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Cancer: Prostate Message Board


Cancer: Prostate Board Index


Two days ago I passed a major milestone: moving from the incurable state to "likely curable"! :D

I fully realize I am far from cured at this point and that I still have a PSA that moves up rather quickly in the latter months of the off-therapy vacation period from modern hormonal therapy, but after a thorough exam and review of tests, an expert believes I have an 80% chance for a cure! :D Pretty amazing for a guy who started out in December 1999 with a PSA over 100, with a biopsy of GS 4+3=7, with all cores positive, most 100%, with androgen deprivation therapy (ADT) as my sole therapy, and with a prognosis from each of two respected doctos that I likely had five years to live, with two of them in decline! This possibility of cure in the near future was unexpected. I had of course been hoping for this as a possibility some time in the future, but it took me by surprise.

I have great respect and appreciation for my local doctor, a talented and dedicated general medical hematologist/oncologist, but I'm nearing the point where I'll be starting the fourth cycle of ADT3, and the PSA pattern at the end of my last ADT3 cycle showed possible evidence of an androgen receptor mutation where the cancer has transformed itself so it can use one of the drugs - bicalutamide (Casodex) - as fuel. I decided this was the time to get the opinion of one of the leading experts in prostate cancer and ADT, Dr. Charles Myers, MD, whom many of us know by his nickname, "Snuffy".

I saw him two days ago. The most surprising thing was the result of the DRE: my prostate was virtually normal, with just one possibly questionable area! :eek: That's amazing to me in view of the fact that I have been off the heavy-duty drugs, Lupron and Casodex, since their influence mostly ran out in April 2010, about seventeen months ago. Dr. Myers also considered a recent battery of tests (PSA, DHT, 25-hydroxy vitamin D, testosterone, lipds, etc.), a thorough physical exam at his clinic, as well as all records for the past year, all scans, doctors' reports, and results from the period around my diagnosis. I had also provided a detailed chronology of all test results since diagnosis. He viewed all of this from his perspective as an expert with a practice dedicated to prostate cancer patients in which he works with more than 1,100 patients a year. My take on his comments was that the hormonal therapy I have had [I][B]has mostly eliminated cancer from my prostate[/B][/I], with remaining cancer probably located only in a limited number of lymph nodes, [I][B]where it can be precisely located with modern imaging and targeted with expertly delivered radiation! :cool:[/B][/I] This is pretty amazing stuff! :dizzy: By amazing stuff, I mean it's awesome that hormonal therapy has eliminated so much of the cancer (it's known to be able to eliminate lower Gleason score cancer) and also that there have been nearly unbelievable advances both in imaging and in targeting revealed cancer with radiation.

Dr. Myers has worked with about 250 men who have had advanced lymph node imaging, first with Combidex, done in the Netherlands, and more recently with the feraheme Ultra Small Superparamagnetic Iron Oxide (USPIO) contrast high-resolution (3 Tesla magnetic field) MRI imaging done by Sand Lake Imaging in Orlando, Florida. The former is no longer available, but the latter is about to emerge from investigational status when Dr. Bravo at Sand Lake publishes his paper about results. The paper is expected to show that a cancer in [I]any[/I] lymph node as large as just 2 mm, sometimes even down to 1 mm, will be reliably picked up by the scan and precisely located. At the Conference on Prostate Cancer earlier this month, Dr. Myers told the audience some exciting news: about 70% to 80% of his patients who were suitable for feraheme USPIO imaging turned out to have cancer in lymph nodes that could be targeted by radiation - sometimes the only cancer in the body that could be detected, and about half of them experienced PSA declines to [I][B]ZERO[/B][/I] after treatment! :eek: :cool: :angel: Many of these men had experienced recurrences that were too aggressive for surveillance and tactics involving lifestyle measures and mild medications. Some, like a friend of mine who has gone through this, had been battling aggressive recurrences for many years. They were a challenging group, making such success all the more impressive. I'll be posting more about this in reviewing the conference.

While Sand Lake Imaging is the sole site where feraheme USPIO imaging for prostate cancer is now available, Dr. Bravo and the doctors referring patients to him expect that this technology will spread rapidly and widely once his paper is published. That's because any cancer imaging facility with equipment that can muster a 3 Tesla magnetic field will be able to do the scan; all it will need is the feraheme contrast agent, and that agent has already been approved by the FDA for other imaging purposes. Obviously, this development will have a huge impact on the treatment of prostate cancer, especially advanced prostate cancer and challenging cases. It might also come to play a large role in decisions whether a patient who needs some kind of treatment (other than active surveillance) should rely on a local therapy (such as surgery or radiation) or use a more aggressive approach. By the way, for many of those now having the scan, the cost of the scan is covered by insurance except for the contrast agent, which costs nearly $1,000. That too may be covered if the FDA approves the scan for prostate cancer. I'm thinking the Bravo, Dattoli, Myers study may lay the groundwork for such approval.

I wanted to share this good news of mine before getting into the recent prostate cancer conference and also into concerns that have been raised on the Board. As for my own current situation, that last PSA test showed a continuing decline to 8.8 under the influence of low-dose thalidomide (with 300 mg of vitamin B6 to help prevent peripheral neuropathy) - an investigational approach that has worked well twice before for me. Here's how my PSAs have gone in the latter months of my third vacation period from the heavy-duty drugs, with a few results from the months around the time I went "off therapy":

12/24/2009 0.04
3/2/2010 0.03 (and steadily declining to this point)
4/2/2010 0.04 (Whoops - not so happy about that! My doctor and I
decided I might as well go off therapy at this point as my PSA was unlikely
to drop further. I had been aiming for a result of <0.01, which I had
achieved on the two previous IADT3 cycles.
6/15/2010 0.02 (That was a surprise as the heavy duty drugs - Lupron and
bicalutamide, had run their course by around mid-April. I was glad for the
decline, but it did open the possibility that the cancer had begun to use
the bicalutamide as fuel. I can explain if anyone is interested.
Fast forward to
6/22/2011 9.76
7/7/2011 Started low-dose thalidomide with 300 mg of vitamin B6 daily.
7/26/2011 10.97 While this result was substantially higher, the rate of PSA
increase had fallen sharply. This indicated the thalidomide approach was
working once again.
8/8/2011 9.48 I was glad to see this clear confirmation of success.
9/3/2011 8.8

I'm hoping the thalidomide will work for a total of six to seven months, as it had in the past two cycles, or longer. When my PSA begins to rise again for at least a month, that's likely the time I'll go for a feraheme USPIO scan. I would also have an advanced, more sensitive bone scan known as F18 to rule out spread to bones, which now looks quite unlikely in my circumstances.

Enough about me. I'm a walking example of what is possible when we succeed in buying time for technology to advance to the point that new ways of effective treatment open up. I realize there are no guarantees, but I am elated to be where I am now! :D

Jim :wave:
[COLOR="DarkGreen"]Hi Rhonda,

I've just finished responding to Allen's post #4, which is relevant to your concerns here, but I also wanted to respond directly to your post #13 of 9/29. I'll put comments in green and leave out some of the previous exchange so this does not get too long. I'll put my previous comments that you quoted in blue. Your comments are in black.[/COLOR]

Hi Jim,

Thank you for the detailed reply. I'll respond to what you've said below:

...
[COLOR="Blue"]In my own case, I'm thinking that a lot of the Gleason grade 3 cancer I had has probably been eliminated. [/COLOR]

I'm hoping that's true. Whatever the case may be, I find it very impressive that the Thalidomide is doing such a good job of keeping you off of Lupron and Bicalutamide for such an extended period of time!

[COLOR="DarkGreen"]Most of the work is done by just the triple blockade up front, with the thalidomide doing some mop-up work at the tail end of each vacation period. I'm thinking Irv may have an extended vacation, hopefully for years or indefinitely, based on a year or so of ADT3 and the Avodart for maintenance. Not many of us on IADT3 have done the thalidomide approach, but I believe it has merit. It has definitely worked for me.[/COLOR]

[COLOR="Blue"]There is now so much credible evidence that the two year forecast is simply wrong and highly misleading for many patients. The imaging and well-targeted radiation are real breakthroughs![/COLOR]

It sure gives a lot of hope. Is it Proton beam therapy that you're referring to? I'm wondering if the radiation available now would still be a huge risk for Irv of aggravating his colitis which has been in remission for about 8 years now. It wouldn't be very nice to trade off one problem for another very unpleasant one (like the idea of a colostomy...ugh).

[COLOR="DarkGreen"]I have been paying attention to results from the Dattoli Cancer Center (focused on prostate cancer) and from the radiation experts for prostate cancer in Seattle for some years. The Seattle folks are more focused on seeds, while Dr. Dattoli has worked with seeds and advanced IMRT with advanced image guidance. Moreover, he has now treated many patients with oligometastatic disease. That's probably where I would look for treatment if the feraheme imaging were favorable. However, Proton beam therapy, or perhaps another approach like Stereotactic Body Radiotherapy, probably would also be suitable if physicians expert in oligometastatic disease were available to do the planning and implementing. Colitis of course would be a potential hurdle.[/COLOR]

... I hope that makes sense and that I don't sound overly negative. I can say that, in most cases, thanks to you, I feel very hopeful for the future, but, still, sometimes I need a helping hand of support to get me back up when I'm feeling a little down over this. ...

[COLOR="darkgreen"]You're welcome. I'm glad that I and the Board have been able to help. You are helping me "pay it forward" for help I've received. To me the way you and Irv feel at this point, including the ups and downs, is quite normal.[/COLOR]

... Well, if we have to incur the expense to go outside of Canada, we will. However, what is your opinion on this? Is this something we can hold off on? I'm guessing if Irv's vacation periods are extended, then the answer would be a resounding YES! However, if the cancer proves to be more aggressive than that, I wonder if following your route with several sessions of ADT3 before it stops working would be unwise before seeking out the scanning and possibility of radiation. Afterall, we still have to keep the colitis concern in mind. I'd appreciate your thoughts on this.

[COLOR="darkgreen"]Yes, I'm convinced Irv will have success that will last for years if not indefinitely long. By then Canada may have what he needs for a follow-on, or something even better may have emerged. At the rapid pace of technological improvement for prostate cancer, I think that is quite likely.[/COLOR]

[COLOR="Blue"]That is the kind of recurrence that the new approach is apparently curing. It appears that up to five mets is a magic range - beyond that indicates wider spread disease that is difficult to cure, at least as of today. [/COLOR]

That would be interesting to know. Irv didn't have a "recurrence" in the usual sense. His cancer was just never eliminated for any period of time after surgery. His PSA was never undetectable. The unanswered question would be, then, how long has the cancer been outside of the prostate? He had a unifocal positive margin and extracapsular extension, as well as seminal vesicle invasion. His first PSA check after surgery was 1.12. The doctor seemed to think that would indicate a high probability of systemic cancer.

[COLOR="DarkGreen"]Up to a few years ago virtually all doctors, as I understand it, including Dr. Myers and other leaders in treating advanced prostate cancer, would have also thought disease like Irv's was systemic, as did Irv's doctor. However, it now looks like a large proportion of those patients is free of systemic disease and has instead oligometastatic disease. It's by now means a sure thing. There is still a large proportion that does have systemic disease, but at least there is a well-based shot at a cure for many of the advanced patients. I'm convinced that many of those who cannot be cured can succeed in turning the disease into a "chronic" disease instead of a deadly disease. Up until a week ago, that had been my goal.[/COLOR]

I'm hoping that cancer confined only to the lymph nodes around the pelvic area could account for that remaining PSA....and, if there are only 5 areas of metastasis or fewer, where could these areas be which would still offer hope of a cure? Is it possible, if they are found elsewhere in the body besides the lymph nodes, that there is still a chance of cure with radiation to those areas? Was any of this discussed in detail and would you happen to know the answers to these questions based on the information which was addressed at the conference?

[COLOR="darkgreen"]What has been fairly recently learned is that there is a strong likelihood that the cancer has gone to just a few typical lymph node sites. It is unusual for it to have gone to other "soft tissue" sites such as the liver. However, my layman's impression is that radiation would sometimes be successful for mets in sites other than the lymph nodes.[/COLOR]

... I'm not really clear on what you're saying here...Is it the Nilutamide which has the side effect on night vision and causing serious pneumonia? Or does the Flutamide also have those possible side effects?

[COLOR="darkgreen"]My English teacher would not have been proud of that sentence where the "it" was unclear. I meant the Nilutamide. Flutamide has its own issues that need to be watched and managed if needed, but not problems with night vision or potential serious pneumonia as key concerns.[/COLOR]

Also, what do you think of the idea of starting the hormone therapy again without bicalutamide and stay with it while the PSA declines and then, once you see a rise again, go back on the Bicalutamide and watch for a drop again? It worked in the case of one man who I read about. Then, if that is no longer effective, at that point switch to Flutamide. What's your thought on that?

[COLOR="darkgreen"]It's credible to me that such an approach worked. Personally, with a dose of just 50 mg of bicalutamide now, I believe (as a layman but with personal experience that applies) that using bicalutamide and Avodart with the Lupron again would be better, switching to flutamide if the need arose. Of course, that question would be best addressed when it became a reality by an expert doc.[/COLOR]

[COLOR="Blue"]Yes. Time is often on our side. It's quite possible that in time a different approach, such as safely revving up the immune system, will prove highly curative.[/COLOR]

Are you referring to treatments like Provenge here? I don't like what I've read that it extends life for only about 4 months...What's 4 months for $90,000? ....I don't get that logic. What am I missing? I prefer the idea of sensitive imaging and zapping the positive areas. I wonder if safer radiation for colitis patients will be available in the future...Again, it would be interesting to know your opinion on this.

[COLOR="DarkGreen"]Provenge is one immune system option, as is Leukine, but I was also thinking of a development we learned about at the conference. I hope to report about that shortly or add to Allen's report if he mentions it first.

As for the four months of added survival time that was documented for Provenge in the trials, while true, that's really a misleading number and too negative. As Dr. Mark Scholz emphasized at the conference, FDA Phase III trials are not designed to give us the most accurate picture of likely benefit to patients. Rather, they are designed to provide the best evidence that the FDA needs to decide whether to approve a drug/treatment/imaging system/etc. The two purposes are quite different. For instance, to get a superior idea of how truly effective a drug was, a trial would probably have to go on for quite a few years, which would greatly boost the expense and would also both delay approval of effective drugs and likely keep patients on ineffective drugs for long periods. In the case of Provenge, the trial designers estimated that tracking survival for up to three years would be sufficient to demonstrate a benefit (or a failure), and that proved out. However, as part of that plan, they only counted survival to the three year point; in other words, if a patient who had enrolled early survived for six years, his case in the trial was only credited with three years of survival. In fact, three times as many patients in the Provenge arm of the study were surviving at the three year point compared to patients in the other arm of the study. That's a dramatic difference! There's a lot more to that "four month" issue, which patients, the media, law makers and even many doctors have trouble understanding, but I hope this is enough for now. The situation for a successful drug is essentially usually much better than the approval trial suggests![/COLOR]

...More and more I'm thinking that it would be wise for Irv to have just one more injection to make it one year in the "on" phase before coming off the heavy duty drugs. The only situation that would make me question this is if we see an upturn in Irv's PSA before that (which I don't suspect, and hope, won't happen), in which case I think it would be good to eliminate the Bicalutamide and see what happens as a result of that. Even if it stays the same, at .03, I still think it would be good to hold it down for a few more months (one more injection) and then celebrate as he comes off and keep our fingers and toes crossed for a long "OFF" period maintained with Avodart....

[COLOR="darkgreen"]I think your right in getting comfortable with just a year based on what I'm hearing and reading from the experts in hormonal therapy. I've had such success with longer periods that I'm biased toward more time, but longer time is probably not adding much if anything. Drs. Scholz and Lam, continuing with some patients from the former Strum/Scholz practice, found that continuing blockade beyond seventeen months added little if any benefit, and based on other information from other practices, they are learning toward on-therapy periods of about a year, as I see it. However, I'll bet they are tailoring their approaches to the way individual patients are doing, especially regarding the pattern of PSA decline and where their starting points and overall case circumstances. I suspect they would have wanted me to continue well beyond a year if they were looking at my first cycle of treatment but in 2011.

Take care,

Jim :wave:[/COLOR]





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