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Leery of Lupron - Please Help!

Mitch128
Posts: 20
Joined: Oct 2009

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
Posts: 23
Joined: Nov 2009

(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
Posts: 23
Joined: Nov 2009

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

jojo72455
Posts: 2
Joined: Feb 2010

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's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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

Randy in Indy

Trew
Posts: 891
Joined: Jan 2010

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.

getreal1
Posts: 1
Joined: Mar 2013

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outraged
Posts: 3
Joined: Nov 2013

I came looking for some info on the efffects of Eligard when I came accross what is supposed to be a cancer forum where I thought those who are affected by this disease would be able to express their concerns or anguish without fear of retribution. It is beyond my comprehension why a woman who comes and expresses her sense of loss or loneliness at the loss of her ability to share intimacy with her partner is set upon and accused of being a self centred narcisist. I too know the lonliness and sense of loosing a bond and connection with my partner due to cancer treatment and the lonliness of sharing the same bed with a man who once connected with me on a sexual level and who enjoyed my sexuality to lying awake listening to that same man snoring away next to me knowing that he has pretty much lost his understanding of what we used to have and that I am now alone and that the sexuality that once bonded us is now my private torment. Its 3am in the morning but I have been too upset to sleep seeing another partner of a prostate cancer patient and recipient of hormone treatment set upon by people because she has not been able to just supress her own sexuality in response to her partners medical condition. Might I suggest that as far as I am aware the reason men and women form partnerships and become couples is because of their sexuality. I know that if I were in a relationship not based on.mine and my partners shared sexuality I would probably be in a relationship with a woman as I have not met too many men who were into shoe shopping and interior decorating. Lying next to a partner night after night who no longer wants you as he once wanted you is painfull and lonely enough...yes there is a medical reason but it doesnt make you feel less lonely when you cant even explain it too him. But to launch an attack and lash out at someone for expressing their emotional pain just because they arent the one with the physical pain is narrow minded self righteous and utterly pathetic Given they no doubt submitted their post in the hope for some understanding on a thread about the subject it is you who call her a self centred narsicist who should hang your heads in shame. My heart goes out to you Jojo I miss the man who used to want the woman I am too.  I hope that if my partner is lucky enough to recover from the cancer that he is also lucky enough to recover from the treatment and I can have the same man with the same personality back in my life. I might get neither but I hope for both and if its narcisistic to feel pain as I feel cancer taking him away from me piece by piece then I must proclaim myself as much a narsicist as anyone else who would feel pain at the prospect of loosing their partner.

Karen

PS please forgive grammatical errors..written on mobile phone in the dark in early hours of  the morning of a sleepless night.

ob66
Posts: 215
Joined: Apr 2010

     It has been a horror story for my wife. Lupron, changing her menu to an Asian/Med diet, worried about her spouse dying and what it means to her, not to mention her love and support. With you it is a narcisstic worry about which antidepressant to take today. Poor you. I would never wish CA upon you or anyone else. Reach back and try to find some compassion (doesn't come in a prescription).

Mark58
Posts: 29
Joined: Jun 2004

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!!!

Julie42
Posts: 1
Joined: Feb 2010

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.

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

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
Posts: 20
Joined: Oct 2009

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

Trew
Posts: 891
Joined: Jan 2010

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!!

macguy's picture
macguy
Posts: 18
Joined: Nov 2009

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's picture
erisian
Posts: 109
Joined: Dec 2008

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.

Trew
Posts: 891
Joined: Jan 2010

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

gator880
Posts: 21
Joined: Aug 2009

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.

Trew
Posts: 891
Joined: Jan 2010

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.

Virgil33
Posts: 1
Joined: Feb 2010

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
Posts: 891
Joined: Jan 2010

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.

Connie1954
Posts: 4
Joined: Feb 2010

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

Trew
Posts: 891
Joined: Jan 2010

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
Posts: 5
Joined: Feb 2010

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.

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

Lupron and other such hormonal treatments are a viable alternative to doing nothing, however there is absolutely no evidence that using these increases the life span by any significant measure. If you do not care about your quality of life then take all the shots and deal with the side-effects, if you want a better quality of life do not take the shots. I choose the latter and can say with complete certainty that I made the right choice for me.

Trew
Posts: 891
Joined: Jan 2010

I am taking your challenge and starting to search for info on survivial rates for those getting hormone therapy- like me. I absolutely hate the stuff and if I can find a good reason to quit, I'm quitting!

Here is one article:

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Brief_Hormone_Therapy_Boosts_Prostate_Cancer_Survival.asp

I discussed this topic with my oncologist at Loma Linda. All he would say is that a 2 year treatment plan seems to have benefit over 1 yr. My next 6-month shot is scheduled for April 22.

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

The article cited above also says:

"Because the study only looked at men with cancer that didn’t extend outside of the prostate, its results can't be extrapolated to other types of patients."

Be careful about interpreting the importance of study results to your own case. I'm metastatic HRPC, so this study does not apply to me, for example.

Trew
Posts: 891
Joined: Jan 2010

Yes, I read that, too. I do so very much want to quit eligard- but I am also a little afraid to quit.

I am having a lot of cramping the last few weeks from the radiation. You see, I really would like a nice clear concise report that would just let me get out of this whole......

Oh well. Stuck.

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

I spent plenty of time before starting treatment, after being told I had a 50% chance to survive two years and a 2% chance to make it ten years, trying to find proof that hormone therapy actually extends one's life. All studies showed either no increase of time or at most a few months. I also looked at the side effects and so should everyone else. I was told I had to have one shot to shrink the tumor or else the radiation would be less effective, so I did that one and had a successful 40 rad treatments which totally killed all the cancer in the prostate. The cancer that had spread is what has my psa over 100 again, but it is only a number, and plenty of men have psa readings in the 1000's and keep on living. My treatment is work a part time job I like, work in the garden, and play golf whenever possible and allow no stress to come into my life. I truely believe that if I had been on a steady diet of Lupron that my quality of life would be much worse, because right now it couldn't be much better.

sidneytrent
Posts: 5
Joined: Feb 2010

I am very happy that your decision to not take the hormonal treatments is the right one for you. My husband feels much better even with the Lupron side effects than he did before. Every body is different....cancer is not the same from person to person. I sincerely hope that you remain in a state of good humor and that your quality of life remains as you wish.

Trew
Posts: 891
Joined: Jan 2010

Yes we are all different. I don't like the idea of 2 more 6-month shots, but I am going to take them.

And yes, we are all different, all dealing with the same cancer that is probably different in each of us. sort of. maybe. Do I have any idea what I am talking about? LOL!

My, I do hate those shots.

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

My oncologist said that no two cancers are the same, because each cancer is made from each victim's own unique genetic material. That's also one reason that it is so hard to cure.

Trew
Posts: 891
Joined: Jan 2010

More complications!!

Humbug!!

sidneytrent
Posts: 5
Joined: Feb 2010

Trew, have you asked your oncologist about monthly injections? That is what my husband does. I don't know, but I think it is a lower dose than the injections you get less frequently. Wonder if that would ease some of the side effects? I have no idea, just a question.
My hubby hates the shots too. Heck, I hate them too!

coogamooga
Posts: 1
Joined: Mar 2013

I was diagnosed with PC about six years ago had a biopsy and showed only one section as cancerous out of 12 if I recall right it was a 6 gleeson. I decided to take the  wait and see approach..my PSA remained between 4 and 5 for five years when it jumped to an eight. This biopsy showed a gleeson 7 and 8 in 11 of the the 12 snips..Scans showed no bone cancer. I went for 45 treatments of radiation with very little side effects. Then I went on Lupron and have experienced more than moderate pain in my joint back and legs... Not all the time. I can tolerate the hot flashes but the pain is troubling... any suggestions..or comments appreciated I am scheduled for next injection in two weeks
Gleason 9
Posts: 7
Joined: Feb 2011

There are so many hard decisions that have to be made in fighting cancer. I hope my experience and thoughts here will stimulate some ideas for you.

Background: Mixed in, and around, my other treatments (RP, IMRT, Chemo & a nuclear med clinical trial: Lu177 w J591), I've been getting hormone therapy (lupron w casodex then switched to firmagon, then to lupron with casodx again, then lupron alone to washout casodex, then lupron w ketoconazole, now lupron + ketoconazole + estrogen) for about 3 years. And they have helped control PSA growth.

The hot flashes can be so uncomfortable it can drive you crazy, but they do let off in between events. Being around others when a hot flash hits ends up with people watching you sweat and turn red, thinking you're A) about to keel over or B) are very nervous for some reason. I have discovered that Estrogen patches greatly reduce the frequency and severity of hot flashes. Estrogen has its own set of side effects, but that trade-off , for me, is doubly worth taking the Estrogen since it also seems to be slowing my PSA doubling time.

I have found no good relief for the hormone related back pain but NSAIDs help. I attribute much  of my joint pain to arthritis, but the HT may be adding to that as well. In any event, the back and joint pain are uncomfortable and limiting in their own right, but are not "deal killers" for me.

The other significant side effects for me are impotence (forget Viagra etc, they don't seem to help at all), constant fatigue (I fall asleep every afternoon), and noticeably reduced cognitive function (It took me over 4 hours just to write this and spell check it using Word, I keep getting side tracked and writing stuff that doesn't matter).

Anyway, my initial response to each of the combined therapies (lupron + X) has shown at least some positive response for me. Without any active hormone treatments my PSA doubling times drop from an average of 90 days (with treatment) all the way down to 30 days or less without HT, so the trade off for me is a no brainer, at least for the time being.

Best of luck to you,

G9

 

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

Condensed July '07 PSA 14, Gleason 7 3+4 Prostascint scan showed lymphnode involvement and mesentaric artery involvement. Heard the two years get your life in order. Recently I've been below .1 PSA since August '09 after a 2-1/2 year intermittent Hormonal program with Lupron and recently Firmagon (drarelix) injections. My point is I had somewhat of a positive quality of life experience witout all the Lupron side effects. I also believe Firmagon helped in this arena as well for me since injections started March '09. Yesterday my Oncologist said to see him in two months for a psa test since it looks as though i'm now in remission. Of course my testosterone is only 67 but at least the man moobs went down a little and no more hot flases.

Wishing you good Health
Glen

Trew
Posts: 891
Joined: Jan 2010

What a day! I got up this morning and my emotions were bottomed out. I began the day sort of weepy, cried a little. Regained control, my wife got home from her swim class and I lost it again. So I went out walking in the snow/forest for three hours. Cried twice along the way. Regained control. Got back to the house about 10: 30 and ran to the grocery store for a few items, cried on the way there. Got home and cried again. I took a whole Xanax and I began to settle down. I went to a meeting from 12:30- 2: 30, came home, had a nice mid day meal and then fell asleep for 4 hours. Must hve been the Xanax.

All this I blame on the eligrad. First day I have had like this. I have spotty ups and down, but this was an outright crash and burn type of day.

Anyone else every had a day like this or am I just losing it? I feel very much under control right now and I am trying to understand this whole day.

My, I do hate eligard!

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

Yes, I've had days like that. It isn't just you.
I got on an antidepressant a while back. It helped for a while, but then last fall I had a bad spell. Of course, that had something to do with suffering from crippling bone pain. They upped the dosage, and it went back to working again. If you aren't taking an antidepressant regularly, I would suggest that you might want to ask your doctor about it. And if you are, I would still suggest that you might want to ask your doctor about it, because it sounds like it's not working.

You don't need to put up with it. It's treatable.
Like one ER doc said to me; "You don't get extra points for suffering."

Trew
Posts: 891
Joined: Jan 2010

Erisian, I really appreciated your reply- thank you very much.

One thing about antidepressants is they also have side effects and I have about all the side effects I can handle right now.

Sex is gone.
Continency is gone but gradually returning again since rad.
Energy is gone.
And I fight to keep my weight in check. If I were to put on pounds right now, I do not think I could handle it emotionally. I am trying to hang on to something that gives me a little self respect.

The last two days have been ok. I have increased my exercise and I will go on.

Extra points or not.

I still hate eligard!

macguy's picture
macguy
Posts: 18
Joined: Nov 2009

My first 3 month shot (Nov. 25) dropped my psa with minor pain at the shot site. Hot flashes and some night sweats were a bother but livable. My second shot was March 5 (a four month shot). The same tech was off on her aim this time because that night and the next couple of days it felt like I was hit with a baseball bat. Hopefully the prostate is shrinking to a manageable size.

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

Speaking from my 2 1/2 years of experience...
The key to a relatively painless Lupron shot is keeping the target muscle completely relaxed during the injection. I've had 2 or 3 shots that really lamed me up for 3 or 4 days, before I found out about relaxing.

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Yes we are old survivors from a cancer that keeps being young.
This thread is one year old but the story repeats many times over the past decade.
The impressive on treatments to “kill” the bandit is that they are not successful in killing the cancer but have most success in severing our status. Just as Virgil33 above comments in his 23 years story “Hormone blockade is MUCH less morbid”.
Lesser "morbid" than HT, only “doing nothing” as 2nd Base.
Eligard has been friendly to me since our “marriage” on this first 6-month shot. I hope for a “divorce” in one year and then marry again for 18 months.

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

i too was leary of lupron. i have researched it until i'm blue in the face. i have listened to stories from other p/c patients. some do well, some don't. here's the bottom line mitch. everyone is different. you really don't know how you are going to do until you have to try it. i haven't had an injection yet but it looks like a real possibility in the near future. we are similar in that i am in good health, retired, finanically secure, good wife, etc. my thinking has changed in that if the times comes in will take the injection and just deal with it. good or bad.

ob66
Posts: 215
Joined: Apr 2010

Just over one year ago today, I was put on lupron. If you look back on this thread and others that predated April 2010, I read everything I could. For, I was getting lupron on April 12, 2010 and then climbing on an airplane two days later. These threads, earnest as they were, scared the living daylights out of me. Should I cancel my 3 week cruise, etc.????

Well in my case, nothing happened. Well, I have to admit to a little injection site pain for two to three days. That was it. Period. Yeh, I was probably lucky, but it can be that way. So now it is one year later, and I get lupron every 4 months. Just had an injection yesterday morning, played golf immediately after (lousy score blamed on lupron) and then came home and sat on a heating pad at my computer for an hour or so. Little discomfort last night. Nothing today. It can be OK.

Oh yes, I failed to mention the hot flashes. They are a part of your life. I visit my feminine side about 7-10 times a day/night. My expenditure to have a 0.01 PSA for over a year.
But I look at hot flashes as my down payment on what I call my "Lupron Vacation"---meaning no worry about PSA for two years. When you have a post of 8.0 Gleason, you do what you need to do to avoid recurrence. Ain't so bad. Hope this helps.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Lupron I have been on since May of 2010 and the effect have been very low or good. If a group of doctor's at MD Anderson cancer center thinks it's good, i would think I it's good.

I think you should look to Zytiga + predisone and Lupron as your answer. Now for a year or 13 months the PSA is >1 or 0.7 psa and my tumor's have stay the same size.

 

Good luck

Ralph

butteguy
Posts: 2
Joined: Mar 2013

I had the surgery followed by 44 radiation treatments in2007 due to very high PSA  and Gleeson score. I managed for about one year then the Psa started to rise again so my physician put me on Luprin.  I was advised of the side effects.  Hot flashes were minimal and only lasted a short while, loss of Libido was evident but allowed for new relationships based on a higher plain. The difficulty I have is the significant loss of strength and stamina.  However, at 72 some of that is natural.  All I know is that my life has been extended and no recurrence of the high PSA.  Of course the cancer is still there but manageable. They have no idea how long I have but one fellow had lasted 6 years and still gong strong on it.

klinefinancial's picture
klinefinancial
Posts: 19
Joined: Sep 2001

Lupron is a nightmare....the docs talk jokingly about hot flashes and women love that you experience what they do in menapause but that's just the tip of the iceberg and the side affects are cumulative...........I was on intermittent hormone blockade for 6 years and then on constant blockade for 6 years......I think the quality of life on lupron and castration drug combos are just not worth whatever extension of life you might get.....if i had to do it again I would do no treatment and live the fullest life.....

I am now off everything for 2 months and not going to do any more treatments....my psa is stable at 199....I have no pain or discomfort from the cancer.... but here is the total list of lupron side effects so you know what the trade off REALLY is.

1.  Hot flashes and irritability

2.  Weight gain and loss of muscle mass and strength

3.  Short term memory loss and loss of brain function - I could no longer function in my financial services business

4.  Loss of libido and penis shrinks to about 1/2 the size or less

5.  FATIGUE FATIGUE FATIGUE....that leads to depression 

6.  Extremely long recovery process and may never get testosteone back

7.  All body hair except beard and hair disappears

8.  Did I say IRRITABILITY

9.  Then along with the lupron you will get a whole passel of other drugs like casodex, nilandron, DES, dexamethasone, prednisone, aberaterone, ketoconozale..... etc etc etc....and they all suck too....

10.   So my advice is make peace with your life and enjoy what there is while you can live it fully instead as a castrata.....

 

 

 

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

In Buddhism two of the terms are Wrong Thought and Right Thought.  When I read many of these posts, Wrong Thought came to mind.  Pca is NOT about dying, it is about LIVING.  What nonsense about when the day is coming, 6 months, two years, today, never!!!  It is coming and you are one of the lucky ones who has definite advance notice that it is time to take total control of your life NOW and get on with the work you came here to do.  Yes, life will not be the same as not having Pca, but THAT is the message!!!  You are on notice that old ways of thinking, old ways of being, and taking things for granted aint gonna work anymore.  The New Way is being in the moment, accepting what you are being given (without judgment) and being grateful for the experience, even if you do not like what you are being given in the moment!!! 

   My experience is that I was given everything at birth.  Wealth, 6’2” blonde, handsome, athletic.  But also I was give inferiority complex, manic depression, and everyone in my family and my first wife’s family is alcoholic.  And I found that the gifts that had the most value were the alcoholism and mental diseases.  These gifts are what produced the movement that changed my life.  I learned to give up (release) the wealth, the desires, the cars, the toys, the women, the jewelry, the ego and all the other  garbage that I was so sure was going to make me happy.  Now I own nothing, not a car, not a cell phone, nothing.  Money has no meaning whatsoever except for food and shelter.  You see, life is not about GETTING it is about giving up or releasing.

  So the Truth is that the more you give up the more you get, but not in the way most think.  About passing.  Passing is releasing life, it is about the ultimate give up.  I look forward to passing because in my life, without question, I have received huge reward for each thing I gave up or released. 

This is the lesson of Existence. You are not here to get, you are here to give – LOVE.  Now, when I release life, there is no question that this ultimate release will also have the ultimate reward.  Nobody knows what that is, but I will guarantee that it will be a huge step forward and a great gift.

   Time is the invention of man to measure.  In the universe, time does not exist.  There is simply Isness that is eternal.  Why measure what is happening by time?  Read The Short Happy Life of Francis Macomber by Hemmingway if you want to understand time and its relationship to man.  In other words it makes NO difference how much time is left.  What makes the difference is what you do in each second in each here and now instant to create love for yourself and all your brothers and sisters of mankind.  You are on notice that time is of great value now and the opportunity to create your new life is limited.  You want to know what to do?  They moved my spirituality post to that section.  This may not be your path, but it is not a bad place to start.

  If you have any doubts about what I say or how I live, can you think of any way that offers Better Thought or Better Life?

 

Always Living Love All Ways.  Swami Rakendra

outraged
Posts: 3
Joined: Nov 2013

Come on guys what in the world is a hot flash?...the english definition of a flash refers to a sudden brief burst of bright light...what are you talking about with flash a lightening bolt or a bright idea or something?. It s a "hot flush" refering to the a reddening of the face, skin, etc., typically caused by illness or strong emotion....the way you guys transcribe the queen's english is a constant source of amusement!

ladyscout
Posts: 2
Joined: Jun 2014

My friend has been on Lupron for 18 months and his PSA went from 1600 (not a typo error) down to 1 in about 4 months.  It stayed low for about 14 months.  It is now back on the rise and he is still getting the shots every month but is on different pills.  He had not side effects except for hot flashes.

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