Discussions that mention zometa

Cancer: Prostate board


[QUOTE=toyofan;3400478]Iam 45 years old and was diagnosied with pc 3 years ago. My psa had gone from 2 to 8 in one year and from 8 to 10 in one month. I had 39 biopsy done and my gleason score is 9. I first tried cryo but that failed. The cancer came back almost right away and the doubling time was every five weeks. I was then put on hormonal therapy and had radiation done October 2006. My psa is <.01> but I am still on hormones. My doctor plans to take me off of hormones in September of this year. I will have been on them for over two years. Here is my concern he says they have no formal treatment plan for a case like mine and his plan is to leave me off until a tumer forms and then treat it. I go to a group called Man to Man and most men in that group are on intermitent therapy. I have not been able to find any studies that support my doctors plan. He says that there is no proof that going on and off hormones last any longer than staying off until it comes back and that the longer time off is better for my body. I know that I have a very aggresive form of pc and I feel that I realy only have one shot of beating this or at least prolonging it. I feel that if I wait until it forms in to a tumer that maybe they wont be able to keep it under control. I am being treated at the Md Anderson center in Fl and feel that I have some of the best doctors I can see. It just concerns me since I lost my mom to breast cancer and hers was a lot like mine very aggresive and nothing seemed to work for her. Any comments one this would be helpful.
God bless and good luck to all
Toyofan

Hi Toyofan,

Your case reminded me of my own, though by what I think was good fortune in my particular circumstances I went straight to hormonal blockade. I can understand why you took the course you did, and it makes good sense to me, though you probably recognized at the outset that the odds were you would recur, and recur fairly quickly, as you did. It also strikes me as an excellent sign that you were able to achieve PSA nadir of <0.01. :angel:

I hope you will find some encouragement in my case. My first PSA in December 1999 was 113.6 at age 56, so I never found out what what the doubling time was, but it had to be fairly short. All biopsy cores were positive, most 100%, with perineural invasion, a Gleason of 4+3=7 upgraded by an expert from 3+4, and a "rock hard" prostate. Feeling that my life was on the line, I tried to learn everything I could that was relevant, and that motivation has continued for eight years now. Hormonal blockade has been my only therapy, and that evolved to triple blockade during my first year. Were you on single, double or triple blockade? I too got my PSA down to <0.01, :)though it dropped much more slowly than it does for most of us. (I was still delighted. It's kind of like the old line about the singing pig: the pig may sing badly, but its a miracle that he can sing at all!) My PSA had been below 0.05 for a year at the point I went off-therapy while maintaining with finasteride and keeping up Fosamax, which at that point was my medication to help with bone density. (Are you on a bisphosphonate like Fosamax and a bone density supplement? In your case, I could see where you might be on something stronger like Zometa.)

It took me 31 months before I went off therapy in 2002 (then age 59), but I recovered from all the blockade side effects within six months, and enjoyed substantial recovery by about the three month point. After 34 months off therapy, I went back on full therapy for nineteen months, again achieving a nadir of <.01 :), and I went off therapy as soon as I reached that point. I'm now at the thirteenth month into my second off therapy period, again maintaining with finasteride (2 X 5mg/day), and now with Boniva as continuing bone density support (all but one of eight scanned bones now in the healthy range :), with the other with mild osteopenia :)).

But I'm with you on doubting the doctor's plan to wait until a tumor develops before resuming therapy, even if the doctor is associated with MD Anderson, a great institution. I know that Johns Hopkins, another great center for prostate cancer that is renowned for surgery, also generally would not use blockade until there were symptoms of progression, or at least that was their practice generally until the recent past. There are other institutions who also take this approach, so your doctor is not alone, but I am absolutely convinced that approach is deeply flawed and potentially disastrous for us patients. (That said, I have no enrolled medical education, so I'm just relaying what I've studied and heard without any independent medical authority of my own. Please take it for leads, but do your own confirming.)

Going off therapy after two years, with a nadir of <.01 would be recommended, I believe, by the doctors I regard as experts in advanced hormonal blockade therapy. They are now thinking that maximum cancer cell kill occurs as early as nine months after blockade is initiated for most of us, but some still like at least a year of keeping the PSA below 0.05 before going intermittent (for example, Dr. Stephen B. Strum, though his longtime former partner, before Dr. Strum's semi-retirement, feels that just getting to 0.05 is probably good enough for most. (Then again, you and I are not "most." :() Obviously your systems have been affected by the cryo and radiation, but at your age and with up to two years of blockade you have an excellent prospect of recovery from the side effects of blockade within a year, probably within six months or sooner, from the evidence I've seen and heard doctors describe to survivors. The doctors I follow would without question want you on a maintenance drug, either finasteride or Avodart, the latter looking better on paper and from a PSA response viewpoint but with a much shorter track record.

You quoted your doctor as follows: "He says that there is no proof that going on and off hormones last any longer than staying off until it comes back and that the longer time off is better for my body." If your doctor is going to judge that the cancer is back and resume blockade when the PSA is in the 5 to 10 range, then that makes sense to me. But my impression is he intends to wait until scans or symptoms make progression obvious, which sounds awful to me. The doctors I consider experts would agree there is no definitive proof yet of the superiority of resuming blockade, at a PSA in the 2.5 to 10 range, or even up to 20, with most of them leaning toward a trigger point under 10, but they feel their own observations of their own patients, including their own disciplined and reported clinical series, make clear that earlier resumption of treatment is superior.

The doctors I follow strongly urge blockade patients to use countermeasures against the more significant potential side effects and complications (especially bone density, and low but significant potential for diabetes cardio problems) and they are confident that these make blockade far more tolerable than it would otherwise be. If you are confident you can control the side effects and complications, that naturally makes it a lot more reasonable to use more hormonal blockade after giving the body (and the rest of ourselves) some off time.

I like the group whose research I can track at [url]www.pubmed.gov[/url] with this search string: " scholz m [au] AND prostate cancer NOT splines NOT ketoconazole NOT MCP NOT pain " (the NOTs are to eliminate some of their papers that are not relevant to the PSA nadir as an indicator of success in the future. I believe they have another paper on PSA nadir that will be published in a major journal within the next few months. Here's a result from one of their two 2007 papers where the average followup was ten years: "... Death from prostate cancer was far more common (78% versus 11%) and accelerated (median of 4 years versus 7 years) for men with a PSA nadir greater than 0.05 ng/mL than for those with a lower nadir...." When you catch the full context, that's a pretty encouraging result for you and me.

I'm sorry you lost your mother to breast cancer. That would have to make you extra concerned, but the two cancers are quite different in some key respects, including the response to hormonal blockade therapy. It is a major and improving tool in prostate cancer, but my impression is that it is not so influential in breast cancer. A doctor at The 2007 National Conference on Prostate Cancer, I believe Dr. Mark Scholz, a driving force behind the conference, did a detailed comparison of the two cancers. On most points of comparison, we are really fortunate.

Please ask followup questions if you have them.

Take care and good luck,

Jim
[QUOTE=toyofan;3403856]... Yes Iam on Zemeta I have had two drips a year apart. I belive if I tell my doctor that I am not happy with waiting tell it turns in too a tumur he wil do what every I ask. His plan was to stop doing psa test at the first rise and just do bone scans until it should up. I really was uncomforitable with that plan. I have about a year before it is a issue so that is why I started know to research others opion.
I have found that all the way through this that I have had to take control of my treatment plans and time tables because most of my doctors have tried to treat this like they do every other pc paitient, but I relized from the start that I was anything but average in my stats.
If I had any one thing to tell people reading my story that was to do your research and dont always believe that the doctors know it all. My own doctor said there was no set treatment plan that they just deside as they go depending on how well you are doing.

Thanks for the reply it has realy helped me
Toyofan

Hi again Toyofan,

I can't agree more with your last point! :) I'm convinced that doing our own research is vitally important to patients with challenging cases in order to get much better outcomes. I personally believe the outcomes can be far superior, even the difference between an early death and many years of good quality life, perhaps even outliving any significant problems from the disease. Patients with low-risk cases will often do fairly well without much research, I think, because many doctors are fairly good at treating those cases, though there too low risk patients will have better odds of successful cancer control and quality of life if they put in some research effort.

I'm glad you are on Zometa. The doctors I follow would probably recommend increasing the frequency up to as often as every three months, or even more often to counter existing bone mets, though with increased frequency there is increased risk of osteonecrosis of the jaw (ONJ) - still rare even with frequent dosing as I understand it. Has ONJ come up in your support group? We have discussed it, but no one has had it. Are you taking calcium and vitamin D3 supplements to support the Zometa? I do that to support Boniva, and I also get my calcium and 25-hydroxyvitamin D ("serum calcidiol")measured, after getting 1, 25 dihydroxy vitamin D measured at least once to make sure kidney function for the vitamin D was sound. Dr. Charles Myers has an excellent section on vitamin D in his recent book "Beating Prostate Cancer -- Hormonal Therapy & Diet."

The book also is very helpful understanding tactics with hormonal blockade (and nutrition) and is easy to read and understand. Do you have it?

I don't know of any leading medical oncologists in Florida who are expert with hormonal blockade. Dr. Dattoli in Sarasota is quite familiar with blockade, but his key expertise is in radiation. Maybe some of your support group buddies could provide leads. What I've found is that such expertise is not widespread. One time I went to a very well known oncologist at Johns Hopkins who I thought would be such an expert. He was known especially for his work in research and particularly in chemotherapy. I learned that he was uncomfortable with adding Proscar (now generic finasteride) to Lupron and Casodex, telling me to throw out the rest of my prescription for it. Well, my local oncologist and I thought I should at least finish the bottle, and by the time I did run out, it had taken my PSA from leveling off at about .6 to .3, a 50% drop :), by the next test, and it continued to drop all the way to <0.01.

Are you trying the pomegranate juice or capsules? I get mine from a well known "foundation" in your state. I've been taking two capsules a day for about a month now, with irregular juice, capsules and the fruit itself before that, and I'm very interested whether tomorrow's PSA test will show any change in my PSA doubling time. Dr. Charles Myers is reporting impressive increases in PSA doubling time in many of his patients who are taking the capsules.

Take care,

Jim