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lupron depot therapy

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

just joined yesterday 8/10/10. i would like to hear some patients stories that have taken lupron depot for prostate cancer. my urologist is suggesting that i begin this treatment and i want to investigate it more. specifically your side effects. from what i have found out some men tolerate it well and others it's a living nightmare.

Trew
Posts: 892
Joined: Jan 2010

You are heading in the right direction....

Welcome to our club.

mrspjd
Posts: 693
Joined: Apr 2010

Hi Calif,
Welcome to the forum. PJD started on triple ADT (Androgen Deprivaton Therapy--aka, hormone therapy) 3+ months ago. It includes Lupron Depot, the 22.5 (3 month injection), Casodex and Avodart. He chose ADT in combination with RT for his primary treatment, opting not to have surgery, even though it was a choice. He will be starting adjuvant radiation therapy in a few weeks. To date he has had two 3-month Lupron injections, and, fortunately has had no significant side effects. His testosterone and PSA levels have responded well by decreasing as intended. We hope this excellent reponse continues. Only time will tell as sometimes pronounced side effects can take 4 or more months to become significant. In PJD's reasearch, ADT in combination with RT (as a primary combination PCa tx) had comparable survival and recurrance rates to that of surgery for T3, locally advanced, non-metastasized PCa.

Most of the posts on this forum from men who have had ADT address the potential & sometimes terrible side effects that they have suffered. If you haven't already done so, I recommend you read several pages of threads/posts where you will find answers to your questions about specific ADT side effects (from Lupron or Eligard or Degarelix, etc). Sometimes I think this gives ADT a bad "rap" and that perhaps others that have had good results with ADT are the silent majority. We have personally talked with many men (in face to face PCa groups) that have been on ADT (with Lupron) for intermittant periods of time as well as long periods of time and although there are side effects, they report good results, tolerating the drugs, and not "suffering" from side effects. As you have written, every man's chemistry is different, and there are various forms/uses of ADT, as well as different ADT drugs, so it's almost impossible to predict how ADT will effect you. You are wise to solicit feedback. It's best to be informed & educated about potential ADT side effects and PCa treatments.

Whatever tx decision you make, hopefully it will be because you have thoroughly researched your options and believe the benefits & potential side effects outweigh the risks. From the many posts on this forum, no PCa tx is without risks and side effects, immediate or in the future. You did not post your stats or why your doc is recommending Lupron, alone or with Casodex, whether you are staged at T3 or T4, whether you are considering ADT/Lupron for primary tx, adjuvant tx, or salvage tx after recurrance, etc. This info is helpful to know (for those who might respond to your post) since ADT has different objectives and treatment time lengths depending on your PCa staging and the goals your doctor has for you in your PCa treatment plan.

If you decide to share your PCa tx decision and journey on this forum, I'm sure you will find support from the many men and women who post here. Either way, good luck in your journey.
mrs pjd

ob66
Posts: 217
Joined: Apr 2010

April 12 I had a lupron injection, my first, after 12 days of Casodex. Based on what I had read on this forum, I was scared to death as I was getting on a plane for Europe on April 14. Guess what? Nothing. NADA. Absolutely nothing happened for the three weeks I was on a great European vacation. Then I came home, and after about 3 months (of the four month injection) the side effects hit. Soaking wet 6 to 10 times a day. Not nice, but I was still glad that lupron was holding me in a holding pattern while I got an AUS and readied myself for RT after having had daVinci surgery a year before. I empathize with the likes of Trew very much, but I cannot understand his "glass is half empty" look at life. I have been a CA survivor since May 6, 2009. Every day of my life is a gift, not a burden. I have suffered incontinence much worse than most have described here. I have lost my sex life. I have pretty bad odds for the long term. But I just refuse to whine about the cards I have been dealt. I will play them out the best I can. Since May 6, 2009 I am alive. I work out at my club, I play golf, I take long walks on the beach with my wife, I help my gdd's with soccer practice, I teach at their schools, I eat, play and love with the best. Life is good. I am just straddled with the uncertainty of cancer. When I get to life's end I may be the biggest coward known to man, but I refuse to go there now. Life is good. Life is mine. I feel like I did before May 6, 2009 (excepting incontinence) and hope the activation of my AUS on Sept. 2 to make my outlook even better. I have no idea of how little or how much time I have left. But let me tell you, I sincerely hope I never whine about where I am today, for as cr*ppy as it may be, it beats the alternative. And for now, as optimistic as I am I must get off, for the keyword is getting wet.........

Trew
Posts: 892
Joined: Jan 2010

No offense taken, ob66, at your commentary on my outlook on all this. It is ture I see the glass half empty rather than half full. My wife mentions that to me often. The combination of everything that hit me so quickly, and changed so much in my life- well, it did leave me with a bit of pessimism about all this. Others seem to do so well with this PC thingie- I am just having a very hard time adjusting to this new normal.

I am adjusting how to the latest reality that in my case there is probably not going to be a quick fix for incontiency and life as I am now living it could go on for maybe another two years before I can get an AUS. Damage from radiation is the problem I am dealing with now and the use of 8- 12 pads a day, well, I am having a hard rallying under all this.

I will try to be more positive about treatment and PC, but it will not be easy for me. No more backpacking until I get this constant dripping fixed and that, combined with other major losses- is a hard and bitter pill to swallow.

Mark58
Posts: 32
Joined: Jun 2004

I don't post here often, but I read this forum almost every day. I have been on Lupron treatment since October of '09. My PSA was 6.79 prior to my first 4 month injection. Four months later my PSA had dropped to 0.22. I have been through surgery, radiation, ED, implant surgery, and recurrance. I started this journey with diagnosis in January '04. Anyway I have now had 3 injections. The side effects are definitely there. I have several hot flashes each day and each night. Mine are usually triggered by some change in conditions, such as drinking a hot beverage or getting too warm. They are tolerable in the summer since I have on lighter clothing. The wintertime flashes are worse for me. I leave the house headed to work all bundled up to stay warm. Then as my truck starts to warm up along comes a flash. That is bothersome. I have to shed clothes real quick to keep from getting sweaty. The loss of libido is also tolerable I reckon. It's not the same as having ED. The desire or drive is gone. I totally understand Trew's half empty glass outlook. I have to work at keeping my PC in perspective. You can't dwell on all of this. It's just not productive. If I dwell on what's next or how long the Lupron will be effective I get depressed. I have finally convinced myself by talking at length with my wife that we will deal with whatever comes next when it gets here. Just talking with her helped me. I was keeping everything to myself and that's not good. COMMUNICATION is good therapy. I apologize for getting off subject, but it all seems to go together. I wish you all the best as you go down this bumpy treatment road.

Trew
Posts: 892
Joined: Jan 2010

thanks for sharing. I"m 18 months into all this. I got hit with a 6-month shot of eligard 4 weeks after surgery- I have never had a chance to see what life could be after surgery. I keep waking up to the same bad dream being played over and over. I stepped from being perfectly normal in every way to totally messed up- if I could just pee normally- that would be somehting.

I take a deep breath here and think, perhaps in another 18 months i'll feel better. Maybe I'll be able to hike the CDT yet. Maybe.

ob66
Posts: 217
Joined: Apr 2010

There was nothing malicious meant in my post. Matter of fact, I wish I could share some of my glass is half full optimism with you. It reminds me of years ago when I had a business partner who suffered depression and was on meds. I couldn't understand why he could feel the way he did about himself when he had such a great family, great wife, great and successful life. Simply put, I did not understand depression. Similarly, I am as scared as the next guy with prostate CA, and I worry at it's end that I will cave. But for now I can only do the best I can with the tools I have, and enjoy life as it presents. We are all in the throes of an ugly disease, and I only wish the best for each of us as we proceed step by step. The information, empathy, and support here are worth a lot to me and my journey. I wish you and everyone nothing but the very best.

Trew
Posts: 892
Joined: Jan 2010

I understand the grief process and have helped people through it. I have helped osme thorugh depresison, too. I can recognize it in others, sometimes. Its not always so obvious.

In accessing one's metal health there is an interesting questionarie that is can identify loss in a person's life. 3 significate losses, like death in the family, loss of job, major illness, will often trigger a depression.

When one adds up the losses connected with PC- I am really looking at myelf here- the losses start to mount up. My family doc suggested an anti-depressant but I told him "no, I have all the side effects I can handle right now." I am afraid that if I gained 15- 20 lbs it might be the last straw with me in some way I do not understand, let alone the other side effects connected with anti-depressants.

and the word from U of MI that I might be 2 yrs out from getting an AUS installed last week was just a bit hard on me, so the misery continues.

OK, suddenly I feel much better just realizing 2 years is a lot better than 4 yrs or, worse yet, that there was no fix at all in my case.

The real problem with a glass only half full is, the full part is always at the bottom of the glass and I am a bit tired sipping air.

OB, thanks for the clarification. And really, out on the trail, with a pack on my back and a few hundred miles ahead of me- I am great company. (that is assuming my sleeping bag is dry- you get my drift.)

ob66
Posts: 217
Joined: Apr 2010

And please do understand my analogy to depression was not suggesting anything but drawing a simile to my inability to understand why others can view things half empty vs. half full. Nothing more. I have perceived in your posts that your goal of backpacking on the trail is a real goal, maybe a paramount goal, to you in feeling more normal about yourself. Have backpacked and can understand, but probably not to the extent you do. Have also done a fair amount of mountain biking and I would not attempt same with my AUS tubing currently. Golf is another matter. I returned to play after each surgery and was able to play during RT. So, in a way I have not lost one of my big "carrots". In that sense I do not fully understand.
Having had the RT first, I can understand your frustration in time with getting an AUS. I am not able to share it's plusses and minuses yet, but will do so when the time comes. Since completing RT I have gone from 3-4 pads a day, to 7-10 a day, so in that sense I can feel your frustration. Golf has to have diaper + pad, for you are not always near a bathroom to change pads. Normally, I just use pads. Cheers

Trew
Posts: 892
Joined: Jan 2010

OB, I do understand what it is like to change pads 10- 12 times during the day and the worry and anxiety it creates. Its strange, but as the stictures grow the leaking actually improves somewhat- that is, I leak less as the urethra narrows. Its very narrow right now.

And everey time I get bored out and the urethra widened I leak much more than before the procedure. OB, I am pulling for you. I am not just complaining here. I am trying to let readers know the consequesces of PC are life changing for many of us. It is not just an easy cancer by any means.

mrspjd
Posts: 693
Joined: Apr 2010

Just wanted to jump back in here in case there might be some confusion about side effects from Lupron/ADT, of which there can be many, including depression--which is treatable, if one chooses to treat it. Weight gain is another potential side effect, but with a commitment to daily aerobic exercise and weight bearing/strength training, it can be kept in control. Incontinence is NOT one of the side effects from ADT. Incontinence, however, is a potential side effect from RP surgery and in some men, may be severely complicated by adjuvant or salvage RT after surgery.

Ob, will be thinking of you on Sept 2. Good luck with the AUS activation!. Looking forward to reading a postive follow-up report!

newton60
Posts: 4
Joined: Jul 2010

As I was getting my 2nd Lupron shot, I broke into a hot flash and my Uro said he could prescribe something that would help. He gave me Megestrol. It took a while to take effect, but the hot flashes almost disappeared. Several months later I thought they were totally gone so I quit the Megestrol- one month later the flashes came back and I have restarted the Megestrol.

Megestrol is another harmone, with side effects of increased appetite and weight gain, but it's sure better than those flashes all day and night. It might work for you.

Good Luck

ob66
Posts: 217
Joined: Apr 2010

Thank you both for your concern. Mrspjd, I have had the surgery, just need the activation on Sept. 2...to you, thanks....Newton, if it gets bad enough I will certainly pursue megestrol...Just don't want to entertain one more drug right now...Reserve the need to go there...Thanks both of you...

The Crow
Posts: 3
Joined: Aug 2010

One thing to remember about Lupron is that it is not necessarily permanent. When I was diagnosed in 2003, I had surgery (not successful), radiation, and Lupron plus Casodex. Other than the radiation, I have had very few side effects from anything other than hot flashes. Next month, I will have been off all hormone treatments for two years and my PSA has gone from less than 0.1 to 0.2. I don't expect anyone to say that I am cancer-free but I believe that I am and I think that makes a difference.

mrspjd
Posts: 693
Joined: Apr 2010

Crow,
Yes, that is consistent with info my husband and I have heard from speaking with men on Lupron. I was curious and wondering if you might share some add'l info about your ADT experience, such as the total length of time you were on Lupron/Casodex, whether it was intermittant (as in homone vacations)or consistent without "vacations," and which Lupron injection you were on (1, 3 or 4 month). Were you on Lupron during the RT or did you begin after, perhaps because of rising PSA? PJD started ADT with the plan to use it before, during and after RT tx. How well he tolerates it will depend on how long he will stay on it, but the thinking for now is to try for about +/- 12 months. I realize your RT was different than PJD's will be since you say you had a RP, but curious about your RT tx...how long ago was it completed and what, if any, side effects have you experienced from the RT? Thanks.
mrs pjd

ob66
Posts: 217
Joined: Apr 2010

Had my two week post RT visit today. Asked the Doctor about lupron as it relates to me, and he said much of what you say mrspjd. I will probably be on for 12 months +/-....He said there are shorter term studies out there showing that lupron for 6 months is just as effective, but he wants to see more results on this prior to recommending same. I am on lupron #2, both of which are the 4 month variety. Mine were before AUS surgery, before, during and after RT, which I just completed. My side effects from the RT are very minimal. I am not counting my incontinence, which will be addressed with the AUS activation. Gastro-intestinally I have hardly noticed a difference---minor I would say. Tiredness, yes, but not significantly greater than before my daVinci surgery in June of 2009. Hope this helps.

hopeful111
Posts: 13
Joined: Nov 2010

Have seen in readings and other postings about the short term
ADT for 6 months before external RT, ie 2 months before, during and 2 months after the RT.

Is this 6 months typical these days for this kind of ADT ? Is it something that is extended if psa and/or testosterone levels don't come down enough, or for this type of ADT, is it stopped after the 6 months until tracking from completed RT can be done ?

I realize this length of ADT would be different for those doing it for longer timeframe based on other factors; here am just asking about the
kind that is suggested as to be done before RT (I've seen it referred to as neo adjuvant or adjuvant, not sure which is correct).

PS this thread has especially been helpful for me in decisions to finally go ahead with the lupron ( 1/month for 6 months) before the RT
as relates to the possible effects, and how they differ between people and that its all a tradeoff as to needing to take treatments vs the effects those treatments might have. Also helpful to read about
attitude towards it all is important and for me that has not always been easy to have positive attitude towards many things, but can see that this is certainly the time to try to change it.

ob66
Posts: 217
Joined: Apr 2010

As you know I am one of those who has had minor side effects with lupron and would do it over in a blink. Best luck to you as you move forward. If you ever need more info, let me know and I will e-mail you whatever I have. Bob

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

i have read that in some people the side effects of lupron therapy are permanent after the treatment stops. it is chemical castration which to me sounds pretty terrifying. why would anyone want to live with all the horrible side effects lupron gives to you. i would rather just live while the getting is good and skip this drug. the manufactures of Lupron Depot did not reveal all the serious side effects that could be permanent.

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