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

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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 ass 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."

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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

tarhoosier
Posts: 182
Joined: Aug 2006

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

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

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

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

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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

mrspjd
Posts: 693
Joined: Apr 2010

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's picture
bobper8427
Posts: 14
Joined: Aug 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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
Posts: 693
Joined: Apr 2010

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's picture
bobper8427
Posts: 14
Joined: Aug 2010

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!

bobper8427's picture
bobper8427
Posts: 14
Joined: Aug 2010

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.

mrspjd
Posts: 693
Joined: Apr 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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's picture
bobper8427
Posts: 14
Joined: Aug 2010

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
Posts: 693
Joined: Apr 2010

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's picture
bobper8427
Posts: 14
Joined: Aug 2010

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's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

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

VGama

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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

lewvino

mrspjd
Posts: 693
Joined: Apr 2010

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

SeattleJ
Posts: 32
Joined: Mar 2011

I was in the same trial and had similar results. A little history:

I was 59 when diagnosed (and still am until May 23rd!)I had my annual check in July 2010. The DRE revealed a lump and my PSA was 19. The biopsy revealed Gleason grade 7 (4+3 and cancer in 7 of the 12 cores). An MRI also showed a suspicious lymph node in, as the doctor said, a strange place well away from the normal prostate drain field.

My treatment has entirely taken place at Seattle Cancer Care Alliance (Univ. of Washington Medical Center & Fred Hutchinson Cancer Research Center)under the care of Dr William Ellis (surgeon) and Dr James P. Dean (medical oncologist). I took part in a clinical trial of pre-adjuvant Abiraterone & Lupron plus Prednisone. This lasted 6 months. I then had an open radical prostatectomy on March 1, 2011. Surgery was required by the study, but it could be either robotic or open. I had open because of the suspicious lymph node. The surgeon wanted to do a very thorough surgical lymph node resection. The pathology report showed clear margins, no seminal vesicle invasion, no extracapsular invasion and no lymph node involvement. The suspicious lymph node showed that the clinical trial had an effect--there was evidence of inflammation which is present when a cancer has been destroyed. No active cancer was found. Because of the use of Abiraterone and Lupron, the pathologist cannot determine a post surgery Gleason score. The treatment effect makes that impossible. I have since had one PSA test with an undetectable result (>.03 at this lab. My next test is June 8th. I still wear a pad for security reasons but in most 24 hour periods the pad stays dry.

The side effects of both Abiraterone and Lupron are similar and were manageable for me. I had (and still have) hot flashes. Weight control was very difficult, although I only gained about 7 pounds. Libido drops to nothing as does potency. Fatigue was the primary problem, but it was manageable and I was able to work full time and continue with life as normal during the study. I had blood tests every two weeks.

Now that the treatment phase of this is over, I'm working with our daughter who is a registered dietician to make sure that I eat a very healthy diet. The weight is starting to come off and that should get easier as the testosterone continues to come back into my system. A good support system is vital. My wife is a breast cancer survivor so we knew the drill when this happened, but it is still a rough road.

I knew that I had an aggressive cancer so I wanted the most aggressive treatment. I didn't hesitate to take part in the trial as I wanted to bring every weapon possible in this fight. Hopefully it will all turn out well, but at least I know I've done all I can. I would advise everyone to get to the best treatment center they can possibly find. It does make a difference.

I can try to answer questions if anyone has them.

John

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I love to read good stories! Wish you more great results with your fight and also on the weight loss! Congrats all around!

Lewvino (larry)

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

John

Congratulations on the results from your treatment. Your and Bob participation in this trial is helping the many of us and “newbies” in confronting this disease.
I have been following trials on Abiraterone in Europe since 2007. Your trial had the intent in checking the drugs’ effectiveness on body tissue (the prostate). This is the reason why surgery made part in the process to remove the gland for examination. The benefit for the participants was therefore double. Usually, cases where metastases are present, surgery is not done because it would not assure cure. Abiraterone in this setting makes the difference and I believe that we will see a new treatment procedure where a simple “pill” will substitute the “bistoury” in the future.
More results are coming in regards to Abiraterone and breast cancer.

Wishing you a continuous success.

Thanks,
VGama

mrspjd
Posts: 693
Joined: Apr 2010

John,

Welcome to the PCa forum. Thanks for being so forthcoming and sharing the details of your PCa journey, dx stats and history as that info really adds perspective in understanding your tx and participation in the Abi clinical study. Also appreciate your offer to answer questions. Hope you decide to continue to post updates on your progress.

Your inspirational story, experience, and the info you (and Bob) provided will certainly be helpful to many others, especially those dx'd with intermediate to high risk PCa.

Wishing you continued success.

mrs pjd

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