| Senior Veteran (male)
Join Date: Nov 2007
Posts: 1,697
Hugs: 44
Hugged 50 Times in 36 Posts
Thanks: 45
Thanked 124 Times in 108 Posts
My Mood:  | Re: Do i need these? Lupron, eligard
Hi again B,
I covered some of this on the other thread, especially regarding the role and value of hormonal therapy in support of radiation for patients with Gleason 8 prostate cancer, but here are a few supplementing comments in green. Please ask whatever follow-up questions you have. Quote:
Originally Posted by bwhitney  Jim are you out there. Just got done replying to petermoo and I mentioned that I will be having hormone therapy in conjunction with the radiatin therapy. Based on research findings that hormonal therapy in support makes a substantial difference for patients with higher risk case characteristics, like your Gleason score of 8, adding hormonal therapy is becoming the norm, I believe. Dr. Dattoli has been using it in support for a long time. (Interestingly, the Radiation Clinics of Georgia (RCOG) is stingy in using hormonal therapy, though I'm not sure if they would tend to use it more in higher risk cases, especially after the key research was published. Does anyone know?)
Kind if familiar with Avodart, seen the commercials and casodex, not so much but you gave me some info. Just looked up Lupron and or Eligard. These are supposedly for advanced homone dependent prostate cancer. There is so much faulty information and so many misconceptions about hormonal therapy, and its subset, hormonal blockade therapy, which is what you will be on. I'll mention a few points, but please ask any follow-up questions you have.
First, hormonal blockade was approved by the FDA for advanced prostate cancer many years ago, but its use has evolved enormously since then. Use as supportive therapy for some kinds of radiation cancer is just one example; any source worth its salt should at least point that out - it's a very soundly established use backed by a lot of research and experience. What may come as a surprise is that there is a fairly large number of men with low-risk cases who are using just one round of triple hormonal blockade for about a year, plus finasteride or Avodart taken continuously for maintenance, as their only therapy. Results reported informally and to professional conferences are stunning: virtually 100% outstanding control of the cancer for many years (indefinitely), and side effects that go away for almost all patients within a few months of stopping the heavy duty drugs. Results for higher risk men have also been impressive, but a fair percentage of higher risk men will again see their PSAs rise in a way that indicates a need to repeat the therapy or do something else; that's essentially what I am doing.
The pioneer of this therapy is Dr. Robert Leibowitz, who practices in the LA area under the name Compassionate Oncology, with substantial support from his former partner Dr. Stephen Tucker. Though Dr. Leibowitz does not suffer fools and can come across as dogmatic, he is one of my heroes.  Unfortunately, no recent update of their research has been published, partly no doubt due to Dr. Leibowitz's ruffling some feathers, so that puts us patients in the position of going on faith more than we would like to. Their closest approach to presentation to a group of distinguished peers came at a special joint meeting of the American Society for Clinical Oncology (ASCO), the American Urological Association (AUA), and the American Society for Therapeutic Radiology and Oncology (ASTRO, recently modified name) in Orlando in February 2005. As of last year, the group was trying to get their research published.
Last I checked, I wasn't advanced. Looked up the side effects and not pleased with what I saw. The side effect question is where misconceptions absolutely abound! I've heard so many doctors and prostate cancer medical researchers who are not experts in hormonal blockade confidently spout some highly misleading information on the effects, and I've also seen highly misleading information in many other publications, including the media, a hot bed of true ignorance regarding hormonal therapy! 
If you look at information from some sources, you will come away thinking that hormonal blockade therapy will rot your bones, make you weak, lead to weight gain, make you fatigued, destroy your muscles, make you anemic, make you diabetic, destroy your libido, give you profound ED, make your joints and muscles ache, give you huge breasts that are also tender or painful, make you moody and unmanly, cost you your ability to think well and affect your memory, make you suffer from frequent, prolonged and intense hot flashes and sweats, boost your cholesterol way up, and make you diabetic, unless you have the "good luck" to die first because the drugs caused a heart attack!     Have I missed any? There are others, but those are the most prominent.
There is at least a grain truth to each one of these, but there are several key considerations that are frequently overlooked.
- First, virtually all of us will experience only a few of these side effects.
- Second, those side effects we do experience will range in severity from hardly noticeable to severe enough to make us discontinue the therapy, but with the vast majority of us finding the side effects are mild or at least tolerable.
- Third, and this is an absolutely key point, there are countermeasures to all of these side effects that frequently are highly effective. I would like to highlight here that diet/nutrition/supplements, exercise and stress reduction can each play substantial roles in decreasing or eliminating the effects. Appropriate medication can also play a large role.
- Fourth, for almost all men who are not on the drugs for more than two years, the side effects virtually disappear over several months after stopping the heavy duty drugs. (That's one of the advantages of triple hormonal blockade (with finasteride or Avodart maintenance) as sole therapy: after paying your dues for a year, it is extremely likely that your libido will be fully restored, any ED will go away, and incontinence is not an issue as it is virtually unheard of as a side effect of hormonal blockade therapy. Even for men on the drugs for longer than two years (like me in my first round - 31 months), those younger than around 70 are more likely than not to recover from the side effects; and, if they do not, surprisingly, supplemental testosterone can often safely be given.)
The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," lists many of these side effects on page 153, also covering bone density on pages 142-143 and impotency on page 151, with additional information in Appendix B, Section 4.16, page B25, which addresses some of the countermeasures. The Strum/Scholz practice, now the Scholz/Lam practice, has been the pre-eminent practice regarding side effect of hormonal blockade, in my opinion. The current practice of Dr. Mark Scholz and Richard Lam has made available an excellent publication with great practical detail on countering side effects. The PCRI's "PCRI Insights" newsletter also has an excellent article by Brad Guess published a year ago or so. I wrote a long repy about countermeasures on 5/19/2009, reply #5 in the thread "Disturbing lack of bisphosphonate therapy for bone density, mets". I would be happy to answer specific questions you have.
To me, having hormonal blockade therapy without using countermeasures is like going to war in Afghanistan or Iraq without body armor and heavily armored vehicles: just makes no sense! Yet, I find that many patients having blockade therapy have not been advised at all by their doctors about countermeasures. I'm sure that's because they just do not know better, but that's awful!
Do I need this right now? Bwhitney | Yes. If you haven't found the research yet, I would be glad to help.
By the way, in my "weakened state" with "atrophied muscles" (and, truly, virtually no testosterone) I spent seven hours doing heavy-duty deck repair work yesterday, chasing that with half a day more deck work today in 85 degree heat and high humidity. But the deck work is keeping me from going to my gym, where I can racewalk a mile in under 13 minutes if I push a bit based on a casual pace of training, and where I leg press 295 pounds and load the rotary calf machine for 330 pounds, among other resistance exercises, all for twelve slow repetitions. Wonder what I could have done if I had not been in my tenth month on the heavy duty drugs. 
Take care,
Jim
Last edited by IADT3since2000; 07-21-2009 at 08:00 PM.
Reason: Mistakenly wrote radiation instead of hormonal therapy in one place; made the change. Hope it was obvious from context.
|
Linear Mode
