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-   -   So far so good - first PSA, third round/ninth year IADT (http://www.healthboards.com/boards/cancer-prostate/652403-so-far-so-good-first-psa-third-round-ninth-year-iadt.html)

IADT3since2000 11-27-2008 08:57 AM

So far so good - first PSA, third round/ninth year IADT
 
I'm delighted to be able to report this progress on Thanksgiving Day 2008:

My PSA dropped nicely to 2.27 on November 12 from 9.53 on September 3 at about the two month point since stopping thalidomide (September 17) and resuming Casodex (September 18) and then Lupron (September 26) :D. (I'm on 10 mg of finasteride continuously, plus Boniva for bone density, simvastatin to lower the risk of lethal prostate cancer plus heart health benefit, and a supportive program of diet/nutrition/supplements, exercise, and stress reduction.)

While many of us have sharper PSA drops when starting the heavy duty drugs, my PSA declines have been slower than average during both the first and second rounds of blockade, no doubt due to the extensiveness of the cancer (1999 baseline PSA 113.6, Gleason 4+3=7 per expert, all cores positive with most 100% cancer, perineural invasion, but scans negative). I'm actually seeing the PSA drop a bit faster during the start of this third round.

I was confident that triple blockade would work again for me, at least at the start, since my PSA was at <0.01 when I stopped the heavy duty drugs the last time, but it's reassuring to see that expected PSA result. I'm fairly confident I'll have another successful cycle of IADT (IADT = Intermittent Androgen Deprivation Therapy, aka triple hormonal therapy, aka triple hormonal blockade), but the tenth and eleventh years for many IADT patients are the period when IADT no longer adequately controls the cancer. (If that happens, I'll probably try some short-term tactics and then move to Ketoconazole plus hydrocortisone instead of the Casodex.)

I am now at virtually the nine year point since that fateful first ever PSA test on December 4, 1999 revealed a PSA of 113.6. After being rejected for surgery (not a wise choice by me for my case as I soon learned) and turning away from radiation, hormonal blockade, which evolved to triple blockade within the first year and later to intermittent blockade, has been my only therapy.

I'm feeling good and enjoying life - a lot to be thankful for today!!! :angel:

Jim

dustydigger 11-27-2008 02:49 PM

Re: So far so good - first PSA, third round/ninth year IADT
 
Hello Jim. I love to read about your history. I'm 54 and was diagnosed 6 years ago this month with metastatic pc. I had a 12 for 12 positive biopsy, gleason 7 and a bone scan showed it had spread to the lower left hip bone. It is now spread to both sides. I started out on flutemide and then Eligard, which I am still on. Once the Eligard had kicked in I quit the flutemide. This worked well for 5 years but then my psa began rising. I was told that I had hit that point of being refractory. I took chemo (taxotere) every 3 weeks for 30 weeks. There was a steady progressive reduction in my psa all the way down to 1. Despite that success I would not have chemo again. It destroys your entire body along with the cancer. I have had radiation 3 times for pain control. Last summer and again this summer I had 5 sessions. Radiation from last summer has left me with a large (5" by5") burn scar on my lower back. The soft tissue that was there is now like wood. I recently had an infusion of Pamidronate. The combination of Pamidronate and radiation has dramatically reduced my pain however I am now out of treatment options but doing very well just the same. My last psa was 17 in August and my oncologist does not want to do any more psa tests. He now says that we'el treat the patient, not the psa. Of course any new tests will just continue to show a rising psa, so I do agree that it's not that important to know. My path to 6 years has been a little different than yours, but knowing your sucess gives me hope. You are doing amazingly well and you are still responding to the harmonal blockade. We both have already beat the statistics. I'll continue to read your posts for new ideas and information. All the best to you. Dave

dustydigger 11-27-2008 03:07 PM

Re: So far so good - first PSA, third round/ninth year IADT
 
Jim, I forgot to ask you. You have described your case as challenging and unusual. Are you referring to your course of treatment? Hope I'm not being too nosy. Dave

flyfisher37 11-28-2008 08:10 AM

Re: So far so good - first PSA, third round/ninth year IADT
 
Hi Jim,

I'm glad everything is going well for you. From what you described, you certainly did have a difficult case!

One question comes to mind: How long do your sessions with the latest hormone therapy last? When I first talked to my urologist, he mentioned hormone therapy and said it would be a year and a half of treatment. Does that sound about right? Of course I don't know what he had in mind after that.

Have a happy Thanksgiving and I hope everything continues as well for you....Lionel

IADT3since2000 11-28-2008 09:34 AM

Re: So far so good - first PSA, third round/ninth year IADT
 
[COLOR="DarkGreen"]Hi Dave,

I'm glad my story has given you some encouragement. :) That's one of the reasons I post it and update it. So many of us have heard discouraging words from doctors we think are in a position to know :confused: :(, but for many of us the reality can be a lot better if we are able to find our way to more effective care :cool:. That was certainly my case, and I've long ago thrown out that initial prognosis of five years - three good years (under treatment) and two declining years (with end stage treatments) from a respected doctor at the City of Hope (second opinion) and a totally independent respected doctor at Johns Hopkins (third opinion), both highly regarded institutions. I still think well of these doctors who meant to help me, but they were just totally unaware :( of the superior options I found. I think you have a good chance of actually being in the same boat, and I'm inserting some comments in green in extracts from your post. Just remember that, though I am a highly experienced patient who has invested a lot of time and effort in educating myself about the disease, I have had no enrolled medical education and have no medical credentials.

In answer to your second post, my case was (and probably still is) challenging, as indicated in that sentence about my diagnosis, but the unusual course of care that I've been on has been quite tolerable to me. Also, the individual elements of my therapy (or even heavier duty versions, such as Zometa instead of Boniva), are widely available in the United States, provided a patient can find a doctor willing to use them (my solution). There are a few highly talented and knowledgeable experts, but it often takes a willingness to travel long distances and perhaps also a substantial investment to get their personal, world-class services.[/COLOR]

[QUOTE=dustydigger;3806359]... I'm 54 and was diagnosed 6 years ago this month with metastatic pc. I had a 12 for 12 positive biopsy, gleason 7 and a bone scan showed it had spread to the lower left hip bone.
It is now spread to both sides.

[COLOR="darkgreen"]Do you have just a few metastases or many? The reason I ask is that there is some highly encouraging research about treating patients with a few metastases with local therapy, such as therapeutic (vice palliative) surgery and/or radiation at the site of each met.[/COLOR]

I started out on flutemide and then Eligard, which I am still on. Once the Eligard had kicked in I quit the flutemide.

[COLOR="darkgreen"]Temporary use of an antiandrogen drug like flutamide to prevent or minimize "flare" is common therapy, and appears to be very important for a patient who may already have metastases. (Flare is the increase in PSA (indicating a possible increase in the cancer) resulting from the very temporary surge (lasting perhaps one to two or three weeks, as I understand it) in testosterone from an LHRH-agonist class of drug like Eligard, Lupron, Zoladex Trelstar-LA or Viadur, before those drugs cause a plunge in testosterone.)

However, I'm personally convinced that most of us will do better when we [U]continue[/U] the antiandrogen along with the LHRH-agonist. That combined approach was pioneered by Dr. Fernand Labrie from Quebec. It is still controversial, mainly, as I see it, because researchers studied its effectiveness in groups of patients that were virtually all late-stage, a clinical situation where we now know that combined therapy (or single hormonal therapy) does not work as well as it does for earlier stage disease. While studies in earlier stage patients have been at the individual practice level and somewhat less formal, results for many patients have been spectacular. In brief, the antiandrogen drugs work by blocking the docking of testosterone and some other fuels for prostate cancer with the prostate cancer cell. (Casodex is a more effective, more convenient, and more tolerable options than flutamide, but it is also more expensive.) I'm convinced that results are even better when a third class of drug is added, a "5-alpha reductase inhibitor", with finasteride (formerly Proscar) and Avodart as the two choices available. This third class of drug has at least two effects, but the main one is preventing almost all of the conversion of any testosterone that escapes the LHRH-agonist hormonal blockade to dihydrotestosterone (DHT), which is a far more potent fuel for prostate cancer than testosterone; the other important effect I know is reducing blood flow to tumors. That triple blockade therapy is the one that has worked so well for me.[/COLOR]

This worked well for 5 years but then my psa began rising. I was told that I had hit that point of being refractory.

[COLOR="darkgreen"]I'm convinced that so many doctors reach the conclusion that a patient is refractory too early, and when I hear and see this kind of statement it makes me a bit sad :( and also a bit angry :mad:. It's possible that your adrenal glands have just found a way to indirectly produce more testosterone, and therefore more DHT, despite the Eligard, which blocks only testosterone produced by the testes. If I were in your situation, I would at least want the doctor to try continuous flutamide (along with the Eligard) to see what effect it might have on the testosterone. Since that has not been done, I don't see how the doctor can soundly conclude that you are refractory!

Has your testosterone ever been tested, especially now? It should be down to around 20 or below to achieve an ideal level of blockade. Has DHT ever been tested? It should be very low, probably below 10, and levels below 5 are often achieved by those on triple blockade.

I'm not being overly critical of your oncologist as I've run into similar levels of expertise (or its lack!) in surprising forums. Partly because my case is "interesting" medically, I've attended quite a number of cancer-oriented medical conventions and panels charged with reviewing prostate cancer research proposals. I'm disappointed but no longer surprised to find that doctors are overly ready to label their patients "refractory." My impression is that such an inferior level of expertise is typical - it's the conventional wisdom. And we patients suffer the consequences!!!!:mad:
[/COLOR]

I took chemo (taxotere) every 3 weeks for 30 weeks. There was a steady progressive reduction in my psa all the way down to 1.

[COLOR="darkgreen"]I'm not so familiar with chemo, but I know that taxotere is the main drug used.[/COLOR]

Despite that success I would not have chemo again. It destroys your entire body along with the cancer. I have had radiation 3 times for pain control. Last summer and again this summer I had 5 sessions. Radiation from last summer has left me with a large (5" by5") burn scar on my lower back. The soft tissue that was there is now like wood. I recently had an infusion of Pamidronate. The combination of Pamidronate and radiation has dramatically reduced my pain

[COLOR="darkgreen"]Pamidronate, aka Aredia, is one of the more powerful bisphosphonate drugs used to help preserve or limit the loss of bone density and perhaps to help a bit against bone metastases. There is a much more powerful (also more expensive) option, Zometa. It is even known to reverse bone metastases in some patients. However, there are some unusual but serious side effects to guard against.

Here's my big question, and I hope your answer is yes, though I expect it is not. Have you been on any bisphosphonate (like Fosamax (Alendronate), Actonel (Risidronate), Aredia or Zometa earlier in your hormonal blockade therapy? The LHRH-agonist drugs, like Eligard, result in some loss of bone density for many of us, unless we protect ourselves with a bisphosphonate drug. (I've done that, and after an initial unprotected loss of some density, my bones have returned to virtually normal!) [/COLOR]

however I am now out of treatment options but doing very well just the same. My last psa was 17 in August and my oncologist does not want to do any more psa tests. He now says that we'el treat the patient, not the psa. Of course any new tests will just continue to show a rising psa, so I do agree that it's not that important to know.

[COLOR="DarkGreen"]I'm glad to hear you are doing well now, but my view is that you are far from being out of treatment options! However, it does seem that your doctor is out of treatment options, and you have a good shot at changing your course, as I see it, by getting another doctor who is more focused on recent advances in treating prostate cancer. Canada is a huge country, but there are a number of highly expert Canadian doctors treating prostate cancer, and I'm sure there are others who are not so expert but who are able and willing to implement the protocols recommended by the experts. Yes, if you continue on your present course, the PSAs will no doubt rise. But you have a shot at again bringing the cancer under control. If additional blockade does not work, as outlined above, then other tactics that have worked for many include Zometa, Leukine, Ketoconazole with hydrocortisone, transdermal estrogen, and others. I think you will find Dr. Myers' recent book extremely helpful and encouraging: "Beating Prostate Cancer: Hormonal Therapy & Diet".
[/COLOR]


My path to 6 years has been a little different than yours, but knowing your sucess gives me hope. You are doing amazingly well and you are still responding to the harmonal blockade. We both have already beat the statistics. I'll continue to read your posts for new ideas and information. All the best to you. Dave[/QUOTE]

[COLOR="darkgreen"]I wish you the best in dealing with your case at this key juncture. I was fortunate to run into a surgeon who was substandard in approaching prostate cancer at the very beginning. I say fortunate because I had to work through the wrenching decision to get other opinions, and that made me realize early on that all doctors treating prostate cancer are not created equal. I'm fully convinced the differences in talent and knowledge are enormous!

Take care and hang in there,

Jim[/COLOR]

IADT3since2000 11-28-2008 07:36 PM

Re: So far so good - first PSA, third round/ninth year IADT
 
[QUOTE=flyfisher37;3806773]... One question comes to mind: How long do your sessions with the latest hormone therapy last? When I first talked to my urologist, he mentioned hormone therapy and said it would be a year and a half of treatment. Does that sound about right? Of course I don't know what he had in mind after that.

...Lionel[/QUOTE]

Thanks, Lionel. Yes, it was a most pleasant Thanksgiving in the company of friends!

Here's the short answer to your question: yes, a year and a half sounds about right, especially if you will be on triple hormonal blockade. The long answer follows. :)

Pertinent research was published a few years ago comparing double with triple hormonal blockade in a prestigious peer-reviewed medical journal (The Journal of Urology, May 2006) by the team including Drs. Strum (medical author of "A Primer on Prostate Cancer"), Scholz (with Dr. Strum a driving force behind the Prostate Cancer Research Institute), and Lam, and their research colleagues. That research convinced me I should again stay on full triple hormonal blockade (for me, Lupron, Casodex and finasteride) at least for the later of thirteen months or until my PSA drops below 0.05, with that PSA target based primarily on other research by the same team leaders, and because I would like to know if I am doing about as well as before, my goal is to stay on until it drops below 0.01, as it has twice before. If it's clear the PSA is not going to drop below 0.05, then I intend to work with my oncologist to start some other therapy, either in addition or as a partial replacement.

At the time of my first cycle of full triple blockade, from 2000 to July 2002, not as much was known about the ideal duration of the "on-therapy" period for intermittent triple hormonal blockade. Based on research published in the paper mentioned above, it now appears that patients do better with at least 13 months of blockade, but that there is not a great deal of difference in the length of the off-therapy vacation period for on-therapy periods that exceed 13 months. I'm delighted that I do extremely well considering the seriousness of my case :D, getting about a month off therapy for each month on therapy, but the average patient on triple blockade does considerably better. Many have off-therapy periods lasting years, and quite a few enjoy lasting, indefinitely long vacations from therapy with their cancer under excellent control. :D

There is an increasing risk for staying on blockade too long, and "too long" appears to be the longer you are on it beyond about two years, especially if you are around 70 or older, and with added risk if you have been on previous rounds of blockade, as I have. The risk is that your testosterone production machinery will in effect freeze up permanently so that you will not enjoy recovery of testosterone when you go off therapy. :( (Testosterone supplementation, under [U]careful and expert medical supervision[/U], is an option for patients without detectable metastases.) I am now 65 and feel confident that I would be fine with up to two years on full blockade, but I don't want to press my luck.

Does that cover it?

Jim

dustydigger 11-28-2008 08:43 PM

Re: So far so good - first PSA, third round/ninth year IADT
 
Jim. Thanks for taking the time to respond to my post. I really appreciate the information and will take action on some of the things you have mentioned. I will continue to read your posts for the valuable information you always provide. Best of luck. Dave


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