Update rising PSA in Off phase of IAD

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  • traveler
    traveler Member Posts: 28 Member
    #22
    VascodaGama said:

    At even-par

    Traveler

     

    Congratulations. I hope the stress has dissipated with these latest results. You are at even-par. Will you aim the birdies?
    But …………… do you need more? You are a winner already.  Kiss

     

    Thanks for sharing your treatment protocol. It seems to be the typical Total Blockade (ADT3) with Xtandi replacing Casodex. Both are antiandrogens but Xtandi is more “refined”. It works at intratumoral levels. The Celebrex (COX2 inhibitor) was big news back in 2006. The famous STAMPEDE trial for the use of this tumour growth inhibitor was incomplete in my view and has shown little effects, even at daily doses of 400mg, but some patients managed to get high points in the control of advanced PCa. At the time I checked about possibilities for my case of micro mets but opted to continue with the daily aspirin 100mg. Xgeva may have been added to the protocol to help in bone “repair” after radiation (???).

    The list of supplements seems to be the best and complete. CoQ10 100MG become big news in 2005 after a Spanish trial have shown that CoQ10 managed to lower PCa cells growth without affecting cell growth in the non-malignant cell lines. Our buddy Charles (Chuck) Maack from the PCa support group at Us TOO has an interesting blog with the views of Dr. Myers and listed articles. I provide the link below to the many reading your thread and that may be interested in your treatment. The title is COQ-10 (COENZYME Q-10) – GOOD OR BAD?

    http://www.ustoowichita.org/pdf/COQ-10 GOOD OR BAD .pdf
    http://www.ustoowichita.org/

    The excellent outcome in this start of the second phase of IHT (with first line HT drugs) shows that you got “extra options” for the fight, would that become necessary. I hope you do not need it but I say this because of your concerns commented in your post above. You say;

    “…I am a realist and know that while only one spot showed up on the PET/CT scans there are likely more micro mets but I am also an optimist …”

    Any future PET/CT examination may give you peace of mind, in any case I believe that the spot RT eradicated the bandit and that now you should enjoy and engage in things you like doing best. Enjoy and celebrate.  Cool

     

    Best

     Vgama  Wink

     

    A new update on IAD with Xtandi

     

     

     

    Hi everyone, I am a regular reader but have not posted for a while.

    In my last post I had undergone SBRT for one met identified on my left ischium, this occurred at UCLA under Dr Steinberg a marvelous man and a marvelous institution.

    At the same time I restarted IAD program consisting  3 month Zoledex, 160mg of Xtandi daily (as opposed to Casodex which I used in my first “on phase”) and 5mg Proscar.

    As I mentioned in my last post my PSA dropped to <0.008 within 3 months (March 2014) and has remained there ever since.

    I am now in my “off phase” having finished the hormone treatment in Dec 14. I still take proscar and inject Luekine 14 days on 14 days off, to stimulate my immune system.

    During the last “on phase” my weight increased again, back up to 90kg and I noted muscle loss also.

    Unfortunately I have injured my back and this has caused problems in my hip flexor and ITB that makes walking painful so my exercise regime has suffered. I am having Physio 3 times a week and things are improving but it is a slow business (over 3 months so far). I have detailed this because I feel that muscle loss is cumulative and we all know that past 40 it is harder to replace muscle and much harder past 60 (I am 64) but when you go through hormone treatment I now realize you have to do much more gym work on resistance exercises if you are going to arrest the decline.By this I mean 1-2 hrs daily for 3-4 days a week of some form of resistance exercise.

     

    I had very little side effects during the on phase, at first the Xtandi made me tired but when I switched to taking it in the nighttime these side effects passed.

     

    My hope is that I can last longer on this “off phase” than the last time but I am also a realist and know that the “bandit” in the form of dormant cancer cells is still likely lurking in some dark corner. The CTC count oscillating between 0 and 1 evidences this.

     

    During the year I had the good fortune to meet Vasco and his beautiful wife in Portugal, he is as kind and considerate in person as he is in his virtual world.

    I enjoyed his company and we discussed many of our shared experiences over fine food and wonderful red wine. I can tell you he is building a beautiful home in a wonderful orchard where he has planted many exotic fruit trees from his second country (Japan)

    I hope to get the pleasure of meeting him again in the not to distant future.

    I wish everyone the very best and I will continue to post updates on journey as we fight the Bandit!!

     

    Best Wishes

     

    T

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

    A new update on IAD with Xtandi

     

     

     

    Hi everyone, I am a regular reader but have not posted for a while.

    In my last post I had undergone SBRT for one met identified on my left ischium, this occurred at UCLA under Dr Steinberg a marvelous man and a marvelous institution.

    At the same time I restarted IAD program consisting  3 month Zoledex, 160mg of Xtandi daily (as opposed to Casodex which I used in my first “on phase”) and 5mg Proscar.

    As I mentioned in my last post my PSA dropped to <0.008 within 3 months (March 2014) and has remained there ever since.

    I am now in my “off phase” having finished the hormone treatment in Dec 14. I still take proscar and inject Luekine 14 days on 14 days off, to stimulate my immune system.

    During the last “on phase” my weight increased again, back up to 90kg and I noted muscle loss also.

    Unfortunately I have injured my back and this has caused problems in my hip flexor and ITB that makes walking painful so my exercise regime has suffered. I am having Physio 3 times a week and things are improving but it is a slow business (over 3 months so far). I have detailed this because I feel that muscle loss is cumulative and we all know that past 40 it is harder to replace muscle and much harder past 60 (I am 64) but when you go through hormone treatment I now realize you have to do much more gym work on resistance exercises if you are going to arrest the decline.By this I mean 1-2 hrs daily for 3-4 days a week of some form of resistance exercise.

     

    I had very little side effects during the on phase, at first the Xtandi made me tired but when I switched to taking it in the nighttime these side effects passed.

     

    My hope is that I can last longer on this “off phase” than the last time but I am also a realist and know that the “bandit” in the form of dormant cancer cells is still likely lurking in some dark corner. The CTC count oscillating between 0 and 1 evidences this.

     

    During the year I had the good fortune to meet Vasco and his beautiful wife in Portugal, he is as kind and considerate in person as he is in his virtual world.

    I enjoyed his company and we discussed many of our shared experiences over fine food and wonderful red wine. I can tell you he is building a beautiful home in a wonderful orchard where he has planted many exotic fruit trees from his second country (Japan)

    I hope to get the pleasure of meeting him again in the not to distant future.

    I wish everyone the very best and I will continue to post updates on journey as we fight the Bandit!!

     

    Best Wishes

     

    T

    Congratulations

    Traveler

    Thanks for the gentle words. I am grateful for your visit and the time you spend with us together with your wonderful wife. I look forwards in seeing you again.
    I am very pleased in knowing about your latest results and successful outcome from the therapy. I wonder what may be your marker and threshold to restart IADT, if ever.
    Regarding your back pain, I think you better inquire with Tucker if you can stop the Leukine drug now and resume it latter. The fact is that the pain could be origin as a side effect from the drug. Please read details in this link;
    http://www.leukine.com/patient-index

    Thanks for continuously sharing your journey. This thread is outstanding and a good example to follow by the many in similar situation.

    Best wishes and quick improvement in the back pain and other issue.

    Cheers

    VGama

    Note: Your story is complete with this link:
    http://csn.cancer.org/node/220246

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