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    Old 02-25-2009, 08:03 PM   #1
    nharper
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    father diagnosed...need honest responses

    My father has recently been diagnosed with stage d2, gleason 9, psa 32. It has spread to his spine and liver. He is tolerating treatment (hormonal and taxotere) well, but I really need to know what kind of time frame we are looking at, in terms of how much longer he will be with us. I don't think he would tell me, even if he did know. please, someone give me an idea

     
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    Old 02-26-2009, 08:29 AM   #2
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    Re: father diagnosed...need honest responses

    Hello nharper,

    Oh wow! I'm so sorry your dad, you and your family have had this rough entry into the world of prostate cancer.

    But the honest answer is that no one can say how long, and even whether your dad will die from the disease. He has a very challenging case, but coming from someone with a challenging case, me, he may respond very well to some approaches that leading doctors have been using for some time that are coming into more general practice. I'll insert some comments in green. Jim


    Quote:
    Originally Posted by nharper View Post
    My father has recently been diagnosed with stage d2, gleason 9, psa 32. It has spread to his spine and liver.

    There are certain vital (almost literally mean that word) workups and approaches for patients with spread to the bones. Is the spine the only area of detectable spread to the bones, and was spread to the spine detected with a bone scan? (Highly likely, but there are other possibilities.)

    Your dad also needs to have a Bone Mineral Density (BMD) scan. That doesn't check for cancer, but assesses bone density instead. Decreased bone density is epidemic among prostate cancer patients at diagnosis (very likely me, documented osteopenia about ten months after diagnosis), probably because some of the causes of prostate cancer and of decreased bone density are the same or related, with insufficient vitamin D being at the top of the list! His BMD scan should probably be a qCT (quantitative CT) type rather than the more common DEXA scan for reasons you may be able to research but which are very well explained in "A Primer on Prostate Cancer - The Empowered Patient's Guide," Dr. Stephen B. Strum, MD, and Donna Pogliano (activist, educator and wife of a PC warrior/survivor). Hormonal blockade also has a strong tendency to decrease bone density at least somewhat for most of us.

    Countermeasures are key. For me that is currently Boniva, the medication Sally Fields endorses on TV, which has proven a lot more convenient than Fosamax. While that has worked well for me, neither drug is considered ideal for men with bone metastases like your dad because far more powerful options are available. Typically, such a patient will be treated with rather frequent intravenous dosing with Zometa. Zometa not only helps slow down density loss, stabilize it, or reverse it, but often does the same for bone mets! It does have side effects that sometimes occur, with a fairly rare jawbone problem that can be serious. However, that problem is considered highly unlikely if dosing is at least three months apart. More frequent dosing (as often even as less than a month apart) may be on balance desirable. Calcium and vitamin D3 supplementation is needed while on bisphosphonate drugs like Fosamax, Boniva and Zometa.

    A vitamin D test is important, with the 25-hydroxy vitamin D level monitored after the initial workup. The leading doctors I follow like to see that level between 50 and 100, and less than 30 is an indicator of a problem that needs urgent attention. Sometimes that means dosing with an FDA approved 50,000 IU vitamin D pill until the level improves!

    Inadequate vitamin D can lead to many problems, and balance is one of them. Has your dad had some balance problems?

    The liver is not a common site for PC mets, but it does happen. Hopefully the hormonal blockade and the taxotere will help.


    He is tolerating treatment (hormonal and taxotere) well,

    What kind of hormonal treatment is he on? I'm a strong advocate for triple blockade, including a drug from the LHRH-agonist class (such as Lupron, Zometa, Viadur, or Eligard), plus a drug from the antiandrogen class (Casodex is the best, but flutamide and some other options may serve well), PLUS a drug from the 5-alpha reductase inhibitor class, with Avodart favored, but finasteride an option, especially for men with a genetic problem with Avodart. Many doctors are entirely too conservative in my savvy layman's opinion (no enrolled medical education), and they fail to prescribe the second and third drugs. The Primer has outstanding coverage of the triple blockade approach.

    A new drug was just approved that may cover the first two classes above - not completely sure about that yet. It is known as degarelix.

    We may have a drug approved this year that appears to work very well with taxotere. It is known as Provenge. It will be extremely expensive, perhaps $40,000 to $60,000 for a full course, but insurance would probably cover a huge chunk of that.


    but I really need to know what kind of time frame we are looking at, in terms of how much longer he will be with us.

    Does your dad have a doctor who is neutral or pessimistic toward his case? That would not be unusual, given the challenging aspects, but if possible he should have one of the doctors who specialize in prostate cancer and have had considerable success with patients like your dad. One of the key drugs such doctors are now using is Leukine, which is a powerful immune system booster. I can't recommend too highly the book "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD, a very well known medical oncologist specializing in prostate cancer. He discusses Leukine and gives several inspiring examples of successful use in men with PSAs in the thousands. He also give a whopping dose of optimism in the first chapter.

    I don't think he would tell me, even if he did know. please, someone give me an idea
    I could refer you to published research which would give some idea, but there is a huge problem with that: the men in those studies were often men treated quite a while ago, who were not able to take advantage of the great advances that have and continue to occur. If those same men were treated today, they would often do far better.

    There is another problem with survival statistics related to time after failure of hormonal blockade and survival with chemotherapy. The problem is that patients almost always enter clinical trials quite a while after hormonal blockade no longer controls their prostate cancer adequately. But the trial managers often do not often have sound information on that date of hormonal therapy failure, so, as a convention, they use the date of trial entry for failure. Well, that leads to artificially much shorter documented survival time. Also, a great many doctors give up on hormonal therapy when they have not used it skillfully; they give up while the patient could still benefit greatly from well-done hormonal therapy. That too makes it hard to interpret the real length of likely survival. I can give you a number for metastatic patients if you want it, but it is subject to what I have stated in these paragraphs.

    If old methods of treatment are used, if the doctor just does the usual number for just another old, very sick man, if the man succumbs to despair, then he probably will not live long. On the other hand, if he is able to take advantage of what is now available and what will become available, he may be able to turn this disease into something chronic but quite bearable.

    Good luck to you and your dad with this great challenge, and please feel free to ask followup questions.

    I hope you and your family can keep your spirits up.

    Take care,

    Jim

     
    Old 02-26-2009, 02:06 PM   #3
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    Re: father diagnosed...need honest responses

    Quote:
    Originally Posted by nharper View Post
    My father has recently been diagnosed with stage d2, gleason 9, psa 32. It has spread to his spine and liver. ... but I really need to know what kind of time frame we are looking at, in terms of how much longer he will be with us. I don't think he would tell me, even if he did know. please, someone give me an idea
    Hi again nharper,

    I've got some more time and thought you might like to read a few brief passages from the books I mentioned.

    This is the first time I've provided some excerpts, and I realized that other board participants could also learn a lot more about these books. Therefore, I'm putting all that information in a new thread with a different title in a few minutes, with a copy of your original thread at the top. Please check it out. I'm sure you will be encouraged!

    Jim

     
    Old 05-06-2009, 11:58 AM   #4
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    Re: father diagnosed...need honest responses

    Hi again...I'm having a very hard day and would like some opinions.

    My father went through a 3 month cycle of Taxotere and Zometa. He had absolutely no side effects and is up and active all day. No weight loss, no hair loss, nothing. He seemed to be doing great.

    Last week he went for a scan of the affected areas, and today we got the results.

    Not only has the Taxotere not killed any cancer, the cancer has actually grown and spread.

    The only thing left is to see if he is eligible for any clinical trials.

    Please, someone help me. What are his chances? I'm just so, so sad.

     
    Old 05-06-2009, 02:56 PM   #5
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    Re: father diagnosed...need honest responses

    How hard it must be not to see the progress that you had hoped for! I'm inserting comments in green. I hope you will see some other comments too. Jim

    Quote:
    Originally Posted by nharper View Post
    ...
    My father went through a 3 month cycle of Taxotere and Zometa. He had absolutely no side effects and is up and active all day. No weight loss, no hair loss, nothing. He seemed to be doing great.

    That is a hopeful sign.

    Last week he went for a scan of the affected areas, and today we got the results.

    Not only has the Taxotere not killed any cancer, the cancer has actually grown and spread.

    The only thing left is to see if he is eligible for any clinical trials.

    Actually that is not the only option. Many drugs that have already been approved can be used "off label," provided the patient is advised of the risks. A fair amount of my treatment has been based on "off label use," including use of finasteride and thalidomide in my situation.

    Have the doctors brought up possible use of the drug leukine? In some patients it works what seem like miracles. Do you have Dr. Myers' book. He writes quite a bit about leukine, including some examples of awesome responses. You can find more about this drug by doing some research on your own, perhaps including www.pubmed.gov, a site we can use here because it is Government sponsored, with a search string like (without the quotes) " prostate cancer AND leukine ". I just did that and got five hits. The third hit (as of this moment), is a paper with Dr. Eric Small as the senior (last) author. He is the expert who is the real driving force in this field.

    There are other options, but they too are experimental. Patients sometimes have good responses to high-dose thalidomide, or now, an improved version known as Revlemid (or Revlimid, not sure of spelling). There are quite a few other apporaches.

    Is he following recommended tactics that use nutrition, diet and supplements? For instance, if he is wolfing down red meat, pork, egg yolks and flaxseed oil, that's not going to help.


    Please, someone help me. What are his chances? I'm just so, so sad.
    I wish we on the board could help more. Maybe if you try your hand at researching some of the options, that will help pull you up.

    If your dad does not change tactics, his chances are poor. If he does change, he has a shot at a real extension of good quality life - no guarantees, but a legitimate chance.

    Hang in there and take care,

    Jim

     
    Old 08-20-2009, 12:30 PM   #6
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    Re: father diagnosed...need honest responses

    Hello! Quick update - I'm so happy today!

    After 11 weeks on a clinical trial, the lesions in his liver have reduced in size by 25%, and the lesions on his bones have also shrunk!

    Here's hoping this continues

     
    Old 08-21-2009, 08:07 PM   #7
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    Re: father diagnosed...need honest responses

    Congratulations on that wonderful news!

    Jim

     
    Old 08-22-2009, 04:46 AM   #8
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    Re: father diagnosed...need honest responses

    n harper,
    sorry to hear about your father's condition, but that is great news about the reduction, I myself, was resently dx with PC, and have found this forum to be extremely knowledgeable and encouraging. Though i can not offer the experience and broad knowledge of others here, I can say, one of the best things you can do for your father is to try and keep a positive attitude and a smile on your face. If your relationship with your father is anything like mine with my daughter the last thing I would want to see, is my my daughter sad, and down on life because of the situation I am in. I realize it will be tough, but try and stay as upbeat as possible, it will help your father's spirits. Best of luck.

     
    Old 03-04-2011, 09:31 AM   #9
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    Re: father diagnosed...need honest responses

    so sorry to hear your news , think positive and absorb all the support this site has to offer

     
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