Medical Forum / Diseases and Disorders / Prostate Cancer / March 2008
Med Onc Visit at 11AM
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Carl Hunt Hays III - 25 Mar 2008 13:23 GMT Gentlemen-
I'm in Baltimore this morning to see Dr. Carducci about my advancing disease. Recent bone scan looked relatively clean with possibly one spot on my spine. Recent CT scan also looks good.
PSA has been doubling rapidly (now at 18.08 up from 13.5 a month earlier) I did not respond to Casodex and have discontunued it.
I imagine it will be taxotere + clinical trial that will be suggested this morning.
Any thoughts/comments much appreciated.
I have reservations about a fatiguing therapy that might only give me 3 months more life.
Best to all- Carl
PSA 19 07/2004 @ 55 12 needle Biopsy 07/2004 G7 T2c RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh positive margins G8 in 3 of 6 left and 4 of 8 right sampled Post Op PSA 19 30 mg Lupron began 12/2004 and every 4 mo after PSA .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70 50 mg Casodex added daily 12/07 PSA 02/07 13.70 @age 58 Casodex discontinued 2/07 PSA 18.08 3/08 Seeking advice from Carducci at Johns Hopkins today
tarhoosier@carolina.rr.com - 25 Mar 2008 15:26 GMT > Gentlemen- > [quoted text clipped - 27 lines] > PSA 18.08 3/08 > Seeking advice from Carducci at Johns Hopkins today Carl:
You have some of the best in the world on your team. Regarding Taxol therapy, the Phase III trial was on men who had failed all other treatments and had significant metastatic disease with measurable bone mets, high psa, and many with symptoms such as pain, urethral strictures and so on. Men far down the path from you. Among these men about 40% failed Taxol therapy, or responded only briefly. The other 60% or so survived a median of nearly 3 years, meaning half of those who responded lived for quite a while. The significant number of non- responders pulls the overall median results down to a few months longer than for mitoxantrone. For men with significantly less tumor burden (you) then response rate is usually stronger than seen in those who were in the trial. I extrapolate from the numbers found in the Trial report to make my comments here. Please ask your team about this. Best of luck!
Steve Jordan - 25 Mar 2008 18:31 GMT On March 25, tarhoosier replied to Carl, in pertinent part:
> Regarding Taxol > therapy, the Phase III trial was on men who had failed all other > treatments and had significant metastatic disease with measurable bone > mets, high psa, and many with symptoms such as pain, urethral > strictures and so on. (sic: Taxotere is docetaxel. Taxol is paclitaxel)
Those men were true heroes. They knew that they had little hope, yet proceeded to volunteer in order to help others, such as Carl. And me when the time comes.
I have looked into the continual drumbeat of "only a few months" and learned just what Tar wrote. As my med onc put it, "they were on their last legs."
This is from the archives of the Prostate Cancer Research Institute (PCRI): "Taxotere®-Based Regimens Improve Survival in Advanced Prostate Cancer"
"One clinical trial presented at ASCO (2004 meeting) was a direct comparison of Taxotere®/prednisone to the historical standard treatment consisting of the chemotherapy agent mitoxantrone (Novantrone®) plus prednisone. This trial included 1,006 patients who had hormone-refractory prostate cancer. Approximately half of the patients were treated with Taxotere®/prednisone, and the other half were treated with mitoxantrone/prednisone. Patients treated with Taxotere® received therapy either once per week, or once every 3 weeks at different doses. Patients treated on the Taxotere® regimen that was once every 3 weeks had superior outcomes to those treated with Taxotere® once per week. The average survival for patients following treatment with chemotherapy was nearly 19 months for those treated with Taxotere®/prednisone (every 3 weeks), compared to 16.5 months for those treated with mitoxantrone/prednisone. Pain was reduced in approximately 35% of patients treated with Taxotere®/prednisone every 3 weeks, compared to 22% of patients treated with mitoxantrone/prednisone. The most common severe side effect, low white blood cell levels, occurred more often in patients treated with Taxotere®/prednisone than those treated with mitoxantrone/prednisone."
Regards,
Steve J
Carl Hunt Hays III - 25 Mar 2008 22:49 GMT > On March 25, tarhoosier replied to Carl, in pertinent part: > [quoted text clipped - 41 lines] > > Steve J ------------------------
Dear Steve and Group-
You always come through with most valuable information my friends. I remain most grateful.
I saw Dr. Carducci this morning and he suggested:
Continue Lupron for life Get Psa exactly 6 weeks after discontinuing Casodex 50 mg ( in two weeks) to see if it has caused PSA to drop XRT for painful sites Consider: Nilutamide Ketoconazole Docetaxael
He also cleared me for two Phase 1 clinical trials:
http://clinicaltrials.gov/show/NCT00326586
or
http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol.cfm?pID=J0749
Dr. Carducci is the second Med Onc to answer the question " Could I be dead in 12-18 months if I do nothing" with the word "possibly". How's that for a 59th birthday present! Gee wiz... My urologist said the same.
It's enough to make a gent take up tap dancing, I tell you.
What's a fella to do? - Carl
 Signature PSA 19 07/2004 @ 55 12 needle Biopsy 07/2004 G7 T2c RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh positive margins G8 in 3 of 6 left and 4 of 8 right sampled Post Op PSA 19 30 mg Lupron began 12/2004 and every 4 mo after PSA .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70 50 mg Casodex added daily 12/07 PSA 02/07 13.70 @age 58 Casodex discontinued 2/07 PSA 18.08 3/08 Saw Dr. Assikis in Atlanta and Dr. Carducci at Johns Hopkins-Baltimore 3/08
Steve Jordan - 25 Mar 2008 23:45 GMT On March 25, Carl replied:
(snip)
> I saw Dr. Carducci this morning and he suggested: > [quoted text clipped - 6 lines] > Ketoconazole > Docetaxael And I'd recommend getting an ultrasensitive PSA test on a monthly cycle in order to track closely what if anything is happening.
Nilutamide (Nilandron) is an antiandrogen, an androgen receptor blocker, similar to Casodex. Its "label" use is in combination with surgical castration, per www.rxlist.com Note the side effects (SEs) when given along with leuprolide (Lupron).
The "label" use of ketoconazole (Nizoral) is as an antifungal. However, it is known to reduce both testicular and adrenal production of testosterone and its precursors. It can be hazardous (what can't?) and reference to www.rxlist.com will provide details. On the PCRI site at http://www.prostate-cancer.org/education/andeprv/Lam_HDK.html is an essay entitled "High Dose Ketoconazole Plus Hydrocortisone (HDK+ HC)" on its use in PCa tx by one of the best medics in the business,
Docetaxel (Taxotere) is the only med that directly attacks cancer cells. Info on the rxlist.com site.
I pass along this information so that Carl can learn what to expect and become an empowered patient.
> He also cleared me for two Phase 1 clinical trials: > [quoted text clipped - 3 lines] > > http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol.cfm?pID=J0749 I note that the trial is very small (80) and that there is no certainty whether Carl would be randomized to the treatment arm or the placebo arm. Something to think about. Also, this is a Phase I study, which is primarily designed to determine a safe dosage level.
Here are the defined phases:
"Study Phase
Most clinical trials are designated as phase I, II, III, or IV, based on the type of questions that study is seeking to answer:
In Phase I clinical trials, researchers test a new drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
In Phase II clinical trials, the study drug or treatment is given to a larger group of people (100-300) to see if it is effective and to further evaluate its safety.
In Phase III clinical trials, the study drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
In Phase IV clinical trials, post marketing studies delineate additional information including the drug's risks, benefits, and optimal use.
These phases are defined by the Food and Drug Administration in the Code of Federal Regulations."
> Dr. Carducci is the second Med Onc to answer the question " Could I be > dead in 12-18 months if I do nothing" with the word "possibly". How's > that for a 59th birthday present! Gee wiz... My urologist said the same. The reported doubling time is not a pretty prospect.
> What's a fella to do? I'd take steps to interrupt the process without undue delay. But be sure that the steps are likely to produce results -- as nearly as anyone can be sure in this business.
Here's a source of guidance: The Us Too International website Physician to Patient at http://www.prostatepointers.org/mlist/mlist.html Posting the Prostate Cancer Digest should result very shortly is a response from at least one of the very best PCa specialists on the planet. Free.
I do know this much: it saved my life.
Please let us know how it goes.
Regards,
Steve J
"We must tailor the treatment to the nature of the disease. We must listen to the biology." -- Stephen B. Strum, MD Medical Oncologist PCa Specialist
Carl Hunt Hays III - 25 Mar 2008 22:06 GMT >> Gentlemen- >> [quoted text clipped - 45 lines] > this. > Best of luck! --------------
Kindest thanks for this input - Carl
PSA 19 07/2004 @ 55 12 needle Biopsy 07/2004 G7 T2c RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh positive margins G8 in 3 of 6 left and 4 of 8 right sampled Post Op PSA 19 30 mg Lupron began 12/2004 and every 4 mo after PSA .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70 50 mg Casodex added daily 12/07 PSA 02/07 13.70 @age 58 Casodex discontinued 2/07 PSA 18.08 3/08
tarhoosier@carolina.rr.com - 25 Mar 2008 15:58 GMT > Gentlemen- > [quoted text clipped - 27 lines] > PSA 18.08 3/08 > Seeking advice from Carducci at Johns Hopkins today On short notice, this is of support. http://www.prostate-cancer.org/education/andind/Guess_ChemotherapyForPC.html
Alan Meyer - 26 Mar 2008 00:20 GMT On Mar 25, 10:58 am, tarhoos...@carolina.rr.com wrote:
> On short notice, this is of support. > http://www.prostate-cancer.org/education/andind/Guess_ChemotherapyFor... Carl,
I looked at the web page recommended by tarhoosier. It's excellent, very worth reading.
I'm not a doctor or an expert of any kind. What follows are just the speculations of a layman. So please do not think of them as in any way authoritative.
But, forging on ...
It is my impression that the course of the disease, and the response to any particular therapy, can vary a great deal from one person to the next.
Docetaxel may do no good at all, zero. On the other hand however, it may add many months or even years to your life. It's a crap shoot. There's no way to know how sensitive a particular cancer is until you try it.
In general, chemotherapy works by killing rapidly dividing cells. That is why it is less effective in prostate cancer than in some other cancers. Because PCa is relatively slow growing, there are fewer cells dividing and multiplying at any given time than with fast growing cancers.
Now if that's true, men like you Carl may actually derive more benefit from chemo than the average patient. The very high PSA doubling rate you are experiencing may indicate that you have an exceptionally large number of tumor cells dividing at any one time and hence susceptible to chemo. This is something to ask your doctor about.
The treatments Dr. Carducci recommended comprise what is often called "second line hormone therapy". Surprisingly, they quite often work after "primary" hormone therapy has stopped working. As with everything else, whether they work or not is an individual thing. Some men get great benefit from them, some get none, and a few have unacceptable side effects. I think they are worth trying.
A friend of mine with advanced, metastatic PCa (PSA 500 before treatment started) went hormone refractory over a year ago. He has been treated by Dr. Charles "Snuffy" Myers, a medical oncologist in Virginia. Dr. Myers has been trying almost everything. He hasn't done any chemo yet. That's still in reserve. But he has tried second line HT, very large doses of pomegranate extract and some vitamins, and now Revlimid, a thalidomide analog. Each time the PSA goes up, Dr. Myers tries something new. Some of the things haven't seem to have done anything, but a number of them have.
One year later, my friend, who is 71 years old, is still walking around and still living a relatively normal life. He still has no symptoms. His PSA has not yet gotten above 18 (IIRC) before being checked or brought down again.
So I think if it were me, I'd do what my friend did. I'd try lots of treatments. I'd find an aggressive doctor who would work with me to keep trying new things.
So far, there still don't seem to be any magic bullets. But it may be that by battling the disease with one treatment after another, you can get an extra year or two.
Finally, although you're facing death at an earlier age than most of us, I think it's important to remember that you aren't dead yet. I don't think it does any good to be so depressed over dying that you wish you were dead. If that was the right attitude, we'd all do well to do ourselves in as soon as we learned that all men are mortal.
You may have one year of life left. You may have more. Whatever you have, try to make the best of it. Make financial preparations, gather up diaries or photos or keepsakes, etc., and prepare to pass them on. Maybe write some letters or make a sound or video recording for your children and grandchildren, if you have them. There is a recent posting by I.P. with more good suggestions.
Do what you can for your family now, while you can do it. Make things as easy for them as you can.
And beyond all that, don't forget to watch those favorite movies you've always loved, or listen to your favorite music, or read your favorite books, or eat at your favorite restaurant, or visit your favorite friends, or take that vacation to the place you've always wanted to see but never made time for. And of course, spend some time with your loved ones. They'll still be here after you're gone, remembering you and carrying on for you.
Life ain't over till it's over. Let's live while we can.
Best of luck.
Alan
Bob C. - 26 Mar 2008 00:45 GMT > Gentlemen-
> I have reservations about a fatiguing therapy that might only give me 3 > months more life. > > Best to all- Carl Carl, as you have been fighting this battle for awhile now, I am sure that this is not the first time you have been discouraged. My thought is why stop fighting now. Sure, the next treatment may only give you an additional 3 months, or maybe less. But then again it might give you some number of years, and then on to who knows what other treatment(s) for who knows how many more years.
As to your doctors reply regarding time left, my first doctor gave me a 50-50 chance of still being here in two years WITH treatments, and that was in about October of 2000 when my initial psa was 55. The odds do not get better with each year, so I figure that by now I must be down to really really slim odds of seeing 2009, but I sure plan on it. A lot of guys have gone from one treatment to another, sometimes having one or more fail and then just going on to another one and having success. There are so many clinical trials going on now, phase 1,2 and 3, that I am sure you would be a candidate for a number of them. I wish you really good luck, and I hope we hear of good results from you as you continue your battle. For a long time.
And no, I have not seen that first doctor again since that visit.
I.P. Freely - 26 Mar 2008 02:21 GMT > The odds do > not get better with each year, so I figure that by now I must be down to > really really slim odds of seeing 2009 Actually, they do, so take heart. My odds of making 10 are much better after three years with virtually no PSA then than they were fresh out of the OR. Heck, if I can make 9 w/o PSA, my odds of making 10 will be pretty close to 1.0. Every little bit helps.
I.P.
DominicM - 26 Mar 2008 02:42 GMT > > The odds do > > not get better with each year, so I figure that by now I must be down to [quoted text clipped - 6 lines] > > I.P. Carl.... Johns Hopkins also has some other promising trials that you may want to ask Dr. Carducci about. One is Revlimid . He can tell you appropriateness for your situation.
Hang in there. Good luck. Dominic
kh - 26 Mar 2008 02:48 GMT > Recent bone scan looked relatively clean with possibly one spot on my spine. > Recent CT scan also looks good. > > PSA has been doubling rapidly (now at 18.08 up from 13.5 a month earlier) > I did not respond to Casodex and have discontunued it.
> I have reservations about a fatiguing therapy that might only give me 3 > months more life. Carl, my brother, read my recent posts on my adventures with external radiation at Inova. I've got a 30 day doubling time and when my PSA hit 21 this January, mets in my spine had me unable to get up from bed. I was in serious trouble.
I'm better now and look forward to starting the taxotere IL-6 antigen trial at JHU next month. Both JHU and Inova's oncologists are hopeful about the taxotere.
I have no intention of getting only 3 more months. Even 3 years isn't my goal. My goal is to beat this.
I realize that there will be setbacks but I will keep working with the docs at Inova and JHU, my A-Team.
I'll do all the "should help" stuff that has a low or zero cost, pomegranate, blueberry, green tea with some ginger. Tofu. Vitamin-D. Any tips that I read here, that pass the I.P.-Steve Jordan-Alan M. cynic filter, I'll give it a try.
I'm building my business and adding to my skills so that I can improve my financial posture. Initially the silver bullet may be expensive, I want the freedom of saying, "Fifty grand? Sure. Lets start now and I'll battle my insurance company later." Yesterday and today, I passed two different IT certification tests which might lead to more work or a higher billing rate.
I'm still weak from the radiation and have muscle wasting from the decadron. I've started walking and climbing stairs. I intend to be as strong as possible, when I get that first hit of taxotere.
I'm also whooping it up. Had a grand time at a really fancy waterfront estate, crabcakes and asparagus with fresh berries for dessert served in the formal dining room. Then we went down to the secondary garage, the empty one with the piles of bagged compost, and threw darts for an hour.
Beating the PCa is a long term goal. There's no way to do it now but Steve K heard that a silver bullet MIGHT be available by 2012. The rate of technological change is incredible, so who knows.
The other thing that I keep mulling over is "PSA". We have a cancer with a "specific" antigen. You don't hear about a Breast Cancer Specific Antigen, Skin Cancer Specific Antigen, or Lung Cancer Specific Antigen.
This reveals my ignorance but "specific" antigen suggests that it would be possible to engineer something that takes it out. I think that's how PROVENGE and GVAX are supposed to work.
If you could make something like that, there shouldn't be a problem with unleashing it on prostate tissue, which you don't need to live. Lung tissue, skin, that's another matter.
-kh You got more good times ahead.
Steve Kramer - 28 Mar 2008 00:07 GMT > Beating the PCa is a long term goal. There's no way to do it now but > Steve K heard that a silver bullet MIGHT be available by 2012. The > rate of technological change is incredible, so who knows. Actually, it was 2015, which is just outside my window of opportunity (I think).
However, more recently, I was told that they no longer feel that way. While the genome project was far ahead of schedule and the identification of the offending DNA strands came much sooner than expected, the cure is lagging. Last I heard (about three months ago, I think) is that they hope to reduce it to a chronic disease by then rather than a fatal one. :-(
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
Gourd Dancer - 26 Mar 2008 06:51 GMT Carl get off this 3 more months craps; you are not over 70!!!
First of all you have a 20% shot at PSA reduction with what is called Casodex Withdrawal Syndrome; ie, 20% of people who stop Casodex experience a reduction in PSA in six weeks.
Second, I just turned 61. Four years ago I had a PSA of 32.4 with two mets to L2 & T3. Today. I am undetectable and mets are gone. I went on a chemo trial of three cycles each of doxorubin with ketoconazole and paclitaxel with estramustine, plus 30 mg of prednisone a day for six months.
Third, you are a statistic of one.
Listen to your medical oncologist, get aggressive and you will see many more years.
Gourd Dancer
> Gentlemen- > [quoted text clipped - 29 lines] > PSA 18.08 3/08 > Seeking advice from Carducci at Johns Hopkins today Steve Kramer - 27 Mar 2008 21:44 GMT > Gentlemen-
> I have reservations about a fatiguing therapy that might only give me 3 > months more life. I always swore I'd never go through that which my father did with chemo. But, having watched my BIL handle newer stuff well with his lymphoma and a subordinate of mine handle it well with his colon cancer, I'm of a mind to try it when my time comes. I can always stop.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
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