it’s all kinda at now for me ... I feel like I’m doing pretty good, could be and has been a lot worse ... I do catch a glimpse of a mobility cart in my rear view mirror now and then Yayahahahaya. I’d hate that tho ....
I don't have a ready answer to your question, though I know I've seen the association between ADT and mitochondrial dysfunction in multiple articles.
Searching Pubmed now I see this article from 2012: ncbi.nlm.nih.gov/pubmed/224.... Skimming the article it appears that the authors believe the association is a fact but they don't know the explanation. Searching for ( ADT mitochondria ) and variations thereof will find others.
A search of clinicaltrials.gov for "fatigue" as a condition and "mitochondria" as an additional term gets 23 hits.
That probably do a better job of dealing with with any type of withdrawal . Probably the medical centers like the time release injections to lighten up the patient crush in their clinics and make room for more customers. Yayahahahaya
That’s mucho shots. I Opted out of the shots with an
Orchiectomy ..For me getting a shot each four weeks I consider hell. Each to town most men won’t go drastic like I did. You do what’s best for you. Live well teacherdude! 🎄
Same here, just had my 10th monthly shot of Lupron, I feel a little discombobulated and slightly disoriented for the first few days, then stabalize into a "normal ADT-like" state with a few hot flashes and some muscle fatigue during the day.
Yea , really hit my wife hard too. For a few months before my oncologist visit... while I was getting my nuclear scans etc ... I had bi- weekly blood tests. except for alp and something else ( those were dramatically high ) every time the results came back the results were slowly marching to the zero line of the test. I can’t tell you how helpless and disturbing that felt. They were well below the bottom of the normal range. I was very sick and had a lot of bone pain. Found out later they were thinking 6 - 8 weeks on the outside, probably less.
Adt has restored me , relatively speaking ... it worked miracles ... extended me considerably. Gotta love that yayahahahaya
Your experience sounds just awful. Your wife's as well. Gotta love that yayahahahaya ... Yeah, ya do. Is that supposed to be a Native American dance chant? Seriously.
Yayahahahaya actually I could use rotflao , or lollollol .... I just use yayahahahaya to be different. Come to think of it, if you set it to music it almost certainly could be a Native American chant. Lol I like where your mind goes.
Normal side effects I believe. I experience the same, my wife told the doctor I was getting grumpier and I told them I was just tired of dumb stuff and stupid people. On that note I try and stay away from people and places that trigger the grumpiness, Walmart being the biggest danger zone for me so I rarely go there.
Yayahahahaya yayahahahaya that place would trigger anyone yayahahahaya. I was super grumpy this morning before my Lupron shot ... been all calm and roses a few hours after I got the injection. Don’t even remember why I felt so bad, had anxiety and super grumpy now. All that completely gone . Trippy.
Hi Kaliber, You are so tough and resilient it’s remarkable. I have a very different experience with Lupron than you. For the first week of the 3 month shot I don’t feel too bad. Then for weeks 2 to 4 I don’t feel so good. But once I get past week 4 and all the way to the end of the 3 months I don’t feel so bad. I mean it’s not great but way better than weeks 2 to 4. I take Darolutamide instead of Xtandi. I don’t get the cognitive issues I’ve heard that come with Xtandi. Not sure if that’s a possibility for you to explore? Anyway I wish you the best. You add a lot of humor to this group and I really enjoy reading your posts.
Thank you brother ... it all sounds worse than it really is ... people are resilient and highly adaptive .... it’s surprising sometimes how good we are at that. I’m doing ok , got a truck load of mess but I just look past all that as much as possible.i don’t focus on it or dwell in it ... no biggie brother.
I started 6 years ago with a PSA of 5,006 at age 65. Have been on Lupron Depot 3mo. for 6 years and added Xtandi for 3 years. I'm 71 now, and have enough experience with both drugs to have felt some things come and go from month to month, week to week, or day to day, or hour to hour.
I've found that any modest increases in exercise often perk me up. Getting in some good REM sleep, despite hot flashes and bathroom trips in the middle of the night, can often improve my bodily feelings and moods. I've found that sharing my emotions with others can help me process them quicker than just brooding or being so anxious about them all alone.
The timed-release mechanism of depot Lupron may not really result in very wide swings of Testosterone levels on short time frames between doses ... but who knows how an individual mind/body will react on a day-to-day basis. Over the seasons/years I have seen hot flashes in all sorts of variations come and go in frequencies and in subjective discomfort. With experience, I've come to live with them, much like experiencing the daily weather.
The blood levels of Xtandi also reach a fairly steady state while on continuous long term daily dosing. After I started Xtandi, I had a little bit of gynecomastia, but not much. The main side effect for me was an increased level of general fatigue, above and beyond the trend I was already experiencing with age and 6 years of very low Testosterone while on Lupron. I walk slower now, and for shorter distances than I did 6 years ago.
My most uncomfortable problem lately has been recovering from a neck surgery on Dec 11 for recurrent melanoma in lymph nodes in my neck. I have an incision that runs from just above my Adam's Apple all the way over to just below my right ear, and then takes a sharp jag and goes down for about 3 more inches toward the base of my neck. There was also a pesky painful surgical drain tube sticking out until Dec 20. Lots of surface nerves were cut, and there has been a near continuous itching, aching, burning, stinging, and phantom pain/skin sensations for most of the past 2 weeks. Slowly, it is getting better, though.
I don't particularly look forward to when I will have to move on to new treatments for either advanced deadly disease. I try to do my best to stay in the present moment, and to take things one step at a time. There is lots of "small stuff" that I don't even bother to sweat anymore. I find it satisfying when I find myself getting "in the zone" and "following my bliss" in some things that I really like to do. I like it when I feel like I am being just "me", and not some increasingly decrepit old guy who has cancer(s).
My theory is that it’s not any specific form of adt it’s pure and simple it’s castration driven . All of these S.E.’s and many more I’ve had . I can relate to
Everything that you’re feeling. At least we can let it out to others that feel the same. The holidays always bring out the best or worst in human conditions. Get some seafood and don’t dwell on the constant suffering my zen friend . Did not the budha say “ life is suffering “. No stamina or strength are delights well known by the crew here. Peace on Earth and good will to mankind..🌎
Yes sir LuLu brother ... I probably sound awful but a lot of that is in how we go about dealing with it .... I shine most of it on as much as possible. I don’t let it collect energy from me any more than I absolutely have to. Sometimes it’s my wife agonizing for me , actually drawing my attention to it yayahahahaya. The look in her face when I’m hitting a few speed bumps , you know what I mean. She tries to yuck it up with me and does pretty well supporting me and giving me a hand now and then. She’s expert in knowing just how much to help and when ... so I can still feel like I’m doing it myself .
I feel like I’m doing pretty well actually ... tharze some messy stuff but whatever , I got more important fish to fry yayahahahaya I’ve got a great partner and co-pilot that lends a hand here and there .... I’m good to go brother. I got this for sure . Getting my napkin tucked in and my swizzle sticks ready ... those bi-valves better run and hide .... yayahahahaya
Enjoy the bi-valves. As one coming from a dysfuntional family that’s has long abandoned us , I now look into my wife’s eyes and my puppies for love .. I’m lucky like you , to have a great woman that puts up with my bs . Don’t know how .? She is super strong. I m happy that I instead if her has c.... I live vicariously thru her love and energy ........ Love is worth suffering in order to live and look into their eyes another day . Every Captain of APC WILL go down with the burning ship in the end. Until then my friend , I’ll bail water and try to keep this leaky barge afloat . My first two years with APC were hell . For my innocent bride especially .. Now
Limping by with a tank on E... treading water ..But today . We have an inch of fresh powder snow on the ground rapidly melting. The sun is out . Our Stella jay is flicking around . Today is a beautiful day in nature . My thoughts in prayer . For you my brother , for all of my brothers and their wife’s , Partners , and families. Endue whatever comes our way . Love those around us and nature itself . Happy kwanza dear Sir.. Have a great day today .. Let love abound .🌎🥳
It seems that, based upon comments here, there is a wide variation in SEs, Everything from "what's the big deal" to, "wtf" is happening to me. Unfortunately, my experience has been more on the "WTF" is happening to me? I've thought of myself as the poster child for Lupron SEs. 15 lb wt gain, shrinkage, no sex drive at all, higher BP, joint pain/discomfort,, fuzzy thinking, extreme fatigue, hot flashes every 2 hrs, emotional roller coaster, and so on. My last 3 month shot was in May. In theory, SEs supposed to begin to decrease in August. Didn't happen. It's now 5 mos later. Very frustrating indeed. And through it all, exercising 5-7 times a wk, walking, machines, diet. I don't see any improvement. So, bottom line: a real bummer for me and despite my research, I truly was completely clueless about what to expect. And, I found the doctors' caviler attitude about the SEs annoying as hell. Yeah, still on this side of the Earth but to experience all the changes in such a short period of time has SUCKED (and not in a good way).
Here's hoping that SEs begin to taper off and 2020 will be better. Oh, btw, anything changes that I could not attribute to some other factor, I blamed on Lupron. LOL I know that some men have been "on" Lupron for many years. They're better men that I.
Yes sir , we both have tickets to the same crazy train brother. While , yes , we’re both still here ....... and that is a good thing for sure ...... mannnnn we are paying dearly for the privilege. How good is it to be one of those “ what’s the big deal guys “ . Lucky stiff’s ...... oh ....uh .... lucky shrivels yayahahahaya.
All Aboard! Going to crazy town, where I’ve resided first near five years now... whoohoo, not for the faint of heart however. It’s a bitch .. have a good day .
All of what you mention comes and goes with really no rhyme or reason to it. I used to think t was the timing of the shots but it doesn’t make sense. I’ve been on Lupron going on six years now, I exercise daily, eat a healthy diet etc. I still get mood swings, headaches, neck pain, fatigue, cognitive and memory issues, etc. I’ve come to the conclusion that it’s just the lack of T and my body’s reaction to it.
One thing I’ve really noticed is that the amount and quality of sleep I get really has an effect on how I feel and my side effects. My worst headaches are on the days that I haven’t slept well.
As for mood, I try to stay positive and grateful. Not easy some days. The worst place for me is on the pity pot, despite how good it feels.
Yea that feels right to me ....many guys say it’s directly an effect of missing T .... of course , in my case, I know the Xtandi and Zometa comes into play as well. Positivity ...humor is all we have sometimes and it is good medicine yayahahahaya
Ya I was on xtandi for about four years just recently discontinued due to BP problems that were likely being exacerbated by it. We’ll see how it goes.
Ed
Glad you are still around. Thank your medications and ADT for that. The alternative sucks. However, co-morbidity may be the culprit and not SE from Lupron. What does your Internist say? His management plan?
Yayahahahaya still cooking is the main point isn’t it. Thanks for that. Yea I talk to my oncologist about it ... he just has this big smile ( I’m his record high psa patient that he thought was gone when we started ) , slaps me on the back and says “ your psa is zero, your T is castrate ... your bloodwork has rebounded amazingly ... it’s working great for you ...enjoy the extra family time ...you’re doing great. Yayahahahaya yayahahahaya ( as I drip with sweat and hobble out of his office yayahahahaya)
My team management plan is purely palliative with opiates at this point .... manage my vitals .. settle my affairs , gather my loved ones and stay as comfortable as I can. That’s about it ...
Can't say I've had that sort of reaction to a Lupron shot, but I've certainly had that sort of reaction to a good nap.. which is where I'm heading now.
So there I was 28,000 feet in the air without a parachute and..........(tune in tomorrow folks for another chapter in the life and times of a Pca victim).....
Never had that on my brief period off lupron. I broke out with acne on my back and face though. Lol. You feeling better could be the spicke in testosterone i think they call flare for a couplw weeks unless they give you casodex or something to prevent it.
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