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Old 02-07-2011, 05:49 PM   #1
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"This disease is going to kill you"

That is exactly what the psychologist said to Irv. He spoke like Irv should just enjoy his life now. He spoke about how when people are going to die, they can't process it but they usually think about their missed future. He went on to relate this to Irv's 60s and 70s.

I ended up breaking down completely in the office. I couldn't talk and just bawled my eyes out.

The doctor told me that I shouldn't look on the internet so much, that I have to go on living and not make Irv's prostate cancer the entire focus (in so many words)....but, honestly, this is the only place that gives me hope. PMH gives the impression that this is going to have an ominous outcome and not that far off....not 18 months, but, seems like in the next 5 years.

My chest is always achy these days....I'm always on the verge of tears. I could burst out crying at the drop of a hat.

We DID tell the psychologist that triple blockade is what we want...what would give us hope...and we will tell the medical oncologist the same thing...Hopefully we'll get that appointment soon.

Rhonda

 
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Old 02-07-2011, 08:20 PM   #2
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Re: "This disease is going to kill you"

Hi Rhonda,

I can really empathize with you and Irv because I was told that myself shortly after starting this journey, now in the 12th year. I'll put some thoughts in green.


Quote:
Originally Posted by honda50 View Post
That is exactly what the psychologist said to Irv.
Back when I had an undue, unrealistic reverence for medical professionals, having put them on a pedestal that at least some of them did not request, I probably took such words to heart too. Now, with the benefit of quite a bit of seasoning over the years, I would ask:

"What makes this doctor, a psychologist, perhaps not even an MD (psychiatrists are MDs, many psychologists are not), such a good predictor of how I will do? Does he know as much about prognosis as typical surgeons who treat prostate cancer frequently? After all, many surgeons do not really have a good grasp of what radiation can do, nor are they often very expert in hormonal therapy, especially modern methods. Even such surgeons aren't such hot shots at making accurate predictions. What are the odds that the psychologist has ever even heard of Leukine? What does he know about the success rate of single blockade compared to combined blockade and triple blockade? (Probably very little, probably not even familiar with all these terms, let alone the research behind them.) What does he know about use of bisphosphonates to minimize or prevent bone density decrease while on hormonal therapy? Does he have an informed opinion of intermittent versus continuous hormonal therapy, or does he even realize that these two options exist? Has he ever even heard of the new drug Provenge?

Do you see what I'm driving at? Back in early 2000, I was told by a respected surgeon at Johns Hopkins, which has one of the best reputations for treating prostate cancer, that I had a prognosis of just five years - three good years and two declining years. He echoed what I had heard weeks before from a respected surgeon at the City of Hope. This was a few weeks after my first urologist, the one who did my biopsy, lamented to my wife, out of my hearing, that he could have done something to help me if only I had not come to him with such an advanced case. Well, they were obviously all wrong. It wasn't until the fall, when I went to a national conference on prostate cancer, that I heard expert doctors tell a whole assembly of us that such predictions that many of us had heard were far too pessimistic. (My fine urologist team, whom I had moved on to in early 2000, had also tried to communicate that too me, but it took me a while before I could grasp that the hope had a solid base.) Just for kicks, you might want to call the psychologist back and tactfully ask - not leaving a message, talking to the person real time - if he (or she) has allowed for the use of (pick one) Leukine, for intermittent hormonal therapy, etc. I predict you will hear a pregnant pause.


Quote:
He spoke like Irv should just enjoy his life now.
Actually, the "enjoy life now" part is good advice to all of us whatever our circumstances. However, the "just" part of the message sort of pushes us toward neglecting the future, and I believe that is unwise in cases like Irv's and mine; that's because we likely have a good number of quality years ahead of us. If prostate cancer were aggressive pancreatic cancer or aggressive lung cancer, the "just enjoy" message might make good sense. However, it does not make sense for prostate cancer like Irv's based on what you know at this time. It's not a good time to stop all work and focus on partying.

Quote:
He spoke about how when people are going to die, they can't process it but they usually think about their missed future. He went on to relate this to Irv's 60s and 70s.
There may come a time for such a talk, for all of us, but it sure seems premature to me for you and Irv. I think you are running into the old myth about hormonal blockade's period of success, the myth that it only works for around a year or two in cases like Irv's (and mine); the thinking is that chemo works for another 20 to 24 months, and then (let's not consider all the advances that have been made in chemo and other drugs/therapies, such as spot radiation) the patient rapidly declines for some months before dying; hence, we have a prognosis of about four to five years. The reality is so different! There are a very few patients for whom early hormonal blockade does not work well, but I doubt that Irv is one of them. Even if so, there are other options.

Quote:
I ended up breaking down completely in the office. I couldn't talk and just bawled my eyes out.
No wonder! (Put that hug here for you and Irv both!) I predict the day is coming when you will be able to take such advice in stride with the kind of reaction I described above. I remember how Dr. Bob Leibowitz rebutted such an opinion from an eminent UCLA doctor/researcher. Dr. Bob stated bluntly, on behalf of some of his patients who had previously seen the pessimistic doctor, "Fortunately, he doesn't know what he is talking about! (He went on to explain why.)

Quote:
The doctor told me that I shouldn't look on the internet so much,
I've been there too. Many medical professionals are really not keen on patient empowerment. They just want us to docilly accept the standard of care delivered without particular thought or insight. My first urologist was not for empowerment, in fact tried to hinder it by making it difficult to get a second opinion, and even the wonderfully compassionate and informative surgeon at the City of Hope advised me to find a good doctor, put my fate in his hands, and relax. That sounds comforting, but it is not empowerment, and I'm convinced prostate cancer patients, especially those with challenging cases, need to be empowered.

Quote:
that I have to go on living and not make Irv's prostate cancer the entire focus (in so many words)....but, honestly, this is the only place that gives me hope.
Hopefully, you both will get to the point that prostate cancer is just a routine part of your lives, one you don't worry about very often. Now is not that time. It's time to find a sound therapy approach and a supportive medical team. The challenge is complex, and you need knowledge to rise above an inadequate standard of care. Many of us have done that, but it takes the kind of work you are both doing now. Some of us go on to find we want to pass on our hard won knowledge, and you may become one. On the other hand, it's perfectly fine to step back. There was a woman who posted frequently, helping others, when I first joined the board; after a while, she sensed that she was moving on, and she bid us a graceful farewell. That was a good outcome for her.

Quote:
PMH gives the impression that this is going to have an ominous outcome and not that far off....not 18 months, but, seems like in the next 5 years.
There has been some great work out of PMH, such as discovering the role of ketoconazole for prostate cancer, if memory serves me right. But that does not mean that all doctors at an institution are equally talented or insightful for a particular patient, especially for one who has not yet even begun advanced hormonal therapy.

Quote:
My chest is always achy these days....I'm always on the verge of tears. I could burst out crying at the drop of a hat.
A psychologist who is supportive could help, but not the one you talked too. Spiritual support could also be a great help. If you haven't found a spiritual home, now might be the time to look for one.

Quote:
We DID tell the psychologist that triple blockade is what we want...what would give us hope...and we will tell the medical oncologist the same thing...Hopefully we'll get that appointment soon.

Rhonda
Good for you! Make sure you keep the psychologist's address. When the therapy or another sound therapy has worked for you and Irv, be sure to send that psychologist a report. You might also want to send him a report on Irv's tenth anniversary of success.

Jim

 
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Old 02-07-2011, 08:38 PM   #3
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Re: "This disease is going to kill you"

Jim, I'm not religious, but, G-d Bless you! My worry is that I'm running out of steam, or so it seems, this early in the game. Everywhere I turn, it seems people think that Irv is dying....

Well, I guess we're all dying. How will we ever find the care as sufficient as what you're getting without a doctor like Myers, Scholz or Strum here in Toronto. We're at the "cancer hospital", the revered place for cancer patients. People flock here from all over. People look at me when I talk about the internet...like I'm kidding myself, because, let's face it, I'm believing some stranger I read about on the internet, as opposed to top doctors in a top hospital. It must appear as though I'm completely deluding myself. Oh G-d, let me prove them all wrong.

I feel as though it's you and Chuck Maack and a couple of others who will be there to advise us every step of the way because the doctors don't recognize our protocol of choice and how to be diligent with monitoring Irv's progress with it every step of the way. How do we deal with this without having to tell them every little thing?

Chuck mentioned low dose radiation to the breast area for 4 days to prevent gynecomastia and the psychologist said that the doctors here would never agree to that because any radiation to the area around the chest and lungs provides risk.

I feel like I need somebody like you or Chuck by our sides at every appointment and every step of the way. If you suddenly fell off the face of the earth, I think I would feel like I've lost my right arm and more.

It's just seeming like it's getting to be too much for me to handle and I'm waiting for the moment I feel strong again and less like I'm going to cry at any moment....Just keep being there. Okay?

Hugs, Rhonda

Last edited by honda50; 02-07-2011 at 08:40 PM.

 
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Old 02-08-2011, 05:02 AM   #4
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Re: "This disease is going to kill you"

Too bad Jim can't call himself a "psychologist" and get the fees he would so richly deserve. His advice is worth more than a that from a cartload of well-meaning but misguided counseling professionals -- not to mention trained urologists and oncologists.

With Jim's thoroughly researched advice, you already possess the wealth of all the latest advances from the leading-edge practitioners. While it would be nice to consult them, I'm sure, having consulted one myself, that they would only tell you what Jim is saying to you so very eloquently. Please believe him that Irv has many years of enjoyable life ahead of him with the kind of treatment Jim has experienced first hand.

With the persistence and dedication you've shown, I'm sure you'll find a way to get Irv the proper treatment. You seem to have all the pieces to the puzzle in place now and only need to find a doctor to help you get the treatment going. That is a huge accomplishment that you can be proud of.

Give yourself a big pat on the back. You've come a long way, and are poised to getting your husband the best treatment you and he could hope for. I look forward to hearing the encouraging news I'm sure you'll be sharing with us soon.

Tom

P.S. I recently saw the movie "The King's Speech." In case you haven't seen it, it's about King George the VI who had an "incurable" stutter. He went to all the expert physicians, most of whom had even been knighted. None could help him. In desperation, the future queen found a back-street therapist who, it turns out, wasn't even a trained doctor. This man had learned how to treat speech impediments because of his experience with shell-shocked troops from World War I. His dedication, practical experience and devotion provided the cure. I couldn't help thinking of this story when pondering your experience with experts and the prodigality of our friend Jim.

Last edited by Gleason9; 02-08-2011 at 05:14 AM. Reason: added the PS

 
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Old 02-08-2011, 09:43 AM   #5
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Re: "This disease is going to kill you"

Hi Rhonda,

I'm replying to your post right before the post from Tom, "Gleason9." I'm so glad you are hearing from others, and what a great account of "The King's Speech." I've been looking forward to it and am now even more eager to see it. I'll put some thoughts in green.


[QUOTE=honda50;4679351]Jim, I'm not religious, but, G-d Bless you! My worry is that I'm running out of steam, or so it seems, this early in the game. Everywhere I turn, it seems people think that Irv is dying...."

Do you remember that old song, "Looking for love in all the wrong places"? Well, it's kind of like that when we look for expertise in handling challenging cases of prostate cancer. Our famous, leading medical institutions are often superb in their strong areas, but quite often they seem nearly blind in areas where they do not specialize. Unfortunately, their confidence from their strong areas tends to spill over into areas where they do not know much. They think they know what is best for us and how to deliver it, but they really do not. Toronto clearly has some marvelous resources for treating prostate cancer, but it appears not to be in the lead in hormonal therapy. I know that Vancouver is a whole country away from you, but I suspect that Vancouver would be far more receptive. You might want to call the big cancer center there and see if they could recommend a doctor who would be skilled and open minded for advanced hormonal therapy in Toronto. You might also want to contact Dr. Fernand Labrie at Laval U. in Quebec to see if he or his office could recommend someone for triple therapy. (Just don't mention intermittent therapy; I don't think he's come around on that yet - another case of past expertise blinding an expert to more recent progress. )

Here are some solid numbers for you, but be aware before you look that you may be discouraged at first. Or maybe not. I'll explain.

The numbers are from a study led by Dr. Stephen Freedland, then at Johns Hopkins (now at Duke U.) and involving support from others on the well-known Johns Hopkins prostate cancer research group. Researchers from Johns Hopkins famous "Brady Urological Institute" worked to identify risk factors that predicted length of survival after prostatectomy. They homed in on three factors: PSA doubling time in months, after surgery ( most favorable >15, 9.0-14.9, 3.0-8.9, <3.0 least favorable); the Gleason score from the surgery pathology - most favorable Gleason less than 8 vs. 8 to 10 least favorable; and the time from the date of surgery until the PSA rose to 0.2: most favorable - more than 3 years after surgery vs. 3 years or fewer - least favorable.

They reported their results as the percentage surviving at 5 years, at 10 years, and at 15 years, as well as "confidence intervals" that indicate a 95% likelihood that the true value falls within the confidence range. One thing the table does is reassure patients with mild recurrences that they have excellent chances of surviving the cancer long-term. For you and Irv, I hope it will boost your confidence in getting past the first years with hope for the future. So first let's look at the numbers for his case and then get to the more encouraging explanation.

Irv has a post-surgery Gleason of 7, assessed at an institution that I would think would be good at pathology. That's on the good side. His PSA doubling is at the low end, <3.0, and his PSA rose to at least 0.2 within three years of surgery. Here are the percentages estimated to survive at the 5, 10 and 15 year points based on the Johns Hopkins projection:

Five years - 74% (could be as high as 93% or as low as 37%) There were actually 23 patients who had a PSA doubling time of < 3 months but not counting Gleason or time since surgery, and their average survival was 6 years (half surviving shorter, half longer).

Ten years - 15% (could be as high as 53% or as low as 3%)

Fifteen years - <1% (could be as high as 26% or that low)

Seeing that 74%, if you and Irv react as I did when I heard that first prognosis of five years, you will be somewhat relieved. I had feared I would only make it a couple of years, so five years eased my mind, a bit. On the other hand, seeing a survival of just 15% at ten years and almost no survival at fifteen years grabs your mind and heart. Here's where the explanation is important.

I see two points that are vital to a more optimistic view. First, the Freedland tables were based on 379 patients who had their surgeries between 1982 and 2000 and then experienced recurrences. Do you notice how long ago that was, especially the early years? Most of the patients probably had recurrence well before 2000, and there have been so many major improvements in treatment for recurrence since those years. Here are some examples: The PSA test was not even approved until 1994, and that gave researchers a terrific marker for tracking patient success so they could research and figure out what worked well and what did not. Initial success for intermittent triple hormonal therapy with finasteride maintenance was not announced (informally, then in a lower level research journal) until the 2000-2001 time frame. The powerful bisphosphonate drug Zometa (protecting bone density, helping counter bone mets) was not approved by the FDA until 2001. The clinical trial success of finasteride in helping prevent prostate cancer - the first firm evidence that the drug had an anticancer effect - was not published until 2003. The importance of vitamin D and statin drugs for prostate cancer was unlikely to have been appreciated during the periods when most of these patients were dealing with recurrence. The first chemo drug for prostate cancer - taxotere - was not approved by the FDA until 2004. One of the earliest bisphosphonate drugs, Fosamax, became available as a generic in 2008, and Casodex became available as a generic in April of 2009; lower costs should encourage doctors to prescribe and patients to pay for these drugs than was the case in past years. The trial by the Pantuck team of quality pomegranate juice for slowing PSA doubling was only reported within the past few years. Provenge was approved by the FDA in April 2010. There have been numerous advances in imaging. These are just some of the advances. If the patients in the Freedland study like Irv had been able to take advantage of these advances, it is likely the survival statistics would have been considerably improved.

The second major point still seems strange to me: Johns Hopkins, despite its well-deserved fame in prostate cancer treatment, has traditionally been very slow to treat patients with hormonal therapy! (Writing about the Freedland study, Dr. Myers wrote the following in the Vol. 9/#9, Aug. 2006 issue of his Prostate Forum newsletter: "Doing Nothing Until Metastatic Disease Develops. This option has been most fully explored by Drs. Walsh, Partin, and Eisenberger [among the co-authors of the Freedland paper] at Johns Hopkins University (JHU. At this JHU, it has long been the practice not to treat patients who have a rising PSA as the only evidence of recurrent prostate cancer. At the heart of this approach is the realization that men do not die of an increasing PSA, but of cancer metastatic to bone and other organs. For this reason, they do not treat until metastases are evident." Dr. Myers then describes his approach, which involves early intervention with hormonal therapy, plus radiation, which is not possible for Irv.

Despite their leadership position, JHU has not been in the leadership for hormonal therapy; quite the contrary. What this means is that it is quite likely the men in the study were not given hormonal therapy until they showed symptoms of the recurrence. Hormonal therapy still works at that point, but often not as well. Moreover, it's likely the therapy the JHU patients were finally given would have been single drug (or orchiectomy) blockade, or perhaps combined blockade, but not triple blockade. It's doubtful they had a bisphosphonate drug in support prior to or during any late hormonal therapy. There's no information whether they were on statin drugs, especially not the numbers who were or were not on a statin for more than three years, which seems to be a key point.


Quote:
Well, I guess we're all dying. How will we ever find the care as sufficient as what you're getting without a doctor like Myers, Scholz or Strum here in Toronto.
What you need is an open-minded, talented doctor who is willing and able to follow their lead. That's what my doctor has done. I've commented about Vancouver and Dr. Labrie above as sources for leads.

Quote:
We're at the "cancer hospital", the revered place for cancer patients. People flock here from all over. People look at me when I talk about the internet...like I'm kidding myself, because, let's face it, I'm believing some stranger I read about on the internet, as opposed to top doctors in a top hospital. It must appear as though I'm completely deluding myself. Oh G-d, let me prove them all wrong.

I feel as though it's you and Chuck Maack and a couple of others who will be there to advise us every step of the way because the doctors don't recognize our protocol of choice and how to be diligent with monitoring Irv's progress with it every step of the way. How do we deal with this without having to tell them every little thing?
It does seem strange. However, when you think about it, so many advances in medicine and other fields are highly controversial and disbelieved at the start. It must seem like there are a lot of details, but the key details are not so many. A lot of us have been able to work with our doctors to accomplish triple therapy.

Quote:
Chuck mentioned low dose radiation to the breast area for 4 days to prevent gynecomastia and the psychologist said that the doctors here would never agree to that because any radiation to the area around the chest and lungs provides risk.
I have divided thoughts on radiation to prevent breast growth. First, it works; there's no doubt about that. Second, there's a strong likelihood of lots of growth if an antiandrogen drug is used without using an LHRH-agonist or having an orchiectomy. However, if testicular production of testosterone is shut down while on the antiandrogen, breast growth is often non-existent or minor, without tenderness or pain. My impression is that it is not a problem for most of us on triple blockade. However, I've never been on a dose of Casodex/bicalutamide higher than 50 mg. There may be more gynecomastia on triple blockade if the antiandrogen is at 100 or 150 mg daily. Dr. Myers expressed concern years ago that we just did not know much about long-term consequences of such radiation on breast tissue in a setting where we were altering the hormonal balance. He was not much concerned with elderly men, but, for younger men, he thought there was a potential risk of subsequent cancer developing after many years, and, if memory serves me, the concern was mainly with potential breast cancer. There may be a study on this, but I do not know of it.

Quote:
I feel like I need somebody like you or Chuck by our sides at every appointment and every step of the way. If you suddenly fell off the face of the earth, I think I would feel like I've lost my right arm and more.

It's just seeming like it's getting to be too much for me to handle and I'm waiting for the moment I feel strong again and less like I'm going to cry at any moment....
All of us who have gone through the empowerement process have felt that need, I suspect. I think you are getting stronger and more empowered almost daily. You have already come a long way.

Quote:
Just keep being there. Okay?

Hugs, Rhonda
I'll do my best, and I'm sure the other Board participants will too.

Take care,

Jim

 
Old 02-09-2011, 11:47 AM   #6
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Re: "This disease is going to kill you"

Hi Jim:

Chuck also told me about medications for the gynacomastia, so we'll have to look into those as well.

Irv got an appointment with Dr. Tannock, the medical oncologist, but not until February 25th....not soon enough in our minds.

So, I said to the secretary that we'd like to start Irv on Casodex...just to get the ball rolling. Take another PSA test and start the dreaded hormone therapy.

I mentioned to Chuck that, if the ADT3 doesn't work, I'd feel responsible...That's the bad part....because I steered him away from the clinical trial. I'm no doctor and I just hope and pray that things turn out ok.

This is just so crazy....I feel like I'm spinning.

Hope to hear from you soon.
Rhonda

 
Old 02-09-2011, 02:18 PM   #7
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Re: "This disease is going to kill you"

Hi Rhonda,

The treatment choice situation is better than it looks.


Quote:
Originally Posted by honda50 View Post
Hi Jim:

Chuck also told me about medications for the gynacomastia, so we'll have to look into those as well.

Irv got an appointment with Dr. Tannock, the medical oncologist, but not until February 25th....not soon enough in our minds.

The doctor's name seemed familiar, and he turned up with lots of hits when I did a PubMed check. You and Irv have a knack for finding highly respected doctors! I just read an article he co-authored on hormonal therapy in 2008, and here are my impressions. He is certainly experienced with it and aware of many, not all, key developments and research. He strongly favors intermittent over continuous therapy, which is good. He is well aware of the constellation of possible side effects, and he knows of some of the key countermeasures, especially including bone mineral density (BMD) protection and exercise, which is good.

On the negative side, in my view, he does not seem to appreciate how effective countermeasures can be for some threats, especially the cardiovascular threats (higher blood pressure, hardening of the arteries, high cholesterol and triglycerides). To me, exercise, statin drugs, about 4,000 units of fish oil daily, as well as a heart-healthy Mediterranean diet, all are important and effective in countering the cardio risks. I'm convinced those tactics will work for most of us. (I had a high cholesterol of around 250 annually when I was diagnosed, but was not worried because my HDL/LDL ratio was good and trigs were low. I started paying more attention after the diagnosis of PC, and now I have enviable numbers, as do some friends who are using the same tactics.)

Partly because he views the potential side effects so seriously, not appreciating the great extent to which they can be countered (common for many docs these days re ADT side effects), Dr. Tannock favors delayed use of ADT and is not so impressed with using bicalutamide, at least the latter was my impression from the article. I think he is so used to the environment of rigorous clinical trials, mainly a good thing, that he may have trouble appreciating breakthroughs that have been achieved in small medical oncology practices. However, I like the way his thinking comes across, and I hope he will be open-minded and thoughtful. Will he go along with the finasteride and Avodart?

I hope I'm not being arrogant. Here I am with no medical credentials, but I'm assessing an expert. I think I get an edge from having a scientific background, having had the luck to have been exposed within months of diagnosis to some highly successful pioneering ADT doctors, and having a life-threatening case that has sharpened my mind for certain topics, though not others, enabling me to find strategic vantage points where key facts make sense and line up consistently, while others stand out as inconsistent and false. (I don't know much about most of the rest of the medical landscape.)


So, I said to the secretary that we'd like to start Irv on Casodex...just to get the ball rolling. Take another PSA test and start the dreaded hormone therapy.
That's the way to do it. That PSA test will help confirm what's happening. Unless there is no difference in cost, bicalutamide is probably just as good as the brand name version. If the doctor is willing, he could start the Avodart or finasteride now too, along with the bicalutamide/Casodex.

Quote:
I mentioned to Chuck that, if the ADT3 doesn't work, I'd feel responsible...That's the bad part....because I steered him away from the clinical trial. I'm no doctor and I just hope and pray that things turn out ok.

This is just so crazy....I feel like I'm spinning.

Hope to hear from you soon.
Rhonda
The ADT has an excellent chance of working very well. If it does not, you should know that shortly and would be able to change course. Unless the clinical trial eligibility standards ruled out ADT, he could still enroll in the trial, though other options could be more attractive.

I'll bet you and Irv will feel a lot better when the drugs begin to work on driving the cancer back.

Take care,

Jim

 
Old 02-09-2011, 08:15 PM   #8
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Re: "This disease is going to kill you"

Well, Jim, in a big way, Dr. Tannock's opinions scare me. There were a couple other doctors we were scheduled to see, and then, when we got more assertive with the idea of triple blockade, we were given the appointment with Dr. Tannock. It seems nobody is in a hurry to schedule a timely appointment for Irv, so maybe that's because they all believe we're pushing for the meds NOW, and they believe that delaying it would be the better choice.

This is very scary. Are you just one out of a million, miracle patients? Why is there such a difference of opinion? I just want to make sure that we are doing the right thing by following the immediate triple blockade hormone therapy and not following exactly what these doctors are preferring.

I still feel very strongly about triple blockade because it makes sense and I've looked for negative stuff about ADT3 on the net where people has reported a failure with it, and I just can't find it. I guess I just want to make sure that you're just not a fortunate blip in an otherwise, less than beneficial medication regimen.

Rhonda

 
Old 02-10-2011, 08:50 AM   #9
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Re: "This disease is going to kill you"

Here's an update:

Irv pushed the wheel a little and now he's received a prescription for bicalutamide and Zoladex. I know that Zoladex is a pellet under the skin in the upper abdomen, where Lupron is an injection in the hip. Would you recommend one over the other?

Well, at least we're going to get started to beat up the cancer....Oh boy, I wanted to use more choice words with that but don't think that would be allowed here.

We'll work on getting the Avodart next. We're determined to get what we want...and what Irv needs to give him his best chance.

So, is this the way it is for a lot of men with prostate cancer? It seems that we tell the doctors what we want, like being at McDonald's...YES, I want fries (Avodart) with that! It would be nice to have a good doctor who we feel secure with and by whom we feel taken care of. We're going through the most critical health issue of our lives and we are the most alone with it, in the medical sense. It's just very strange.

Last edited by honda50; 02-10-2011 at 08:51 AM.

 
Old 02-10-2011, 09:14 AM   #10
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Re: "This disease is going to kill you"

Good morning Rhonda,

Here are what I hope will be encouraging thoughts.


Quote:
Originally Posted by honda50 View Post
Well, Jim, in a big way, Dr. Tannock's opinions scare me. There were a couple other doctors we were scheduled to see, and then, when we got more assertive with the idea of triple blockade, we were given the appointment with Dr. Tannock. It seems nobody is in a hurry to schedule a timely appointment for Irv, so maybe that's because they all believe we're pushing for the meds NOW, and they believe that delaying it would be the better choice.
I've got a hunch Dr. Tannock may be interested in putting triple blockade to a test. A lot of times leading doctors will be more open and pioneering in their own practices than they are in their papers, where they try to be so careful and not go out on a limb. Even the Strum, Scholz, Lam team have not yet published their triple blockade with maintenance results; they did publish their combined (two-drug) results followed by finasteride maintenance, but I hope they will go farther.

As for thinking Irv has a long time to wait before starting blockade, some doctors, even leaders in other specialties like Dr. Patrick Walsh of Johns Hopkins, might believe that, but many would not. As for the delay in the appointment, I think almost all the experts would feel confident that a few weeks will not make a difference: if blockade is going to work, and the odds are very high that it will, it's going to drive that PSA sharply down even if it has risen a bit in the few weeks before the appointment.

The evidence that should be decisive for early intervention with hormonal blockade, even for those who do not usually favor early intervention, is Irv's PSA doubling time (PSADT). Looking at this may be unnerving , but remember that hormonal therapy is going to reverse this rise. It will be your shield against growing cancer and sword to cut the cancer way back.

Using a PSADT of 1.7 months, about every 52 days, you would get:

2/1/11 PSA 1.71 - latest

3/25/11 PSA 3.42

5/18/11 PSA 6.84

7/7/11 PSA 13.68

8/28/11 PSA 27.36

10/19/11 PSA 54.72

12/10/11 PSA 109.44

1/31/12 PSA 218.88

3/23/12 PSA 437.76

5/14/12 PSA 875.52

7/5/12 PSA 1,751.04

What this shows is that you would not gain much time, perhaps a half year to a year, by waiting to use hormonal therapy. You would avoid the side effects for that time, but then its very likely that vigorous metastases would be growing and likely causing symptoms. At that point, hormonal therapy, while still helpful, is less effective, based on past experience. (Recent developments have probably improved the outlook, but the mists are still clearing on that.) Therefore, it makes sense to use hormonal therapy now.


Quote:
This is very scary. Are you just one out of a million, miracle patients?
Please take a look at information I'm sending.

Quote:
Why is there such a difference of opinion?
I'm convinced its because doctors (and even researchers sometimes) get really set in their ways of doing things, and they, like the rest of us, often resist change. It's natural that that would be especially true if they have been telling patients for years that a certain therapy won't work; they would be reluctant to admit they were wrong. For instance, for years leading doctors at Johns Hopkins, such as Dr. Patrick Walsh, have been telling patients and fellow doctors that early hormonal therapy is wrong and that finasteride is not helpful. He essentially said that as recently as an FDA hearing in the US on 12/1/2010. Some great medical advances have encountered fierce and prolonged resistance. Do you remember the story of Dr. Semmelweiss who discovered the cause of deadly child bed fever? He was terribly hounded by his disbelieving peers who were in effect commiting manslaughter for many of the women they were "helping". If you haven't heard his story, back a couple of centuries now, look it up. Think of the struggle Dr. Jenner went through to get his smallpox vaccine accepted. Dr. Louis Pasteur had a fight on his hands in getting physicians to accept his germ theory of disease. If you have gotten PAP smears, you probably take them for granted, but cervical cancer was the deadliest cancer for females early in the last century. Dr. George Papanicolaou discovered the breakthrough technology, but he encountered fierce resistance and disbelief in getting this vital breakthrough accepted. Until just a decade or so ago there was still resistance to the fact that smoking leads to lung cancer, and, several decades earlier, even the American Cancer Society was part of that resistance. I could go on and on, but I'm sure you see the point. It took me a while to really understand how great resistance to change is in medicine.

Quote:
I just want to make sure that we are doing the right thing by following the immediate triple blockade hormone therapy and not following exactly what these doctors are preferring.
There is an abundance of studies you can review on PubMed that show the result is not impressive if you follow the "standard of care" solutions, especially in a case like Irv's, where it would not be many months before even the most hidebound doctors would prescribe blockade. The problem is that the blockade blockheads wait for the disease to become metastatic, and by then it has built up dangerous momentum.

Quote:
I still feel very strongly about triple blockade because it makes sense and I've looked for negative stuff about ADT3 on the net where people has reported a failure with it, and I just can't find it.
That's exactly what I did back in 2000, as well as calling around and talking to patients and leading doctors. I was surprised by the very high percentages of success with triple blockade and then maintenance during the vacation.

Quote:
I guess I just want to make sure that you're just not a fortunate blip in an otherwise, less than beneficial medication regimen.

Rhonda
"I am not a blip!" I just like that phrase - sounds like a campaign slogan. Actually, as well as I'm doing, and as delighted as I am with my results, I'm not doing as well as most on 1 time or IADT3. I'm envious of most of my fellow patients on one time or intermittent ADT3. You can see from the Leibowitz/Tucker/Roundy results that virtually all low-risk men need just one cycle of thirteen months on full therapy. That goes for a lot of higher-risk patients too, but others, like me, especially with especially aggressive case features, need repeated intermittent rounds of therapy. There are echoes of such results in other leading practices.

Take care and I hope this helps,

Jim

 
Old 02-10-2011, 09:28 AM   #11
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Re: "This disease is going to kill you"

Jim, you ALWAYS help!!!

It's always great reading your messages. You're like the bright light in our world of ominous darkness. I think every prostate cancer patient and the people who love them should be communicating with you. But then, you'd be such a busy guy that your head would be spinning and you'd look like this guy --->

So, maybe we can keep you a little bit of a secret so we still have you to ourselves.

So, one quick question....Zoladex or Lupron??? I think I should start a new thread on that...Yes....in fact, I think I will.

 
Old 02-10-2011, 10:57 AM   #12
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Re: "This disease is going to kill you"

Quote:
Originally Posted by honda50 View Post
... So, one quick question....Zoladex or Lupron??? I think I should start a new thread on that...Yes....in fact, I think I will.
Medically, they are equivalent, as far as I know. There are a number of research studies indicating that.

The experts I follow suggest that a one month shot is better at the start of the first round of blockade to see how the patient reacts both side-effect wise, and PSA, testosterone, and DHT wise (though sometimes the latter test is done later). The one-month-shot is not a hard and fast rule, just preferred.

I've always had Lupron. There is more medicine in the three and four month versions, of course, and that can be more of a pain in the butt, more noticeable at night if it's a pressure point. The nurses I have now give the shot high in the butt muscle, and that results in a lot less discomfort. This is not a big deal, but why experience more soreness than necessary? Wherever given in the butt muscle, the soreness disappears entirely within a few days.

I can go over this again if you start that new thread. That's a good idea as it would get more attention and be easier to catch in a search.

Take care,

Jim

 
Old 02-14-2011, 06:59 PM   #13
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Re: "This disease is going to kill you"

Hi Rhonda,

Here's something you might be able to use in favor of getting finasteride or Avodart added - some recently published favorable research by a PMH team that I just learned about tonight.

I'm going back to one of your recent posts, #6 I believe. You wrote in part:


Quote:
Originally Posted by honda50 View Post
....

We'll work on getting the Avodart next. We're determined to get what we want...and what Irv needs to give him his best chance.

So, is this the way it is for a lot of men with prostate cancer? It seems that we tell the doctors what we want, like being at McDonald's...YES, I want fries (Avodart) with that! It would be nice to have a good doctor who we feel secure with and by whom we feel taken care of. We're going through the most critical health issue of our lives and we are the most alone with it, in the medical sense. It's just very strange.
Okay, here's the citation for the article, and take a look at that team:

Eur Urol. 2010 Dec 28. [Epub ahead of print]

Impact of 5α-Reductase Inhibitors on Men Followed by Active Surveillance for Prostate Cancer.
Finelli A, Trottier G, Lawrentschuk N, Sowerby R, Zlotta AR, Radomski L, Timilshina N, Evans A, van der Kwast TH, Toi A, Jewett MA, Trachtenberg J, Fleshner NE.

Princess Margaret Hospital, University Health Network, University of Toronto, Ontario, Canada.

They looked at men on active surveillance who either were treated with a 5-ARI while on AS or not. They found that those on the 5-ARI did far better, highlighted by a lower rate of pathologic progression, 18.6% for those on a 5-ARI vs 36.7% for those not getting it.

The abstract is available on PubMed.

I was impressed with their research and delighted with the results! This is only one trial, and it was not large - under 300 men, but the result was stunning! I'll bet there's a group at PMH, with Dr. Fleshner involved, that is humming with excitement about the use of 5-ARI drugs.

I hope this helps.

Take care,

Jim

 
Old 02-14-2011, 11:05 PM   #14
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Re: "This disease is going to kill you"

Jim, you are a gem! I just found that trial and printed it out! We have an appointment with Dr. Tannock on Feb. 25 but, before that, we'll be seeing our GP today (Feb. 15) and I will show him the trial and I'll show him an excerpt from Dr. Myer's book, page 62-63. We want that Avodart and are determined to get it.

I have another question. Did you take any medication to prevent gynocomastia? If so, which one? Were there any other medications you took from the outset to counteract side effects? Irv is about to fill that bicalutamide prescription and we're going to request Lupron as the medication of choice as it seems to have, perhaps, the easiest administration...although we realize none of them are a cakewalk.

So, let's say we get the Avodart and can start it the same time as the bicalutamide.....Can both be taken at the same time of day? Is there anything we need to know about how to take these drugs? Are there any other prescriptions Irv needs right away?

We know that before he takes the meds, he needs to get a blood test to establish his baselines, so we have written down everything that needs to be tested in this next blood test.

Jim, we want Irv to be a success story like you. That's what we're aiming for. We want his side effects to be managed well, and we want to gear up for ADT vacations.

In the meantime, we are going on vacation at the end of March. Do you think that Irv will be really tired and will the side effects make it difficult for him to enjoy this vacation? That would be important for us to know ahead of time. What would be the best way to prepare for this?

My goodness, Jim, I don't know how to thank you. You've been one of the few key people who have given us the hope we need to survive this with a positive attitude. I could just give you a great big hug!!! Thank you.

Rhonda

 
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Old 02-15-2011, 09:20 AM   #15
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Re: "This disease is going to kill you"

Hi Rhonda,

Thanks for your kind comments! I thought you would like that abstract! Here are my thoughts and responses to the questions in your just previous post. Of course all of this is from my impressions as a now savvy layman, but with no enrolled medical education at all.


Quote:
Originally Posted by honda50 View Post
... We have an appointment with Dr. Tannock on Feb. 25 but, before that, we'll be seeing our GP today (Feb. 15) and I will show him the trial and I'll show him an excerpt from Dr. Myer's book, page 62-63. We want that Avodart and are determined to get it.
I just checked those pages. They pretty much spell out the key issues.

Quote:
I have another question. Did you take any medication to prevent gynocomastia? If so, which one?
I took no medication and had no radiation - no preventive measures. From what I had read, gynecomastia was mild or did not happen at all for most of us on the combination of bicalutamide and an LHRH-agonist (Lupron). After three cycles of triple ADT, I have had a little growth, but not much; it looks almost like added pectoral muscle. It's possible that that would have happened anyway due to aging with its associated shifting of the hormone balance for males, but I believe it is due to the drugs. (One point toward that view is that I've had testosterone levels on vacation that were well into the normal or high normal range.) There has been no pain or tenderness at all, and that is almost always so for those on the combination of drugs rather than the antiandrogen without the LHRH-agonist. It's a judgement call, and Dr. Tannock might have some good advice on that.

Quote:
Were there any other medications you took from the outset to counteract side effects?
I'll expand your question to include supplements and food, exercise, and medications I wish I had had at the start.

- Fosamax (or any bisphosphonate): I was trying to get this within months of diagnosis, but was not able to get the prescription until September, after my care was shifted from the urologists to my medical oncologist. I had a DEXA scan at that time for a baseline, though it was really about nine months late; I already registered in the osteopenia range, and I suspect that was mostly due to the Lupron. A qCT scan is probably better than a DEXA as discussed in the Primer, especially in the appendix. Along with that, you need to take calcium and vitamin D3. I almost always was taking about 1,000 mg of calcium in supplements and getting a little more from diet. D3 deserves its own line.

-vitamin D3: You and Irv are at ground zero for some of the best pioneering work on D3, and I suspect that Dr. Tannock knows about that work. Dr. Rheinhold Veith of the U. of Toronto is the foremost world pioneer, his essential work opening the way in 1999 to a flood of vitamin D research that is continuing today. A key to success with vitamin D is the 25-hydroxy vitamin D test. The experts I follow want to see results in the 50 to 80 range, or even up to 100. I've had friends find out their levels were below 20, and they have had to get a special prescription vitamin D of 50,000 IU that is approved by the FDA for severe deficiency. Most of us prostate cancer patients just need to supplement a bit with a quality supplement (very, very important). Usual doses range from around 3,000 to 5,000 IU per day. The Myers' book has an outstanding section on vitamin D. It's wise not to take vitamin D with a lot of fiber in the meal; Dr. Myers has explained that that can tie up the vitamin D so that it is not useful. I usually take the D3 and calcium supplements at lunch and dinner, meals where I'm getting relatively low fiber, contrasted to breakfast.

Speaking of breakfast, and carbohydrates, the experts have noted that we ADT patients on an LHRH-agonist tend to crave carbos. They have noted that we often slip into eating larger breakfasts that are loaded with carbs. One expert in particular believes this is a leading cause of our gaining extra weight, particularly around the waist. I regret having to cut down on bread , but I believe it has helped me keep weight gain to a minimum. (I was able to lose the extra weight each time I took a vacation from the drugs. Next time I'm going to try hard to avoid any gain. This time after I started ADT3 it snuck up on me - no problem for two months, lulling me into complacency and a few delicious cinnamon doughnuts at our local coffee shop while I thought my diet and exercise were adequate, then extra pounds that would not disappear.

The Institute of Medicine, an organization that advises both the US and Canadian Governments, as I understand it, recently reviewed vitamin D and produced a timid report that has drawn many harsh comments from vitamin D researchers and savvy physicians. However, they did state that 4,000 IU a day was a safe upper limit.

-a statin drug: I take simvastatin, the cheap generic version of Zocor, and it and lifestyle tactics have enabled me to achieve enviable lipid results (cholesterol, tryglicerides), which I was not able to do with lifestyle tactics alone. If I had it to do over again, I would have begun taking simvastatin when I was diagnosed. That's because accumulating research is indicating that a statin drug goes a long way in reducing death from prostate cancer, and of course it's also great for reducing cholesterol, which is good for your heart. That research also shows that results are better with longer use, especially at the three years point and longer.

I hesitated for the first few years out of concern of an adverse impact on muscles from statin drugs. I knew that was an unusual side effect, actually rare, but it blocked me. As far as I know, I did not suffer that side effect. I probably did experience another, slight shortness of breath. Dr. Myers has talked and written about that, a concern triggered by his own research as a National Institutes of Health pharmacologist earlier in his career, but I do not believe it is in his book. The solution is to take a small dose of Co-Q-10, say 30 to 50 mg daily. (Actually, the original version of his book advises against Co-Q-10, but in fact he favors the small dose if the patient is on a statin.)

That wraps up the drugs.

-Other lifestyle tactics: supplements, foods, diet, exercise and stress reduction. The book you referred to is the best source I know of on these. The new book "Invasion of the Prostate Snatchers" is also helpful. It's medical co-author, Dr. Scholz, is in my mind the leading early advocate of strength training for us PC patients. Aerobic training has been advocated by many for some time, but it has turned out that strength training is important.

I'll just highlight a few tactics that seem especially important, at least based on what is known as of today. Fish oil and fish look important, especially for their omega 3 fatty acids. I'm taking around 4,000 IU of fish oil a day, eating several pieces of herring in wine sauce at lunch daily, and having a fish entree at least twice a week at dinner. Quality pomegranate juice or extract look very important, though one board participant believes he is having success with a lower-cost brand. Avoiding red meat and minimizing dairy food looks wise. Avoiding alpha linolenic acid sources, such as flaxseed or canola oil, looks important, with olive oil having desirable qualities. Lycopene from foods looks wise; I use V8 juice as my main source - breakfast and lunch, but also have at least a tablespoon of cocktail sauce daily; I put a teaspoon of olive oil in the V8 glass for a reason that is fading in memory, probably because lycopene needs some fat for absorption. Most nuts - not walnuts or pecans, especially almonds, are good for us, with one expert advising a dozen almonds with every meal. Minimizing corn oil and not overdoing corn and corn products looks smart in order to hold done excessive omega 6 fatty acid. Vitamin E (not more than 200 IU daily, and with a high proportion of gamma tocopherol - not just alpha) and selenium may be helpful, but there are some genetic aspects here; there are also questions about an unfavorable interaction from vitamin E with statin drugs for some people (not me) and a possible slightly increased risk of diabetes due to selenium (probably just due to chance coincidence in the research). Quality curcumin, from a brand with a proven absorption agent, is looking promising, and there are some others. Eating a variety of fruits and vegetables is considered wise; broccoli deserves special mention. I try to eat it daily. I also consume at least eight bags worth of green tea daily, preserved with a few drops of lemon juice, and steeped at the recommended temperature for at least five minutes, stirring a bit. However, that amount of liquid would almost surely be a problem for Irv in view of his work.

I never had any problem with some of the potential side effects, like anemia, depression, or severe hot flashes. The Myers and Blum/Scholz books are excellent on countermeasures for these and other side effects, which generally affect a minority of patients.


Quote:
Irv is about to fill that bicalutamide prescription and we're going to request Lupron as the medication of choice as it seems to have, perhaps, the easiest administration...although we realize none of them are a cakewalk.
That makes sense to me.

Quote:
So, let's say we get the Avodart and can start it the same time as the bicalutamide.....Can both be taken at the same time of day?
Yes.

Quote:
Is there anything we need to know about how to take these drugs?
I'm sure the doctor will prescribe a Liver Function Test (LFT) for the first few months on the bicalutamide (after Irv has been on it for a few weeks), just to make sure he is not one of the rare patients with a problem handling the drug. One leading doctor I know uses a drug, Ursodiol is one, that helps the liver handle the drug. I'm not sure how important that is with a lower 50 mg dose, but it is probably more important at a higher dose. The Ursodiol type drug can help reverse liver damage if it occurs, as I understand it, and it has proved effective enough to allow some patients with liver problems to resume antiandrogen drugs like bicalutamide, under careful monitoring of course.

The 5-ARI drugs, finasteride and Avodart, are quite mild in the vast majority of cases. Watch out for that regrowth of scalp hair in the male-patter-baldness areas though!

It would be good to review the patient guide that comes with the drugs. I usually take my finasteride and bicalutamide (when I'm on it) with a meal, but I don't think that's a requirement. If you learn anything about special advice on taking them, please let all of us know. Sometimes, as a long-term patient, you can drift away from best practice without realizing it.


Quote:
Are there any other prescriptions Irv needs right away?
There is often some joint and muscle soreness for the first few months of blockade. It has been fairly mild for me, but that, combined with soreness from gym or physical work (such as Irv's painting), often call for an over-the-counter pain relieiver for me. That's about it.

Quote:
We know that before he takes the meds, he needs to get a blood test to establish his baselines, so we have written down everything that needs to be tested in this next blood test.
In addition to PSA and DHT, getting a PAP (prostatic acid phosphatase) could also help. The Primer recommends three other tests, CGA, NSE, and CEA, but my impression is that those are more needed for Gleason 8 - 10 patients where the cancer produces little PSA. These probably would not be helpful, but you might ask Dr. Tannock what he thinks.

My oncologist routinely does a comprehensive metabolic panel and a complete blood count. I've never heard the experts advocate that, but it could be because it is also part of their standard routine.


Quote:
Jim, we want Irv to be a success story like you. That's what we're aiming for. We want his side effects to be managed well, and we want to gear up for ADT vacations.

In the meantime, we are going on vacation at the end of March. Do you think that Irv will be really tired and will the side effects make it difficult for him to enjoy this vacation? That would be important for us to know ahead of time. What would be the best way to prepare for this?
I don't think the adjustment will interfere with the vacation, but it is possible. It's also possible that having a loose schedule will help him adjust - sort of a honeymoon with the drugs. Hot flashes, if they are going to happen, probably won't show up for a few weeks or more (see the Primer). If they do and are severe with excessive sweats - stuff you cannot adequately control with clothing choices and fans, it might help to have a prescription for one of the countermeasure medications in hand. You could discuss that with Dr. Tannock. I've tried to think back to the early months on blockade, and to consider other patients' reports, but that's about all I've come up with.

[QUOTEMy goodness, Jim, I don't know how to thank you. You've been one of the few key people who have given us the hope we need to survive this with a positive attitude. I could just give you a great big hug!!! Thank you.

Rhonda[/QUOTE]

Thanks Rhonda. I'll return the hug for you both! Good luck with this. I have a hunch you will become one of those key people who are able to help many others, perhaps some dedicated and talented doctors at PMH too! (They discovered the usefulness of ketoconazole for prostate cancer patients. One of my buddies has had great success at about the four year point now with ketoconazole after other options did not work for him. Ketoconazole is on my short list of backup options. If you wish to, please pass along my thanks on his behalf and my own to the PMH doctors and researchers.)

Take care,

Jim

 
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