Lupron Injections

13

Comments

  • foamhand
    foamhand Member Posts: 93
    edited June 2016 #42
    Started Casodex Today, Lupron Begins next week.

    Hi, Stage 4 Regional diagnosis here at 55, but I am still in pretty good shape with high energy. Pca just started to spread outside to 2-3 nearby lymph nodes and two small bone mets. No longer a candidate for surgery except for TURP on Wed to relieve intense burning while urinating. Doc wants HT and chemo to start with. No immediate allergic reaction to casodex 14 hours after taking first dose and hard to tell of any other side effects as I'm still dealing with the emotional roller coaster and shock of learning I have advanced PC. I will report back next week after first Lupron injection and TURP. The next couple weeks are probably gonna be rough.

     

  • Will Doran
    Will Doran Member Posts: 207 Member
    edited June 2016 #43
    Good Luck

    Foamhand

    I was diagnosed in August of 2013, and had surgery in Dec 2013.  Post Surgery, I was given 8 weeks of Radiation after starting Lupron.  I was on Lupron for two full years.  It was tough, but so far it has worked.  I have been off the Lupron for 4 months adn my PSA still remains at <0.010 even though my Testosterone is starting to come back up.  They had my total Testosterone knocked down to 17 (normal is between 250 & 1100).  My "T" is slowly coming back up and is , at my last test, up to 134.0.  Lupron can be very nasty.  The side effects can be and were terrible for me.  But hang in there it did work in my case. 

    I continued to work out at the gym and at home throughout those treatments.  My doctors encouraged me to do so.  I think that really helped. Bone, joint and muscle pain were the worst of the side effects.  I still am dealing with those side effects, but not as bad at times. 

    Best of Luck

    Peace and God Bless

    Will

  • RonJT
    RonJT Member Posts: 40 Member
    casodex and lupron

    There is good evidence that hormone therapy can improve outcomes in prostate cancer.  Each of us needs to decide if the side effects are worth the extra benefit.  I have been on casodex and lupron for 1 month now. So far only hot flashes.  I know that can change as time goes on.  One way to deal with it might be to get a one month dose at a time.  If the side effects are too much you can stop the drug.  My intent is to keep taking it at least during the radiation therapy.

     http://www.harvardprostateknowledge.org/hormone-therapy-for-prostate-cancer

  • Auntandy
    Auntandy Member Posts: 1
    cabiggs said:

    Firmagon
    I decided to take firmagon over lupron. It is a newer drug that has fewer side effects. However the first shots caused a lot of mussel pain for about 3 days. I am one of those that had a PSA level of 230. I went on a natural protocol developed by Sir Arnold Takemoto, who is a friend of mine. My PSA has dropped down to 22 in one month. Sir Arnold has an incredible track record with stage 4 cancer patients of all kinds. And to my knowledge he has never lost a patient that stayed on his protocols in the last 25 years. He is in Scottsdale Arizona, 480 922-9235. He was Knighted in England for his Cancer work.

    Are you still doing well

    I wanted to know about Sir Arnold and did he really help and what did he suggest you do.

  • hopefull1957
    hopefull1957 Member Posts: 1
    edited August 2016 #46
    lupron 30 months

    i am 59 and had  psa of 25 two years ago and gleason score of 8.  had 9 weeks radiation and have been on lupron for 28 months and 30 months when the injection i got last wears off.  i wanted to quit many times but kept saying 3 more months i will try.the libido worst side effect   big boobs not fun  gained 50 pounds .  dr says i can quit now or go for 6 more months . i want to stick it out but am scared of the alzhiemers thing as i now read about long term shots  of lupron raise chances of it.  the hot flashed went away after a year or so mostly .  i do believe that at least 18 monts is a good level of lupron and out wieghs the side effects and if you can make it 18 months then 2 years better .  i dont really think over two years is any better than 2 years  from what iread in latest studies .  i still like looking at naked women so as long as you have a good   memory and a girl you like a lot  you can figure out ways to have fun with out a hard one .  not as much fun but still fun if you enjoy making your lady happy.  longer you on it longer it is before libido comes back and wieght loss can begin . stay away from testosterone replacement thereapy my uroligist had me on it and it was like gasoline on fire  to the cancer .  i wish i never saw the stuff . one good thing about lupron lenth of treatment is  6 months xtra on it means 6 months no tetosterone and no fuel for the cancer and 6 months longer life  probably.  i also think guys under 65 tolerate the shots better  and have the most to gain from them as we have more years to,live . 

  • foamhand
    foamhand Member Posts: 93
    Side effects annoying but not debilitating...

    Into my 4th week after my first 3 month Lupron injection. Side effects became very noticeable about week 3. Major Hot flashes which don't mix well at my job working in a toffee cooking kitchen where everything I work around runs at 350-450 degrees F. I can manage but discussed starting Effexor with my doc. He said try to wait it out another month or so to see if they lessen at all. Irritability as well. My T level now is <3.0 Will see what happens by the time I go for my next checkup.

    foamhand

  • SwampLife
    SwampLife Member Posts: 12
    what to do?

    Just found this site and this thread today. Better late than not at all. The following is mine and not meant to influence anyone - just need to connect - You know.

    First diagnosed 2008 - radiation 2010 - failed 2013 - lupron 2 years. In two days I begin my lupron free life and will never look back. I am not a science experiment. What bad things await I can not know but I prefer sanity and life to what passed for a life with that treatment.  I am now 71 and each day  is actually appreciated and enjoyed. Better an eterity in hell than a year on lupron (or however that old saying goes)

    I will post now again about condition.  No advice given or taken as I have done that since 2008 and ended up no better for it, but who could know?

    Very best to all,

  • JayAur
    JayAur Member Posts: 33 Member
    SwampLife said:

    what to do?

    Just found this site and this thread today. Better late than not at all. The following is mine and not meant to influence anyone - just need to connect - You know.

    First diagnosed 2008 - radiation 2010 - failed 2013 - lupron 2 years. In two days I begin my lupron free life and will never look back. I am not a science experiment. What bad things await I can not know but I prefer sanity and life to what passed for a life with that treatment.  I am now 71 and each day  is actually appreciated and enjoyed. Better an eterity in hell than a year on lupron (or however that old saying goes)

    I will post now again about condition.  No advice given or taken as I have done that since 2008 and ended up no better for it, but who could know?

    Very best to all,

    And...they just told me Leuprolide depot...ugh

    MD, who I trust, referred me to oncologist who says when PSA doubles he wants me on Leuprolide injections every three months.  I am seeking all the advice I can get.  Most is negative.  Is there nothing good to be said about it??

  • Old Salt
    Old Salt Member Posts: 1,504 Member
    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.

  • JayAur
    JayAur Member Posts: 33 Member
    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.

    Tks

    Good to hear something positive about it.

  • foamhand
    foamhand Member Posts: 93
    edited August 2017 #52
    Mental Attitude is a big factor...

    I have Gleason 9 regional metastatic Pca (inoperable at my age / 56 yrs) and am on Lupron and TAK-700 continuously. Yes, I have moderate hot flashes and fatigue but not the other side effects. I have a good team of doctors and if they say hormone therapy is the best for me right now, I trust them. I still work and feel quite good most of the time. I have medications helping the fatigue and hot flashes. My PSA went from 7.1 to 0.5 on lupron and TAK-700. My Uro is very pleased with how much shrinkage I have in my prostate.

    The thing I find most helpful is a positive attitude. I don't dwell on my Pca too much and try my best to get on with the business of living. A sense of humor helps too. 

    I know I won't get out of this world alive but I don't want to waste too much time either. Hope others find what works for them.

    foamhand

  • JayAur
    JayAur Member Posts: 33 Member
    Tks foamhand

    Good to hear and think positive.  I am 18 years since radical prostatectomy, so I can't complain that PSA has now suddenly taken an upturn.  I was debating surgical vs drugs.  My MD is great, and whom I fully trust.  Chemical was what she said would be best.  Just trying to be prepared and have as few surprises as possible.  Waiting for doubling of current PSA before oncologist takes over with Leuprolide.

  • SPT
    SPT Member Posts: 40
    biggest mistake of my life
    I was diagnosed in 2007. I managed the disease myself for 10 years, with fantastic quality of life. Four months ago I was in the best health of my lifetime.

    Then I let docs talk me into Lupron. It killed my mind. I used to be a pretty smart guy, now I'm a moron. My testosterone went from 1060 to 13 in 2 weeks. Hot flashes 5 times an hour. No sleep. Horrible mood, I see the negative side of everything. My balls shrunk to the size of marbles. I work out 5 times a week and still am losing muscle. I'm afraid of everything and paranoid.

    I think about the new me and the old me. The old me was far from perfect but I liked him. I don't like the new me. Dumb, cowardly, crying for no reason, no will, no power, no desire. Not just desire for sex. I don't desire to get up in the morning, to cook healthy food, to exercise, to work, nothing. I can sit and stare at the wall for 3 hours and be fine with that. The old me was intensely curious, always reading and thinking. The new me likes distractions because thinking hurts. I'm drinking a lot now.

    This isn't living, it is just killing time. I realized my doctors count success as me having a pulse. I count it as having a life worth living. This life doesn't come close.

    Quality of life, informed consent, these are just words to doctors. They have no meaning. I asked about these effects and was told a pack of lies. I don't have a life, much less quality of life. I've lost at least 6 months of whatever time I have left, and perhaps all of it. All because I listened to the docs and let them trick me into Lupron.
  • GeneRose1
    GeneRose1 Member Posts: 64
    Just Got My Third Lupron Shot

    Since February of this year, I've gotten a Lupron Shot every three months and have had very positive results in that my PSA is down to the 0.01 undetectable range. I plan to get one more shot in November and then, if my next PSA and scans are good, will start a period off the injections and see how long I can go. The technique is called Intermittent ADT and Vasco de Gama and others have discussed it on this forum. Right now I deal with fatigue, bone pain, and most troubling; Lupron Brain. Even though I routinely do every brain exercise I can think of, I feel that I've lost some mental sharpness - especially short-term memory - since I've started getting these injections. Hopefully, things will return to normal during my Lupron vacation.

  • RobLee
    RobLee Member Posts: 269 Member
    edited August 2017 #56
    Lupron brain, moodiness, loss of interest

    I too have been on Lupron since January this year, and for me these are the worst side effects. After some research and considerable coaxing of my GP I started taking Venlafaxine, which has reduced the severity, frequency and duration of the hot flashes. I have lost some body hair and had some slight growth of my breasts. Being an antidepressant the Venlafaxine has brought about a major improvment in my emotional state. I am much more stable now, less volatile, and probably a much nicer person to be around.

    The short term recall is impaired but the worst cognitive effect has been absent mindedness, or diminished presence of mind and forgetfulness. The total lack of interest in anything that used to be exciting is disturbing... I hardly even watch much TV anymore, just listen to music most of the time. As SPT said, "just staring at the wall", though that I would have to say is a bit too extreme for me. I suspect he is likely stage 4 and perhaps terminal at this point (he doesn't say, but it is implied) especially as he was diagnosed a decade ago and presumably without actual medical treatment. I suppose it is a choice that we all have to make, for either a higher QOL or a longer but impaired life.

  • kluff
    kluff Member Posts: 5
    lupron

    The post written by spt could almost be me.

    Iwas diagnosed almost a year ago.i started on lupron followed by 37 radiotherapy sessions and was told i needed 2years on lupron.This first year has been a hell on Earth.I asked if i could come off lupron but my onco said i should do a further year.I have loads of all the usual side effects no sex,depresion,anxiety,malaise etc,andone unusual effect bad nasal smells it is in the small print and it is driving me nuts.It has lowered my psa to 0.63 but my quality of life has taken a big hit.I was not told about the horroors that lay ahead,and i do know that some men have very few side effects bless them but  this is not a one size fits all situation and i do not think doctors take account of this fact.Like pst i am scared of everything even short trips out.

    All the best to everyone on here Kluff1946

  • SPT
    SPT Member Posts: 40
    edited September 2017 #58
    Palliative my aunt fanny

    Lupron is described as "palliative care." But is it?

    Wiki describes palliative care as ".. focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve quality of life for both the person and their family."

    When Lupron is given to asymptomatic men with prostate cancer, it does not prolong life, it does not prolong disease-free progression. 

    What Luporn does do is destroy whatever remains of the man's life, including sex, self esteem, mental functioning, increased risk of fractures, loss of lean muscle, diabetes, hot flashes,  night sweats, fatigue, headache, upset stomach, nausea, diarrhea, constipation, stomach pain, breast swelling, acne, joint/muscle pain, insomnia, zero libido, swelling of the ankles/feet, increased urination at night, dizziness, , weakness, chills, clammy skin, skin redness, itching, or scaling, testicle pain, impotence, depression, memory problems, and heart attacks. 

    That's not even 1/3 of the list.  Quality of life is significantly degraded, never improved.  All for a meaningless, temporary decrease in a cancer marker, PSA.  Meaningless because PSA is not cancer.

    The only aspect of Lupron for asymptomatic men that is palliative is its benefical effects on drug company profits and doctor's incomes.  Maybe it makes the oncologists feel better.  It certainly doesn't do that for its victims.

  • kluff
    kluff Member Posts: 5
    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
    kluff Member Posts: 5
    edited September 2017 #60
    lupron

    Typo mistake nightmares do not  give me diabetes ,i meant i do not have diabetes, kluff.

  • SPT
    SPT Member Posts: 40
    kluff said:

    lupron

    Typo mistake nightmares do not  give me diabetes ,i meant i do not have diabetes, kluff.

    Typos on Lupron

    One of the many signs of cognitive injury caused by Lupron is my abiltiy to write.  Kluff mentioned a typo and that reminded me.

    I write as part of my living.  I was good at it.  My writing was terse, on point, well organized, good grammar, no spelling.  I earned money in grad school by working as an editor for a technical journal, rewriting the horrible writing of most scientists and engineers.

    Then came Lupron.  One of the first signs of how much it had impaired me was when multiple friends and employees, most of whom did not know about the Lupron, came to me in private and told me they had noticed a lot more spelling and grammar errors in my emails and reports.  They are good friends and have been correcting the worst errors and generally covering for me.