Discussions that mention zometa

Cancer: Prostate board


[QUOTE=dustydigger;3719122]Thanks for taking the time to respond medved. I saw my oncologist on Friday and discussed some of these issues with him. He is quite against another round of chemo, although he will agree to it if that is my choice. It nearly killed me last time and he doesn't want to repeat the risk. On the other hand, my urologist believes that I should go for another round of taxotere if I want to. He is much more positive about it than my oncologist. The only issue in agreement is that another round of radiation to control pain would be beneficial. I would have to travel for any of the trials and so have pretty much ruled that out. Realistically all that I have left is palliative care and I am fine with that. Thanks again for your information.

Hi Dusty,

I'm trying to catch up after a virtual absence from this board since early August and just checked this thread. Medved and I see things from a similar viewpoint, and I'm hopeful that bouncing thoughts between all of us on the thread may be helpful.

Just briefly about me - I'm now doing very well, just entering my third period of triple hormonal blockade delivered intermittently at nearly the nine year point, and I again expect to respond well based on reaching a nadir of <0.01 last time. That said, my case is challenging, with an initial PSA of 113.6 in 1999, GS 4+3=7, all cores positive, most 100%. Based on this, I've stayed tuned in to developments in hormone refractory (aka androgen independent) prostate cancer.

About oncologists in Canada - There is an impressive number of oncologists (as well as urologists) who are making great contributions to prostate cancer. Where are you located? Vancouver is a hotbed of advanced research, with awesome facilities and many expert disciples of Dr. Nicholas Bruchovsky, a leader in hormonal therapy and probably other areas of prostate cancer treatment such as chemotherapy. Near the other coast in Quebec, Dr. Fernand Labrie is known internationally as the "Father of Combined Hormonal Blockade Therapy," meaning the combination of an LHRH-agonist drug with an antiandrogen, such as Casodex or flutamide. He has his critics, but he's a great pioneer and I love his feisty spirit whether I see it his way or not. (I don't see it his way on continuous versus intermittent blockade!) Recently, I believe he has accepted finasteride as a third drug to complement that regimen. I know that Toronto is very active on a number of fronts, and I believe that ketoconazole's value for prostate cancer was first recognized at Princess Margaret Hospital. I guess my point is that you have a lot of expertise, and a lot of leading edge medicine for prostate cancer, north of our border. You might want to contact one of those doctors or institutions and see if you could get a more local referral.

I recall you said you were tested to make sure the LHRH-agonist was doing its job. But were you also on an antiandrogen then? Was your DHT (dihydrotestosterone) also tested? Dr. Labrie was one of the leaders who observed that in some men the adrenals kick in hard when the body notices that testicular testosterone has been suppressed, sometimes indirectly producing up to 40% of the normal level of testosterone, let alone DHT. Were you on finasteride or Avodart (the latter no doubt too new, both 5-alpha reductase inhibitor drugs - 5-ARI) to cut off almost all conversion of any remaining testosterone to DHT? Dr. Myers has observed that sometimes you can achieve satisfactory testosterone suppression but DHT can still be unacceptably high. What I'm getting at is that hormonal blockade might still contribute to your battle against the disease, and there is little additional side effect burden, if any, from adding the antiandrogen and 5-ARI drugs. I AM ALSO CONVINCED, MORE SO EACH YEAR, THAT MANY DOCTORS BELIEVE THEIR PATIENTS ARE HORMONE REFRACTORY WHEN IN FACT THEY HAVEN'T PROVED THAT! :mad: That said, many probably don't even realize they need to prove that! :(

Are you on Zometa? I don't think you mentioned it, and it sure is on my list of drugs I want if I develop bone mets or if the Boniva I take for bone density no longer does the job. Zometa looks awesome to me! :) Not only does it actually rebuild bone density, but it many patients it at least partially rolls back bone metastases! If it does not succeed in that, it tends to stabilize them, or at least slow their progression. A serious but rare jaw bone side effect has captured attention, but Dr. Mark Scholz has said he has used a lot of Zometa on a schedule not more frequent than every three months and has not had any problem with patient's jaws. It is expensive, but in the US it is very well covered by insurance for patients like you. In fact, some patients who were not qualified in the US for insurance because their cases were not yet serious enough were known to make long trips to Canada to obtain it at less expense. (Thanks for helping out. ;) - not me personally)

About the Provenge that medved mentioned - the company behind Provenge recently said it expects to be able to report interim results late in 2008. That is highly significant, as the FDA has already committed to approving the drug if the well-powered (statistically) interim results are favorable. Provenge is an immune system drug that uses dendritic cells. I spoke as one of the survivor representatives at the FDA hearing when the advisory committee recommended approval for accelerated approval, before the application was turned down by the FDA, and I've followed developments fairly closely. After the disapproval, Dr. Eric Small, a lead investigator and renowned prostate cancer researcher from the U. of California, San Francisco, and colleagues followed up with published papers showing that the group of patients getting both docetaxel (taxetere) and Provenge had even a much superior survival than those just getting Provenge. I believe you would be in that group. You can check [url]www.fda.gov[/url] (a website we can mention here since it is a US Government site) to see when Provenge again gets on the advisory committee docket, and check the site to read background documents for the hearing. I don't believe a date has been set, so there is probably nothing there at present.

Leukine is another immune system drug to which about half of prostate cancer patients have responses, including many apparently impressive responses. Dr. Myers is highly enthusiastic about this drug, and he included several case histories involving Leukine in his recent book "Beating Prostate Cancer - Hormonal Therapy & Diet."

The drug I just came off - thalidomide (Thalomid) looks somewhat promising in very advanced cases, especially when used in combination. I was using it at a low 50 mg dose to extend my off therapy period, but it has been more conventionally used for more advanced prostate cancer for years. It has some side effects, but there are tactics that will probably help reduce or eliminate some of them. For instance, at least at the low dose, 300 mg of vitamin B6 is recommended by Dr. Robert Leibowitz, MD (aka Dr. Bob), to virtually eliminate the risk of peripheral neuropathy; I did not experience this side effect. For years Dr. Bob had also recommended an 81 mg enteric aspirin to virtually eliminate the risk of venous thrombosis. This year he increased his recommendation to a full enteric aspirin a day, which I tried. I stopped within a week as my blood pressure is on the low side, and I would nearly pass out at the gym from "orthostatic hypotension," (feeling faint when you rise from a seated position) another side effect. I do fine on the baby aspirin, and at that dose the orthostatic hypotension is a minor nuisance, often not noticeable. Constipation is another possible effect. I'm convinced that is completely avoidable for those of us who regularly engage in aerobic exercise, and are on a high fiber diet. I also consume lots of liquid daily (for fitness, mostly green tea, tomato juice, and water), as well as about 1,000 mg of vitamin C, and all of that probably combats constipation. In fact, I find I do better eating several slices of refined white bread daily to counter the reverse problem. The Cleveland Clinic published data for its multiple myeloma patients, which you might be able to obtain, about such steps for countering the side effects of thalidomide, which is a standard treatment for multiple myeloma.

An even better drug, Revlimid, is available as a refined version of thalidomide but with a milder side effect profile. Unfortunately, both drugs are expensive, with Revlimid being stratospheric, in my opinion. However, in the US it would be covered by insurance for advanced prostate cancer patients, I believe. I'm curious how your national service would address it.

Having been at this now for nearly nine years, I'm convinced that many well-meaning and able doctors are just not anywhere near up-to-speed on what can and should be done for well advanced patients unless they specialize in prostate cancer oncology and are talented. Medved named some of the ones I follow, though Dr. Scher, a wonderful leader against the disease, probably does not push the envelope as much as some of the others. I'm not faulting him; it's just that he focuses on his vanguard role in leading prostate cancer research. :) (By the way, while I opposed his opposition to Provenge, I understand and respect his reasons ("unconvincing evidence) and courage, and I am convinced he acted out of principle and dedication.)

I hope this helps. I hope it has not been too long. And I hope we will keep this discussion going. I am going to comment on the length of benefit of chemo separately.

Jim
Jim, Thanks for all the great information. I was taking flutamide at first, then flutamide and elegard, and finally just elegard, which kept my psa below 1 for nearly 5 years. When my psa began rising I had a blood test for testorsterone. The testosterone in my blood registered near 0 which the doctor suggested showed that the elegard was doing it's job of shutting down testosterone production and my psa was rising because the cancer had become refractory. I accepted that information at the time, although, I still get elegard shots. Why not? I responded exceptionally well to a chemo regimen of taxotere started last fall. My psa gradually and steadily went down to 1 again. That ended last January. By March my psa was 2. By July (last psa test) my psa was 17. I have never taken Zometa. I will familliarize myself more with the information you have given me and ask my doctors about it. You don't seem to be suffering any pain from your cancer. I have for years now off and on. Right now my biggest concern is just to live my last time available pain free. I'll start another post later to describe my 4 efforts at radiotherapy for palliative care. ie. pain control. Thanks Jim. Just as an aside, I have been completely and totally impotent since I was 48, for the last 6 years. My wife has never complained at all. She is absolutely amazing. Sometimes I really feel deprived by this disease in ways that no one knows anything about except other sufferers or survivors of this disease. good night for now. Dave