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how bad is hormonal therapy-Lupron

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

at some point i will have to decide whether or not to take lupron. i have heard so many bad stories about hormonal therapy that to me the quaility of my life out weighs the quantity. i have talked to many other men who have taken lupron and they have gone thru some terrible side effects. if it is that bad then i choose not to take it. what does the panel say?

tarhoosier
Posts: 180
Joined: Aug 2006

For me it is not quite a walk in the park but the side effects are minimal. Loss of libido is significant but it would require some serious treatments to make me potent anyway so I cannot entirely blame the drug(s). Ca.vader you can go sequential, using bicalutimide first and retain testosterone circulation and see how that works, before the LHRH drugs, or you can jump in and then decide for yourself at a later time. After a year or two you can go off therapy and maybe stay away for some years. All is reversible (for the most part).

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

It seems to me that Lupron and other similar drugs are essentially chemical castration. Depending on your circumstances, castration may be a better alternative without the side effects. Of course, there are certainly side effects to the physical solution and if you're doing Lupron or other drugs as part of a temporary therapy in conjunction with something else...a whole different story.

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

i assume kongo that you came to this point of decision yourself. what did you do? or did you do nothing?

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

califvader,

I have not had to make that choice. As mrspjd points out, surgical castration has side effects like Lupron or other drugs that suppress testosterone such as loss of libido, ED, hot flashes, etc. What it doesn't have is increased risk of heart attack or other physical ailments. I'm not suggesting surgical castration is a solution for you...just another data point to consider if you're faced with making choices. Many men (myself included) would probably do anything to avoid such a drastic course. However, other men, depending on their medical condition, age, and so forth, may find it a less onerous option that the chemical route.

Hopefully you will find the best solution for your situation.

mrspjd
Posts: 688
Joined: Apr 2010

In a recent post on another thread you indicated being on intermittent ADT-3. Might you consider sharing your process for the "vacation" scheduling of the hormones, i.e. what decision criteria determine or trigger vacations and/or the ADT re-start (time? testing stats--PSA, T, DHT levels? a combination? etc.) Also, if you could address whether you "vacation" from all three drugs simultaneously or a combination of the drugs. PJD is coming up on his one yr anniversary on ADT-3, well tolerated. We've talked to the docs and read the many studies on length of time to be on ADT (1yr, 18mos, 2-3yrs, etc.) and, as is everything PCa, it is ultimately PJD's decision. Any thoughts on the subject are appreciated. Thanks.

mrspjd
Posts: 688
Joined: Apr 2010

Surgical castration, or orchiectomy, may have the same side effects as biochemical castration (if I'm wrong on this, I'm sure I'll be corrected), and it is my belief (key word, open for discussion) those same long term side effect risks also may include heart and bone health issues because of the lack of Testosterone and DHT, which are the key factors. While surgical C may be less expensive than biochem C in the long run, it is a permanent non-reversable surgical procedure (surgery having it's own set of risks). Testosterone replacement therapy may be an available option, but that is another matter entirely. Biochemical C using ADT/hormones may be reversable, especially depending on length of time on the drugs. In other words, ADT "vacation" or intermittent scheduling plans may provide the ability to recapture certain levels of T and DHT while on the vacation portion of that scheduling, thereby allowing the patient some level of return to "near-normal" male hormone balance and also potentially reducing/lessening some of the long term side effect risks from continued consistent (without a vacation/break) ADT usage, such as, but not limited to, heart and bone health issues.

tarhoosier
Posts: 180
Joined: Aug 2006

With the support and approval of my oncologist I stay on ADT3 for at least 12 months with a nadir of undetectible, <0.05. Then I miss the next LHRH injection and maintain Avodart for DHT suppression. The two off times have been nine months until psa reaches 1-2. This allows (for me) a return of T and reduction of all side effects. My T responds promptly in 2-3 months and climbs precipitously. This is likely due to my age, now 63. PSA follows, lockstep. PSA doubling time is relevant here because mine is ~30 days during the off treatment period. Re-introduction begins with bicalutimide followed by Zoladex, in my case. I am tested monthly both on- and off-treatment. When treatment resumes I have, so far, had a prompt reduction in psa and this is heartening. I re-started about a month ago. My out of town oncologist supervises my treatment but I have ADT injections at my local urologist where I was diagnosed, but who is not responsible for my continuing care, except for whatever uro issues may arise.
I recall being in the office of a doctor and the day-at-a-time calendar was finished and the remaining statement on the wall was "Today Is".

mrspjd
Posts: 688
Joined: Apr 2010

Both PJD and I thank you very much for sharing your info. We find it very helpful and are happy & encouraged to read that upon resumption of ADT from vacation periods, your response is continuing. That is truly heartening news. Wishing you every success, now and in the future.

Today is...the first day of the rest of your life. One day at a time. And, affirming your astute observation: Today Is.
Best,
mrs pjd

ob66
Posts: 214
Joined: Apr 2010

I will share my experience. My PSA rose slightly, and my team wanted me on lupron (had a trip planned I wanted to fulfill) to cover me until I could follow my daVinci with RT. So on April 12 I had my first ever (have had three now) lupron injection. I read everything in books I could about it, and then came on this site. Those who had bad experiences with lupron must be the ones who write on this site, for I was scared to death before my injection. And I was to leave on a three week European vacation April 14. On the first injection I had Casodex for two weeks in advance, so nicely I experienced NO problems on my 3 weeks abroad. Near the end the hot flashes started. Slowly at first, then increasing to 8-10 times a day. There was a slight injection site discomfort in my gluteus maximus for a couple of days. That was it. And that is the way it has been for all three of my 4 month lupron injections. I am having a hot flash as I type, but would I go without. No way!!!! No, when I weigh going without lupron versus having to take my hankerchief out and wipe off some perspiration in front of friends occasionally (as I did at a Christmas party last night), I will opt for lupron any day. The second thing is that when/if I ever need it for rapidly rising PSAs, I now know it works for me, for my PSA, on ultrasensitive, was reduced to zero. Hope this helps.

tarhoosier
Posts: 180
Joined: Aug 2006

Ca.vader:
I mentioned elsewhere that I believe that for men with small amounts of slow growing tumor, intervention with Avodart, Vitamin D supplementation supported by testing, diet restrictions, and maybe some other non toxic additions may provide you with additional time to consider your options.

Pitch1
Posts: 3
Joined: Apr 2010

Don't do it unless your cancer has metastasized!!!!
I had my first shot five years ago while cancer was still contained and I have had successful Brachytherapy and I still suffer from all the terrible side effects to include the most insidious of all, complete loss of muscle mass, even though I lift weights everyday...testosterone levels still near zero, last shot was 1-1/2 years ago. Had my doctor been completely HONEST with me and told me there was a good possibility I would never produce testosterone again I would have never allowed that guy to get near me with a syringe full of Eligard...Eligard is a last change OPTION ONLY...don't allow a doctor to castrate you by liquid unless you are on your last leg and have PC all over your body...the side effects are unbelievably BAD; let me repeat UNBELIEVABLY TERRIBLE...and Eligard screws up your entire metabolic system, to include not being able to burn stored body fat efficiently, no libido, no erections, no muscle, just a big BLOB OF F______ FAT...NO LIFE....let me repeat...you take this drug at your own risk of screwing yourself out of the chance for any sense of a normal life...this treatment should never be given to any men with low grade non metastasized PC...it ****ed me out of any chance for a decent life...even though I am now cancer free...

Trew
Posts: 891
Joined: Jan 2010

Pitch- I was hit with eligard, too. the doc sent his PA in to do the dirty work with no warning or discussion what i was getting into. Knowing now what I know I think I would have outright rejected the shot, then kicked the PA for being such a lowly animal in the way the shot was presented to me.

I changed uros and the new doc discontinued the shots- only on for 1 year but it has been almost a year since the last 6 month shot was to be given and I am still.....

yes, I think I would kick the lowly animal who gave me that shot- but I was a stage 4 with bladder neck involvment. ah, so what- kick him anyway.

mrspjd
Posts: 688
Joined: Apr 2010

I’m truly sorry you had such a terrible experience with ADT/hormones. Many on this discussion forum have also described such experiences, only not just with ADT. Whether ADT, RP, RRP, RT (in all it’s various forms), or any combination of PCa therapies, one needs only to read about 4-5 back pages into the forum to learn that every PCa tx comes with a wide range and intensity of side effects. As I’ve written elsewhere, each man is different, each PCa is different, each man’s PCa staging and personal history is different, every man’s biochemistry is different, every ADT drug and/or combination of drugs is different, length of time on the drugs can make a difference in side effects, including recapturing testosterone (assuming hormone refractory disease is not an issue), and ALL of these many factors impinge differently, separately or in combination with one another, to have a wide range & intensity of side effects for each man uniquely.

Any PCa tx is truly a personal choice and unfortunately, there is no way to know before tx how the potential side effects will affect YOU personally, even assuming you’ve “hired” the most skilled and experienced doctor(s) for your tx(s). The best thing one can do is their own research and become highly educated BEFORE making PCa tx choices, and know/weigh the worst and best odds and side effects, then understand how those may be mitigated, should they occur or are intolerable, and whether they “fit” with your lifestyle. Obviously, there will always be certain things/outcomes one can never predict.

As I’ve written before, IMHO, advising someone not to take ADT unless PCa is metastatic is like advising them to wait to put out the fire on a house that has already burned to the ground. And ADT at the metastatic stage of the disease (spread to bones/organs) may not always be the best option, as chemo and/or immunosuppressants may be other options to consider, depending on the professional medical advice of one’s PCa oncologist.

Not to take away from the seriousness of your ADT tx experience, but I did have a good chuckle at the end of your post “…even though I am now cancer free.” Probably had nothing to do with ADT and the suffering you endured while on the drugs, but more to do with your other PCa tx choices.

Thanks for sharing your ADT experience. I sincerely wish you continued success in being in remission or PCa free, just as I do with every man with PCa who I encounter, along with my husband, on our PCa journey. And BTW, at almost one year in, my husband is doing well on ADT3.
mrs pjd

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

Pitch,

I'm truly sorry that you have had such a terrible experience with Lupron and I can understand why you wouldn't recommend it. While many have experienced the serious side effects you describe there are many others who have had only minor ill effects and many doctors consider that curbing of cancer growth, particularly in conjunction with other treatment such as your brachtherapy, to be a key element in successful treatment. Many studies have shown that ADT in conjunction with radiation treatment has a better success rate than as standalone treatments.

I share your ire at a physician who would not fully explain the potential side effects of a drug (or any other treatment) before starting treatment. Since being diagnosed with PCa I’ve learned to be skeptical when doctors tend to gloss over potential downsides and prefer to do my own research about the pros and cons and discussing them in detail with my doctors before agreeing to anything anymore. Fortunately, there is now much information available for men to research their individual conditions and make informed decisions.

Your case stands as a stark example of why men need to be fully educated about their treatment choices. I think doctors and patients are most successful when there is a “partnership” in the healing process and I’m so sorry this apparently didn’t happen in your case.

I hope that over time your condition does improve.

Trew
Posts: 891
Joined: Jan 2010

I was on Eligard- same treatment- just different drug. Eligard came in something like 2- 3 and 6 month shots. I was started on the 6 month shot with no discussion, no forewarning about side effects or anything. I can't imagine a worse approach by a doctor than I got.

But some men tolerate the hormone shots better than others. why not ask your doc for the shortest duration shot offered and try it that way? If you find it is impossible for you to tolerate, go to another plan. but at least you will know what you are getting into.

Pitch1
Posts: 3
Joined: Apr 2010

I just wrote a rather lengthy and somewhat technical reply about my earlier comment and some of the other replies and it was eaten by the system when I clicked on the Preview comment button...so,
Let me clear up a few things with a shorter post:
1. Eligard and all the other liquid castration kits were all developed for use in LATE STAGE PROSTATE CANCER TREATMENT...
2. They were never intended to be used as a first line of defense, even though they have been used on an experimental basis before certain other treatments to shrink the prostate.
3. Brachytherapy is one of these procedures and by shrinking the prostate it cuts down on the numbers of radioactive seeds necessary and the procedure can be performed in a matter of minutes rather than hours, thus cutting the overall costs billed to the White House...
4. Hormone therapy is NEVER a permanent treatment; as it only buys a person time based on each individual and their particular circumstances.
5. I happen to have a great Urologist that performed my Brachytherapy and he has actually started me with replacement testosterone injections with incredible positive results with no bump up in my PSA as of yesterday...
6. Of course, no one knows what the long term effects of testosterone therapy are, especially with prostate cancer patients...so,
7. I however stand by my original statement...don't allow a doctor to administer hormone injections unless you have all the facts...and by the way; you will never read online ANYWHERE that Eligard injections could result in permanent loss of testosterone production with incalculable negative consequences to include severe and FATAL HEART DAMAGE....temporary hormone treatment is by far the most dangerous form any man could consider with long term unknown consequences...

mrspjd
Posts: 688
Joined: Apr 2010

Pitch,
You are obviously very passionate in your opposition to the use of ADT as a tx for PCa and zealous in your effort to warn your brothers about a PCa tx that had, and continues to have, horrible side effects for you, based on the continuing personal saga you cite in your posts. I’m sorry that it did not work for you and that you continue to suffer. All of us here on this discussion board, men and women alike, are passionate about the subject of PCa. In the right situation, with the right medical supervision, ADT can be a viable PCa tx, and in concert with other therapies, perhaps even life saving/extending for many men with intermediate to high risk PCa. ADT is not for every man, nor without potential short or long term side effect risks, but hormone therapies have been studied and used for years in both men and women with hormone sensitive cancers, such as prostate and breast cancers. This is not an opinion, but based in medical & scientific fact. Quality of life vs quantity of life issues are often a delicate topic on this forum and, as one might expect, are a highly personal decision when it comes to treatment choices and risks, including choices not to take or continue tx, such as ADT, chemo, etc., for intermediate to high risk stages of PCa and advanced disease.

There is a point at which passion turns to anger. The very apparent anger, perhaps rage, evident in your posts (at least to this author) is a dangerous thing if left to fester. If this is the case, I sincerely hope you consider seeking help/support to mitigate those potentially destructive emotions so as not to impact your current healing & recovery process. Good luck to you.

tarhoosier
Posts: 180
Joined: Aug 2006

Califvader may no longer be reading his thread. In any case I recommended that he could try non prescription interventions in his case. Then, if required he can move to Proscar or Avodart (finasteride and dutasteride), then, if necessary, bicalutimide. All these allow circulating testosterone and libido, though there are some side effects. Then after consideration other interventions may be considered. It is not black/white. Nothing is, in this game.

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

i went in today for another 6 month psa test. i will have the results next Friday when i see the urologist. i had my radical done at the age of 55. i am 62. i have read much information about hormonal therapy. i have also read many, many stories here about it. some men do not have many side effects while others have a terrible time. i really don't know which direction i am leaning towards yet. will i take it or not. i guess fridays results will direct me in one direction or another. to be honest with you i lean towards not. the chemical lupron really takes away a lot from your manhood. do i want that?

hopeful111
Posts: 13
Joined: Nov 2010

mrspjd and kongo and others - am reading these posts with great
interest since soon supposed to start short term adt (6mo though I realize
nothing is guaranteed in time length with all this) befor/during/after imrt.

(gleason 7, 4 of 12 cores 90%, 3 1/2 months since diagnosis,spent
researching and stressing out)

started casodex this week, for 2 weeks before lupron shot and 2 weeks after it. and then once a month shots. and then 2 mos after 1st shot the imrt.

===> My question is - I have osteoporosis, low weight, and ibs which has meant its hard to add foods high in protein due to ibs reactions.

I'm adding more calcium and vitd, trying to lift weights more and exercise more, while at same time asking if I can delay for now the
bone rx like zometa or fosamax, due to their own possible side effects
at same time will be starting lupron.

Aside from all the other possible bad effects of lupron discussed here and elsewhere, could just having the osteoporosis itself be a reason to not go forward with the lupron, since that can have big impact itself
on bone and muscle mass ?

The prostate is 23cucm so I don't know if it needs to be shrunk more,
but the adt suggested just since it seems to be a more or less standard protocol now for those with the score I have; I realize it can slow/stop the growth and probably something should have done right after diagnosis rather than now but its been hard to think straight about all of this.

Like others have written, have read or spoken with those who had few
side effects of adt or radiation as well as those who have had extremely
serious and debilitating ones, and mrspjd, in your other long post to this thread you summed up what have been telling myself about this,
and also telling myself that with the score i have, something needs to be done, waiting more is not an answer, but making that choice is so very hard.

Thanks to all.

mrspjd
Posts: 688
Joined: Apr 2010

Hopeful111,
My husband’s PCa stats are a little more involved than yours, however, he chose similar primary txs (treatments) to the ones you’ve decided on (ADT & RT). If it’s any consolation, he also took about 3 months from dx (diagnosis) to beginning tx. It takes about that long to do your research, obtain 2nd opinions, schedule add’l testing (if indicated) to accurately stage your PCa and, basically educate yourself as to what the best tx option(s) will be with the least risks for a successful outcome. So don't beat yourself up for waiting 3 months...you've made a tx decision that you, along with your medical team, believe is right for YOU and your stage of PCa.

You pose some very good questions, both in this thread and in the other Lupron thread. If you are using the one month, 7.5mg, Lupron injection (2 injections, 1 per/mo, prior to IMRT start) along with Casodex, you and your docs should have a good indication during those 2 months of whether your PCa is responding to the ADT because one would expect your docs to do PSA, T, DHT blood work during that time prior to starting the IMRT. If your PCa is responding to the drugs, and there is a high likelihood it should, then staying on the ADT for the next four months (6 mos total), during IMRT and after completion, will hopefully give you a good idea of how you’re tolerating the drugs. (You may experience more fatigue from the combined txs, but that should resolve quickly.) When 6 mos are completed, you, along with your medical team, may want to “leave the door open” to the possibility of staying on the drugs for a length of time TBD or, you may choose to discontinue them. As far as knowing your “true” numbers while on the combination of ADT & IMRT (adjuvant txs), you have to be willing to reconcile that those ARE your true numbers, at least for the time being. It can take anywhere from 6 mos to over one year for the ADT drugs to leave your system after drug cessation, and a year or longer for your nadir to stabilize following IMRT, given the possibility of RT bounce effect.

Your exercise program seems like a good start, however, bisphosphonates (i.e. Zometa, Fosamax, Boniva, etc) may be necessary, ADT or not, given your pre-existing dx of osteoporosis. I understand your reluctance, given your ongoing dental issues and, if at all possible, it may be important to resolve those dental issues sooner than later. Necrosis of the jaw, which I assume is one of your concerns, is more often associated with long term continued use of bisphosphonates and dental work but may not be an issue if your ADT is short term or even intermittent. A serious discussion with your PCa oncologist about the pros and cons of bisphosphonates for your osteoporosis along with ADT tx is in order. Bone and heart health issues are potential side effect risk factors, especially with long term continued ADT use. Prior to starting ADT tx, my husband had a bone density test to establish his bone density baseline. He also saw a cardiologist for a complete work up, even though he had no prior heart issues, to establish a baseline in terms of his heart health.

From reading your other posts in different threads, I gather you have some unique IBS dietary challenges and many questions regarding diary, calcium, and protein nutritional intake related to those challenges. If you haven’t already done so, it might be wise to schedule a consult with an experienced registered dietian or nutritionist and, in particular, one that is familiar with issues of cancer txs & diet. Hopefully they, along with your oncologist, can advise you on how best to address your special dietary issues, as it will be critical for you to maintain your strength and an optimum nutritional health level during and after tx, through diet and perhaps supplements. The Mayo Clinic website has a very good discussion on IBS that includes topics such as probiotics, as well as Celiac disease & Crohn’s disease (which I assume have already been ruled out as potential causes of your IBS issues). That link is: http://www.mayoclinic.com/health/irritable-bowel-syndrome/DS00106

Wishing you all the best.
mrs pjd

ob66
Posts: 214
Joined: Apr 2010

Pitch, let me preface what I say with I have some difficulty with your emphatic all or none statements. But with full knowledge of your distaste for lupron, and with consideration to point #4 above, do you really stand with "Hormone therapy is NEVER a permanent treatment, as it only buys a person time based on......" Tis' the latter part of the statement I would like to discuss.

Sounds somewhat reasonable to me, but now I want you to consider something. I had daVinci surgery in June 2009. Then my PSA stayed down at 0.05 for nine months ( the ultrasensitive type). After 10 months it elevated slightly to 0.07. My doctors, with my full affirmation wanted to do RT ASAP. It was done in July/August this year. After that I decided to go on a Mediterranean/Asian diet (I hope you know the details) but the long and short of it, is that between the RT and the diet I hope to deny the cancer cells the opportunity to beg capillaries toward them, to live on testosterone, or sugar, or BGH, etc. Would you like me not to be on lupron to keep the testosterone from feeding any left over PCa cells in me, or is it OK? I think it is a great strategy, but I think you feel with point #4 that I should sit down, roll over, and give it up to PCa. Now I am being a bit harsh here, but it is only because I think you were given to overstatement in your seven bullet points. I feel badly if you really feel that way, as opposed to your arguing some intellectual medical point while being a bit too arbitrary. At the same time, I think this gives good fodder for meaningful discussion on this board. The last thing we need to be is back slappers, while fully knowing that whatever ole Bob is doing ain't much.

edit to add the ps. By the way, were you to look back, I am one of those lucky stiffs who have had no side effects from lupron other than hot flashes. I understand that makes my life easier than others, but I fully empathize with those who are having trouble with lupron. You can type me a "lupron lover". Well, maybe.

FreddyJoe
Posts: 42
Joined: Dec 2010

While looking for side effects of these drugs I found Chemocare.com. They list all the drugs under the generic name Leuprolide and class these two as the same. They and some other reliable sites list possible side effects. I would like to point out that a long list of them they rate at 10 to 29% of the patients who take these drugs will have the side effects. No one can say what % we will be in.
One thing I would like to add, much has been said about posibble bone loss from radiation and these drugs. Having a bunch of hardware in a leg from a previous fracture, I was concerned about the bone loss. I decided I needed a multivitamin to get some extra calcuim. Guess what, when I read the fine print on the bottle they warn that long term use of Vitamin A can cause osteoporosis, and not to take the product if using any other suppliment with A. Now I have to read the fine print on everything.

mrspjd
Posts: 688
Joined: Apr 2010

Bone loss from ADT is indeed a very real potential risk and possible side effect. But knowing that fact, and working with your medical team, that risk can be minimized. Having a baseline bone density test prior to or just after beginning ADT can give you and your docs a picture of where your bone health is prior to any effect that the ADT might have. Also, for some, bisphosphonates, such as Fosamax, Boniva, etc., may be useful in mimimizing the bone loss risk while on ADT. In addition a program of aerobic exercise, resistance (weight) training and a heart/PCa healthy diet, with supplments that have been approved by your oncologist, may also mimimize the risk of bone loss as a result of long term, continued use of ADT.

Bone loss from radiation therapy (RT) is another matter entirely. As I wrote in another thread, total body bone loss is NOT a side effect of RT for PCa (unless you are having your whole body irradiated--but I can't imagine this?). While there may be some bone loss in the specific (pelvic) areas radiated for PCa (and that is debatable), if there is, that bone is capable of regenerating bone cells, and a daily program of healthy diet and weight bearing exercise may easily and successfully address this issue.

As in almost everything PCa, there is risk and, as such, everything must be considered in terms of the risk/benefit ratio which is a highly personal decision for each man. A recurrent theme in all these PCa threads that cannot be emphasized enough is: Do your own in-depth extended research and become an educated patient BEFORE making those risk/benefit PCa decisions. You alone are your own best advocate.

FreddyJoe
Posts: 42
Joined: Dec 2010

The problem is I have never had a bone Density test and was never told about the possible risk. I found out about this recently doing my own research. I will be seeing the Dr's soon and will have a good talk with them. I am scheduled for my supposedly last Eligard shot next month. I started my treatment when I lived in Chicago and am now in Oklahoma, none of the Doctors have been very helpful. I really can not handle a lot more medication. I was less that $100 from my Dognut hole in 2010. I have started going to the gym to get more exercise.

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