Join Date: Nov 2007
Location: Annandale, VA, USA
Re: So far so good - first PSA, third round/ninth year IADT
I'm glad my story has given you some encouragement. That's one of the reasons I post it and update it. So many of us have heard discouraging words from doctors we think are in a position to know , but for many of us the reality can be a lot better if we are able to find our way to more effective care . That was certainly my case, and I've long ago thrown out that initial prognosis of five years - three good years (under treatment) and two declining years (with end stage treatments) from a respected doctor at the City of Hope (second opinion) and a totally independent respected doctor at Johns Hopkins (third opinion), both highly regarded institutions. I still think well of these doctors who meant to help me, but they were just totally unaware of the superior options I found. I think you have a good chance of actually being in the same boat, and I'm inserting some comments in green in extracts from your post. Just remember that, though I am a highly experienced patient who has invested a lot of time and effort in educating myself about the disease, I have had no enrolled medical education and have no medical credentials.
In answer to your second post, my case was (and probably still is) challenging, as indicated in that sentence about my diagnosis, but the unusual course of care that I've been on has been quite tolerable to me. Also, the individual elements of my therapy (or even heavier duty versions, such as Zometa instead of Boniva), are widely available in the United States, provided a patient can find a doctor willing to use them (my solution). There are a few highly talented and knowledgeable experts, but it often takes a willingness to travel long distances and perhaps also a substantial investment to get their personal, world-class services.
I wish you the best in dealing with your case at this key juncture. I was fortunate to run into a surgeon who was substandard in approaching prostate cancer at the very beginning. I say fortunate because I had to work through the wrenching decision to get other opinions, and that made me realize early on that all doctors treating prostate cancer are not created equal. I'm fully convinced the differences in talent and knowledge are enormous!
Originally Posted by dustydigger
... I'm 54 and was diagnosed 6 years ago this month with metastatic pc. I had a 12 for 12 positive biopsy, gleason 7 and a bone scan showed it had spread to the lower left hip bone.
It is now spread to both sides. Do you have just a few metastases or many? The reason I ask is that there is some highly encouraging research about treating patients with a few metastases with local therapy, such as therapeutic (vice palliative) surgery and/or radiation at the site of each met.
I started out on flutemide and then Eligard, which I am still on. Once the Eligard had kicked in I quit the flutemide. Temporary use of an antiandrogen drug like flutamide to prevent or minimize "flare" is common therapy, and appears to be very important for a patient who may already have metastases. (Flare is the increase in PSA (indicating a possible increase in the cancer) resulting from the very temporary surge (lasting perhaps one to two or three weeks, as I understand it) in testosterone from an LHRH-agonist class of drug like Eligard, Lupron, Zoladex Trelstar-LA or Viadur, before those drugs cause a plunge in testosterone.)
However, I'm personally convinced that most of us will do better when we continue the antiandrogen along with the LHRH-agonist. That combined approach was pioneered by Dr. Fernand Labrie from Quebec. It is still controversial, mainly, as I see it, because researchers studied its effectiveness in groups of patients that were virtually all late-stage, a clinical situation where we now know that combined therapy (or single hormonal therapy) does not work as well as it does for earlier stage disease. While studies in earlier stage patients have been at the individual practice level and somewhat less formal, results for many patients have been spectacular. In brief, the antiandrogen drugs work by blocking the docking of testosterone and some other fuels for prostate cancer with the prostate cancer cell. (Casodex is a more effective, more convenient, and more tolerable options than flutamide, but it is also more expensive.) I'm convinced that results are even better when a third class of drug is added, a "5-alpha reductase inhibitor", with finasteride (formerly Proscar) and Avodart as the two choices available. This third class of drug has at least two effects, but the main one is preventing almost all of the conversion of any testosterone that escapes the LHRH-agonist hormonal blockade to dihydrotestosterone (DHT), which is a far more potent fuel for prostate cancer than testosterone; the other important effect I know is reducing blood flow to tumors. That triple blockade therapy is the one that has worked so well for me.
This worked well for 5 years but then my psa began rising. I was told that I had hit that point of being refractory. I'm convinced that so many doctors reach the conclusion that a patient is refractory too early, and when I hear and see this kind of statement it makes me a bit sad and also a bit angry . It's possible that your adrenal glands have just found a way to indirectly produce more testosterone, and therefore more DHT, despite the Eligard, which blocks only testosterone produced by the testes. If I were in your situation, I would at least want the doctor to try continuous flutamide (along with the Eligard) to see what effect it might have on the testosterone. Since that has not been done, I don't see how the doctor can soundly conclude that you are refractory!
Has your testosterone ever been tested, especially now? It should be down to around 20 or below to achieve an ideal level of blockade. Has DHT ever been tested? It should be very low, probably below 10, and levels below 5 are often achieved by those on triple blockade.
I'm not being overly critical of your oncologist as I've run into similar levels of expertise (or its lack!) in surprising forums. Partly because my case is "interesting" medically, I've attended quite a number of cancer-oriented medical conventions and panels charged with reviewing prostate cancer research proposals. I'm disappointed but no longer surprised to find that doctors are overly ready to label their patients "refractory." My impression is that such an inferior level of expertise is typical - it's the conventional wisdom. And we patients suffer the consequences!!!!
I took chemo (taxotere) every 3 weeks for 30 weeks. There was a steady progressive reduction in my psa all the way down to 1. I'm not so familiar with chemo, but I know that taxotere is the main drug used.
Despite that success I would not have chemo again. It destroys your entire body along with the cancer. I have had radiation 3 times for pain control. Last summer and again this summer I had 5 sessions. Radiation from last summer has left me with a large (5" by5") burn scar on my lower back. The soft tissue that was there is now like wood. I recently had an infusion of Pamidronate. The combination of Pamidronate and radiation has dramatically reduced my pain Pamidronate, aka Aredia, is one of the more powerful bisphosphonate drugs used to help preserve or limit the loss of bone density and perhaps to help a bit against bone metastases. There is a much more powerful (also more expensive) option, Zometa. It is even known to reverse bone metastases in some patients. However, there are some unusual but serious side effects to guard against.
Here's my big question, and I hope your answer is yes, though I expect it is not. Have you been on any bisphosphonate (like Fosamax (Alendronate), Actonel (Risidronate), Aredia or Zometa earlier in your hormonal blockade therapy? The LHRH-agonist drugs, like Eligard, result in some loss of bone density for many of us, unless we protect ourselves with a bisphosphonate drug. (I've done that, and after an initial unprotected loss of some density, my bones have returned to virtually normal!)
however I am now out of treatment options but doing very well just the same. My last psa was 17 in August and my oncologist does not want to do any more psa tests. He now says that we'el treat the patient, not the psa. Of course any new tests will just continue to show a rising psa, so I do agree that it's not that important to know. I'm glad to hear you are doing well now, but my view is that you are far from being out of treatment options! However, it does seem that your doctor is out of treatment options, and you have a good shot at changing your course, as I see it, by getting another doctor who is more focused on recent advances in treating prostate cancer. Canada is a huge country, but there are a number of highly expert Canadian doctors treating prostate cancer, and I'm sure there are others who are not so expert but who are able and willing to implement the protocols recommended by the experts. Yes, if you continue on your present course, the PSAs will no doubt rise. But you have a shot at again bringing the cancer under control. If additional blockade does not work, as outlined above, then other tactics that have worked for many include Zometa, Leukine, Ketoconazole with hydrocortisone, transdermal estrogen, and others. I think you will find Dr. Myers' recent book extremely helpful and encouraging: "Beating Prostate Cancer: Hormonal Therapy & Diet".
My path to 6 years has been a little different than yours, but knowing your sucess gives me hope. You are doing amazingly well and you are still responding to the harmonal blockade. We both have already beat the statistics. I'll continue to read your posts for new ideas and information. All the best to you. Dave
Take care and hang in there,