Abiraterone - on the Trial....After Surgery 0.0% Residual Cancer - Nothing, Nada

bobper8427
bobper8427 Member Posts: 14
edited March 2014 in Prostate Cancer #1
November 9, 2009 was the date of my diagnosis. February 12, 2010 I started the Abiraterone Trial. Within one month my psa was down to 0.64. By May 12, 2010 my psa was down to 0.02. My surgery was on August 5, 2010. On August 18, 2010 my doctor told me the results of the pathology report - 0.0% residual cancer.

My story:
I implemented and executed the following Battle Plan over the eight months since my diagnosis:
• I sought out and developed a trusted, confident relationship with my Medical Team – the Doctors, nurses and staff who would provide the health care
• I worked with a nutritionist – I started to “eat with awareness”
• I developed an exercise routine – I started with walking, just walking. Then I enlisted in a Boot Camp and increased my exercise regimen
• I developed and maintained a positive attitude – I came to believe I would kick **** and I embraced the concept that I had the absolute central role in my change and my dealing with all of this
• I developed a “Team”, a support group, around me – friends and family – I knew I had to focus on investing time and emotional energy in relationships that nurture
I came to realize: “We connect with meaningful places inside ourselves through relating and connecting with others, very often in places and at times we least expect. Magnificent things happen when hearts open to give and receive.”
I lost 42 pounds
My cholesterol improved dramatically
My CRP level is now normal
I had surgery August 5th to remove the tumors
On August 18th my doctor informed me that there was 0.0% (none, nada) residual cancer

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone would understand if you fell apart, that's true strength."
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Comments

  • bobper8427
    bobper8427 Member Posts: 14
    Abiraterone Trial I was on
    It was the Phase 2 Neoadjuvant Abiraterone Plus Leuporolide Acetate wtih Prednisone; Protocol 09-107
  • gkoper
    gkoper Member Posts: 173
    Abiraterone
    bobper8427.........Good to read your success story through diet/exercise & attitude---------& abiraterone. However, you say you had tumors removed. Does that mean part or all of the prostate was removed? Sorry if I'm being too nosy.
    Cheers,
    George
  • tarhoosier
    tarhoosier Member Posts: 195

    Abiraterone Trial I was on
    It was the Phase 2 Neoadjuvant Abiraterone Plus Leuporolide Acetate wtih Prednisone; Protocol 09-107

    Abi adjuvant
    Bob:
    Biopsy cores/positive/Gleason?
    Psa?
    Stage(clinical)?

    Post surgery pathology: Gleason/% involved/margins/ECE/Stage?
  • bobper8427
    bobper8427 Member Posts: 14

    Abi adjuvant
    Bob:
    Biopsy cores/positive/Gleason?
    Psa?
    Stage(clinical)?

    Post surgery pathology: Gleason/% involved/margins/ECE/Stage?

    Abi Adjuvant
    psa went from 2.4 in 2004 to 3.9 in August, 2009 - that triggered a visit to specialist. Biopsy done in November, 2009 - Gleason score of 8. MRI in December, 2009 confirmed the cancer had spread outside the prostate. Began Abiraterone trial in February, 2010. On March 12, 2010, psa down to 0.64
    From pathology report post-surgery (surgery was August 5, 2010) - left pelvic lymph node negative; right pelvic lymph node negative; prostate - no residual prostatic adenocarcinoma
  • bobper8427
    bobper8427 Member Posts: 14
    gkoper said:

    Abiraterone
    bobper8427.........Good to read your success story through diet/exercise & attitude---------& abiraterone. However, you say you had tumors removed. Does that mean part or all of the prostate was removed? Sorry if I'm being too nosy.
    Cheers,
    George

    Hi George: all of the prostate was removed. Not too nosy...sorry for delay....
  • bobper8427
    bobper8427 Member Posts: 14
    gkoper said:

    Abiraterone
    bobper8427.........Good to read your success story through diet/exercise & attitude---------& abiraterone. However, you say you had tumors removed. Does that mean part or all of the prostate was removed? Sorry if I'm being too nosy.
    Cheers,
    George

    Hi George: all of the prostate was removed. Not too nosy...sorry for delay....
  • mrspjd
    mrspjd Member Posts: 694 Member

    Hi George: all of the prostate was removed. Not too nosy...sorry for delay....

    bobper
    Glad to read of your success. I'm a little confused about your treatment and thought you might be able to help me understand. If I read your posts correctly, you started on the Abiraterone Plus Leuporolide Acetate (Lupron Depot?) with Prednisone trial in Feb 2010, then had a radical prostatectomy (RP) to remove the prostate recently in August 2010? From your info, it would seem your PCa was a stage T4...Wondering & hoping you can shed more light...Isn't it unusual or rare that a RP surgery would be performed for stage T4 PCa, where the PCa has metastasized? Just guessing--Perhaps the RP was part of the Abiraterone study that you're in? Sorry if I've misinterpreted your info (and this is in no way trying to second guess anything), but thank you for any add'l info you might be able to provide that would help to understand your PCa staging & treatment plan.
  • bobper8427
    bobper8427 Member Posts: 14
    mrspjd said:

    bobper
    Glad to read of your success. I'm a little confused about your treatment and thought you might be able to help me understand. If I read your posts correctly, you started on the Abiraterone Plus Leuporolide Acetate (Lupron Depot?) with Prednisone trial in Feb 2010, then had a radical prostatectomy (RP) to remove the prostate recently in August 2010? From your info, it would seem your PCa was a stage T4...Wondering & hoping you can shed more light...Isn't it unusual or rare that a RP surgery would be performed for stage T4 PCa, where the PCa has metastasized? Just guessing--Perhaps the RP was part of the Abiraterone study that you're in? Sorry if I've misinterpreted your info (and this is in no way trying to second guess anything), but thank you for any add'l info you might be able to provide that would help to understand your PCa staging & treatment plan.

    Sorry for the delay- the RP
    Sorry for the delay- the RP was in fact part of the protocol of the trial. If the MRI had not detected the cancer outside the prostate, I would have had surgery in January, 2010. Once it was out, the RP schedule date of August 5th was fixed as soon as I started the abiraterone in February. In addition, as part of the protocol I had a second biopsy in May, 2010. The results were never disclosed to me, it was merely for the purposes of the investigator clinical data.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Sorry for the delay- the RP
    Sorry for the delay- the RP was in fact part of the protocol of the trial. If the MRI had not detected the cancer outside the prostate, I would have had surgery in January, 2010. Once it was out, the RP schedule date of August 5th was fixed as soon as I started the abiraterone in February. In addition, as part of the protocol I had a second biopsy in May, 2010. The results were never disclosed to me, it was merely for the purposes of the investigator clinical data.

    Question
    Bob,

    Thanks for sharing your information. I am sure this past year has been a challenging time for you. When you indicated that they found evidence that the cancer had already moved outside the prostate, where was it located: seminal vesicules, lymph nodes, bones??

    Also, if they knew that PCa was outside the prostate, I am curious about the rationale your doctors gave you for going ahead with the RP instead of some other form of treatment like radiation.

    And finally, what (if any) side effects did you experience with the Abiraterone?

    I applaud your decision to make some significant lifestyle changes that obviously helped your overall prognosis.

    Good luck on your continued recovery.
  • mrspjd
    mrspjd Member Posts: 694 Member
    Kongo said:

    Question
    Bob,

    Thanks for sharing your information. I am sure this past year has been a challenging time for you. When you indicated that they found evidence that the cancer had already moved outside the prostate, where was it located: seminal vesicules, lymph nodes, bones??

    Also, if they knew that PCa was outside the prostate, I am curious about the rationale your doctors gave you for going ahead with the RP instead of some other form of treatment like radiation.

    And finally, what (if any) side effects did you experience with the Abiraterone?

    I applaud your decision to make some significant lifestyle changes that obviously helped your overall prognosis.

    Good luck on your continued recovery.

    info & questions
    Kongo poses some great questions. So did tarhoosier at the top of the thread. Sure enough, there is an Abiraterone study that involves RP (who knew until bobper posted his story?) http://www.dana-farber.org/Apps/clinical_trials/trial.aspx?153
    Here's a few more questions to consider: In the Abiraterone clinial trial, what were your stats prior to entering the study, i.e., what was your PSA; Gleason score pre and post RP; # of pre-tx biopsy cores positive and what % of cores with PCa; age at diagnosis? Had you previouly been treated with hormones/ADT or chemo prior to the study? This info would be helpful & beneficial for those dealing with T4 aggressive PCa. Thanks in advance for your important and informational post. Wishing you continued success.
  • bobper8427
    bobper8427 Member Posts: 14
    Kongo said:

    Question
    Bob,

    Thanks for sharing your information. I am sure this past year has been a challenging time for you. When you indicated that they found evidence that the cancer had already moved outside the prostate, where was it located: seminal vesicules, lymph nodes, bones??

    Also, if they knew that PCa was outside the prostate, I am curious about the rationale your doctors gave you for going ahead with the RP instead of some other form of treatment like radiation.

    And finally, what (if any) side effects did you experience with the Abiraterone?

    I applaud your decision to make some significant lifestyle changes that obviously helped your overall prognosis.

    Good luck on your continued recovery.

    Yes, it was a
    Yes, it was a challenge...but...here goes with answers - the spread initially was confined to the seminal vesicles. For me in my situation both the Oncology Team and the Urology Team recommended the primary treatment plan being the Abby trial - and as part of the trial I signed up for the RP...also a second biopsy which was done after abour 12 weeks into treatment. Never got those results, it was strictly for clinical data purposes. Side effects were the to-be expected ones from hormone therapy - sweats, flashes, no semen. But I could still have an erection and orgasm. Just nothing coming out....no other problems - during the treatment I stopped alchohol due to potential impact on liver, but that was my choice, the doctors did not force this....just made sense to me. The doctors applauded my decision. Thanks for applauding my lifestyle changes - I agree, made a big difference....Good luck....looking back at everything, it was actually a good thing for me, strange as it seems.
  • bobper8427
    bobper8427 Member Posts: 14
    mrspjd said:

    info & questions
    Kongo poses some great questions. So did tarhoosier at the top of the thread. Sure enough, there is an Abiraterone study that involves RP (who knew until bobper posted his story?) http://www.dana-farber.org/Apps/clinical_trials/trial.aspx?153
    Here's a few more questions to consider: In the Abiraterone clinial trial, what were your stats prior to entering the study, i.e., what was your PSA; Gleason score pre and post RP; # of pre-tx biopsy cores positive and what % of cores with PCa; age at diagnosis? Had you previouly been treated with hormones/ADT or chemo prior to the study? This info would be helpful & beneficial for those dealing with T4 aggressive PCa. Thanks in advance for your important and informational post. Wishing you continued success.

    Prior to going on the study
    Prior to going on the study my PSA was 3.9. Gleason socre was 8. Post RP PSA was 0; not Gleason score was reported to me, but nothing noticed in lymphs. age at diagnosis was 55. No previous hormone treatment or any other treatment, no chemo, etc. Hope this helps!
  • mrspjd
    mrspjd Member Posts: 694 Member

    Yes, it was a
    Yes, it was a challenge...but...here goes with answers - the spread initially was confined to the seminal vesicles. For me in my situation both the Oncology Team and the Urology Team recommended the primary treatment plan being the Abby trial - and as part of the trial I signed up for the RP...also a second biopsy which was done after abour 12 weeks into treatment. Never got those results, it was strictly for clinical data purposes. Side effects were the to-be expected ones from hormone therapy - sweats, flashes, no semen. But I could still have an erection and orgasm. Just nothing coming out....no other problems - during the treatment I stopped alchohol due to potential impact on liver, but that was my choice, the doctors did not force this....just made sense to me. The doctors applauded my decision. Thanks for applauding my lifestyle changes - I agree, made a big difference....Good luck....looking back at everything, it was actually a good thing for me, strange as it seems.

    bobper
    It sounds like you have had amazing results, both with your tx and your lifestyle changes. Thanks for sharing your story & positive attitude as well as taking the time to answer so many questions (both here & on the other Abi thread). Looking forward to updates on your continued success! Wishing you all the best.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Yes, it was a
    Yes, it was a challenge...but...here goes with answers - the spread initially was confined to the seminal vesicles. For me in my situation both the Oncology Team and the Urology Team recommended the primary treatment plan being the Abby trial - and as part of the trial I signed up for the RP...also a second biopsy which was done after abour 12 weeks into treatment. Never got those results, it was strictly for clinical data purposes. Side effects were the to-be expected ones from hormone therapy - sweats, flashes, no semen. But I could still have an erection and orgasm. Just nothing coming out....no other problems - during the treatment I stopped alchohol due to potential impact on liver, but that was my choice, the doctors did not force this....just made sense to me. The doctors applauded my decision. Thanks for applauding my lifestyle changes - I agree, made a big difference....Good luck....looking back at everything, it was actually a good thing for me, strange as it seems.

    Good Luck Bob
    Bob, thanks for sharing. I hope you continue to make great progress. I know what you mean about looking back and seeing the good about what comes out of a prostate cancer diagnosis.
  • bobper8427
    bobper8427 Member Posts: 14
    Kongo said:

    Good Luck Bob
    Bob, thanks for sharing. I hope you continue to make great progress. I know what you mean about looking back and seeing the good about what comes out of a prostate cancer diagnosis.

    Brief Update
    So in a brief update, it is the incontinence that I am still dealing with. The good news is that it is getting better, maybe not noticeable every day as improvement, but overall it is getting better. I have a feeling that as that improves, the other things that go on down there will improve too.

    It is tough if I am out walking for an extended period of time, especially in the afternoon. In the morning time, my muscles are stronger, but in the afternoon it is difficult. So I find myself looking for restrooms or places to go to the bathroom, and of course basically always wearing some form of pad or diaper...oh well!

    That is it for now.
  • mrspjd
    mrspjd Member Posts: 694 Member

    Brief Update
    So in a brief update, it is the incontinence that I am still dealing with. The good news is that it is getting better, maybe not noticeable every day as improvement, but overall it is getting better. I have a feeling that as that improves, the other things that go on down there will improve too.

    It is tough if I am out walking for an extended period of time, especially in the afternoon. In the morning time, my muscles are stronger, but in the afternoon it is difficult. So I find myself looking for restrooms or places to go to the bathroom, and of course basically always wearing some form of pad or diaper...oh well!

    That is it for now.

    welcome back bob
    Bob,
    Welcome back and thx for the update. Sorry to read of the incontinence issue as a result of the RP, but glad it is improving. Hope you are doing well with the ADT (Androgen Deprivaton Therapy) of Abi, Lupron, etc. How long will you remain on the drugs for the study and how have your PSA readings been going? Wishing all the best now and in the future.
  • bobper8427
    bobper8427 Member Posts: 14
    mrspjd said:

    welcome back bob
    Bob,
    Welcome back and thx for the update. Sorry to read of the incontinence issue as a result of the RP, but glad it is improving. Hope you are doing well with the ADT (Androgen Deprivaton Therapy) of Abi, Lupron, etc. How long will you remain on the drugs for the study and how have your PSA readings been going? Wishing all the best now and in the future.

    So the good news is that
    So the good news is that abiraterone was approved by the FDA on April 28th.....the brand name of the drug is Zytiga. It worked for me!

    My update: incontinence is getting better, all checkups since surgery have been positive.....Life goes on. I walk my daughter down the aisle on June 17! Thank you!
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member

    So the good news is that
    So the good news is that abiraterone was approved by the FDA on April 28th.....the brand name of the drug is Zytiga. It worked for me!

    My update: incontinence is getting better, all checkups since surgery have been positive.....Life goes on. I walk my daughter down the aisle on June 17! Thank you!

    Congratulations Bob
    Congratulations Bob, on both, your continued improvement and the marriage of your daughter.

    VGama
  • lewvino
    lewvino Member Posts: 1,010

    So the good news is that
    So the good news is that abiraterone was approved by the FDA on April 28th.....the brand name of the drug is Zytiga. It worked for me!

    My update: incontinence is getting better, all checkups since surgery have been positive.....Life goes on. I walk my daughter down the aisle on June 17! Thank you!

    Glad to hear it was
    Glad to hear it was approved. Also congrats on your daughters marriage!

    lewvino
  • mrspjd
    mrspjd Member Posts: 694 Member

    So the good news is that
    So the good news is that abiraterone was approved by the FDA on April 28th.....the brand name of the drug is Zytiga. It worked for me!

    My update: incontinence is getting better, all checkups since surgery have been positive.....Life goes on. I walk my daughter down the aisle on June 17! Thank you!

    Congrats X 2!
    Bob,

    Welcome back again and thanks for the updates. Appreciate you sharing your wonderful father-of-the-bride news and your spectacular treatment results. Your story gives many, men and women alike, hope for the future.

    May all your troubles be little ones...grandkids, that is.

    All the very best,

    mrs pjd