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  • New diagnosis, age 48 no symptoms

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    Old 10-12-2012, 12:50 PM   #16
    goto241
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    Re: New diagnosis, age 48 no symptoms

    First I wish you and your husband only the best. This is something that no one should have to go through. I was curious did your husband ever have any previous psa tests prior to this? If so do you know what his numbers were?

     
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    Old 10-12-2012, 01:00 PM   #17
    Mia99
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    Re: New diagnosis, age 48 no symptoms

    Thank you for your consideration. He had never had a test before. I called to ask, hoping it would give me an idea how fast it had risen. The first one would have been in two years when he turned 50. The PSA at diagnosis was 358 and he will have his first re-check on Oct 24 after the initial 4 weeks of lupron.

     
    Old 10-12-2012, 01:12 PM   #18
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    Re: New diagnosis, age 48 no symptoms

    Oh ok, wow I wish that the standard would be for everyone to start getting checked when they turn 40. Because of my family history that's when I started to get tested and everything is good so far. Again I wish only the best for you and your husband.

     
    Old 10-12-2012, 01:36 PM   #19
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    Re: New diagnosis, age 48 no symptoms

    Boy me too, and thank you. Continued good health to you!

     
    Old 10-12-2012, 02:47 PM   #20
    Tall Allen
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    Re: New diagnosis, age 48 no symptoms

    I'm so glad that your doctor at Cleveland Clinic has given you renewed hope.

    As you know, I would like to see Taxotere tried earlier in the process, and am glad that Cleveland Clinic has the clinical trial. My anecdotal sample of one -- a man in Australia -- was able to go 5 years without any HT before any signs of progression came back. Your doctor is right that as chemo goes, Taxotere is comparatively mild, but the adverse reactions can be quite serious and require constant monitoring. One man I know said he hardly noticed any side effects, while another man, in a more advanced stage, found it quite debilitating. I think your husband is right to consider it carefully. If he tries it, he can always stop the therapy at any time if he has adverse effects -- in fact, his doctor will stop it. In many clinical trials the men who get placebo initially may be switched to treatment (i.e., Taxotere) if the study meets the desired survival endpoints. Several clinical trials (e.g., Xtandi) have been ended early and "unblinded" because the drugs worked better than expected and all the men in the study were then given the drug. If he happens to be in the placebo group he is certainly no worse off than he is now.

    The other advantage to taking Taxotere earlier is that it allows him to take the more effective chemo, Jevtana (cabazitaxel) later. As things stand now, Jevtana is only FDA-approved for men who have tried Taxotere.

    Did your doctor put him on Zometa or Xgeva for the bone mets?

    To my mind, the greatest benefit of nutritional interventions is that it allows you to feel that you are doing something to help. Speaking from my own experience, the feeling of helplessness in the face of an incurable disease can be overwhelming. I know I've had a tendency to grasp at straws based on the flimsiest of evidence, and it made me feel better, more in control of a situation that is inherently out of my control, to do so. As long as the dietary interventions you want to do are not a substitute for evidence-based medicine, and don't in any way interfere with his treatment, I see it, at the very least, as a much needed psychological boost. Really, what's the harm in drinking pomegranate juice if it makes you feel better? Remember that heart healthy is prostate healthy. I think the doctor gave you very good advice to rigorously exercise, eat a balanced diet and keep the weight down. That alone will help defend against some of the worst side effects of hormone therapy.

    - Allen

     
    Old 10-12-2012, 04:38 PM   #21
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    Re: New diagnosis, age 48 no symptoms

    I do appreciate talking to you, Allen. I'm sold on the nutrition benefits so my job is making a convert of my husband. I adopted an eating plan a couple of years ago -- just to maintain weight and be healthy -- that is pretty much perfect for this. So it's not the knowledge we lack. The benefit just makes sense to me, though. I really don't think it's just some random action to make us feel empowered... there is some real physiology related to inflammation. Although empowerment is an excellent side benefit. As for the study, it's a random 50-50 draw but you know up front if you're getting Taxotere. No placebos. Your info about Jevtana is not something I've heard before, so that's priceless info, thank you.

    It seems wrong and right at the same time to recognize something positive here. It's amazing how something like this can *immediately* make priorities clear and give you 20/20 vision about what is important. Little peeves and issues really just drop away. The trick now is to learn how to treasure the moment rather than wasting the time on worry. It's a big trick but one we have to figure out.

     
    Old 10-12-2012, 04:41 PM   #22
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    Re: New diagnosis, age 48 no symptoms

    Oh and no, I actually forgot to ask about the Zometa but will be emailing that with a few followup questions. They both suggested an OTC supplement. Maybe they wait for Zometa b/c of potential side effects.

     
    Old 10-19-2012, 12:21 PM   #23
    Mia99
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    Re: New diagnosis, age 48 no symptoms

    We are planning to apply for the trial. The local doctor was able to open the study here so treatments would be ten minutes away instead of 3 hours. By the end of next week we'll know the outcome of the screening and randomized assignment. I was impressed by our doctor's eagerness and ability to take action. Cleveland Clinic did tell us our local doctor is very good so that makes me feel better. We will keep both in the loop going forward.

    Only one (big) concern based on my reading. How likely is it to have cognitive effects-- "chemo brain" I've seen it called-- from six treatments at 3 week intervals? Is it dramatic enough to be a consideration and is there a way to combat it? Has anyone had experience with this or have advice to offer?

    It may be premature, but in general are there actions we can take to minimize side effects or make him more comfortable?

    Thanks.

     
    Old 10-22-2012, 04:24 PM   #24
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    Re: New diagnosis, age 48 no symptoms

    Mia99,
    Concerning supplements, I recently read a news report with the heading, "Prostate Cancer: Curcumin Curbs Metastases, Study Shows" and another with the heading, "Increased Flavonoid Intake Reduced Risk for Aggressive Prostate Cancer". Natural Cocoa is extremely rich in Flavonoids but Dutch processed destroys flavonoids so make sure it says Natural if you get some.
    Bob

     
    Old 10-24-2012, 06:09 AM   #25
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    Re: New diagnosis, age 48 no symptoms

    Thank you Bob, good information.

     
    Old 10-25-2012, 11:47 AM   #26
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    Re: New diagnosis, age 48 no symptoms

    We got all the way through qualifying for the Taxotere clinical trial and then got randomized NOT to get it. Awful.

    Our doctor is part of an experiment to make clinical trials more accessible. My understanding is he's able to apply to be part of any open clinical trial in the country that is in the NCI database. In fact he applied to be part of the Taxotere trial so that we wouldn't have to travel to Cleveland for it, and it only took about a week to get it opened.

    It's frustrating though, because apparently doctors are aware only of their own trials. I want to find another one. Yes I have access to clinical trial web sites but that doesn't make me qualified to find the best one.

    Please, anyone with ideas about the most promising clinical trials in the country for stage 4 prostate cancer, I would love your input. My husband was diagnosed on 9/17 and just completed his first month of Lupron. That's the only therapy right now. His PSA was 358 at diagnosis a month ago, and today it is 13, so the Lupron is working.

    Thanks.

     
    Old 10-25-2012, 03:34 PM   #27
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    Re: New diagnosis, age 48 no symptoms

    welcome to the world of questions and many answers,
    First remember that prostate ccancer is the slowest to grow and second they are coming up with new drugs all the time. I have been dealling with my husbands situation for 4 years and he has never seemed sick (thank God) the hardest part is making all the decisions never knowing if you are right, but when you are feeling the most scared and sad go online and look up brain cancer, or strokes. I find that looking at those worse off is often the best medicine. xo midge

     
    Old 10-26-2012, 04:25 AM   #28
    Mia99
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    Re: New diagnosis, age 48 no symptoms

    Thank you for the words of encouragement, Midgie, and I wish the best for you and your husband.

    Is anyone able to comment on clinical trials that might benefit our current situation? Most I've read either don't fit or I don't know enough to understand.

     
    Old 10-26-2012, 09:42 AM   #29
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    Re: New diagnosis, age 48 no symptoms

    We are going to the doctor next week and I am pretty sure they will try him on the new drug xtandi I will let everyone know when we hear. I would think that the cleveland clinic would be on top of clinical trials also a place a took look is the mayo clinic in arizona they are the leading prostate cancer hospital. Keep your chin up!! xo

     
    Old 10-26-2012, 11:52 AM   #30
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    Re: New diagnosis, age 48 no symptoms

    Most clinical trials for the really interesting new medicines are limited to men who are already castrate resistant. Many include other restrictions. Phase 3 clinical trials always include placebo or control groups who do not get the medicine, and they are often blinded, so you don't know if you've been treated. Phase 1 or 2 clinical trials do not have control groups, but they do not yet know its efficacy or best dosage.

    You may be happier getting an already approved drug off-label. This is something worth discussing with your doctor and insurance company. My friend was prescribed Zytiga although he is still hormone sensitive. Below is a list of all the drugs that have been FDA-approved for castrate-resistant prostate cancer and are available now. They are all in clinical trials for earlier use. Also, see my posting of other cancer drugs that are available now and may be a useful part of a cocktail.

    Hormonal therapies:
    • Zytiga
    • Xtandi
    Immunotherapies:
    • Provenge
    • Yervoy (approved only for melanoma so far)
    Chemotherapies:
    • Taxotere
    • Jevtana

    As I said before, Xgeva and Zometa are available as labeled now for men with bone mets.

    If the PSA doesn't drop further, there are also several other already approved hormone therapies that he can try.

    - Allen

     
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