Advice re optimal timing of Xtandi?

After initial diagnosis (metastatic PC) in Dec '14 I was treated with an ADT (Firmagon & Bicalutamide) plus six rounds of Docetaxel. This reduced my tumor burden significantly and PSA fell from initial 88.5ng/l to < 0.02.

In Nov '15 a f18 choline pet scan showed activity in just one lymph node, which I had removed in an open surgery last December. After that PSA fell to <0.01.

In Feb '16 another scan showed a new, small active spot (8mm) in another lymph node. As this was the second time I was experiencing such a progression I decided to do a more aggressive, extended lymphadenectomy (removal of all lymph nodes in the pelvic area up to the aorta) plus a prostatectomy (I still had the prostate at that time, it had not shown any signs of activity in scans and biopsies found no more cancer tissue).

The operation was done in early March and went well. 9 out of the 10 removed lymph nodes were clean, the prostate showed some cancer tissue - but it was was confined to the center of the gland, i.e. no danger of positive margins. I am currently still recovering, working on my pelvic floor muscles to regain continence. It's too early to say (next scan is in a few months) - but my hope is that we caught most (all?) of the active cancer spots.

My oncologist now recommends to add Enzalutamide / Xtandi to my treatment. His argument is that I had two progressions under the current ADT and even if my PSA continues to be low and scans might not show any new spots there still might be microscopic mets that are resistant to my current ADT cocktail. And those could be attacked with Enzalutamide.

Now here's my question: Do you guys have any advice / experience regarding the optimal timing of Enzalutamide? Is there any concern that if it is used early resistance might develop sooner too? Or is the drug more efficient if used in an early stage of castration resistance (that's what my doc says)?

Your experiences and advice are greatly appreciated!

HI

I am currently at a very advanced stage in PC .
I have been in this battle now, for more than 9 years.
I went thru the lupron stage - using IAD (intermittant androgen deprovation method/approach).
When during that stage - I tried using additional herbs to support the lupron.
I employed maitake mushroom from Puritans reorder number 445 - and found that at 3 caps per day that had a significant effect in lowering the PSA when used with the lupron. (initially I had gottten that recommendation from a chat on Cancer Support Community.)
I also employed resveratrom 100 mg per day, and felt it helped .
To support my digestive systems immunine capability I also used a product containing Curcumin and Bromelain. That product is Natural Factors, Tumeric & Bromelain 450 mg. I use it because my digestive system seemed to be all messed up - it brought it back to a normal.
Those herbs and a couple others seem to have added at least one , perhaps two, cycles of the on/off action of IAD.

I hope that this information may help you in your effort to fight the cancer.

I have no personal financial attachments to any of the above products. My only interest in posting them here is tohelp , by describing my experience.

sad

I would start the Enzalutamide (Xtandi) as soon as you can get your insurance company to pay for it....If that is not an issue, then go with it now....Virtually all drugs and treatments work better, last longer, when started early...Also, it's starting to become apparent that multiple, overlapping treatments work best at keeping cancer in check...Best of luck to you.....

Dear Madagascar63,

Just a note to say "HELLO" --- as you have always been a loyal brother of mine here on this website. Have been hoping to see a post from you and have been wondering how you are faring ...

We've had some common ground, in terms of treatments in the past ... chemotherapy, Firmagon shots, Zoladex shots ... it will soon be two years ago that I underwent the chemotherapy treatments and I'm still working full-time. I'm currently on monthly ZOLADEX shots ... I seem to get better PSA control by staying on monthly ADT shots ... my oncologist and I were noticing "flares and spikes" in testosterone when I tried multi-month ADT shots, which created spikes in my PSA levels ... so, I'm sticking with the monthly ZOLADEX shots at this time.

Some months ago, we added ZYTIGA to my treatments ... a "cousin", so to speak of the XTANDI that you are now considering ... both ZYTIGA and XTANDI making their appearance as "breakthrough drugs" about the same time, in very recent years.

Wanted to wish you well as you continue with your treatments, Madagascar63 --- your plan sounds plotted, planned, and proactive !

Let us know how you are faring with your new treatments !

Best regards to you, from your fellow "Battle Brother" ~
"Cyclone Fan" ~ From Iowa State University

Hello Madagascar63,

Great having you back ... just like seeing a long-lost cousin at the family reunion !

Thankful to see your treatment plan in place ... have wondered how you were faring ... I think XTANDI has the tremendous potential to help you !

Yes ~ in answer to your question ~ I ended up with a "one in a million chance" connection to Dr. Eugene KWON up at Mayo Clinic in Rochester, Minnesota, through one of my very best friends. Went up for advanced diagnostic and imaging scans that they offer there --- tremendous medical facility, with patients from all over the globe.

Yes, Dr. Kwon is certainly a recognized leader in the field of advanced prostate cancer --- he spent a great deal of time with me at this initial consultation and definitely thinks "outside the box" when additional treatment strategies that might be needed, such as individually mixed chemo formulations and so forth. It was a tremendous meeting.

What impressed me most is that Dr. Kwon has agreed to oversee my case, in direct consultation with my primary oncologist and urologist. He set up a conference call while I was in the consultation room and formed a bond with my local doctors --- creating a "super team" comprised of my local doctors combined with the additional medical expertise and advanced imaging and scanning machines available at Mayo Clinic.

Ironically, I have about five friends who are all about my same age who now face the same health concern that I do --- they come from different chapters in my life --- friends from the hometown where I grew up, an old college roommate of mine, a work colleague, and a church minister friend of mine. Several of them have ALSO gone to Mayo Clinic to pursue advanced diagnostic testing and to consult with Dr. Kwon and some of his fellow colleagues at Mayo Clinic.

It's important to note that these doctors are certified UROLOGY ONCOLOGISTS --- while there are many trained urologists and many medical oncologists, a UROLOGY ONCOLOGIST specializes in the treatment of advanced prostate cancer. I was diagnosed while I was in my 40s, and my case has had some complexities along the way --- so adding this additional level of expertise to my medical team seemed like a wise decision.

If anyone is diagnosed with advanced prostate cancer, it's always wise to consider a second opinion --- and if you can, seek out the expertise of a UROLOGY ONCOLOGIST who specializes in advanced prostate cancer --- that level of certification is an important distinction --- they are somewhat of a rare breed, but can usually be found at larger medical facilities.

I felt fortunate --- simply seeking a second opinion at Mayo Clinic with Dr. Kwon ended up resulting in the best medical team I could ask for --- his years of research, expertise, and maverick approach to treatment protocols, couple with the ongoing care, concern, and compassion of my local doctors --- it's the best combination of doctors I could have ever asked for in this lifetime ~ from my locality here in the Midwestern United States.

I will also say that all my test results, lab results, scans, and diagnostic test results are shared now between Mayo Clinic and my local hospital here --- again, thankful for the partnership that has instantly emerged between all of the doctors overlooking my case.

Recently, Dr. Kwon wanted me to return for some follow-up testing a few weeks ago. I've had the CHOLINE-PET scan, the detailed M.R.I. of the prostate, bone scans, lymph node scans, bone density scans, a detailed abdomen M.R.I. scan, and a detailed pelvic M.R.I. scan, given over time --- to trace and track any minute trace of cancer, wherever we may find it lurking. My latest visit just a few weeks ago in March showed improvement compared to the scans that were taken last fall --- comparative studies were done between the two sets of images. Dr. Kwon wants to keep a close eye on my case, and so I will return to Mayo Clinic this summer for a few more comparative tests and an additional consultation.

The improvement that was noticed a few weeks ago must certainly be the result of the combination of the ADT hormone shots, followed by the Taxotere chemotherapy infusions, followed by ZYTIGA. I am also given shots of PROLIA twice a year to bolster bone strength and also take a regimen of calcium pills, Vitamin D, and Vitamin B-12, as advised by my local doctors.

In the last few months, my PSA has stayed below 0.10, which seems like a small miracle compared to where I started when I was diagnosed --- with full-blown prostate cancer in every single core of the biopsy and two lungs full of metastases. With treatments ongoing every since that day, I've continued my full-time teaching career and have kept up with all of my usual hobbies, interests, volunteer projects, and social events. I'm thankful for that each day.

I've formed a tight bond with all my friends who now share in my same health diagnosis --- we're all about the same age --- it's ironic to have several friends who find themselves in the "same boat" right alongside me. I've got a tight bond of friendship and a bond of brotherhood with each one of them --- loyalty beyond all words to describe. I also feel a tremendous connection of brotherhood here on this website, with "Battle Brothers" keeping in touch from all parts of the United States, and from fellow comrades from across the globe, just like you, Madagascar63 !

I'm a school teacher, and I also keep in touch with the youngsters in my school who also face a cancer diagnosis --- it has formed a supportive bond between us --- and I keep in touch with each one of them by with cards, notes, messages, and gifts from time-to-time. With my homeroom students, we have worked together on charity projects to benefit Blank Children's Hospital, where many children with cancer in the Midwest region are treated. I think having this diagnosis makes each one of us more mindful of others --- and I believe that we all should do what we can to "reach out" to others who are also facing a cancer diagnosis.

I represent the third generation of men who have faced a prostate cancer diagnosis --- my grandfather, my father, and now me --- my grandfather died of advanced prostate cancer in the 1970s during my boyhood years and I visited him every day until the end of his life --- no treatments were available for him in those years, and I am still mindful of my grandfather's determination to fight against an enemy, even when no "weapons" were available to him in the battle. I have not forgotten his determination, and feel fortunate today to have benefited from cutting-edge treatments and breakthrough medications which were not available years ago for my grandfather. Fortunately, the quest for more treatments for future generations goes on ...

Ironically, my father and I share the SAME doctors currently. My father and I have both shared our health story with countless friends, neighbors, work colleagues, old classmates, and community members --- all in the interest of promoting prostate cancer awareness. Several of our family friends have since been diagnosed, after going in for a check-up, and are now pursuing treatments of their own. Fellows need to "step up to the plate on the baseball diamond" and KEEP having that health conversation with each other ...

Having three generations of my family impacted by prostate cancer gives me a unique viewpoint and vantage point that makes me determined to shine a light on this disease --- and to encourage fellows like us to reach out to other "Battle Brothers" by sharing their story. To me, that's the true power and magnitude of this website that readers here witness on a daily basis --- constant education, support, compassion, and advocacy for fellow prostate cancer patients --- 'round the clock, 365 days a year, with caring readers from all over the GLOBE.

I'm always pleased to hear from you, Madagascar63 ~ I always watch for your posts and you've always been a loyal brother here on this forum ~ I want to wish you tremendous success with your new treatment path ~ and I'll look forward to more posts from you, as we both continue to walk together down TREATMENT TRAIL !

Sent with my very best to you, from across the miles to your home in Europe ~
"Cyclone Team Fan" ~ Hailing From Iowa State University

Dear Madagascar63,

I admire your fighting spirit --- you have been thoughtful and thorough in your medical planning --- and you have pursued top-notch consultations, combined with state-of-the-art diagnostic assessments --- you have left no stone unturned in pursuing your health goals --- and I applaud you for that.

Over time, we have had many common themes in our stories. It was an affirmation to hear Dr. Kwon state that everything that I had pursued to date with my local oncologist was up-to-par and met with his approval, after he and his team went through my sequence of treatments with a fine-toothed comb.

I did find out that Dr. Kwon had been an EARLY proponent of the "early chemo plan" for those of us diagnosed with advanced prostate cancer --- which has been validated with the clinical studies such as the STAMPEDE study and the CHAARTED study. I jumped on the "early chemo plan" the minute it was presented to me as an option --- and here I am nearly two years later.

Dr. Kwon believes in using advanced diagnostic IMAGING for future treatment decisions, rather than simply looking at a PSA score in isolation to make such decisions. He also believes in comparative studies over time --- to assess regression or progression of metastatic cancer. I thought of him as a "maverick" in his thinking --- willing to go beyond what he calls "textbook" methods, for advanced cases --- and also creating specially formulated chemotherapy "cocktails" based on the individual needs of the patient.

In my case, I need the ongoing care and compassion of my local oncologist --- he is the most caring, compassionate, and humble doctor I have ever met --- he has moved heaven and earth, time and time again, to work what I describe as small miracles in my case --- he has worked with my medications and tried different types of ADT shots, vowing that he would find a way to work my testosterone levels down --- my testosterone was showing "spikes and flares" over time --- so, my oncologist vowed we would work to get it down to a consistent lower level --- so, over time, I have been on LUPRON, FIRMAGON, and have now settled on ZOLADEX injections.

My oncologist watches over my case very diligently --- I go in for lab work and a consultation with him every four weeks, year 'round, just like clockwork. He takes a special interest in my case, and he is also my father's prostate cancer doctor --- so we have forged an incredible bond with him, as father and son. In addition to regular lab levels, my oncologist also watches my PSA and testosterone levels each month. Many doctors fail to monitor testosterone levels, and simply watch the PSA. It's easy to ask for an occasional testosterone test from your doctor, along with one's usual lab work.

In my case, my PSA levels would fluctuate any time there was a "spike or flare" in my testosterone levels. Eventually, we have worked my testosterone level to down below ten, which has helped keep my PSA suppressed to the greatest extent possible at this time. Adding ZYTIGA to my treatments has brought my PSA down below 0.10, and even brought it down lower than the powerful chemotherapy treatments !

You brought up an important question ... my oncologist and I talked quite often about ZYTIGA vs. XTANDI --- I consider both of these breakthrough medications as "cousins" to each other --- at this time, I don't think we have any definitive studies which show an advantage of one of these over another --- in my case, my oncologist simply had more EXPERIENCE with ZYTIGA, so he felt that was his best recommendation for my case.

I know that there are thoughts that eventually someday, the chemical power of ZYTIGA and XTANDI might be able to be combined for patients ... I wish that knowledge was available for us today, for patients who are in need --- consider the synergistic power of both medications COMBINED, if that ever becomes a possibility ! I also hope that someday soon, another new breakthrough medication will emerge, that will provide hope for patients BEYOND the power of XTANDI and ZYTIGA ... but, I'm thankful for every treatment that is available to us today and mindful that many of these options did not exist a decade ago at all.

However, my local oncologist has stated that if we see ZYTIGA's power eroding in my case, then we would shift over to XTANDI as a "next step" --- and another series of chemo treatments as a back-up plan, whenever that might be needed. Meanwhile, I have the expertise and futuristic vision of Dr. Kwon overseeing my case --- I saw him in March and he asked me to return again this summer, just so he can keep careful watch over my situation. He is nationally known for innovative and aggressive treatments, when the situation warrants.

A testimony to Mayo Clinic and Dr. Kwon --- but even MORE importantly, a testimony to the power of seeking the expertise of a UROLOGY ONCOLOGIST and a second opinion, wherever you might live --- just a few weeks ago, one of my friends here with the same diagnosis was hitting a "brick wall" with his local oncologist --- no new treatment ideas --- his care plan had simply stagnated --- his PSA was skyrocketing, and very little was being done. I suggested he seek a second opinion at Mayo Clinic and my friend requested a consultation with Dr. Kwon, just as I had done in recent months.

My friend recently returned with a NEW series of treatment ideas, and my friend's treatment plan commenced immediately --- I told my friend that his entire life's pathway was changed, simply because he sought a second opinion and his usual doctor hit a "brick wall" in terms of treating his prostate cancer. A day or two of testing --- a night or two in a hotel room --- a consultation with an expert in the field of prostate cancer --- and you can sometimes come home with a whole new perspective or sequence of treatment options that you didn't have before --- that's the potential impact of a second opinion.

It's easy to see from your post, Madagascar63, that you sought out a second opinion at M.D. Anderson --- that's got to be tremendous peace of mind. We have to do everything we can to pursue our best chance of maintaining our health --- and everybody on this forum deserves the best medical expertise and expert care they can find. In the 1970s, the American rock group THE EAGLES --- hailing originally from California --- had a hit song entitled "Take It To The Limit" --- and that's what we need to do for advanced cases ... take it to the limit, in pursuit of those doctors whose expertise lies in the treatment of advanced prostate cancer.
Might have to listen to that song, later today ... just for old time's sake ...

I sincerely think XTANDI is going to provide a powerful PUNCH to knock back your PSA score --- you're going after that PSA like a boxer in a boxing match ... XTANDI is bound to deliver a knock-out PUNCH to that residual PSA that has lingered after your surgery ... in my case, ZYTIGA showed an impact within the first month, for which I was thankful ... sometimes, it takes a bit longer for XTANDI or ZYTIGA to show its impact ... but soon enough, you'll know how it's working for you ... and you'll have to post an update for us then, Madagascar63 !

Madagascar63, you've really taken your treatments to the limit, in my estimation --- your story is one to be told, one to be shared, one to be admired --- your story is a testament to the power of being your own personal health advocate and taking a proactive stance in your approach to treatments ---evidenced by your steely determination to pursue treatments with dogged determination and insightful expertise from your doctors --- I can tell you have made truly INFORMED and THOUGHTFUL decisions, step-by-step-by-step --- we have to do everything we can to pursue the treatments that are available to us at this point in time, and to take advantage of every medicine in the "arsenal of weapons" --- all the while, awaiting new breakthrough treatments and medications to arrive on the scene ...

Thanks for the dialogue and conversation, Madagascar63 --- it's as if we had a visit together at the corner coffee shop --- wishing you well as you start XTANDI --- stay in touch with us here --- I'll watch for your posts in the future !

Sent with my best, across the miles from the United States to Switzerland ~
"Cyclone Fan" ~ Hailing From Iowa State University

I too have advanced PCa (mets to bones and lymph nodes), I was diagnosed in March 2014 and immediately started Lupron and Casodex, later added Avodart (triple blockade). In July 2015 I started seeing Dr. Myers and he switched me from Casodex to Xtandi even though I was not castrate resistant (so it appears you do not have to be castrate resistant to be prescribed Xtandi). I also went through 6 rounds of Taxotere per CHAARTED while still hormone sensitive. So far so good, latest scans were clear, now working on lesions where active to cancer in my bones once was to heal before Myers deems me to be in a durable remission. Myers also has me on some other meds, part of the "kitchen sink approach" that includes metformin, Celebrex, crestor, several supplements, med diet, and famotidine (to help recovery of immune system after chemo).

Ed

Hey Madagascar,

Glad to answer your questions.

First you mention that you had your prostate and lymph nodes removed, in that regard we are somewhat similar as well, the difference is that rather than take the surgical route I used IMRT and had my prostate and many of the affected lymph nodes treated. At the time my radonc said it could extend the time that my first line HT remains effective by reducing the tumor burden. My uro was totally against it saying it was too risky. After doing a lot of research including reading about the MD Anderson study in Snuffy's book that stated that over 50% of hormone resistance can be traced back to the prostate (pages 50,51) I decided to have it done. So far no ill effects, and during my first visit with Snuffy he went out of his way to mention that it was probably the best thing I could have done - reduce the tumor burden and the place of origin for mets. I had another medonc support the decision saying it was a good move since it would help prevent the spread of cancer to other areas surrounding the prostate that are very difficult to treat - so it provided a palliative value.

Snuffy has not discussed much regarding any of the new immunotherapy treatments with me, it seems like he is in a wait and see mode to determine their effectiveness. When I asked him what the next play would be for me if my PSA started to rise he mentioned that he would likely recommend Leukine therapy. My immune system took a hit after chemo and he started me on a daily regimen of famotidine to help boost my immune system - I currently take 20 mg twice daily.

As far as lesions healing, Snuffy has a very high bar for what he calls a "durable remission. My last scans showed no active cancer in my skeleton or lymph nodes, only the sclerotic or scarred areas left behind. He wants to see those heal before he deems me to be in a durable remission. He has me taking Vitamin D - 10,000 IU daily before bed (he said it is absorbed better at night) along with 1200 mg of Calcium daily. I also get monthly Xgeva shots for bone health.

Snuffy prescribed Celebrex during our last visit - he cited the CHAARTER trial where an arm of the trial showed that Celebrex combined with Xgeva had cancer fighting properties which he described as almost equal to that of Taxotere without the toxic SE's. One just needs to monitor blood pressure to make sure that it does not cause any cardiovascular events. He wanted to target any small pockets of cancer that may be tucked away in those scarred areas of bone as well as floating around in my blood stream. I've also been taking 1000 mg of Metformin daily for quite a while now to help control weight and for its cancer fighting properties. He also has me on an estrogen patch to help with hot flashes and for anti-cancer properties (pages 97,98 in his book) and cabergoline help with SE's of gynomastia.

As for treatment option for specific mutations of PCa, he has not mentioned them to me however he did test me to see if my PCa was of the neuro endocrine variety since he thought that my PSA was rather low at the time of diagnosis given the spread of my disease and my Gleason score.

It's a lot of meds to be on but I can't argue with the results so far given my DX.

Ed

Hey M,

The healing in the bone lesions is tracked through bone scans which I have done every 6 months. I am able to time these so I have them done just before my visits with Snuffy so he can review the progress and response to treatment.

For info on how Metformrmin works you can Google Snuffy's videos where he explains how it works in great detail. It not only helps with weight gain but it has anti-cancer properties as well. My local medonc also prescribes it for his breast cancer patients so it's not just a Snuffy protocol. I haven't had any issues taking Metformin thus far.

Good luck and let's stay in touch.

Ed

Hello, Madagascar63 -

It has been some years ago, but you were always a loyal compadre of mine here, back when we were both initially diagnosed.

Thought I would send this today, on the chance you are still out there.

I have not forgotten your loyalty to the members here, or your sense of camaraderie.

In fellowship,
CYCLONE - # Iowa State University