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Old 02-03-2011, 01:44 PM   #1
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Nervous about updated PSA...

Irv just got his second PSA back and we don't like the result at all.

Remember, post-op, it was 1.12 at the lab we went to, and then when we had it done a few days later at the hospital lab, it was 1.19. We were told that this could just be an insignificant discrepancy. However, I didn't like the direction of the so-called discrepancy. So, the 1.19 was done on February 4th. The new result, taken on February 1st from the same lab where we got the 1.12 result, came back at 1.71 with the free being .159 and the Free to Total ratio being 0.09. Whatever that means, I just see the PSA going up and I'm scared....At this rate, it will be doubled in 6 weeks. I feel like we're in a race against this damned monster....I feel like we're in a battle with our medical system..... and I need Irv to be around for a long time. HELP! I just need to see something hopeful....soon.
Rhonda

 
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Old 02-03-2011, 04:11 PM   #2
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Re: Nervous about updated PSA...

I agree with you. You should act now.
Hormonal treatment should be started to control that rise, then you can continue to investigate about IMRT possibility.
Abiraterone acetate, the drug you mention in another post is now available in trials and it has shown to be reliable taken with a LHRH agonist like Lupron. That was also suggested by your doctor.
The drug is in trials for advanced cancer patients, but it can be taken by anybody. I believe that Abiraterone is the drug that will substitute anti-agonists. Discuss with your doctor about such possibility and if there is no drug inter-action that Irv may be taking for other health problem (if any ?). Get to a conclusion soon.
Hope for the best.
Baptista

Last edited by Baptista; 02-04-2011 at 01:34 AM.

 
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Old 02-04-2011, 08:44 AM   #3
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Re: Nervous about updated PSA...

Hi Rhonda,

I'm so sorry for this upsetting turn you and Irv are having to face. I'll put some thoughts in green in excerpts from your initial post. I am posting after Baptista's response.


[QUOTE=srhonda61;4676272]Irv just got his second PSA back and we don't like the result at all.

Remember, post-op, it was 1.12 at the lab we went to, and then when we had it done a few days later at the hospital lab, it was 1.19. ... So, the 1.19 was done on February 4th.

Is the date right? It does not line up with the Feb. 1 result of 1.71 a few days earlier. I'm thinking you may have meant January or December instead of February.

Quote:
The new result, taken on February 1st from the same lab where we got the 1.12 result, came back at 1.71 with the free being .159 and the Free to Total ratio being 0.09. Whatever that means, I just see the PSA going up and I'm scared....At this rate, it will be doubled in 6 weeks....
Whatever that earlier date was, it's clear the PSA is rising rapidly unless there was a lab error. That happens; it's happened to me (mistaking a true value of around 8 for a reported value of about 20 ), which was soon corrected with additional tests). However, as you no doubt feel, such an error is unlikely. Still, often there is remaining blood available that can be retested, and a confirming test could be done. You could request that. I don't see that the free PSA and ratio results means much at this point, post diagnosis.

I'm with Baptista in thinking that hormonal blockade would be the thing to do now. It should knock the PSA way down and do it quickly, especially if it is combined blockade, and almost certainly if it is triple blockade. I think you will be amazed and greatly relieved.

I would not wait to start with triple blockade if you cannot find a doctor who will agree to that. I'm convinced triple is decidedly best, but often the untimely best solution is not as effective as the timely good solution. I need to learn more about abiraterone, but I'm still thinking it's mainly for more advanced cases than Irv's, cases where first line hormonal blockade (includes combined and triple blockade) no longer works. Also, Casodex is now available as generic bicalutamide, which has brought down the cost in the US by more than two thirds. Abiraterone has not even been approved by the US FDA yet, but, when approved, I'm thinking it's likely to be expensive.


Quote:
I feel like we're in a race against this damned monster....I feel like we're in a battle with our medical system..... and I need Irv to be around for a long time. HELP! I just need to see something hopeful....soon.
Rhonda
Do you have a copy of Dr. Myers' book "Beating Prostate Cancer: Hormonal Therapy & Diet." If you do not, please get one and read it through. If you have read it once before, reread it now; it will no doubt mean much more in your new situation. It delivers a big dose of optimism and has examples of men in situations more challenging than Irv's who had amazing success in controlling their cancers. In particular Dr. Myers includes four illustrative case studies with about two to three pages of detail for each. For example, "Case Study #2: AP" had a PSA of 3,488 in September after routine blood tests, and seven days later it had risen to 3,905. Within ten weeks of starting Lupron and Casodex, with the dose of the latter boosted to 150 and Avodart added about a month after starting the first two drugs, his PSA had fallen to 0.01. This man had an awesomely profound response, but many of us have had slower but also strong responses, enabling us to reduce our PSAs to <0.05 or <0.01.

I know it seems like the end of the world is coming, but be of good heart and keep your spirits up. We have awesome resources on our side!

Take care,

Jim

 
Old 02-04-2011, 08:47 AM   #4
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Re: Nervous about updated PSA...

Oops, Jim..You're right...I meant January 4th, of course. Sorry about that....Now I'll go on to read the rest of your message.

 
Old 02-04-2011, 09:27 AM   #5
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Re: Nervous about updated PSA...

My feeling, too, Jim, is that I would like to knock that cancer down ASAP. It seems, if the cancer continues to grow at the same rate, then the doubling time is less than 2 months. I don't like that very much.

Have you ever heard of the cancer growth tapering off? Or does it just tend to pick up speed? Damn cancer cells!!!

So, apparently, we have to wait until the end of next week to hear from the medical oncologist to make an appointment. Does this seem like a long time?

We went to see our GP and he talked about waiting to delay the side effects of the hormone therapy...My answer was that it would be better knock down the cancer while it's weak and the patient is strong, rather than allowing it to grow and possibly mutate.

I don't want Irv to have side effects, but I figure, to wait, is just to delay the inevitable and, perhaps, make the situation worse in the long-run. I figure, the sooner he gets on the meds, the sooner he gets to a med vacation...and I also think that the meds will work better on less cancer than more....but, I'm not a doctor...and I have no proof...and I'm just reacting to what I'm reading and finding out from others....and, I guess, each person reacts to the meds in a different way. People say, "don't panic". I just envision these horrible cancer cells constantly multiplying...as he sleeps, as he is awake....This is how it feels to me...and maybe I'm turning into one of these overbearing, "know-it-all" types of wives who the doctors love to hate...."Oh no...here comes trouble"....but it's only because I don't want to imagine life without Irv...Not in 5 years, Not in 10 years...and hopefully, with a little luck (as Dr. Fleshner said), not in 15 years either. This situation, I have to say, is taking my hope away from that magical 15 year mark....but I haven't given up yet....and I won't.

 
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Old 02-04-2011, 12:43 PM   #6
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Re: Nervous about updated PSA...

Hi again Rhonda,

I can help explain some of this.


Quote:
Originally Posted by srhonda61 View Post
My feeling, too, Jim, is that I would like to knock that cancer down ASAP. It seems, if the cancer continues to grow at the same rate, then the doubling time is less than 2 months. I don't like that very much.
Memorial Sloan Kettering Cancer Center in NYC has published an aid to determining doubling time, and I used that, first with the first and second values, then with the second and third values, and finally with all three. The results are pretty consistent with all three values lining up close to the predicted exponential slope: a doubling approximately every 1.74 months, which would amount to 6.75 for the first year. That's moving up at a good clip!

Quote:
Have you ever heard of the cancer growth tapering off? Or does it just tend to pick up speed? Damn cancer cells!!!
The rate almost always stays about the same for a specified time period; in Irv's case, in about 1.74 months the cells will double, as you have realized. What that means is that many more cells are produced for each successive doubling: say 1,000 become 2,000 (an increase of 1,000), then 2,000 become 4,000 (an increase of 2,000), then 4,000 become 8,000 (an increase of 4,000), and so on, as you no doubt already know. The rate doesn't accelerate, but the number of cells produced in that 1.74 months sure does. As far as I know, the rate does not taper off, unless -

Unless there is some kind of intervention. It could radiation. It could be lifestyle tactics. It could be hormonal therapy, or some combination. Each of those can alter the rate, tapering it, greatly reducing it, or reducing it sharply so that cells are dying instead of doubling. That's what hormonal therapy typically does.


Quote:
So, apparently, we have to wait until the end of next week to hear from the medical oncologist to make an appointment. Does this seem like a long time?
Ouch! They won't even make the appointment now? Yes, that does seem like a long time, but it is Friday and next week is just three days away. I hope they can see you both soon. Actually, even though Irv's cancer doubles quickly, he knocked it back so far that it is not going to grow much if you can go to that appointment in a fairly short span, say, a few weeks.

Quote:
We went to see our GP and he talked about waiting to delay the side effects of the hormone therapy...My answer was that it would be better knock down the cancer while it's weak and the patient is strong, rather than allowing it to grow and possibly mutate.
Good for you! Many GPs know little of the finer points of prostate cancer, especially about hormonal blockade. Often it seems that they have heard some horror stories about side effects, but they haven't a clue that most of us only experience some (or even none!) of the effects, that they are often mild or quite tolerable, that most can be effectively countered to a considerable extent, and that they are all reversible for the vast majority of us when we take our therapy vacations, if we are not on blockade for longer than two years and are aged 70 or over. Many of them don't realize that intermittent therapy (or just fairly short term one time therapy!) is coming to be favored over continuous therapy for most patients with early recurrences. They also don't realize that hormonal therapy works best when it is applied early on. GPs aren't alone in that. Urologists are notoriously ignorant, though there are some good ones, and even medical oncologists have some pretty serious gaps in their knowledge. A lot of this is not rocket science, but so many doctors just are not paying attention, are not observant, or are not connecting the dots. I've been amazed at this situation over the years. I expected more from these clearly very intelligent people in the medical community!

Quote:
I don't want Irv to have side effects, but I figure, to wait, is just to delay the inevitable and, perhaps, make the situation worse in the long-run. I figure, the sooner he gets on the meds, the sooner he gets to a med vacation...and I also think that the meds will work better on less cancer than more....but, I'm not a doctor...and I have no proof...and I'm just reacting to what I'm reading and finding out from others....
You're right. Unfortunately, we are going to have to wait a while for that proof. I'm really counting on the trial led by Dr. Oliver Sartor. However, there's quite a bit of strong informal evidence from practices of the experts who have pioneered this therapy. These doctors, in contrast to many of their peers, are good at paying attention, observing, connecting the dots, and just plain thinking! (They also care deeply! )

Quote:
and, I guess, each person reacts to the meds in a different way.
That's true, but you'll find most of us traveling somewhere on the same broad highway. We've got a good idea what that highway looks like. It's not like exploring and being surprised in an unknown continent or on a distant planet.

Quote:
People say, "don't panic". I just envision these horrible cancer cells constantly multiplying...as he sleeps, as he is awake....This is how it feels to me...and maybe I'm turning into one of these overbearing, "know-it-all" types of wives who the doctors love to hate...."Oh no...here comes trouble"....
Once you start counterattacking the cancer, you can envision more comforting images. Lifestyle tactics can help with that - things you can continue to do now. They are probably already making a difference, though they are not enough to do all the work for a challenging case.

As for the know-it-all aspect, I'm very familiar with that. When I'm at a support group, a hearing, or a medical research convention, I try to be very tactful but make my points clearly and assertively. I usually lean heavily on published research, and it helps to ask questions that are backed by the research so that the doctors will put their own minds in gear rather than getting defensive. As an example, to a panel of active surveillance program doctors, I might ask something like "I know that Dr. Schroeder is comfortable with patients as young as 55; is your program taking on patients that young or younger?" That approach usually works, but it's not easy. It took me years to see that I was like the little kid in the parable who was the only one who observed that the emperor was wearing no clothes. At first you think that you must be wrong and the others right because there are so many of them and they have the same opinion. You come to realize that they don't have it right, and you begin to find others who have seen the same light that you have and are experiencing the same success that you are having. You find out that there are doctors who understand what to do and who are trying hard to get the word out to their colleagues! That's a good feeling!


Quote:
but it's only because I don't want to imagine life without Irv...Not in 5 years, Not in 10 years...and hopefully, with a little luck (as Dr. Fleshner said), not in 15 years either. This situation, I have to say, is taking my hope away from that magical 15 year mark....but I haven't given up yet....and I won't.
The best advice I heard on giving up came from Winston Churchill: "Never, never, never, never, never!" I think you both are going to make it through this.

Take care,

Jim

 
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Old 02-04-2011, 09:59 PM   #7
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Re: Nervous about updated PSA...

Jim, I know what the goal is with PMH. It's to get Irv's PSA to go up 3 times and then get him into a clinical trial. This is the way I feel about that: It is a very beneficial gesture to be a part of research to help with prostate cancer patients in the future. However, my concern is here and now with Irv and beating down the cancer ASAP!!! We spoke to a man at our support group this past week who's been involved in three clinical trials and he's got cancer all throughout his body and, statistically, he has only 3 months left to live. Hormone therapy only lasted for 5 years for him.....single blockade.

We saw our GP today and he said that we should speak to the medical oncologist and tell him that we'd like Irv to be on the triple blockade, that we should ask that if they believe there would be no added benefit, would there be any harm in adding the two extra drugs. He said that if they don't want to do it because they feel it has no benefit, but that it won't harm Irv, then he would prescribe the drugs. We just have to figure out a way to get those drugs into him as fast as possible.

Jim, what would you suggest would be the best way to go about getting these doctors to agree to our request?...I don't think that any studies would be enough to convince them as, you say, there hasn't been much to prove the benefit of IADT3. I CAN tell you that I find it alarming to think that these doctors seem to think that waiting would be better to delay some of the horrible side effects of the drugs....I believe that would just exacerbate the problem in the end.

I think I've been repeating myself a little here...just because I'm feeling a little distraught and lacking in control over this situation. I need reinforcement about what exactly we need to say and do to get what we think is best. So far, I just think I may not be presenting myself in a way which doesn't get some backs up.

Thanks again, Jim, for being so incredibly generous with your time answering my questions. And thanks, also, to others here too. It means so much to me.

Rhonda

 
Old 02-04-2011, 10:16 PM   #8
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Re: Nervous about updated PSA...

One other thing....Have you heard about ALLDAYCHEMIST in India? I keep hearing about it as a very reliable source for medications. Charles (Chuck) Maack, who writes a lot of documents on prostate cancer and who is a prostate cancer advocate/mentor was the first person to recommend this route.

I hope you'll Google his name and check him out. He's an advocate of IADT3 who has a ton of information, too.

If you get a chance to look him up, and ALLDAYCHEMIST, it would be great to get your opinion.

 
Old 02-05-2011, 07:35 AM   #9
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Re: Nervous about updated PSA...

Hi Rhonda,

You wrote about Chuck in your latest post:


Quote:
Originally Posted by srhonda61 View Post
One other thing....Have you heard about ALLDAYCHEMIST in India? I keep hearing about it as a very reliable source for medications. Charles (Chuck) Maack, who writes a lot of documents on prostate cancer and who is a prostate cancer advocate/mentor was the first person to recommend this route.

I hope you'll Google his name and check him out. He's an advocate of IADT3 who has a ton of information, too.
...
You wrote earlier about Chuck, and I drafted a long reply that never got sent - just got burried as our daily tasks piled up. I know Chuck well and consider him among the most knowledgeable prostate cancer survivors. (Maybe that's partly because we are in firm agreement on just about everything. ) He has an unbelievably great capacity for caring for others and sharing what he knows. As you know, I try hard; but Chuck just operates at a level above most of us - just amazing! He's a wonderful person. I haven't heard about ALLDAY CHEMIST, but I would trust it if Chuck recommends it.

By the way, he's going to a conference in Orlando in a few weeks known as Innovative Minds in Prostate Cancer Today (IMPaCT). It is sponsored by the Department of Defense in their role as manager of the Prostate Cancer Research Program arm of the Congressionally Directed Medical Research Project, which directs about $80 million per year toward prostate cancer research. This funding is much smaller than the funding directed by the National Cancer Institute against prostate cancer, but it is directed at the special niche of high "risk/high potential reward" research; the NCI is more oriented toward step-by-step progress. Both strategies are needed and complementary, and I hope that both efforts survive the budget challenges facing the Government.

IMPaCT attendees will include four groups: researchers who will be reporting results from their funded grants over the past several years, other leading scientists and doctors, survivors who have helped review and select the proposals that have been funded, and the DoD staff that manages the program. The conference will be packed with leading scientists and doctors, together with about 200 survivors, and there will be great opportunities for interaction and questions. I'm hoping to report some encouraging developments from the conference.

This is one of the US groups closely associated with the strong international tide of emerging advances in prostate cancer technology. Their work is one of the reasons that you, Irv and I can be hopeful long-term.

Regarding what you should say to the doctors, here's what I'm thinking after reading your posts since the recurrence. I think you have homed in on PMH's approach: they want Irv in a clinical trial and need three rises in PSA so he will meet eligibility requirements for the trial. I'm sure they want him to do well, but they have a built-in conflict of interest because they wear both physician and scientist hats. It's a conflict of interest that is most likely both subconscious and unavoidable. Leading research centers like PMH are often hungry for patients for their clinical trials, and I have concluded this makes doctors at such research-oriented institutions, who probably are very aware of trial needs, less ready to manage patients on other therapies that could help them. Dr. Mark Scholz has specifically addressed this conflict of interest. You may need to get away from the major university setting to free yourselves from the pull of research.

It looks like you've had a major breakthrough in getting the GP on your side! It's wonderful that he (or she) will speak to the oncologist about your wishes, and it's wonderful that he will be willing to prescribe the drugs if they will not. Would it be that the oncologist would prescribe the LHRH-agonist and antiandrogen and the GP prescribe the Avodart or finasteride? That could work, and you would have the oncologist's expertise in managing the case, but it would be ideal to have one doctor in charge of the whole case. If the GP is finally the one, and if you so wish, we can go over the dozen or so key details if you wish - drug choices, administration, monitoring, side effect countermeasures, and decision making, and I can give you leads to guidance from the experts. You might want to give a copy of the Scholz or Myers books, or both, to the doctor, with bookmarks and highlights for some of the key pieces of advice. I'm hoping the oncologist will be willing to heed your wishes.

If you and Irv talk to the PMH oncologist again, I think you should politely but assertively state that triple blockade will give you more peace of mind than being in a research study, that you have high confidence in triple blockade, and that you do not wish to participate in research at this time. Repetition is sometimes needed. Back in early 2000, I thought, naively, that doctors picked up on information we gave them and automatically somehow registered it in permanent memory where it was seen from the very best viewpoint, leading to ideal decisions. It just does not work that way. Doctors, even brilliant ones, are limited by their experiences, biases, and pressures from colleagues. I must have repeated my interest in triple therapy at least three times and my interest in bone density assessment and protection at least four times as I met each month with my urologists over more than a half year, providing research literature along the way, before my very good urology team got serious about referring me to a medical oncologist. I'm convinced the repetition and polite assertiveness helped.

Congratulations again on getting the GP on your side! I remember that he (or she) does not fully understand hormonal therapy, especially the side effect angle, but I think the doctor has the priceless asset of being able to listen to you, take you seriously, and be willing to move beyond his comfort zone. (That's a pretty good description of my oncologist, by the way.)

Your good news has made my day! I realize this is not yet where you want to be, but you are on the way!

Take care,

Jim

 
Old 02-05-2011, 08:34 AM   #10
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Re: Nervous about updated PSA...

Thanks, Jim. However, what I didn't mention is that he did end up noticing my assertiveness in a way which I probably communicated as "I want" as opposed to what "Irv wants"....Fact is, it's ME who has been looking into everything and it might just be, perhaps, that Irv's longevity is even more important to me than it is to him. I seem to be far more concerned at this point....Maybe the seriousness and the reality of this situation hasn't quite sunken into him yet.

And, the GP went on to say that perhaps the oncologists feel that waiting would be better as opposed to having Irv suffer the side effects before he has to. He seemed to understand and accept that philosophy....

So, with that being said, I just hope that he doesn't change his mind or that the doctors at PMH don't make it difficult for our GP to agree to prescribing those drugs.

< edited >

Problem is, I think, as far as Canada is concerned, this is black market...and they just might wise up to it and stop it. Really, these drugs are expensive...even the cheap ones....so it would be great if we could, at least, get away with getting Irv's drugs online....and when I feel that the possibility is there that we can get those drugs, no matter what, it gives me a whole lot of peace of mind.

On the other hand, I can't help but think how my best friend in this whole world is in big trouble.....I can just see the reaction of people at the other end of my messages thinking...Oh no, that guy is in trouble....I know you feel differently, at least for the meantime and it is guys like you who make this nightmare just a wee bit more tolerable.

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Old 02-06-2011, 09:46 PM   #11
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Re: Nervous about updated PSA...

Hi there. Unfortunately I made a mistake and posted the name of a website. I'm trying my best to abide by the rules, but when going through this stuff, I guess I get absent minded at times.

I was so upset when I was suspended. That's why my user name has changed and I can't seem to change it back. I really need all of my wonderfully, valuable contacts here. I woke up feeling such anxiety and sadness this morning and I've been feeling rather off the whole day....achiness in the chest and all.

I keep thinking about the rapid rise in Irv's PSA and I'm just so traumatized by that. I also feel drained by all of my time spent dealing with this...and asking Irv, "Have you taken your supplements....Have you taken your Viagra/Levitra/Cialis....Have you pumped....When are you going to join the gym" and saying to him, "Don't eat this, Don't eat that...Eat this...." and answering his questions, "Is it ok if I eat this? What pill should I take tonight?"

I feel so drained.....I feel like this is going to get the better of me before it gets the better of him. I'm sad...I'm tired...I'm worried....

I know, this is not a very productive message but I just had to communicate my feelings. It's been a bad day. Thanks for the space to vent.

Rhonda

Last edited by honda50; 02-06-2011 at 09:47 PM.

 
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