how bad is hormonal therapy-Lupron

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  • ob66
    ob66 Member Posts: 227 Member
    Pitch1 said:

    Don't do it!
    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...

    Question of Pitch 1
    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
    FreddyJoe Member Posts: 45 Member
    Pitch1 said:

    Don't do it!
    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...

    Eligard-Lupron
    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
    mrspjd Member Posts: 694 Member
    FreddyJoe said:

    Eligard-Lupron
    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.

    bone loss & PCa
    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
    FreddyJoe Member Posts: 45 Member
    mrspjd said:

    bone loss & PCa
    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.

    Bone Loss
    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.
  • mrspjd
    mrspjd Member Posts: 694 Member

    adt decisions
    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.

    Hopeful111
    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