Lupron Injections

kluff said:

Lupron a nightmare literally.

Well written SPT,

I have in the last year had most of the side effects you have listed thankfully minus heart attacks,but including nasal disturbance and yes horrible NIGHTMARES that wake me and give me panic attacks or diabetes.

My QOL is zero as is that of my wife,i do not know how i will stand another year on this stuff and then hope it leaves my system.I have read that some never recover and that their pituitary gland does not kick in back to life,what a prospect.

I am nearly 71 and my onco said he would give me 20 years but he did not say what it would be like,he gave no hint of what lupron could do to mind and body,maybe he had lupron brain and forgot lol.My short term memory is certainly not up to par.

I still like a scotch now and again but even that can make me feel more depressed the next day,but we have to have some little treats to look forward to,because lupron has taken everything else i enjoy in life from me and my wife. 

Good luck to all on this journey kluff.

Kluff wrote "(my onco) gave no hint of what lupron could do to mind and body,maybe he had lupron brain and forgot lol."

He or she didn't forget.  Pretty much all oncos, uros, and radiators assign zero weight to quality of life.  They say the words but there is no meaning to them.

The onco and the rest get paid no matter what.  They count whatever torture they have inflicted as a success so long as you survive it.  It doesn't matter how badly it harms you or how long it takes to recover.  It doesn't matter at all if they can't see it on a scan or blood test.

Their definition of success is that I have a pulse.  My standards are higher.  I'm not willing to sacrifice everying I am and all that I've enjoyed because I'm so afraid of deatch that I will clutch at straws even if it destroys me.  I will have a life worth living or I will die young, but I will not live 20 years as a bedwetting vegetable.

I chose 6 months of neo adjuvant Firmagon with salvage radiation after RP. Side effects are insomnia, injection site pain, memory loss, weight gain, hot flashes with epic sweating, and mood swings. They are manageable but not much fun. The data on if it helps or not depends on your situation but the studies show a general trend of improved outcome. A general theme is the sooner you start and the more aggressive your situation, the more it helps. There is another school of thought that you should wait until much later so that you don't become hormone refractory too soon and lose this bullet. Then there is the debate about how long and if intermittent or continuous is better. Six months is pretty doable, not sure what I will decide if I have to face more treatments in the future. My testoterone and PSA both became undetctable. Firmagon gets you 75% of the way there in just three days. That first couple of days are a liitle rough but then the mack truck that hit you goes away.

George

Old Salt said:

Individual reactions vary greatly

The best that can be said about hormone therapy is that it may keep you alive longer. What's wrong with that?

I was 'on' it for 18 months and certainly had side effects, but I did recover from them after some time.

I was on Firmagon for 5 weeks and had 5 radiation treatmens in Dec 2015.Mris and biopsy are all good.Feel good no side effects except osteopenia in hip.Have friend whose Dad has been o Lupron after radiation for many many years.Dad is still on it and he is 105.

Georges Calvez said:

Firmagon

I have been on Firmagon for approaching six months now.
I have had a few warm spells, maybe a bit of sweating but hard to tell as it went up to 35 C in the day and was at least middle twenties at night here for a few weeks.
I have had insomnia but I listen to music at night while the wife sleeps on next to me and that helps. My physical libido has collapsed but my mind runs on, I remain interested in sex but with no physical reward; erection, orgasm, etc it is a bit of a waste of time on my side although I continue to have erotic dreams. I have not gained any weight but I do feel more tired if I work hard but that may be caused by the radical laparotic prostatectomy and the radiation. My testicles have gone from plums to muscats but body hair is pretty normal except where I had the radiation where it is a bit sparse. Penis size is about the same for girth but I would guess that I have lost an inch due to having my prostate chopped out. I have suffered from mood swings as well, I can cry at the drop of a souffle. I have these funny lapses of concentration, I can go to the bathroom and forget why I am there but my intellectual mind remains untouched.
I control the pain of the injections with 400mg of ibuprofen morning and evening for two day before and after and then a couple of days on 200mg morning and evening. Get the injection done well away from the belt line and get the nurse to follow the instructions exactly, this is definitely not a stick it in and press the plunger.
It looks like I am on this for the long term, two to three years, as I had an extensive but seemingly local and not very aggressive cancer so here's hoping I come out of the other end fairly OK but the cancer does not.
My PSA was zero after a few weeks, I am hoping that it will remain zero through the ADT and maybe for some time or even indefinitely afterwards.
Will prostate cancer kill me, maybe, but it will take several years at a minimum and maybe a lot longer, so I have credible odds of falling to one of the other scythes of the grim reaper.

Good luck with your treatments Georges.  I had prostatectomy two years ago, adjuvant radiation last year and have been on Lupron rather than Firmagon.  Taking venlafaxine helped the hot flashes and with time the emotional volatility.  I understand the getting weepy over nothing.  But the brain fog has been the most disturbing.  I find myself doing some pretty stupid things, though no major financial blunders.  Hopefully this will be ending soon... for both of us.

? Does anyone being treated Casodex and Lupron know if Casodex has been removed from the treatment after awhile.   I have been on Casodex since 8/20/18 and Lupron since 9/5/18.  So far flu like symptoms w/o fever at the beginning, somedays fatigue, mild hot flashes  some day not.  Other wise not as bad as I had expected.  I have gone on a very low fat diet eating fish and high protien veggies and nofat cottage cheese(for natural calcium) and 600mg calicium  Losing weight and walking a mile a day.   Does any one know how to put these post in cronilogical order ?

I have been on Lupron since May 21, 2018. My last 3-month shot was August 18th. I have found that increasing my exercise has helped with hot flashes. Also, it has kept my weight down, but I do have an extra 5-7 lbs around my waist that I have never had. Besides drastically reducing your T mine is unreadable <7 and PSA .012 Lupron is a doping drug, according to the International Olympic Committee. If you increase your exercise you will build muscle. I have more muscle in my arms than I have ever had. Of course, I have never really consistently done resistance training, pushups etc. Recently I hurt my knee just working at my stand up desk which I have used for 25 years. I was blaming this on Lupron, but I believe I may have twisted it. I run 20 to 30 miles a week and injuries happen. Generally, this is a temporary treatment and the side effects are transitory. I still have sex with sildenafil. Although no interest at all. I just have to remind myself to do it.  I left on the water on a tree yesterday and just happened to walk by it when it was overflowing.  Various memory laps during this 4-month experience.  Today I will add my first day of radiation treatment to the mix.  I am expecting to have to fight fatigue with additional exercise. The treatment for cancer can be even worse, but hopefully, the long-term outcomes for everyone will be worth it.  

Georges is correct. There are options if Lupron fails. But we need more info on your husband's (medical) status to advise properly.