Leery of Lupron - Please Help!

Mitch128

I've been lurking for the past 3+ months in this most helpful, compassionate forum while waiting for a comprehensive medical analysis of my particular PCa condition.

Condensation: 1997-2006 Treatment for BPH (Benign Prostatic Hyperplasia - Prostatitis Unspecified) with periodic R/X (Cipro) for low-grade infection and periodic PSA (Prostate Specific Antigent Test) blood workups. PSA tests showed gradual annual increases starting in 1999 to 2006. Two Tranrectal Ultrasonography (TRUS) with prostate biopsies performed during this period with negative Pathology.

2009 - PSA 17 followed by 6 core prostate biopsy. Interpretation: Right Base, Right Mid, Right Apex Prostatic Adenocarcinoma = Gleason Score 8 (4+4). No Partin Table Score Assessment.

October 2009 - December 2009 - (1) Whole Body Imaging Scan, (2) Abdomen/Pelvis CT scan, (3)Renal Ultra Sound, (4) Nuclear Medicine Prostascint Scan, (5) Pubic Arch Study and (6) Endorectal Coil MRI.

Tests 1-5 were inconclusive, test 6 (Endorectal Coil MRI) showed "Extra Right Side Capsule Extension" with "Borderline Involvement of the right seminal vessel".

Oncologist's observation: surgery ruled-out because success rate statistically very low vis-à-vis chances for recurrence since cancer cells would remain.

Oncologist's Recommendations: Casodex followed by Intermittent Hormonal Therapy (ADT) with Lupron injections for the expected 2-year efficacy of procedure followed by External Radiation Beam Therapy (EBRT).

Watchful waiting is not an option since I got the standard Oncologist "2 year, put your affairs in order talk", so I'm at the same crossroads everyone on this forum has or will face; what do I do? I am an active recently retired 70, in reasonably good health, have late onset type 2 Diabetes successfully controlled by Metformin and, at 6'1", about 8-10 lbs overweight at 195. Full blood panel workup this month shows all fields within normal parameters except slightly elevated Triglycerides (too many donuts).

Researching Lupron scares the hell out of me: From this forum and others the possible (probable?) side effects are: Fatigue, Flu-like symptoms, hot flashes, numbness in extremities, mood swings, joint pain, blurry vision, memory loss, weight gain, etc.

I’ve lived a full life, married well, have enjoyable outside interests and am financially stable. But, faced with the prospect of knowingly subjecting myself to a presumptive, protracted period of deleterious suffering versus enjoying a (doubtless) shorter quality period is a critical decision I must now weigh.

Any help, comments, suggestions and, yes, handholding, very much appreciated 

Thanks, Mitch

JohnK11

Hot Flashes-65%; skeltal pain-12%, the rest 7% or less
(I just have Trelstar LA injected 3 weeks ago--it's just like Lupron, but my uro claim it may have lesser side effect--I could not verity that on the web--if anyone has a url
that does throw some light on Trelstar vs. Lupron, please post it)

My understanding is that Hot Flashes are the most likely side effect (about 2/3, I
believe). If you can take that, almost all the other side effect are must less
frequent--the only one more then 6-7% of the cases is skeletal pain at 12%.

So, I'm not too worried (just a little, since the effect has not kick in yet--
it will not show up for at least 2 weeks after injections, so, it may just hit
me in the next couple of days).

One longer term worry is bone loss, one need to take measure to respond to that
(calcium, periodic monitoring, etc.).

JohnK11

JohnK11 said:

Hot Flashes-65%; skeltal pain-12%, the rest 7% or less
(I just have Trelstar LA injected 3 weeks ago--it's just like Lupron, but my uro claim it may have lesser side effect--I could not verity that on the web--if anyone has a url
that does throw some light on Trelstar vs. Lupron, please post it)

My understanding is that Hot Flashes are the most likely side effect (about 2/3, I
believe). If you can take that, almost all the other side effect are must less
frequent--the only one more then 6-7% of the cases is skeletal pain at 12%.

So, I'm not too worried (just a little, since the effect has not kick in yet--
it will not show up for at least 2 weeks after injections, so, it may just hit
me in the next couple of days).

One longer term worry is bone loss, one need to take measure to respond to that
(calcium, periodic monitoring, etc.).

Other Quality-of-Life issues
Those web sites I look at did not mention some quality-of-life issues, which are of course of great importance.
Your situation is very different from mine (I have had robotic prostate removal surgery, but unfortunately it had spread--so, hormone treatment is my follow-up treatment).
One have to realize that Lupron (and Trelstar which I got) is in effect chemical castration (although reversible) --so, if you have a good sexual life right now, it will likely stop, which will perhaps bring depression, etc., Weight gain, flabby breast, etc. may follow also. In my case, by choosing surgery, I have already made the decision to suffer some of these conditions already.
Good Luck

Mark58

Leery of Lupron
I had my first Lupron injection back in October 2009. The hot flashes are certainly a bother. It's a roller coaster ride in cold weather. I bundle up when I leave for the office. The truck is cold and so am I. I turn up the heat and try to get warm. Just about the time I stop shivering and maybe take off my gloves, here comes a hot flash! My forehead sweats; my back sweats. I feel like I'm in a steam room. After it passes I'm ok for a while. I get to the office and remove my coat. Now I'm chilled because my back is damp. You get the picture. But, without the Lupron, I might last 5 years. My wife survived hot flashes and so can I. My libido is decreased (very little desire for sex). My wife's libido has also gone down since she went thru menopause. We are still very close, maybe closer than before PC. I understand the quality of life issues you mention and I've had my share of depression since I was diagnosed and after surgery. Today (January 8th) is my 6th anniversary of being diagnosed. I have made all of my treatment decisions by putting my wife's concerns first. She would rather have me around for as many years as possible. Therefore I put quality of life secondary to length of life. For me, quality of life has been gone ever since my surgery in March of 2004. We have adjusted to a new normal. I'm 64 now and will soon retire. I don't know how long Lupron will work for me, but it is a bonafide miracle drug as far as I'm concerned. The alternatives are not very attractive; Castration, or Chemo, or no meds and maybe gone in 5 years. My next injection is scheduled for Feb 15th. I'll be there!!!

2ndBase

Lupron
I have survived 6 years with original diagnosis of psa24 and gleason 9. The sum total of my treatment was one Lupron shot to shrink the prostate and then 40 radiation treatments. I was 52 at the time and the cancer was very aggresive. They told me to put my affairs in order and that I had a 50% chance to survive 2 years.
If I were 70 and had your situation I would not take the shot and go with the radiation. There is no evidence that hormone therapy extends your life by more than a couple months and the side effects are all bad. If it is your decision to go ahead with it then you have to be ready for the consequences.
My cancer is now in the bone and psa is 75+. So they want me to take another shot and I absolutely am not going to do it. Do not let any doctor convince you that you will be better off by taking this poison. I do not credit my survival to the hormone treatment. It was done only because my prostate was so large and to help reduce the radiation field. I give most credit to my ability to eliminate the stress in my life and to remain active. Doing these things are better than any shot you can get.
I wish you the very best and feel like you know what to do and what not to do. Sincerely Mark

Mitch128

2ndBase said:

Lupron
I have survived 6 years with original diagnosis of psa24 and gleason 9. The sum total of my treatment was one Lupron shot to shrink the prostate and then 40 radiation treatments. I was 52 at the time and the cancer was very aggresive. They told me to put my affairs in order and that I had a 50% chance to survive 2 years.
If I were 70 and had your situation I would not take the shot and go with the radiation. There is no evidence that hormone therapy extends your life by more than a couple months and the side effects are all bad. If it is your decision to go ahead with it then you have to be ready for the consequences.
My cancer is now in the bone and psa is 75+. So they want me to take another shot and I absolutely am not going to do it. Do not let any doctor convince you that you will be better off by taking this poison. I do not credit my survival to the hormone treatment. It was done only because my prostate was so large and to help reduce the radiation field. I give most credit to my ability to eliminate the stress in my life and to remain active. Doing these things are better than any shot you can get.
I wish you the very best and feel like you know what to do and what not to do. Sincerely Mark

Leery of Lupron - Comments Appreciated
Thanks so much for everyone's comments.

As pointed out, the PCa balancing act must consider your spouse first, then quality of life versus expected longevity given any treatment modality a distant second.

I cancelled my scheduled appointment for the first Lupron shot (this Wednesday) and substituted it for a further consult with my Oncologist. What I'm in the process of discovering is all doctors have their own "boiler plate" treatment approach and seem to resent questions concerning any deviation. Example: when I inquired about Firmagon as a possible substitute for Lupon my question received a non-verbal brush-off.

I'm well aware that my treatment options are limited but am determined to make the best decision for BOTH of us even if this requires further study while the clock continues to tick.

Mitch

macguy

Lupron
Got my first 3 month shot of lupron Nov 25 to reduce the prostate cell growth and size. Hot flashes started a month later mostly at night so the blankets are on and off 3 or 4 times a night. I have been a steady 200 lbs at 6' with no weight increase. Impotence is a given but at 74 who cares. Hopefully the prostate will reduce in size and I can get on with HIFU. I had knowledge overload for a while that reminded me of jumping into a cool lake so I just did it. Check out Sonny's posts he has provide a great deal of inspiration information for us.
PSA Nov. 08...6.18
PSA July 09...6.89
Biopsy Sept. 8
Out of 12 biopsy cores 3 were positive
1 at 10%,
1 at 20%
1 at 40%.
Stage is T1c
Prostate volume 52cc

Bone Scan: neg
CT Scan : neg

erisian

My experiences with Lupron
I've been on Lupron continuously for over two years. The side effects are considerable, I must say, but I've gotten accustomed to most of them. The worst of them for me, in terms of quality of life, has been the hot flashes. However, those decreased greatly after I had been on it for a while. I think that it s more than just hot flashes, though, as my body's thermostat doesn't work like it should. I've had loss of muscle mass and the expected loss of libido too, but I find that none of the side effects bother me as much as I feared that they would before I started the treatment.

I now have AIPC, but my oncologist recommended staying on Lupron because, even though the Lupron is no longer effective at reducing my PSA, having a normal testosterone level "is like pouring gasoline on a fire", as he put it. A couple of men in the support group I attend have recently been on intermittent Lupron, and they have done some complaining about the side effects, mainly the hot flashes. At the worst of it, I would say that I was having 15 to 20 per day, and that's in line with their experiences too. At least with intermittent treatment, you get to look forward to being off it again for a while.

One very important thing that none of the medical professionals told me, that I learned in the support group, is that the muscle that it is injected into must be completely relaxed during the injection. If it isn't, that muscle will be VERY sore for the better part of a week. Since the muscle in question is usually your butt, it can make you quite lame for several days.

On the up side, there's a strong chance that hormone therapy will give you at least two years of progression-free time, which will spare you from the much worse side effects of chemo.

gator880

Lupron
Hi,
Lupron helped stave off cancer mets for a year, even though side effects are significant: hot flashes, weight gain, loss of energy as well as muscle mass. More info: RP, radiation, Lupron. Gleason 9; 3b. For about 18 months, PSA undectable <0.04)
Dr. recommended going off Lupron to see what happens...PSA went up and PC metastisized to lungs. Back on Lupron, now Eligard, but PSA continuing its upward trend. If we could revisit decision, the hot flashes are a heck of a lot better than metastisis...Good luck.

Virgil33

Gleason Grade 4 + 4, Lupron
Mitch:
I am a 23+ yr survivor. Had the radical surgery, follow up Radiation and STILL, the CaP came back and got me in my bones. Lupron + and anti-androgen pills, (Combined Hormonal Blockade) saved my life. I was on those drugs for 8 yrs at full strength, 2 more years at half strength. (In the old days, one could reduce BOTH drugs)
6 months after starting those drugs I had a clean bone scan. The cancer never came back.
I suggest you contact PCRI.org and locate a prostate cancer support group.
I am retiring as the leader of the local support group having been with them for almost 21 years. We have helped MANY men over the years. (Hormone blockade is MUCH less morbid than either surgery or radiation, I know!
You have a SERIOUS problem with that Gleason Score. Do your homework first!

And to quote two MDs: "Prostate cancer in not a deadly disease." Dr. Charles "Snuffy" Myers, M.D. a medical oncologist AND patient(!) A surgeon, Bernie Segal, M.D wrote a book: "Love, Medicine, and Miracles." He said: Do not accept a death sentence from any doctor unless they can show you a medical degree from a Voodoo School of Medicine. Only a Voodoo Doctor can give you a death sentence. (I am paraphrasing him)
Take care!

Trew

Mitch128 said:

Leery of Lupron - Comments Appreciated
Thanks so much for everyone's comments.

As pointed out, the PCa balancing act must consider your spouse first, then quality of life versus expected longevity given any treatment modality a distant second.

I cancelled my scheduled appointment for the first Lupron shot (this Wednesday) and substituted it for a further consult with my Oncologist. What I'm in the process of discovering is all doctors have their own "boiler plate" treatment approach and seem to resent questions concerning any deviation. Example: when I inquired about Firmagon as a possible substitute for Lupon my question received a non-verbal brush-off.

I'm well aware that my treatment options are limited but am determined to make the best decision for BOTH of us even if this requires further study while the clock continues to tick.

Mitch

The brush Off
I ran into a few of brush off stories when I was at Loma Linda U for treatment. A guy from AZ found out about proton therapy 2 or 3 days before his scheduled surgery. He scheduled an appointment with the doc and asked him about proton therapy. this guy's time was fortunate, just before Xmas, and LLU had an opening and his stats would fit in well with proton therapy. Well, the guy from AZ told his doc he was thinking about trying proton and the doc shut him off, said if you go for proton DON'T come back here. Some much for compasionate care. The guy said, "well thank-you doc!!" and got up and left his office and went straight out to LLU for the proton.

On the hormone shot question. i am on eligard. has the same symptoms you discribe for lupron. Reading your inquiry I think I will just continue the side effects from the eligard and stay with my program for another year. Shot #3 is due in April, then #4 in October and some in the year or so that follows the effects of the eligard will wear off and I'll see how the surgery, radiation and homrone do.

PC into the bone is a scary thing. I am sorry you don't have any easy choices, but remember, you have a dangerous condition. Fight it!!

Trew

erisian said:

My experiences with Lupron
I've been on Lupron continuously for over two years. The side effects are considerable, I must say, but I've gotten accustomed to most of them. The worst of them for me, in terms of quality of life, has been the hot flashes. However, those decreased greatly after I had been on it for a while. I think that it s more than just hot flashes, though, as my body's thermostat doesn't work like it should. I've had loss of muscle mass and the expected loss of libido too, but I find that none of the side effects bother me as much as I feared that they would before I started the treatment.

I now have AIPC, but my oncologist recommended staying on Lupron because, even though the Lupron is no longer effective at reducing my PSA, having a normal testosterone level "is like pouring gasoline on a fire", as he put it. A couple of men in the support group I attend have recently been on intermittent Lupron, and they have done some complaining about the side effects, mainly the hot flashes. At the worst of it, I would say that I was having 15 to 20 per day, and that's in line with their experiences too. At least with intermittent treatment, you get to look forward to being off it again for a while.

One very important thing that none of the medical professionals told me, that I learned in the support group, is that the muscle that it is injected into must be completely relaxed during the injection. If it isn't, that muscle will be VERY sore for the better part of a week. Since the muscle in question is usually your butt, it can make you quite lame for several days.

On the up side, there's a strong chance that hormone therapy will give you at least two years of progression-free time, which will spare you from the much worse side effects of chemo.

Eligard Injection
I get eligard injected into my stomach fat. Burns for about 10 minutes and then its ok. Sounds a lot better the butt shot.

Trew

gator880 said:

Lupron
Hi,
Lupron helped stave off cancer mets for a year, even though side effects are significant: hot flashes, weight gain, loss of energy as well as muscle mass. More info: RP, radiation, Lupron. Gleason 9; 3b. For about 18 months, PSA undectable <0.04)
Dr. recommended going off Lupron to see what happens...PSA went up and PC metastisized to lungs. Back on Lupron, now Eligard, but PSA continuing its upward trend. If we could revisit decision, the hot flashes are a heck of a lot better than metastisis...Good luck.</p>

Gator...
I just want to wish you the very best outcome. I have been struggling with the quesiton of whether to stay on th eligard or get off. I think you have pretty much convinced me with your post to stay the course. I wish there were better options, but I guess that is life. Take what you are dealt and make the best of it, like a man.

I do cry once in awhile over all this.

Trew

Virgil33 said:

Gleason Grade 4 + 4, Lupron
Mitch:
I am a 23+ yr survivor. Had the radical surgery, follow up Radiation and STILL, the CaP came back and got me in my bones. Lupron + and anti-androgen pills, (Combined Hormonal Blockade) saved my life. I was on those drugs for 8 yrs at full strength, 2 more years at half strength. (In the old days, one could reduce BOTH drugs)
6 months after starting those drugs I had a clean bone scan. The cancer never came back.
I suggest you contact PCRI.org and locate a prostate cancer support group.
I am retiring as the leader of the local support group having been with them for almost 21 years. We have helped MANY men over the years. (Hormone blockade is MUCH less morbid than either surgery or radiation, I know!
You have a SERIOUS problem with that Gleason Score. Do your homework first!

And to quote two MDs: "Prostate cancer in not a deadly disease." Dr. Charles "Snuffy" Myers, M.D. a medical oncologist AND patient(!) A surgeon, Bernie Segal, M.D wrote a book: "Love, Medicine, and Miracles." He said: Do not accept a death sentence from any doctor unless they can show you a medical degree from a Voodoo School of Medicine. Only a Voodoo Doctor can give you a death sentence. (I am paraphrasing him)
Take care!

Bone Infasion
Virgil, I think you are the first man I have heard of who has had bone invasion reversed and lived. How come I have not heard of this happening before? thank-you for your story.

Julie42

Mark58 said:

Leery of Lupron
I had my first Lupron injection back in October 2009. The hot flashes are certainly a bother. It's a roller coaster ride in cold weather. I bundle up when I leave for the office. The truck is cold and so am I. I turn up the heat and try to get warm. Just about the time I stop shivering and maybe take off my gloves, here comes a hot flash! My forehead sweats; my back sweats. I feel like I'm in a steam room. After it passes I'm ok for a while. I get to the office and remove my coat. Now I'm chilled because my back is damp. You get the picture. But, without the Lupron, I might last 5 years. My wife survived hot flashes and so can I. My libido is decreased (very little desire for sex). My wife's libido has also gone down since she went thru menopause. We are still very close, maybe closer than before PC. I understand the quality of life issues you mention and I've had my share of depression since I was diagnosed and after surgery. Today (January 8th) is my 6th anniversary of being diagnosed. I have made all of my treatment decisions by putting my wife's concerns first. She would rather have me around for as many years as possible. Therefore I put quality of life secondary to length of life. For me, quality of life has been gone ever since my surgery in March of 2004. We have adjusted to a new normal. I'm 64 now and will soon retire. I don't know how long Lupron will work for me, but it is a bonafide miracle drug as far as I'm concerned. The alternatives are not very attractive; Castration, or Chemo, or no meds and maybe gone in 5 years. My next injection is scheduled for Feb 15th. I'll be there!!!

anything to ease suffering from hot flashes?
I like your attitude of putting your wife's concerns first. She is very blessed to have you. My husband had Lupron injections for 28 months. His last one was January 2009 and he is still having hot flashes. His doc says he doesn't know how long they will last. His last PSA was 0.1 so the shots are still working, thank God. But he is going crazy with the hot flashes and still no sex drive. I'm just thankful he's still here with me. Have you or anyone else out there heard of anything that will ease the suffering of these hot flashes? Someone told me to get him some wild yam cream and try that and see if it helps.Any help or advice would be greatly appreciated.

jojo72455

JohnK11 said:

Hot Flashes-65%; skeltal pain-12%, the rest 7% or less
(I just have Trelstar LA injected 3 weeks ago--it's just like Lupron, but my uro claim it may have lesser side effect--I could not verity that on the web--if anyone has a url
that does throw some light on Trelstar vs. Lupron, please post it)

My understanding is that Hot Flashes are the most likely side effect (about 2/3, I
believe). If you can take that, almost all the other side effect are must less
frequent--the only one more then 6-7% of the cases is skeletal pain at 12%.

So, I'm not too worried (just a little, since the effect has not kick in yet--
it will not show up for at least 2 weeks after injections, so, it may just hit
me in the next couple of days).

One longer term worry is bone loss, one need to take measure to respond to that
(calcium, periodic monitoring, etc.).

Lupron side effects
If you do not have a female partner then the side effects you mentioned are enough. If you do have a partner, remember that the other serious side effect is loss of libido. The urologists and oncologists act as though this does not matter, but they are wrong. I am the wife of a chemically castrated male and my life has become pretty miserable. I take antidepressants now to get through the days. I am committed to getting him to the end of this miserable disease but it is not an easy task.

randy_in_indy

jojo72455 said:

Lupron side effects
If you do not have a female partner then the side effects you mentioned are enough. If you do have a partner, remember that the other serious side effect is loss of libido. The urologists and oncologists act as though this does not matter, but they are wrong. I am the wife of a chemically castrated male and my life has become pretty miserable. I take antidepressants now to get through the days. I am committed to getting him to the end of this miserable disease but it is not an easy task.

Jo Jo
GOD BLESS YOU! and I Pray for his recovery and your ability to mend yourself!

Randy in Indy

Trew

jojo72455 said:

Lupron side effects
If you do not have a female partner then the side effects you mentioned are enough. If you do have a partner, remember that the other serious side effect is loss of libido. The urologists and oncologists act as though this does not matter, but they are wrong. I am the wife of a chemically castrated male and my life has become pretty miserable. I take antidepressants now to get through the days. I am committed to getting him to the end of this miserable disease but it is not an easy task.

so Trew!
Jojo, thanks for posting. what I call "the shot" is just outright terrible. Plus the mood swings, plus....

My dear wife is so encouraging, but I know she misses me as much as I miss her. I am not on Lupron, I"m on Eligard, but I can not imagine anyting being worse than eligard. I feel like I am knocked down every day and then kicked for awhile.

At the Doc's office it is a look of "What is the matter with you? Other men get these shots, too." I think I cry some every day now.

Nasty nasty shot.

You are a good wife.

Connie1954

My Dad took Lupron shots
My Dad took Lupron shots with prostate cancer. Did not help. His PSA is now 43.

Trew

Connie1954 said:

My Dad took Lupron shots
My Dad took Lupron shots with prostate cancer. Did not help. His PSA is now 43.

More Details, please?
Connie, I would like a few more details about your dad. What was his PCa like? His gleason? Did he have positive margins? What other treatment did he have and what was his age? You many have said all this somewhere up above, but eligard (and probably lupron, too) also messes with your memory.

I would like to think what I am going through on eligard (like lupron) is actually doing me some good. But this is an honest statement: I hate "the shot!" I was told the shot only works so long, then it will just stop being effective. So I am hoping surgery and radiation have done their work well and "the shot" will give my body a chance to recover and build up some natural defenses. And then the shot will be done, and I find out how everything holds. Talk about excitment!!

sidneytrent

Lupron use
Hi. My husband is going to be 72 in a few weeks. He was diagnosed with prostate cancer in June 2008. His PSA pre-biposy was 42. A week after, it was 68. Another week later it was 92. He started Lupron and Casodex. After 3 weeks, his psa was 8. He continued the Lupron and Casodex for 10 months with the psa bottoming at .04. Then he took a seven month "rest". His psa went back to 4.96 and he decided to go back on hormone therapy. His oncologist elected NOT to continue Casodex after the first month of this go round. He has had three injections (three months) of treatment so far. His second psa was 2.92. It may or may not go lower. I'm telling you all of this to let you know that he is doing well with the Lupron treatment. Sure, he experiences some hot flashes, some weight redistribution, loss of body hair, brittle nails, thinning skin. He tires somewhat more easily than before the cancer diagnosis. I am certain that it is his understanding of the possibilities of mood swings and irritability that keep these things from happening. He WANTS to be patient and not get angry.....so he thinks before he speaks. (most of the time)
In short, Lupron is, in my opinion, a viable alternative to doing nothing and suffering the consequences. Radiation has been suggested to my husband, but he has declined so far. I sincerely hope that this eases your mind a bit and helps to calm your qualms. Prostate cancer is not an easy thing to live with, but the good news is, you CAN LIVE with it and have a reasonably happy life. Not a perfect life, but a good life.