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Old 10-15-2009, 02:55 PM   #1
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My Dad, 61 years old, Stage IV PC... pls help

Hi everyone,

First off I want to say that all of the posts I have read from several of the men on this board have been so wonderfully uplifting and it's almost like I can feel the support coming off the page and into our lives. I want to thank you for that.

A little history (not nearly as detailed as many)...

My dad is almost 62 years old, (DOB 11/2/47) and was diagnosed last June with PC. At the time, his PSA was around 4.5 and his Gleason was already either a 7 (4+3) or a 9 (4-5), I can't remember exactly. My dad decided to get the seed implants through Dr. Kent Walner up in Seattle (parents live in San Bernadino, CA). (background….. My dad had bypass surgery 3 years ago that had complications so the doctors wouldn’t even suggest taking out his prostate because of massive scar tissue build up and just an overall risk because of the bypass surgery damaging his vascular system).

My dad is getting all of his treatments through the VA at Loma Linda (he is a Vietnam Vet) even though they have private insurance as well. He believes in the VA and that they have all of the up to date treatments and facilities. I'm on the fence about this but nevertheless....

Before the seed implants, he took one dose of HT (zoladex) when he was first diagnosed. The side effects were horrid; he had terrible hot flashes and had NO energy along with massive weight gain. Once he received the seed implants, the doc told him there was really no need to continue the HT so he happily stopped.

Fast forward to May 09... His PSA was somewhere around .5 which was a great improvement to his June 08 levels so they felt the seed implant was working. But around that time, he started having terrible pain in his back, his hips, etc. He wasn't sure if it was just arthritis setting in but the pain has been terrible, often taking him to his knees.

So.... he went back in August to get another PSA reading. The reading was up from .5 to 18.0. They immediately scheduled a bone scan and a CT scan and just this past Tuesday, we got this report....


Multiple foci of increased activity in the ribs, thoracic and lumbar spine. There are also foci in the right skull, right side of the face, sternum, iliac wings, sacrum, and SI joints, consistent with metastatic disease. Foci in the appendicular skeleton include the right mid humerus and right femoral neck. Symmetric activity in the shoulders and ankles may be due to degenerative change.

As if that news isn't devastating enough, the CT scan shows the cancer in his lymph nodes mainly around his aorta, heart and pelvis.

Oh, and his PSA has doubled since August, to 36 (from 18).

You can imagine how horrible this news is for us. He has been married to my mom, Elaine for 39 years, the father to two daughters (me, 32 and my sis, 34), the grandfather to my two girls, Sadie 6 years old, Savannah, 9 years old and my niece, Sydney, 6 years old. He is our precious father, and he's only 61 years old.

What do we do from here??? The only suggestion so far is HT. We all know that there is no cure, but shouldn't we be mounting a MASSIVE attack from all sides to try and at least stop the cancer from being so aggressive??? What do we do?? I am so afraid. I feel like they never ask the right questions and so it’s time we step in and advocate for him.

He said he will do what we want him to do, but if it's too uncomfortable, he wants us to respect that he's had enough. I feel like he's defeated. Like we've already lost. I know this is brand new for him and he has to somehow digest this news and I know he is so afraid.

One more question, as much as I am dreading the answer.... the doc said the prognosis would be 1-2 years if he did NOTHING, and 4-6 years if he did the HT. But this was before we knew it was in his lymph nodes. Now we’re all too afraid to ask how much this has changed the prognosis. Does anyone have any idea what we might expect?

Thanks so much for everything. I can't even say these words out loud yet, but can write it all down and hope to help find a way to at least give him more time.

ANY advice would be helpful, and so appreciated.

Much love and support,
Shannon

 
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Old 10-15-2009, 04:34 PM   #2
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Re: My Dad, 61 years old, Stage IV PC... pls help

I am very sorry to hear about your situation. I once went through much the same with my father, so I know something about what you are dealing with. I will keep this short because I am much less learned than some others on this board. My one suggestion, though, is that your dad see a medical oncologist who specializes in prostate cancer. There are fewer of them (true specialists) that you might think. Options on the west coast that I know of would include Stephen Strum in Ashland Oregon, who some would say is the preeminent doctor in the world in this field. Other possibilities would be to see someone at the Fred Hutchinson Cancer Center in Seattle. I don't have a name, but someone on this board will be able to recommend the right doctor there. Another option is UCSF, which has a specialized program in prostate cancer, and experience with advanced cases. A final suggestion would be Bob Liebowitz who has a practice in Los Angeles, which he calls "Compassionate Oncology." He has a lot of experience with hormonal treatments for advanced p ca, and a particular approach that he calls the "Leibowitz protocol". The first step for your dad -- and I think the most important step -- is to see an expert. There may be some other experts on the west coast, but these are at least some leads. In terms of the side effects of hormonal treatment (and the terrible experience your dad had with one of these treatments), you should know that there are other hormone treatments, and some patients who have bad reactions to one drug will have only very mild or no adverse reactions to another. So there are various options. I hope some of this helps, and I wish you and your family well.

 
Old 10-15-2009, 06:18 PM   #3
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Re: My Dad, 61 years old, Stage IV PC... pls help

Do not give up hope on this. Celestia Higano, top prostate oncolgist, Seattle Cancer Care Alliance , which is a cosortium of Hospitals. You will be treated at U of Washington medical center, rated 12 best in country overall/us news world report. More importantly, rated 6th cancer care by same. I am there know awaiting RRP( open surgery ), not robotic. I am super, super impressed with my surgeon and every one I have dealt with there. Google Seattle cancer care alliance and follow links to her bio, you will be impressed, God bless and much Aloha, Jack

 
Old 10-15-2009, 06:41 PM   #4
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Re: My Dad, 61 years old, Stage IV PC... pls help

Your words touched my very core. My dad was diagnosed on November 1, 2007, a day I will never forget. He is the center of my entire family's being. On that day, I promised I would do everything in my power to get my Daddy the best treatment possible. You can do the same for your precious Dad!

< edited >

Shannon, do everything you can for your father!!! If you just need to talk, I am willing to listen. I am a Mom of a 10 and 6 year old. It has been the hardest time of my life, but I have learned to live for today. I thought my relationship with my Dad was strong before, now it is sacred. No matter what happens, nothing can take that away from you. Keep the faith!!! God bless you.

< edited >

Last edited by hb-mod; 10-16-2009 at 01:24 AM. Reason: Please do not post medical contact information, or suggest off-board contact, per Posting Policy. Thanks.

 
Old 10-15-2009, 08:04 PM   #5
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Re: My Dad, 61 years old, Stage IV PC... pls help

Hi Shannon,

Of course these are awful days for you and your family, but I would still like to welcome to the board anyway. We're glad you are here! You've already had some great leads and comments. I'll add my thoughts in green in an excerpt of your first post. Jim


Quote:
Originally Posted by littleeagles View Post
Hi everyone,

First off I want to say that all of the posts I have read from several of the men on this board have been so wonderfully uplifting and it's almost like I can feel the support coming off the page and into our lives. I want to thank you for that.

I'm sure all of us are lifted up by your comment. You're welcome.

...

My dad is almost 62 years old, (DOB 11/2/47) and was diagnosed last June with PC. At the time, his PSA was around 4.5 and his Gleason was already either a 7 (4+3) or a 9 (4-5), I can't remember exactly. My dad decided to get the seed implants through Dr. Kent Walner up in Seattle (parents live in San Bernadino, CA). (background….. My dad had bypass surgery 3 years ago that had complications so the doctors wouldn’t even suggest taking out his prostate because of massive scar tissue build up and just an overall risk because of the bypass surgery damaging his vascular system).

That is clearly a significant health condition that affects options for his prostate treatment, and not just surgery. One of the potential side effects of hormonal therapy is that it can worsen cardiovascular concerns, though these sid effects can be countered effectively in some patients. Is your dad on a statin drug? If he can tolerate such a drug, which is primarily for cholesterol, he will get a double benefit in that statins help decrease the risk of lethal prostate cancer, especially when taken for at least three years.

My dad is getting all of his treatments through the VA at Loma Linda (he is a Vietnam Vet) even though they have private insurance as well. He believes in the VA and that they have all of the up to date treatments and facilities. I'm on the fence about this but nevertheless....

Some VA docs do fine work. I believe that the late Dr. Gleason, who gave us the Gleason Scoring system was a VA doc. However, your dad needs top-notch expertise in handling advanced, very aggressive, challenging cases involving cardio issues. That expertise is hard to find in the non-VA world, and I doubt he will do as well as he could if his case is managed by the VA. That's especially true since he is in San Bernardino, not far from some of the world's top experts in hormonal blockade and advanced cases, as has already been noted by Medved (Dr. Leibowitz) and laughagain (Dr. Scholz, Dr. Strum's former partner before Dr. Strum's semi (more like a tenth rather than "semi" I think ) retirement, partnered with Dr. Lam. Of course, Dr. Strum is one of the leading experts and pioneers, but he is up to the north near Celestia Higano. I don't know that much about her, but she is a noted researcher/physician and Dr. Scholz invited her to speak to this year's National Conference on Prostate Cancer. She couldn't come as the FDA had called her to Washington to advise them about the new prostate cancer immune system drug Provenge, which is up for approval. That's a pretty darn good credential!

But the long and short of this is that your dad has the Scholz/Lam practice and the Leibowitz practice practically next door in LA (next county or so, anyway). If one of those practices is affordable, I strongly recommend your dad consult them. Either practice will be accustomed to cases like his and will know what to do.


Before the seed implants, he took one dose of HT (zoladex) when he was first diagnosed. The side effects were horrid; he had terrible hot flashes and had NO energy along with massive weight gain. Once he received the seed implants, the doc told him there was really no need to continue the HT so he happily stopped.

Hormonal blockade, mostly intermittent triple hormonal blockade, has been my only therapy for a challenging case for nearly ten years, and I'm familiar with the potential side effects. Most of us don't have the severe impact your dad experienced, but he unluckily drew the short straw there. One of the key things about using hormonal blockade is to also use countermeasures to the extent needed and possible. Was your dad informed about that? Many very good surgeons and radiation doctors are not really up-to-speed on the finer points of hormonal blockade therapy, especially the need for and role of countermeasures. For instance, did his doctor ever suggest one of the injections that typically stop hot flashes on a dime? Did the doctor check for anemia, a less common but hardly rare side effect that can devestate energy? Anemia can be countered with Procrit type drugs, though, as a layman non-doctor with no enrolled medical education, I'm not sure whether the heart issues would prevent use of some of the usual countermeasure drugs. Cardio problems, lack of energy, and depression all often improve with aerobic and strength exercise, but exercise might have to be carefully tailored in view of your dad's overall health. Dr. Scholz is in my mind the leading expert on handling side effects of hormonal blockade.

Fast forward to May 09... His PSA was somewhere around .5 which was a great improvement to his June 08 levels so they felt the seed implant was working. But around that time, he started having terrible pain in his back, his hips, etc. He wasn't sure if it was just arthritis setting in but the pain has been terrible, often taking him to his knees.

Hormonal blockade usually leads to fairly rapid and substantial easing of such pain when it is due to bone mets, as I understand it. The relief is often remarkable within just hours if surgical castration is done instead of an LHRH-agonist type drug like Zoladex. In his current state, it is VITAL! that he be given an antiandrogen in ample time (days) before getting an LHRH-agonist type drug; otherwise he could suffer an irreversible spinal compression and be crippled. Some hormonal drugs do not have this temporary risk. One of them is the newly approved drug known generically as degarelix; I believe it is now available commercially.

So.... he went back in August to get another PSA reading. The reading was up from .5 to 18.0. They immediately scheduled a bone scan and a CT scan and just this past Tuesday, we got this report....


Multiple foci of increased activity in the ribs, thoracic and lumbar spine. There are also foci in the right skull, right side of the face, sternum, iliac wings, sacrum, and SI joints, consistent with metastatic disease. Foci in the appendicular skeleton include the right mid humerus and right femoral neck. Symmetric activity in the shoulders and ankles may be due to degenerative change.

I'm almost certain that the experts would want him on the most powerful bisphosphonate drug, Zometa, yesterday! The Primer that laughagain mentioned describes special details for the first infusion that will help hold down or eliminate temporary side effects that can otherwise occur. For a patient like your dad, many doctors would prescribe an infusion every three weeks to try to roll back the bone metastases. However, there is a serious potential side effect of frequent and prolonged use that is known as Osteonecrosis of the Jaw (ONJ). Though ONJ is fairly infrequent, the Scholz/Lam practice likes to limit the Zometa to every three months, and they've reported no occurences of ONJ in their patients, probably because of that. Still, it gets to be a judgement call whether to risk ONJ when the patient is facing widespread bone mets and a very aggressive cancer as indicated by that short PSA doubling time. Calcium and vitamin D3, perhaps the latter in prescription form, are given during the period the patient is on Zometa. Zometa will also go far in preventing or minimizing loss of bone mineral density (BMD), which leads to osteoporosis, or the Zometa may even succeed in rebuilding some bone.

As if that news isn't devastating enough, the CT scan shows the cancer in his lymph nodes mainly around his aorta, heart and pelvis.

Hormonal blockade, especially triple blockade, can be effective in helping not only with bone mets but also with soft tissue mets. However, blockade is typically not as effective with such advanced patients as it is in patients who do not yet have detectable mets (like me) or who have just a few. But your dad is not typical; he is a unique individual, and he could respond very well to hormonal blockade.

There are other very important drugs that can be used, such as Leukine. Leukine is an immune system drug, not chemotherapy in the strict sense that we refer to as "chemo". The drug Provenge, which we hope will soon be approved, is quite similar to Leukine, and may also help your dad. Chemo is also an option, and could be used in combination with blockade and leukine. There are other drugs, but the expert medical oncologists mentioned will be very well skilled in their use. Dr. Charles Myers, himself a patient with once metastatic prostate cancer and now doing well, and also one of the world's experts, has written an easy-to-read and highly encouraging book that puts a lot of this in layman's terms: "Beating Prostate Cancer: Hormonal Therapy & Diet." I can't recommend strongly enough that you and your dad read that book! (Among other things, he describes several actual cases that are worse than your dad's that are having phenomenally good outcomes. )


Oh, and his PSA has doubled since August, to 36 (from 18).

Doubling times can be worse, but his is quite short. No wonder you are all shaken.

You can imagine how horrible this news is for us. He has been married to my mom, Elaine for 39 years, the father to two daughters (me, 32 and my sis, 34), the grandfather to my two girls, Sadie 6 years old, Savannah, 9 years old and my niece, Sydney, 6 years old. He is our precious father, and he's only 61 years old.

I do so hope that he will find approaches that turn his situation around. I believe it is possible.

What do we do from here??? The only suggestion so far is HT. We all know that there is no cure, but shouldn't we be mounting a MASSIVE attack from all sides to try and at least stop the cancer from being so aggressive???

Yes, I think so, at least a combined attack of some kind. The experts will know what will give him the best chance, and they will know whether and when to switch to other tactics.

What do we do?? I am so afraid. I feel like they never ask the right questions and so it’s time we step in and advocate for him.

Yes! My impression is that your dad and his wife are getting good and reasonable care in view of current medical practice and conventional expertise, but that is probably not going to be good enough in his situation. Laughagain mentioned Jan Manarite in Florida on the helpline. She is fine. I know Jan and worked under her leadership to try to get Provenge approved early (and we were nearly successful). But PCRI also offers help right out of its Century Blvd. headquarters near LAX. I suppose you could contact both.

He said he will do what we want him to do, but if it's too uncomfortable, he wants us to respect that he's had enough. I feel like he's defeated. Like we've already lost. I know this is brand new for him and he has to somehow digest this news and I know he is so afraid.

This is where I feel Dr. Myers book could make such a big difference. Instead of jumping right into the drugs, Dr. Myers devotes his leadoff chapter to attitude and optimism. He's convinced that's important. This isn't rose-colored-glasses optimism, it's optimism based on a thorough appreciation of the marvels that talented use of medical resources can work for us. (Prayer counts too.)

One more question, as much as I am dreading the answer.... the doc said the prognosis would be 1-2 years if he did NOTHING, and 4-6 years if he did the HT. But this was before we knew it was in his lymph nodes. Now we’re all too afraid to ask how much this has changed the prognosis. Does anyone have any idea what we might expect?

There is a basis to that prognosis, but truly, no one knows. We are already seeing many amazing responses to modern therapy applied by experts, and new drugs, drug combinations, and lifestyle supportive measures are constantly emerging for prostate cancer patients. My own prognosis, identical from respected doctors at Johns Hopkins and at the City of Hope back in early 2000, was three good years and two declining years, provided I used aggressive tactics. Well, I'm now at nearly the ten year point and nearing the end of my third round of intermittent triple blockade with a good quality of life. I'm fighting the battle of the bulge but holding my own, I'm actually building muscle despite testosterone of 10 (very low), I'm energetic, and I'm enjoying life. I've heard many stories not that far from mine.

Thanks so much for everything. I can't even say these words out loud yet, but can write it all down and hope to help find a way to at least give him more time.

ANY advice would be helpful, and so appreciated.

I would like to echo laughagain's recommendation of PCRI resources and of the Primer; to me the Primer is the bible for prostate cancer patients.

Much love and support,
Shannon

Be brave and carry on the fight! Your dad has a real shot at some good quality years and may even beat this thing.

Take care,

Jim

 
Old 10-15-2009, 09:11 PM   #6
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Re: My Dad, 61 years old, Stage IV PC... pls help

A note on Celestia Higano, She is a medical oncologist who specializes in prostate cancer, not sure if that is the same as a prostate cancer oncologist???

 
Old 10-16-2009, 01:57 PM   #7
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Wink Re: My Dad, 61 years old, Stage IV PC... pls help

I do not know how to convey how appreciative I am of the time you all spent on responding to my post. I will forever be grateful! I just emailed every single response to my parents and they are reviewing all of the invaluable information that you have given me. If there is ever anything I could do to repay the generosity back, I would do it, no questions asked.

I will make sure that I update you guys on the road ahead.

Thanks again and if there is any other information you feel necessary, send it on!!!!!

HUGS TO ALL OF YOU!!!!!!!!

Shannon

 
Old 10-20-2009, 07:37 PM   #8
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Re: My Dad, 61 years old, Stage IV PC... pls help

Hi Shannon, I am in similar shoes with my Dad at age 62 dx w PC Stage 4 metstasis to Right pelvis PSA 1780 and Gleason 8. Our entire family is still in shock of this unfortunate dx ( 6 weeks ado). The support and suggestions from members on this board helped me a lot. I had gone to New Delhi to help coordinate the treatment plan for my Dad and was able to come back home to Atlanta feeling much better. My Dad is on Triple Hormone Blockade and doing well so far. I hope you are able to find the right care for your Dad. I was able to e-mail and call Dr. Myers office in VA and they were also helpful. Hope to hear good news on your Dad's health!

 
Old 11-18-2009, 10:54 AM   #9
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Re: My Dad, 61 years old, Stage IV PC... pls help

Hey Shannon, My 61 year old husband was diagnosed 3 years ago with stage lv which came as a total shock to all of us because he had NO symtoms at all. He immediately had a radical prostectomy only to find out it was in his lympnodes and bones. He then started with hormone therapy and it worked well for 2 years. Now his psa is quickly rising so we are going to start Chemo., Taxitere, in two weeks. I can relate to how you are feeling right now. 61 is SO young!!! But I do believe in miracles and an awesome God so I'll be praying for you and your family as we go down this road we never wanted. Keep me updated!

 
Old 11-24-2009, 07:45 PM   #10
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Re: My Dad, 61 years old, Stage IV PC... pls help

Quote:
Originally Posted by logoslidat View Post
A note on Celestia Higano, She is a medical oncologist who specializes in prostate cancer, not sure if that is the same as a prostate cancer oncologist???
Yes, that's about as close as it gets. There is no precise formal specialty "prostate cancer oncologist." Maybe that will happen some day; it's a complex disease.

Take care,

Jim

 
Old 12-10-2009, 08:47 AM   #11
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Re: My Dad, 61 years old, Stage IV PC... pls help

Hi Shannon, Just read about your Dad. I'm sorry to hear that his disease has progressed so quickly. I have a daughter who is 32 also and I am 55 with Stage IV metastatic prostate cancer. HT has become ineffective and I am now receiving chemo. Prognosis1-2 yrs. This is difficult news to digest and my only suggestion is to live "one day at a time" and respect your fathers wishes and alow him the space he needs to deal with this as best he can. You will be in my prayers,God bless you

 
Old 12-10-2009, 08:48 PM   #12
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Re: My Dad, 61 years old, Stage IV PC... pls help

Hi Tom,

Welcome to the board!

I'm sorry you have drawn one of the short straws, but it may not be as short as it looks at the moment! I'll insert some thoughts in green. By the way, I'm dealing with a challenging case myself, but at a much earlier stage. On December 7, ten years ago, I got my first ever PSA result back: 113.6! The biopsy was not quite as scary at GS 4+3=7, but all cores were positive, most 100% cancer, and the DRE result was termed T3, and informally described as "hard as a rock." I'm now on my third round of intermittent triple hormonal blockade having twice reached a nadir of <0.01 before taking a vacation from Lupron and Casodex, and my PSA on this third round has fallen to 0.05. I've had no enrolled medical education, but I've spent a lot of time learning about this disease over the past decade.


[QUOTE=anonymous tom;4140679]Hi Shannon, Just read about your Dad. I'm sorry to hear that his disease has progressed so quickly. I have a daughter who is 32 also and I am 55 with Stage IV metastatic prostate cancer. HT has become ineffective

I see that Pacifica is in the Bay Area, and there are some outstanding doctors treating prostate cancer in that area, including UCSF and Stanford among others. However, having had quite a bit of contact with researchers and physicians who spend a lot of their time on prostate cancer, I'm still surprised by the proportion of these talented, experienced docs who really don't know the ins and outs of whether a patient no longer responds to hormonal therapy. I have reason to think your doctor may be in this group. You may know much of this already, but it's really important, so here are a few questions:

Is a urologist or a medical oncologist managing your care? In general, I've learned that many urologists think they know the ins and outs of hormonal therapy, but they really do not, and the hormonal therapy they manage for their patients is not the best. That applies even to some doctors who are truly experts in surgery and other urology skills.

Was your testosterone level tested when your PSA began rising on hormonal therapy? If so, do you mind telling me what it was? The conventional wisdom, which I'm convinced is not that wise, is that a testosterone of 50 is low enough to consider that hormonal therapy is doing its job as intended. However, the leading experts I follow all believe that testosterone should be below 20; if it's not, they work to find out why the hormonal therapy is not working adequately, and then they make adjustments. (I don't get testosterone tested every time, but my last test showed mine at <10 (meaning less than 10) in August.) They don't switch to second line hormonal therapy or some other approach unless the PSA is under 20 and the PSA is still rising.

That's one of the reasons - a testosterone level of 20 or higher - the second element of my blockade program is an antiandrogen drug, specifically Casodex for me. In all of us some testosterone is produced indirectly via the adrenal glands. Although LHRH-agonist drugs like Lupron, Zoladex, Trelstar and Viadur will virtually totally block testosterone produced by the testes if the drugs are properly delivered and the patient does not clear them abnormally quickly, testosterone production via the adrenals in some men ramps up to a substantial proportion of the original level when the body senses a deficit. Basically, Casodex competes for fuel docking sites on the cancer cells, blocking much of remaining testosterone. However, while Casodex is fairly good versus testosterone at shoving its way into the docking sites, it's thought that it often gets outshoved by another element.

Therefore, similarly, the experts in hormonal therapy test for dihydrotestosterone (DHT), which is produced by the body from testosterone and is generally considered ten times as potent as testosterone as a fuel for prostate cancer. Unfortunately, some men on partial hormonal therapy have a testosterone level that has been suppressed as it should have been, but they also have a DHT in the normal range. For such men, that normal DHT level, or even one that is not adequately suppressed, will wreck a program of hormonal blockade. I'm not sure of the exact target range of DHT the experts hope to achieve, but it's below 20. My DHT last August was <3, which is fine. I've been on the drug finasteride (formerly Proscar before going generic) to shut down almost all of the conversion of any remaining testosterone to DHT, and also to cut down on new blood supply lines to tumor cells. Apparently the drug Avodart (dutasteride, but not available generically) is superior for most patients.

Therefore, what hormonal therapy program were you on when your doctor pronounced you as hormone refractory? Unless your program included an LHRH-agonist (like Lupron, Zoladex, etc.), an antiandrogen (like Casodex, flutamide, or Nilandron), and a 5-alpha reductase inhibitor - either Avodart or finasteride, the experts I follow closely would believe that you haven't given yourself an adequate chance to see if hormonal blockade would still do the job.


and I am now receiving chemo. Prognosis1-2 yrs.

Whenever I hear such a short prognosis, a red flag immediately goes up: the doctor probably doesn't know as much as he needs to to help his patient! (That's the "anger" icon, but what I feel is more frustration than anger - somewhere in between with hints of sadness. I know you are near wine country, so I couldn't help that last phrase.) I know what such a prognosis feels like: ten years ago, two respected, experienced, talented physicians doing their best - both urologists though - from the City of Hope in Duarte, near LA, and Johns Hopkins in Baltimore both told me I likely had five years to live - three good years and two declining years. Well, they were at least five years wrong, I'm still going strong physically (dealing well with some side effects of treatment of course), and I'm still (knocking on wood) on my first line of defense, haven't had to drop back to my second (second line hormonal blockade), third (other hormonal blockade like estrogen patches), fourth, fifth and sixth, etc. lines (Leukine, chemo, Provenge, etc.) of defense. Many of us have heard similar dire predictions that prove false.

This is difficult news to digest

Damn right, but fortunately it is likely to be wrong news! A great many fine doctors treating prostate cancer don't understand the likely length of survival once a man becomes "hormone refractory", meaning that the drugs no longer can control the cancer. Let's assume you are refractory, which I'm increasingly thinking is likely not the case based on the level of knowledge you're getting from your doctor. That one to two year prognosis has been "validated" in many studies and formulated into what is known as the "Halabi" nomogram to predict survival, based on a number of factors. The nomogram result is often used at FDA hearings as a secondary benchmark for new drug applications, and it seems to often predict survival averages of about 20 months for men in those trials - right in the one to two year range your doctor gave you.

So what's wrong with that prediction? Here's what's wrong, and it's huge: all the studies used in the Hallabi nomogram count survival time from the time a man enters the clinical trial until his death. See a flaw in that? Well, here it is: often there is a long gap between the time a man becomes hormone refractory and the time he gets in a trial. Therefore, the Hallabi results are really substantially shorter than actual survival. That's okay for trial purposes; often the trialists cannot find out the date a patient became refractory - rising PSA but castrate level testosterone, so they need a practical convention. Counting survival from the day of trial entrance works well when you do it for both arms of a study (drug arm versus placebo arm) and have a large number of patients. Researchers get to see whether the drug arm has a substantial number of months longer average survival than the placebo arm. (That's one reason I have confidence in the Provenge trial results.)

But the trial results used in the Hallabi nomogram, while they work for "conventionalized patients" are not a good guide for making predictions for individual real patients like you and me. Some perceptive doctor/researchers at Wayne State University in Detroit, a leading institution in prostate cancer research, began to feel that the reports of one to two years survival were more pessimistic than what they were actually seeing in their own patients, so they did a study by looking back into the records. Now keep in mind that these were patients treated mostly in the late 1980s and 1990s, well before some of the great advances that are now prolonging our lives. Here's what they did: they counted survival time from the time men went hormone refractory, in other words, from the time each man's PSA began rising despite having a "castrate level" testosterone, which I think they even defined as "<50" instead of "<20". Here's what they found: for men with positive bone scans when the became hormone refractory, survival was 40 months - more than three years!. For men who had negative bone scans at the time they became refractory, survival was 60 months - five years!

Now this good news may be tempered if you have widespread bone metastases, especially with pain, though with today's advances, even these patients are doing better, I believe. If you don't mind sharing, would you tell us if you have widespread mets and if they cause you pain? If that's the case, then your doctor did have more of a sound basis for giving you that short prognosis, though the doctors I follow have blazed paths that allow many patients in such circumstances to do considerably better.

One final piece of news that I hope you will find encouraging. There is a new drug called Provenge in a late stage of FDA review for approval for hormone refractory prostate cancer patients who have metastases. I posted yesterday about free access to that expensive drug (at least free for drug costs as I understand it), at least for a while prior to its approval. One of the trial sites is at UCSF, under the leadership of Dr. Lawrence Fong, MD, contact name Julie Russell, RN, phone 415-353-7085. It might be worth a call. I can answer more questions about Provenge and its current status if you need more information. I learned about it from attending an FDA hearing as a member of the public. Of course, you might want to first see if you are really hormone refractory or if improved hormonal therapy might still work. Dr. Eric Small at UCSF is a very highly regarded prostate cancer researcher/physician, and might be a good choice for a consultation for you. However, for years Dr. Small was leary of the 5-ARI drugs finasteride and Avodart, and, if he is still on the fence, you might be better served by a doctor who is thoroughly familiar with those drugs and their role in hormonal blockade. Several such doctors practice in your state in LA, and one is in Ashland, Oregon, not too far.

I also strongly recommend you get the book "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD. It gives you a basis for optimism, and it has a lot of encouraging advice for patients with challenging cases.

Take care and keep your spirits up,

Jim

 
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