10 Years now - T3b - and clean bone and ct scans but rising PSA now 40

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Comments

  • klinefinancial
    klinefinancial Member Posts: 19
    #22
    OK Now 12 years

    Well here we are a year and half later....psa 128....and now stage 4 spread to the bones......just finished provenge in February (3 months now and should start having some affect) and aberaterone is failing as psa has risen from 111 to 128 after the first two months on it.   I did get a pretty good run on ketoconozale so i guess there's just not enough difference in the aberaterone.

     

    Would appreciate any recommendations on what to do next.....since Lupron and Aberaterone no longer control the psa....

     

    I'm sensitive to all the side affects of these drugs and am pretty fearful of Chemo drugs like taxotere....

     

    Maybe  a miracle?

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #23
    klinefinancial said:

    OK Now 12 years

    Well here we are a year and half later....psa 128....and now stage 4 spread to the bones......just finished provenge in February (3 months now and should start having some affect) and aberaterone is failing as psa has risen from 111 to 128 after the first two months on it.   I did get a pretty good run on ketoconozale so i guess there's just not enough difference in the aberaterone.

     

    Would appreciate any recommendations on what to do next.....since Lupron and Aberaterone no longer control the psa....

     

    I'm sensitive to all the side affects of these drugs and am pretty fearful of Chemo drugs like taxotere....

     

    Maybe  a miracle?

     

    Try Alpharadin and let the miracle to came later

    Kline

    I am sorry to hear about the failure of the hormonal treatment. I hope Provenge is of help but the results are not so promising.
    With metastases in bone the drug showing success is Alpharadin which just got FDA approval and is on sale under the name Xofigo. This is not chemo and it may be helpful in a case like yours.

    The results from trials III are super. http://www.medicalnewstoday.com/articles/260692.php

    In fact they stopped the trial in the middle for ethical values. The guys taking the drug shown fast good results so that the researchers decided to administer the drug to the placebo group too, therefore were ending the trial.
    http://www.youtube.com/watch?v=mpx_I89_PFI

    This is radium 223 which is administered to attack cancer directly in bone. This radium is delivered to the bone structure “gluing” it to compounds that care for osteoblast (repairing bone deterioration).

    The drug was successful in trials combining it with other treatments (hormonal and chemo).

    Please type the name in a net search engine Alpharadin and read everything you find. Discuss the matter with your doctor.

    I am sincerely at lost about your news. I hope you manage to get a grip in the progress of the disease.

    Best wishes.

    VGama

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #24
    klinefinancial said:

    OK Now 12 years

    Well here we are a year and half later....psa 128....and now stage 4 spread to the bones......just finished provenge in February (3 months now and should start having some affect) and aberaterone is failing as psa has risen from 111 to 128 after the first two months on it.   I did get a pretty good run on ketoconozale so i guess there's just not enough difference in the aberaterone.

     

    Would appreciate any recommendations on what to do next.....since Lupron and Aberaterone no longer control the psa....

     

    I'm sensitive to all the side affects of these drugs and am pretty fearful of Chemo drugs like taxotere....

     

    Maybe  a miracle?

     

    Hang in there

    Kline,

    Dig your bike -- appears to be a Sporty with some ape hangers. I am not a regular here, having been a lymphoma patient instead, but two close friends beat Stage 4 prostate cancer for over a decade.  I hope you do better than either of them !  You can read a little about them under the topic "What Does PSA of 600 Mean?" at this board.

    Bless you, man.

    max

  • mrspjd
    mrspjd Member Posts: 694 Member
    #25
    klinefinancial said:

    OK Now 12 years

    Well here we are a year and half later....psa 128....and now stage 4 spread to the bones......just finished provenge in February (3 months now and should start having some affect) and aberaterone is failing as psa has risen from 111 to 128 after the first two months on it.   I did get a pretty good run on ketoconozale so i guess there's just not enough difference in the aberaterone.

     

    Would appreciate any recommendations on what to do next.....since Lupron and Aberaterone no longer control the psa....

     

    I'm sensitive to all the side affects of these drugs and am pretty fearful of Chemo drugs like taxotere....

     

    Maybe  a miracle?

     

    Xofigo (aka Alpharadin, Radium 223)

    Hi KF,

     


    I was glad to see your latest post even though the news is bittersweet.  

     

    It would be helpful if you could share which recent imaging test(s) you had that may have identified mets in bone and/or soft tissue.  According to the literature for Xofigo, "it's specific indication is for men with symptomatic, late-stage, castration-resistant prostate cancer with metastases in bone but not other organs, following conventional medical and/or surgical therapy to reduce testosterone levels."  If you're still under the care of Dr. Small, has he suggested this new drug for you? Here's a link to the Medpage article re the recent FDA approval of Xofigo:

     


     

    You might also look into Xtandi. A close friend of ours had some success with it and he did NOT need to have chemo prior to using Xtandi. 


     

    Here's a thread on Docetaxel (Taxotere) that could be helpful:


     

    In case you're interested, the face to face PCa support group in Marin has a very knowledgeable, experienced & compassionate facilitator (himself, a PCa survivor).  If you'd like this info, just email me through CSN. 


     

    Thinking of you and hoping for the best. 

     

    mr & mrs pjd
  • tetech
    tetech Member Posts: 8
    #26
    klinefinancial said:

    OK Now 12 years

    Well here we are a year and half later....psa 128....and now stage 4 spread to the bones......just finished provenge in February (3 months now and should start having some affect) and aberaterone is failing as psa has risen from 111 to 128 after the first two months on it.   I did get a pretty good run on ketoconozale so i guess there's just not enough difference in the aberaterone.

     

    Would appreciate any recommendations on what to do next.....since Lupron and Aberaterone no longer control the psa....

     

    I'm sensitive to all the side affects of these drugs and am pretty fearful of Chemo drugs like taxotere....

     

    Maybe  a miracle?

     

    Degarelix (if injected correctly)

    Monthly Degarelix (if injected correctly) has often reduced PSA after Lupron stops working.  B-DIM (a specific broccoli component made by BioResponse) or broccoli extract (nasty gas)  have worked for me to reduce PSA 10% or so (at 2 pills per day).  Dr. Strum has seen stable PSA in patients taking about 6 pills of B-DIM per day.  I take Melatonin in increasing doses, I am up to 15mg.  The genistine & isoflavones  in Soy protien powder can prevent the further spread of cancer.  The bisphosphanates like Fosamax (I take 70mg weekly, considering 3x weekly) orZometa (injection) may help.    I want to try catching a virus called RSV from a kid; it works well in mice against PCA (Oncolytic Virus).  Lately I started Resveratrol.  Dr Meyers also likes Quercetin.

  • klinefinancial
    klinefinancial Member Posts: 19
    #27
    update Nov 2013`

    psa 537

    testosterone 31

    last lupron shot April.....last aberaterone (psa was 199) 4 months ago....

    was looking into simpson oil treatment but way too strong for me.....side effects too much for me to handle....so just gonna rest for the remainder of 2013

    will restage in Jan and see what options there are....

     

  • Bill91101
    Bill91101 Member Posts: 81 Member
    #28
    klinefinancial said:

    update Nov 2013`

    psa 537

    testosterone 31

    last lupron shot April.....last aberaterone (psa was 199) 4 months ago....

    was looking into simpson oil treatment but way too strong for me.....side effects too much for me to handle....so just gonna rest for the remainder of 2013

    will restage in Jan and see what options there are....

     

    KF:
    Best of luck to you!
    I've

    KF:

    Best of luck to you!

    I've been off the site for a while.  I'm still alive and plan to stay that way for as long as possible.  (looked really bad for a while in May 09-) Vantas and Lupron and a lot of IMRT and support has given me some time.

    My beautiful wife told me to get back on board and share the positive vibes.

    You had me LOL'ing with 'hard being the luckiest man alive'.

    Thanks!

     

     

  • klinefinancial
    klinefinancial Member Posts: 19
    #29
    update

    12/16/13

    Now psa 837 and metastases all in the bones.   Doing xofigo

    which helps bone pain ......fatigue pretty strong and wins most of the day

    Did provenge, aberaterone then became hormone resistant

    guess we're writing the final chapter now....with humor and grit....

    good luck to all of you.....

  • moonlitnight
    moonlitnight Member Posts: 58
    #30
    klinefinancial said:

    update

    12/16/13

    Now psa 837 and metastases all in the bones.   Doing xofigo

    which helps bone pain ......fatigue pretty strong and wins most of the day

    Did provenge, aberaterone then became hormone resistant

    guess we're writing the final chapter now....with humor and grit....

    good luck to all of you.....

    Hang in there

    Many people have made remarkable recoveries even after "everything failed." Always keep the candle of hope burning, however bleak it seems. Sending much love and caring your way. MLN

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #31
    When all else fails hug the dog

     

    Kline

    What can I say? I am very sorry for the news. I wish I knew more about our problem so that I could be of help.  Frown
    I hope your guessing is wrong and that you are not “    writing the final chapter” as you say. Not as yet.
    There are a series of alternative medicines and supplements which many report on being good in holding the symptoms, if not in holding the bandit. I do not know much about them or have any experience in taking something apart from the daily aspirin (100 mg) and on/off periods with Sinvastatine (20mg). However, I have read info and studies on several side medications and the chemical effects from supplements in PCa cells.

    In some advanced PCa cases, patients saw their PSA velocity dropped as much as 40% just by taking gamma-tocotrienols. There are alpha-tocotrienols too if one does not do well with the gamma ones. One should take these with care because they may increase the chances for bleeding if taken with other supplements such as vitamin E (alpha-tocopherol). In any case, we can mix the tocotrienols (gamma and alphas) as long as these are low on alpha-tocopherol to lower the total mg circulating in the body.

    PubMed published a study about anticoagulants (Lovenox, Aspirin and others) which effects had markedly reduced risk of death from high-risk PCa. Here is the link;
    http://www.ncbi.nlm.nih.gov/pubmed/22927523

    Some patients have also reported on “cocktails” of herbs and vitamins. I remember of the importance given to the Herbalists in Japan while I was living there. The old populace frequently mentioned on the benefits of certain mixtures. According to a study Ginseng (a Korean type of carrot) appears to help relieve the fatigue experienced by 90% of people with cancer.
    May I suggest you to consider doing some researches about     alternative medications before given up?

    Here is a link to a list of supplements with reviews on the opinions from patients taking them;
    http://www.webmd.com/vitamins-supplements/condition-1518-Prostate+cancer.aspx?diseaseid=1518&diseasename=Prostate+cancer&source=0

    CSN forum also got a good link to the descriptions of Herbs, Vitamins, and Minerals;
    http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/herbsvitaminsandminerals/

    For “cocktail” of herbs and vitamins, you should be looking for famous brands like: Unique E, Nutricology, Allergy Research Group, etc., but you must be 100% confident about what you are getting. You can find everything at health food stores or online. Here is a link discussing Prostate Health Cocktails;
    http://www.onclive.com/publications/urologists-in-cancer-care/2013/september-2013/Herbal-Supplement-Could-Outperform-Observation-in-Some-Patients-With-Recurrent-Prostate-Cancer

    In this link they report on the benefits of vitamin C plus vitamin B3 Niacin in cancer survival;
    http://www.alternative-cancer-care.com/niacin-vitamin-b3-and-cancer.html

    In the same site they got an interesting way to phase the cancer (6 phases). This relates to Psycho-Oncology (the problems of stress in cancer). Just for entertaining you;
    http://www.alternative-cancer-care.com/the-6-phases-of-cancer.html

     

     

    I hope I have “feed” you with ideas that may introduce you to a newer sequential.  Kiss

    My father used to say: “When all else fails hug the dog”. Celebrate your success and find the humor in your failures. This may be the right moment before a miracle happens. Don’t give up.

    My very best wishes.

    VGama  Wink

     

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