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Old 08-09-2009, 11:37 AM   #1
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Latest news is hormone refractory


It's been a few months since my husband John has communicated on this blog. He was diagnosed 9 months ago with advanced prostate cancer stage 4. It had metastisized to the bone, lymph nodes, and a huge rectal tumor was causing much of his symptoms. He definitely has an aggressive form of PC (his age is 46) and over the summer has become hormone refractory. His PSA kept going up from 3.9 to finally 63 when we went back to M D Anderson Houston and began a clinical trial for Taxotere and Carboplatin July 28, 2009. The reason the doctor wanted him to go to second tier chemo treatment is because of the aggressiveness of the disease...we've not even been able to get his PSA under 3.9 in 9 months of hormone therapy. This clinical trial is for dosage...both drugs are FDA approved. It's had a really great response for lymph node growth in the pelvic region which is where John's current growth is at this time. Before administering the chemo however, they discovered a kidney problem due to the growth of the lymph nodes it was crowding the bladder and urether tubes which was sending urine back into the kidneys making them larger. His creatinine level was 2.8. So, John underwent a nephrostomy placement which is a tube through one kidney to drain urine into a bag. This should be a temporary placement for 6 weeks while the first 2 doses of chemo works on regressing the lymph node size in his pelvic area. The creatinine level was down to 1.8 within 3 days following the procedure.

Regarding the chemo treatment, the protocol is getting intravenous treatment every 3 weeks for 4 months. Every 6 weeks at M D Anderson Houston and then in three weeks going to our at home oncology center. They are also in charge of doing the 1 week follow up blood and urine tests after each treatment to verify Red and white blood cell counts. So, John will get treatment every 3 weeks and all the CT scans, bone scans, and blood work up every 6 weeks while at MD Anderson getting treatment. John's white blood cell count dropped to .8 which norm is higher than 4. So, he did get 2 consecutive shots of Filgastrim (Neupogen) in 2 days which brought his white blood cell count up to 6.8. He felt great after receiving the shot. So far the side effects are fatigue by day 2-3, shortness of breath with activity, and initially some high blood pressure readings. We are expecting more as the treatment advances...but, so far so good.

If anyone can share their experience when there cancer became hormone refractory and steps they took to overcome rising PSA's that would be very helpful to us. We are also looking to the future for when the bone starts acting up as we know it will eventually...what treatments or trials have been successful out there for you?

We did get a book that is very hot read from MDAnderson right now called Anti Cancer A New Way of Life by David Servan-Schreiber, MD, PhD. It's an International Bestseller. It talks a lot about nutrition, exercise, and ridding yourself from anxiety and stress through meditation, etc. It's enlightening as to why we are having an epidemic of cancer in the US while other countries don't.

It's a roller coaster ride...but, we are fighting this thing with all of our might. Join us in our fight with any thoughts you might have. Our adorable 4, 5, and 12 year old are counting on us to succeed against this beast for as long as we possibly can. Take care all...

Last edited by Johnracer46; 08-09-2009 at 12:15 PM.

 
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Old 08-09-2009, 01:04 PM   #2
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Re: Latest news is hormone refractory

Thanks for sharing the book find with us - probably others here have heard of it but we have not. We just ordered one.
Not having been your path - all we can do is pray for you and your family and trust someone will come on with some insight for you.

 
Old 08-09-2009, 03:16 PM   #3
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Re: Latest news is hormone refractory

Hi John and Linda,

I'm sorry your battle is now more challenging, but you are certainly getting some thoughtful and expert treatment at MD Anderson. I'll insert some thoughts in excerpts from your post in green. Up front I'll add thanks for describing your experiences with chemo under a trial, as well as for participating in the trial. Jim


Quote:
Originally Posted by Johnracer46 View Post
...His PSA kept going up from 3.9 to finally 63 when we went back to MDAnderson Houston and began a clinical trial for Taxotere and Carboplatin July 28, 2009. ... It's had a really great response for lymph node growth in the pelvic region which is where John's current growth is at this time. ...

I'm grateful that I have not had to learn much about chemo, but I've picked up a few things. It's clear that thoughtful, expert oncologists are trying different approaches to see what combinations work best from the existing arsenal of drugs, and also, under trial, with emerging drugs. For example, Dr. Robert Leibowitz in the Burbank area near LA, Compassionate Oncology, has been using what he calls an "antiangiogenic cocktail" for years, and achieving what he considers to be great results with some patients. His cocktail, when I was following his informal reports closely a few years ago, involved four drugs: Emcyt, Taxotere, Decadron and Carboplatin, as I recall it. Some of the responses for patients with cases like your husband's or worse were pretty awesome. Of course, the MD Anderson crowd is right in the forefront of research.

If anyone can share their experience when there cancer became hormone refractory and steps they took to overcome rising PSA's that would be very helpful to us.

Dr. Charles "Snuffy" Myers has published resources for patients about hormone refractory prostate cancer that look outstanding to me. He is a former NIH research scientist, later director of the University of Virginia Cancer Center, later a prostate cancer with a challenging case including metastasis (diagnosis about early 1999 and doing very well now), an eminent expert in nutrition and prostate cancer, and a renowned expert medical oncologist specializing in prostate cancer with a large practice near Charlottesville, VA, and a sometime-moderator/regular presenter in the series of National Conferences on Prostate Cancer. (He will be presenting at the next one in September.)

His recent book for patients covers a number of approaches for dealing with hormone refractory disease. The title is "Beating Prostate Cancer: Hormonal Therapy & Diet." His typical approach when first line hormonal blockade fails (which usually is triple blockade using an LHRH-agonist like Lupron, Zoladex, etc.; an antiandrogen, typically Casodex, in a dose of 150 mg daily; and a 5-alpha reductase inhibitor, usually Avodart) is second line hormonal blockade. Normally that involves substituting ketoconazole (along with hydrocortisone to cover an adverse effect of the drug) for the antiandrogen. Apparently that often works very well.

Dr. Mark Scholz gave a most interesting and encouraging presentation on this approach at the National Conference on Prostate Cancer 2005 in Washington, DC (Session 16). The Foundation for Cancer Research and Education, sponsored by Dr. Myers, was the key backer for the conference, and it may still have copies of conference DVDs with that presentation. Dr. Scholz, who practices in Marina del Rey near LA and is a co-founder and closely associated with the Prostate Cancer Research Institute (PCRI), a non-profit patient education organization, may also have made other resources available on ketoconazole, and I have not attended the last two conferences, so PCRI may have some DVDs on keto and other HRPC resources from those.

Just a few highlights from slides of Dr. Scholz's talk -
One slide covered characteristics of patients who were good candidates for keto - high PSA nadir, slow PSA doubling time, and limited bone scan involvement - and for taxotere - extensive bone scan positive disease, and fast PSA doubling time. In reviewing ketoconazole combos, he noted that with taxotere, the dose of taxotere needs to be reduced; some other drugs for combos with keto are Adriamycin, Emcyt, and Vinblastine (apparently the combo is known as the Logothetis protocol. Has that been broached with your husband?). Ketoconazole with Leukine has been discussed by Dr. Eric Small.

He reviewed one of his papers in the Journal of Urology on keto, showing that for 78 men with HRPC (53 with positive bone scans, and the group with a median (average) starting PSA of 25), 34 men had a decline in PSA of more than 75%, and one fourth had responses that lasted from 18 months to more than 7 years.

Unfortunately, there are some side effect and drug interaction issues with ketoconazole, but they apparently can often be managed quite effectively.

Another slide covered other treatments for men with HRPC, which Dr. Scholz refers to as resistance to Testosterone Inactivating Pharmaceuticals (TIP for short - thank goodness!). They included: anti-androgen withdrawal; nilutamide; high-dose Casodex; Cytadren [? - new to me]; DES and Coumadin; Leukine; Thalidomide; Taxotere in combo with, probably separately & in a group, Samarium, Emcyt, Carboplatin; and "other chemotherapy."

Another tactic Dr. Myers describes in the book is switching from the LHRH-agonist to trans-dermal estrogen. He also mentions a number of other approaches, including combinations with Lukeine. He gives several case studies of men with amazing responses.

He also addresses developments in chemo now and then in his Prostate Forum subscription newsletter. For example, he has informed us about Satraplatin, a drug that looked promising for HRPC but which had disappointing results in a clinical trial. Still, there is some ongoing research.

Dr. Myers and others have been enthusiastic about the new epheresis (donate own blood, get it souped up, get it back) drug Provenge, which this year achieved a great success in its key clinical trial. The approval application should go to the FDA in the fall, and, due to the FDA's familiarity with this drug, I'm expecting approval within just a few months. The key trial was specifically aimed at hormone refractory, metastatic prostate cancer patients who did not yet have symptoms, which is pretty close or a match to your husband's circumstances (not so sure about the asymptomatic part), but it should be available more broadly under "open label" procedures. (By the way, Provenge is actually an immune system enhancer rather than a chemotherapy drug. It has a remarkably mild side-effect profile.)

I attended the FDA advisory committee hearing on results of earlier, smaller, trials for Provenge, speaking in favor of approval, even though there were some trial design/results issues, and I've followed subsequent developments fairly closely. One aspect that you might want to check is research on patients who had both Provenge (sipuleucel-T, DN-101) and taxotere (docetaxel). It turns out in the preliminary research that the results were quite a bit stronger than for results of either drug alone, with Provenge doing better than the now standard docetaxel combo, but I've had trouble finding what I saw back around the summer or fall 2007. The senior scientist/doctor was Eric Small from UCSF, one of the champion prostate cancer researchers in my opinion. You could try contacting Dr. Small's office.

Your words look upbeat in your post. Do you know that it is misleading to focus on just a few additional months advantage from chemotherapy? Basically, it's because the results statistics include both patients who respond well and those who respond poorly during a clinical trial. In actual clinical practice with a sharp medical oncologist in charge, it's going to be clear within the first few months whether a patient is responding, and if he isn't, the oncologist can switch him to something else. Yet the statistics don't capture that; instead they water-down what should be an encouraging result to what looks like a trivial advantage.

A lot of us with less advanced cases are eager to see researchers and leading oncologists start to work with Provenge for less challenging cases too; several such trials are now ungoing. The developer/manufacturer is the Dendreon Corporation. Incidentally, those of us who attend the National Conferences on Prostate Cancer series have gotten good updates on this drug's potential and status. I expect it will be a star at the upcoming conference next month at the LAX Marriott in Los Angeles.


We are also looking to the future for when the bone starts acting up as we know it will eventually...what treatments or trials have been successful out there for you?

Fortunately for me I have not had to acquire first hand knowledge about that, but I have been highly impressed with research about the super bisphosphonate Zometa, as well as being impressed by hearing of success with it from fellow survivors. My impression is that bone trouble is not inevitable with Zometa in the picture, at least not for some patients. Also, combinations with Zometa are being explored. Dr. Mark Scholz, who is the moderator of this year's National Conference, has said that his practice, with many patients on Zometa, has not experienced the Osteonecrosis of the Jaw (ONJ) problem that some Zometa patients have experienced, and he thought that might be because they do not give Zometa more frequently than every three months in his practice. Of course, it might be necessary, it seems to me (no enrolled medical education), to use it more often to stabilize or reduce bone mets. I just searched www.pubmed.gov, a site we can use here because it is Government sponsored, for " prostate cancer AND Zometa " (without the quotation marks) and got 289 hits! (The earliest paper was published in 2000, so to say that this area of research is hot is an understatement!)
Do you have any comments on Zometa and ONJ?


We did get a book that is very hot read from MDAnderson right now called Anti Cancer A New Way of Life by David Servan-Schreiber, MD, PhD. It's an International Bestseller. It talks a lot about nutrition, exercise, and ridding yourself from anxiety and stress through meditation, etc. It's enlightening as to why we are having an epidemic of cancer in the US while other countries don't.

Thanks for the tip on the book - looks interesting. That formula - nutrition, exercise, and ridding yourself from anxiety and stress - (even the meditation part) is the same one that Dr. Myers has been advocating for years as support for other therapies for prostate cancer.

I checked the author in www.pubmed.gov, and it's clear he is primarily involved in psychological or psychiatric research primarily - quite a shift in direction for the book. I'm thinking his book relates to a personal battle. Is that the case?


It's a roller coaster ride...but, we are fighting this thing with all of our might. Join us in our fight with any thoughts you might have. Our adorable 4, 5, and 12 year old are counting on us to succeed against this beast for as long as we possibly can. Take care all...
Keep your spirits up! Having great reasons to win the fight has got to help!

Take care,

Jim

 
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