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Lupron Injections

ob66
Posts: 214
Joined: Apr 2010

Have been on Casodex for a week. Next week I will be having a Lupron injection (my first), prior to going to Europe for three weeks. I have heard that the side effects are not to be taken lightly---brutal it sounds like (hot flashes, irritability, sleeplessness). Can anyone who has done so enlighten me on this? Thank you.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I took a lupron shot to shrink my prostate before radiation. The cancer had already spread. If I had it to do over I would have not taken the shot as I still refuse to take more. I'm doing fine and though my psa is over 100 and I was given two years to live at age 52 in 2004, I am glad I no longer even consider such a treatment. Do what you want and deal with it as you must. Lupron is certainly not a cure and does nothing to improve your lifespan. I know.

ld34
Posts: 24
Joined: Jun 2009

I read your comments every time you post...I am doing every thing I can to put off casodex and lupron as long as I can ..I think your points may be right on... but, as they say, we shall see...Thanks for your comments

mamlil
Posts: 6
Joined: May 2013

My dad was diagnosed last year and had since been on the lupron. After the first shot, his psa dropped significantly and after the second or 3rd, it was already zero and had been zero since. The doc didn't want to do surgery on him because he is 82 and very frail from other neurological conditions, but we were told that the lupron is best and I believe it is, because it has been known to work for a long period of time and it takes care of other cancer cells that may be present in other cells but are too small to be detectable. My take on this is this. It beats chemo, radiation and surgery, and so far, it's been working with my dad and my fear is for him to stop for comparing it to antibiotics that one is supposed to be on to completely subdue the "enemy", I fear that if his shot gets delayed, the enemy would develope resistance to it.

mamlil
Posts: 6
Joined: May 2013

My dad was diagnosed last year and had since been on the lupron. After the first shot, his psa dropped significantly and after the second or 3rd, it was already zero and had been zero since. The doc didn't want to do surgery on him because he is 82 and very frail from other neurological conditions, but we were told that the lupron is best and I believe it is, because it has been known to work for a long period of time and it takes care of other cancer cells that may be present elsewhere but are too small to be detectable. My take on this is this. It beats chemo, radiation and surgery, and so far, it's been working with my dad and my fear is for him to stop getting them or to have them delayed, for comparing it to antibiotics that one is supposed to be on to completely subdue the "enemy", I fear that if his shot gets delayed, the enemy would develop resistance to it.

Mitch128
Posts: 20
Joined: Oct 2009

LUPRON scares the hell out of me. From this forum and others, some possible side effects are: Fatigue, flu-like symptoms, altered lipid levels, hot flashes, numbness in extremities, mood swings, joint pain, bone loss, anxiety, blurry vision, memory loss, increased risk of cardiovascular disease, decrease in hemoglobin, male breast enlargement, elevated blood pressure, and weight gain/weight re-distribution, loss of body hair, brittle nails and thinning skin.

This stuff is POISON - make any chemical castration (that's just what it is) decision carefully.

Trew
Posts: 891
Joined: Jan 2010

Ob, I am on Eligard that sounds like "On-your-gard!!! (Only different, of course, but it means the same thing!)

Mitch, I have all those symptoms you list above, maybe a few more on Eligard but its the same basic stuff as Lupron.

I have discussed quitting the shot with my wife a number of times, and with a few friends, and the oncologist at Loma Linda where I got proton and radiation treatments. The doctor told me I am the patitent and I don't have to take anything I'm not comfortable with or don't want- its my call as a patient. What would he recommend? I wanted to know. He favored the two year treatment plan I am on because it has a statisical advantage over less or no hormone treatment he told me. He was a very sharp doctor.

From a nursing textbook I learned that the hormone treatment, by stopping testostrone, actually interrupts cancer cell development, when the hormone drug is working as it should. Combined with radiation, hormone treatment might be the deciding factor to turn the growth of cancer cells in your favor.

And 2nd Base, Personally, if I had a PSA of 100 or higher, I would be scared to death every day. Something is going on with a PSA that high and oncology docs see this stuff and they push what they see as giving their patients an edge over cancer.

In Feb- just back from LLU and treatment I watched a man die of prostate cancer. It is a nasty ending. I have hated every moment on my hormone shot- almost decided in fovor of quiting after 1 year, but then decided to trust the judgment of some good medical people and fight this thing. OK, I am depressed and moody and all those other things- but there is still life and hopefully I will grow past those symptoms after the second year of shots is completed.

Mitch, Poison? Sure- it comes concocked up from some chemo lab- gives you a suggestion of the seriousness of what you are dealing with. There is a time when the stuff works, and then there is a time when it won't work. You want to do everything you can to avoid that second time. Again, as I have said before, PC is a nasty end to life if it goes that far.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Most of the worst "side effects" are the direct effects of a low testosterone level, which is the intended effect of the Lupron, aka "medical castration". Intermittent treatment is being used to reduce side effects. I've been on it continuously since 2007. I don't like the side effects, but my oncologist wants me to stay on it for what seems to me to be a good reason, so I stay on it.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Erisian, since the mean doubling time for cancer cells in 475 days, I am curious as to why your doctor would have you on it for so long? What is the advantage of remaining on hormone blockage past the time when the cancer cells are likely to die and commit "suicide" in the absence of the testosterone limit?

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

I have metastatic HRPC. My oncologist says that even though the HRPC doesn't require testosterone, it still responds to it. So allowing a normal testosterone level to return would be "like pouring gasoline on a fire." With my current PSA over 100, that is not something that I'm interested in testing.

The point about selective breeding is right on, but that's what ALL the treatments for advanced PCa do. None are 100% effective, so they kill what they can, but the resistant cells survive. Then you try another treatment, and see what that does. Repeat as needed...

nymets1
Posts: 26
Joined: Sep 2009

Trew,

2ndBase is excercising his right to live a higher quality of life. He had already tried Lupron and decided that the side-effects weren't worth it. The fact that his journey started in 2004 and he is still alive today actually puts some credence in the theory that hormonal ablation does NOT extend life; instead it keeps the hormonal resistant cancer at bay until the hormonal independant cancer grows and takes over; an inevitable event, either way.

Ok, I do not totally subscribe to that theory. I do think that hormonal ablation does extend life, however, in most cases, not significantly. Most of us, myself included, will do what we can under reasonable circumstances to live even a year longer.

As to effects----there is growing thought that the old gold standard, estrogen, may actually be BETTER than the newer drugs that depress testosterone production. Estrogen has LESS side effects (fewer hot flashes, no bone loss (actually it strenghtens bone), much less depression, no memory loss). It does impair libido and has a greater propensity for breast enlargement,something that can be alleviated with radiation, prior to starting the treatment).
Its MAIN adverse impact is cardio-vascular, something that can and has been alleviated with smaller (but still effective) doses, the concurrent dosing of blood thinners and close monitoring. I believe that the interest in bringing back estrogen is gaining and I would expect some trials to begin in the future. BTW: estrogen is a very CHEAP treatment and even if its considered experimenmtal by insurers, most folks can easily pay for it, out of pocket. What has been seen more often than not is that estrogen treatment DOES extend life as long as it doesn't kill you other ways (again, it has been shown to be safe using smaller doses, etc; however it would never be recommended for someone who has heart disease). Most oncologists use estrogen as a second line, after hormonal ablation has failed. However, it may actually be a better choice for first line treatment (after primary treatments have failed).

Trew
Posts: 891
Joined: Jan 2010

I know that. And it's ok with me what 2ndBase does. I understand the quality issues well enough after 1 yr on Eligard. This PC is nasty stuff with hard choices for men. I'm getting a hot flash as I type this.

As far as first line treatments- isn't that what this post began discussing? for someone new in this PC stuff, I sure don't want him thinking a PSA of 100 is something one can live with. I have a lot of sympathy for 2nd Base and hope he makes it all the way around to home. But his model hardly seems like a model for others to follow- not in the early stages of PC, anyway.

I just had my first bone density test last week, and after one year on Eligard my bone density is just on the low side of normal. there are issues with hormone therapy.

cabiggs's picture
cabiggs
Posts: 2
Joined: Mar 2010

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.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

You will have MUCH less pain if the muscle that it is injected into is completely relaxed during the injection. I got the 'Lupron Limp' a couple of times before someone clued me in on relaxing, and it has worked every time since then.

Trew
Posts: 891
Joined: Jan 2010

Eligard is injected into the stomach muscles. Burns like fire. I get my next shot in 3 weeks- I'll try the relaxing technique and see how it goes. One guy told me rubbing some ice on over the skin for a few minutes before the injection also helps ease the burn. I only get my shot every 6 months- 2 down, two to go. I hope.

"They" can't keep me on this stuff forever. I hope.

jogger
Posts: 47
Joined: Nov 2009

I'm on Firmagon, and while there is a good deal of discomfort for the first few days at the injection site, it is not because a guy has not relaxed his muscles, since the injection is given sub-cutaneously in the abdomen, avoiding any muscle.

Jack

Les Likely
Posts: 1
Joined: Jul 2012

If it works for you then Go For It. However, a bit of web sleuthing suggests that Sir Arnold Takemoto is, in fact, a Knight of the Royal Order of the Oak (a fantasy order - http://www.chivalricorders.org/orders/self-styled/slfstlod.htm).

Re. Lupron: I have been on it for about 9 months; only one obvious side-effect (occasional hot flushes and sweats that can last 5 or 10 minutes). There are several different injection plans. I get one every 4 months; intramuscular, gluteal; no big deal - just focus on muscle relaxation during the injection - and yes, there's a bit of muscle soreness for a day or so but not nearly as bad as the day after over-exercising after a layoff :-). The first injection forced my PSA from 12 back to 0.02 (borderline of detectability), where it has stayed since then.

Prior to the Lupron, I had had a prostatectomy 3 years ago, (with PSA rebound) then targeted radiotherapy (again with PSA rebound), and finally this Lupron course (which seems to be keeping the PSA at practically-zero levels. My quality of life (QOL) is pretty good - the surgery did most to wreck it, due to incontinence and loss of libido, but the incontinence has lessened to the point where a single Tena pad per day copes with it OK (Unless I am out walking or hiking - then I need spares and really need to be aware of the situation). Non-walking exercise - gym, aerobics, weights, swimming, etc. are A-OK.

I am aware that hormone-therapy is not "a cure", and I am expecting that the cancer cells (hiding somewhere in my system) will eventually mutate and develop resistance to the Lupron. The only question is "How Long will this take"? It probably varies with each case - we are all different. I have heard of other survivors who have been on it for several years and are doing OK.

I sometimes wonder if I would have had better QOL if I had not had the prostatectomy and opted for just radiotherapy and hormone therapy.

Trew
Posts: 891
Joined: Jan 2010

I think you got most of it. I am at the end of my 6 month shot of Eligard. I will take no more of it. I was told it will take 9 months or longer to get out of my system. wow! 9- 12 more months just to let the stuff get out of me.

gator880
Posts: 21
Joined: Aug 2009

Understand your quandry about hormone shots. My husband had RP, radiation, followed by hormone shots for a year. Changed drs. due to relocation, and hormone shots stopped for 1 yr. During that time, cancer spread to his lungs. (Yes prostate origin)
The side effects of Lupron, Eligard, and Casodex (which was ineffective) are bears, but lung tumors are growing slowly. If he'd stayed on hormone regimen, would the cancer have metastisized there, and at that time? Cann't know, but we certainly wonder. To us, the side effects are a lesser evil than metastasis. Food for thought...

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

After being on casodex and Lupron for one year I started a different type of Hormone therapy called Firmagon (degarelix)with incredible results and about half of the terrible side effects compared to Lupron. There are some downsides but I'll take an injection of Firmagon any day over Lupron. google Firmagon and do your research before you decide. You can also view my experience on these boards. Search under Firmagon.

Best wishes,
Glen

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

Hi Glen.....I enjoy your posts. I started on Firmagon and get my second injection tomorrow. I had external beam radiation in 2006. My psa went from 4.6 down to the 0.5 level for 9 months or so and then started back up and the last reading was 3.8 in April. I have high hopes(and prayers) for success. I like the ecouraging words in your messages....thanks.

wayne(Les)

Trew
Posts: 891
Joined: Jan 2010

I was wondering if there is any way to tell if the Lupron or Eligard is failing? If the PSA is going up, does that mean your testostrone level is also increasing and does that mean you might have an erection while on The Shot? Just wondering if that can happen. Hope you can understand my question- I did not want to begin a whole new htread on this topic.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Failure would indeed be an increase in the testosterone level. That would be detected by a blood test for testosterone. It _is_ possible to have an erection while on the shot, or at least something close. Of course, if you believe the data from the Phase 3 trial that got Lupron approved, loss of libido and ED occur in only about 5% of patients. It makes me wonder what else they screwed up.

Trew
Posts: 891
Joined: Jan 2010

Wow! what a claim. Only 5% of patients on Lupron have problems with libido!!

Well, I'll call that my LOL of the day.

Dr_Jeff
Posts: 10
Joined: Jan 2010

Hey ob66
4 years ago, at age 46, I had PSA of 23 and opted for robotic surgery and radiation followed by 2 years of hormone therapy which consisted of Lupron, Casadex, and Finestride. It was my idea to add the Finestride which my oncologist agreed to. I did have daily hot flashes which improved with the addition of Effexor, an antidepressant given to menopausal women. Yes, there was some minimal muscle pain at the injection site for a couple of days which was no big deal. My libido was killed for those two years, but fortunately my wife preferred having a husband who was alive. I had some minor memory problems and some "mental dulling", but it was nothing that was noticed by others. I took some extra calcium and exercised to combat bone loss. I am happy to say that today my PSA continues to be undetectable. My libido is back and so are erections, even without pills. I would tell anyone to stick it out and endure side effects. Choose life!!

ob66
Posts: 214
Joined: Apr 2010

Thanks Dr. Jeff.....Had the injection, climbed on a plane for a 3 week vacation and nothing. I mean nothing. Some mild hot flashes a couple of weeks after the injection, but not that often, and not that bad. Have been taking extra calcium as well. All is well in this dept. Now just to get healing complete with the AUS and I will be a happy camper.

Noniu
Posts: 45
Joined: Apr 2010

On a previous post that informed my father, has metastic prostate cancer. His PSA level is 107 as of last Monday. I asked his Oncologist about Lupron/Firmargon shots. He said those shots have no clinical benefits. My father is on Casodex,hormonal therapy and he will be given Provenge in two months.

Please, do not get discourage, you do whatever treatment you can tolerate, you are young and it worth trying, never give up.

Good luck!

Samsungtech1
Posts: 350
Joined: Jan 2011

Sounds like your dad and I are on the same path. My cancer metastisis was to lungs. I am 66 years old now and have to admit that quality means more than years. I hope your father gets through this and lasts as long as his health insurance. Just kidding. Metastic cancer is never good, but it sure makes you appreciate life. I am going trout fishing with my son, in the Kenai penin, AK in October. Why. Not? It is all catch and release, but usually I fish for salmon up there. Never been up there in October, but this disease seems to make you want to do things out of the ordinary. The rainbow trout record out of that river is over 42 pounds. Wow! When your life is winding down it would seem that you would want to enjoy all you can. Going to Europe next spring, but going to Cuba this year. Cigars are worth it. I quit smoking in 1985, but every doctor I met said the nodules in lungs were from smoking. Biopsy said prostate cancer. Do not tell Dr.s that you ever smoked, no matter what it was. Seems like they give the impression you deserve to die.
Good luck to your dad. Hope he gets to enjoy it all.

Mike

still above ground
Posts: 1
Joined: Aug 2012

I am 63 and been on the bus since 2005 and had the big surgery that October. All was well till 2009 when a new tumor was found in the bed. I then made 42 trips to the microwave for radiation. Thats when the fun really began as I had some major problems at the end. I had a stricture and could not pee. It was the worst pain ever. They roto rooted me and it got better for a while. Fatigue, spasms, etc., and I was miserable for a while. I got somewhat better for a few months then my PSA tripled in 30 days so they started me on Lupron, megestrol, and Casodex. I am now really having fun as i am weak as a day old cat, feel sick after eating, have sweats and or hot flashes, do not sleep well at all, and have depression. The good news is that my PSA is now 2.4. I have found on the net that Lupron is a Chemo treatment which none of my Doctors has mentioned. Have any of you guys on Lupron been told that it is Chemo? I fully understand that Lupron does nor cure anything but slows progression in advanced cancer.

Samsungtech1
Posts: 350
Joined: Jan 2011

This is the Fimaron or whatever. I quit it after two shots, but I now believe that it was the radiosurgery, high does radiation with a machine that travels all around you. Star wars has nothing on this so it is getting to the point if we can think it, they can invent it. Got paranoid on my last two visits. Iwas taking antavan, and percocet for these treatments.

Anyhow, I think DEglasix, Firmaron? Is not as bad as I originally posted. I am going for my third shot, after quitting, five total and this time not too bad.. My doctor came into the nurses room and shot meup in my first retry. He took about ten minutes. Nurse shot me up last time and did 70 per cent better.

Next week i get my bllod work, CT scans, includes drinking the berry juice, deglasix shot, and following monday results. Doing this every three months is a trip. If I get a headache that lasts more than two days I get an MRI of the brain.

I about have my business shut down, so now I can travel. Short lease, 28 days, not sure how this is going to work.

mamlil
Posts: 6
Joined: May 2013

My dad's doc didn't say the word chemo when he prescribed lupron. We were told this is a hormone which made me feel like it is "organic" or natural. Found out today that it is "man-made" but I don't think there is a natural one in the market. Anyways, so far we are satisfied with lupron as my dad's psa had significantly dropped and went to nil in only a few sessions and we want him to receive it for as long as he could. Dad's been having depression, but then again, he is 82 and had been wheelchair and bed bound for many years before even being diagnosed. We have not noticed any thinning of hair nor nausea such as commonly seen in those receiving chemo. He's had bone pains from even before being on the drug, from pre-existing osteoarthritis, and they have been no worse than prior to lupron . Actually he has very rarely complained of bone pain since he started on drug.

mamlil
Posts: 6
Joined: May 2013

My dad's doc didn't say the word chemo when he prescribed lupron. We were told this is a hormone which made me feel like it is "organic" or natural. Found out today that it is "man-made" but I don't think there is a natural one in the market. Anyways, so far we are satisfied with lupron as my dad's psa had significantly dropped and went to nil in only a few sessions and we want him to receive it for as long as he could. Dad's been having depression, but then again, he is 82 and had been wheelchair and bed bound for many years before even being diagnosed. We have not noticed any thinning of hair nor nausea such as commonly seen in those receiving chemo. He's had bone pains from even before being on the drug, from pre-existing osteoarthritis, and they have been no worse than prior to lupron . Actually he has very rarely complained of bone pain since he started on drug.

mamlil
Posts: 6
Joined: May 2013

My dad's doc didn't say the word chemo when he prescribed lupron. We were told this is a hormone which made me feel like it is "organic" or natural. Found out today that it is "man-made" but I don't think there is a natural one in the market. Anyways, so far we are satisfied with lupron as my dad's psa had significantly dropped and went to nil in only a few sessions and we want him to receive it for as long as he could. Dad's been having depression, but then again, he is 82 and had been wheelchair and bed bound for many years before even being diagnosed. We have not noticed any thinning of hair nor nausea such as commonly seen in those receiving chemo. He's had bone pains from even before being on the drug, from pre-existing osteoarthritis, and they have been no worse than prior to lupron . Actually he has very rarely complained of bone pain since he started on the drug.

mamlil
Posts: 6
Joined: May 2013

I think we should give only true information to the doctors because even if it isn't for us, those might help others in knowing the real deal about this illness and possibly be able to improve treatment regimens, if not find cure.

socks's picture
socks
Posts: 2
Joined: Oct 2009

Hey there my name is Gregory longmire, aka socks. Had prostate surgery 4yrs ago. Then had to have radiation traetments.  (32wks off on weekends). Now i'm on Lupron.

I'am now 65 and still employed. I'am off work for now to see what this Lupron stuff does to me. After taken it,it cause my ankles to swell, i do get hot flashes, but nothing 

to sweat over. ( oh that's funny.). Just got back from Myrtl Beach South Carolina yesterday. It was Beautiful. Took my clubs but couldn't play problems wit a little back pain.

Hopefully this Lupron plan works cause really don't want to be radiated.  But my experience has not been really bad at all.  PS: if this is all it does to me.  oh yeah plus was

i was taken steroids,morpin,and some more stuff. i forget.  Ok holla back! 

 

 

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