Hi Guys, in recent times, I've been reading up a lot about Androgen Deprivation Therapy (ADT) Intermittent ADT (IADT) and Bipolar Androgen Therapy (BAT).
It seems to me, from what I've read that becoming castration resistant, is the time that PCa goes from being a chronic illness to a life threatening situation.
I've read many comments on this site that continuous use of hormone blockade, eventually fails in all who try ADT but the uncertain factor is how long the treatment will last. My Oncologist told me that 18 months is about the average to move to being hormone sensitive to being hormone resistant. I've read similar things on this site.
I've read that on this site that Dr Charles Snuffy Myers tries to keep patients on ADT for as long as possible, while at the Other end of the spectrum, Dr Bob Leibowitz at Compassionate Oncology seems keen to give guys a 'Triple Hormone Blockade' followed by a 'maintenance program'. He seems very keen to get guys of hormone blockade, within 13 months as far as I can tell.
Two major figures, with two opposing views. My current Oncologist is very, very conservative. She told me that for me, the treatment is Zolodex, until it stops working, followed shortly by Docetaxel, Xtandi/Abiraterone. When I questioned her about whether this was the best course of action, she got quite short with me, "get back in your box - I'm the expert" attitude. We discussed testosterone therapy, BAT, estrogen patches etc, she barely gave any of these topics airtime, while I consider them very important.
My purpose for this post is to question what others have done and what they think about the 'best' approach. My concern comes from a Dr Bob Leibowitz comment that "Every day your on hormone blockade, you are one day closer to castration resistance - and death".
I have two kids under ten and my main goal is to stay alive long enough to see them grow up and long enough that PCa becomes a chronic, but manageable condition, rather than a killer.
I've read lots of material (and watched all the youtube videos) for Dr Bob Leibowitz. I am keen to speak with him, but being based in Perth, the other side of the planet, makes thinGs difficult. I found that there is a Dr in Singapore (much closer to my part of the world) who used to work with Dr Bob at compassionate Oncology. If anyone has any direct experience of Dr Steve Tucker, or Dr Bob, please feel free to leave a comment.
Thanks in advance,
Paul.
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I remember when Dr Tucker was with Dr Liebowitz, I have never been, but I assume they have similar approaches, In regards to the Oncologist who is short with you, fire her, if you can find another, that is a poor attitude to not respect a guy doing research to save his life. It would be good to have a local who can communicate with Dr Tucker. For me personally I did the xtandi and zytiga first , going with the old timer rule of doing treatments with lesser toxicity first right or wrong I do not know, but on the other hand after chemo it would be nice to have something in the back pocket so to speak. That being said, I had to argue with my local for (ADT3)zolodex with casodex, and an antiandrogen like bicalutamide,when I went to an expert in pca , no problem. When bicalutamide failed in those days we got more time by switching antiandrogens to go to say nilandron, before moving on the high dose ketoconazole with Lupron/zolodex and Avodart.
Thanks Dan, much appreciated. Dr Bob makes a point of maximising the effectiveness of hormone blockade, then getting off the LHRH agonists for good. When I said that this appeals to me, my onc. just said that zolodex for as long as it works is the protocol for metastatic Pca - I just think she's being lazy.
You may have to describe urinary frequency to get the dutasteride part of adt 3 and the casodex is another part of adt 3. sometimes I think they wait for Lupron to lose its effectiveness befor eadding casodex/bicalutamide.
I suppose every individual case is different. I was diagnosed in 2001with a PSA of 8. I don't remember what the Gleason score was, if I ever knew. I opted for radiation treatment that ultimately failed and have been on Lupron ever since....about 15 years. I still have my fingers crossed it keeps working.
Thanks Olman, wow that's impressive if 18 months is the average, that you've had 16 years of success. I wonder if there is any way of telling who will get a long-term result like yours, or is it just random?
I'm in your same situation: 2 guys under 10. I was diagnosed one year ago: bones, lymph nodes and maybe more, methastasis. I can't add useful information to your research but I'm interested if you discover more about Leibowitz/Tucker. I'm from Italy ... so far from everywhere ..
Thanks Enzo1. There's another oncologist group, from Switzerland (closer to home for you). Dr Ben Pfeifer see: pfeifer-protocol.com/ben-pf... or cxheck out his youtube videos.
Sometimes a totally different drug, an antagonist like Degarelix instead of the Agnonists like Lupron. Degarelix also suppresses DHT, and it's made as a single ADT without avodart Lupron or cassodex. it's usually injected in stomach just under skin with a 30-day lifetime there has been some studies that show continue benefit using it after Lupron stops working. the maker of Degarelix will send a nurse at no charge to administer your first dose and demonstrate it to your MD and his nurse for proper technique. My dad used ketoconzlazole for 7 years before aberaterone was approved as a 2nd line antiandrogen. I used cassodex 2 weeks only to prevent T surge from 90 day Lupron in my leg. it's also important with Lupron to get an experienced nurse or doctor administering it but with degarelix its even more critical that they do not hit a vein otherwise you'll get stomach pain and no lasting ADT effect. Brand name Lupron now comes with the dual needle injector to verify that the vein is not hit before administering I also took proscar during and 4 mos after my salvage radiation. I started salvage radiation as my PSA rose near 0.5 as it works best with PSA under 1. my radiation oncology doc said I should have started at .1 but we were still successful and my PSA is under 0.02 and my testosterone is back to normal 400 18 mos later. I had IGRt with IMRT using a Varian unit at UCSD.
Paul: I very recently saw a great presentation by Prof. Samuel Denmeade, MD at Johns Hopkins who runs the trials and does the research on BAT. I don't know if you have a connection with either Jim Marshall or Paul Hobson - both from Australia and very active in the Prostate Cancer community. If you do, and can contact them, either one can tell you how to access this enlightening presentation on Bipolar Androgen Therapy.
General oncological opinion has slowly changed in the past 4 1/2 years since I was initially diagnosed with bone metastases, Gleason 9 and PSA 18. Back then it was serial; ADT followed by Xytiga/ Xtandi, then chemo (docetaxol). Now, it is Chemo, concurrent with ADT, and then after progression to try Xtandi/Zytiga with ADT. Like all immature fields of medicine the course of treatment changes over time with experience. BAT is relatively new and some Dr's have had success, other Dr's fear the impact of using immensely high doses of Testosterone without a lot of trials to back it up. What could help someone else could kill you. Everybody reacts somewhat differently to every drug and treatment
I'm off to see Dr. Bob and Dr. Eshaghian in two days (after two phone consults with Eshaghian). After 10 other oncologists told me to get salvage radiation but my research and two nationally ranked cancer research centers said NO WAY IN HELL IN MY CASE (my anatomy precludes it), I began Firmagon last month and MAY begin chemo Thursday morning with Dr. Bob. I still have very serious, QOL-critical, concerns (chemobrain and neuropathy) with chemotherapy.
A local (I'm a thousand miles from Dr. Bob) patient of his credits Drs. Bob and Turner with saving his life. One of those nationally ranked cancer research centers gave him a year to live due to his Gleason 9 metastasized cancer , but on Dr. Bob's protocol he's LONG off ADT and still paying soccer 18 years later. The hell with oncologists who think their way is the only way. I will be nailing my local oncologist to the wall today with my insistence that -- right there with me in the room -- he put his phone call where his promise to comply with Dr. Bob's protocol was. i.e., he said he'd comply, but has not returned Dr. Bob's calls. It's now or never, Local Guy. That's too bad, as Local Guy is just 7 minutes away, but if he's unreachable, he's useless.
When I see guys living 18 years on ADT, though, I immediately very strongly suspect the poor buggar had a a Gleason 6 or Gleason 3=4=7 cancer, otherwise known as being a bloke. IOW, it very likely never needed treatment in the first place.
Take a look at this document, it is a series of communications on an old user board, where some prominent Dr's critique Dr Bob (both good and bad). web.archive.org/web/2003081...
I'm curious to see how you get on an whether you sign up with Dr Bob or not. I am in Perth, Western Australia, so I would probably see Dr Steve Tucker in Singapore (a fairly short flight away) as that's better than 25 hours+ for me to get tho LA!
Snuffy once publicly criticized Leibowitz's protocol. Now he not only sends some of his most challenging cases to Leibowitz, but has publicly retracted his criticism. Snuffy even used Leibowitz's protocol on some of his own patients.
You betcha I signed up with Leibowitz, just last Wednesday as our first meeting was winding up after 3:00 AM. Details later.
I would find another doc. Your current doc's attitude is unfortunate and disrespectful to you. You deserve a partner in this journey not a tyrant. Good luck and keep us posted.
For me my course was zytiga (lasted 20 months) now Xtandi, xgeva (6 bone mets), gabapentin (control hot flashes), Lupron. Once Xtandi no longer works it is chemo for me.
As others have said and as you yourself have discovered, theories of prostate cancer treatment are evolving.
If I remember correctly, the 18 month average effectiveness of ADT came from a study done at a time when it was believed that hormone therapy administered late was just as effective as hormone therapy administered early. Believing that to be true, many oncologists waited until the PSA rose quite high in order to give the patient the maximum ADT free life before beginning ADT. If that's right, I think the average could have been higher if they only studied men who began ADT quickly after PSA failure.
Prostate cancer characteristic vary considerably among different patients. Cancer is a disease of DNA mutation. Genes that control cell division and cell location (normal prostate cells cannot survive outside the prostate) have mutated so that the normal regulations of cell division fail and the cells replicate out of control. However there are many different genes involved in the regulation of cell division and many other genes involved in the repair of DNA mutation, response to immune system signals, response to hormone (testosterone) signaling, and other factors affecting cancer. One man may have one set of mutations and another man may have a different set. As a result, responses to drugs vary widely and some men may respond for 15 or more years on Zoladex alone while others only get a few months.
Right now, I think the key thing is to start your Zoladex treatment immediately. The important thing is to suppress the cancer as soon as possible, before it has a chance to accrue more mutations and more resistance to treatment. That will give you added time to find the best oncologist and/or treatment that you can. I doubt if Dr. Liebowitz would want any patient to allow his cancer to grow out of control because every day on ADT is a day closer to castration resistance and death. I'm sure he'd want every patient to get off ADT only if and when the cancer is under control without it.
What that best treatment is, I don't know. Dr. Liebowitz and Dr. Myers are both experts, and both seem to get results that are significantly better than average. I do know that the recent "CHAARTED" trial in the U.S. and "STAMPEDE" in the U.K. both show that men who get chemotherapy along with ADT, before the ADT has stopped working, live longer than men who get one followed by the other. There are reports that a combination of ADT plus immunotherapy is similarly more effective than one followed by the other. I also know that individual case histories are not a reliable guide to what to expect because each case is so different. Even big clinical trials can only give you statistical results, not good predictions of what will happen in your case. However, you have to learn as much as you can and play the odds as best you can. You appear to be doing a very good job of that.
It's a pain dealing with a doctor who won't listen. There are some fine cancer hospitals in Australia with doctors who read and do current research as well as treat patients. If you can get to one of them you may be able to find an oncologist who is familiar with current thinking by Drs. Liebowitz, Myers, and others and will work more flexibly with you.
I'm sorry that this hit you at such a young age. I hope that you will be there for your children for many years to come.
Hi Alan, thanks very much for your detailed and thoughtful reply. I actually am already on zolodex having recently had a 3 month implant (I also had one on May last year). Thanks for the advice and suggestions.
Paul, At some time in your search you may (or should!) also look into estrogen patches or gels as a pretty different approach to androgen depletion. Evidence from English trials are "encouraging" .
I take Cabergoline (Dostinex) to reduce the amount of Prolactin in my blood. Prolactin sensitizes the androgen receptors on the cancer cells. This is one of the drugs that Chuck Maack describes. I don't really know if it helps or not but the 0.25 mg that I take every other day keeps my prolactin < 3.
"Initial hormone therapy Eligard lasted around 9 years so one can easily do better than the average" ... and by definition, just as easily do equally worse than "average". That's the nature of the bell curve we all live or die by.
Seriously, you need to be able to talk comfortably and ask as many questions as you want/need. (Be sensitive to patients waiting, but not to your onco's feelings.) Not sure what stage you have, but my husband started at Stage IV at the highest levels of everything you could have (except PSA - relatively low, but that didn't matter anymore). If you are not at Stage IV, you have a lot of options. If you are, there are still many options. We are hitting 3 years.
We changed oncologists after about a month. The first one was new and conservative, very congenial but not very imaginative. It was difficult here because it's one big group that controls the area and they don't like people to switch but it is your right to have a doctor you like and a doctor that you feel like really cares about you.
Hi Paul, wondering what path you took re - androgen therapy. I've used up my elegibility for trials with previous parp and immunotherapy drugs.,and the xtandi lasted a couple of months. Now I'm trying to stop a couple of tumours in my liver from getting out of control and I'm interested in hitting it with the high level testosterone bap therapy if not least trying to resensitize the cancer for chemo etc. I've already had stereotactic radiotherapy to the liver and that worked great up until about 4 months later.
I've only just found this forum and I would be very grateful for any help.
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