Bill Manning’s blog: Introduction and Part I


This is the beginning of a proposed series of blog posts by a patient with serious, advanced prostate cancer. He, and we, hope it will be helpful to all those battling late stage prostate cancer as he takes advantage of some of the new drugs that have come to market over the past couple of years.

My name is Bill Manning and I am an advanced prostate cancer patient with progressive, metastatic, castration-resistant prostate cancer (mCRPC).  I was originally diagnosed in 2005 when I was 49 years old. When diagnosed I was in excellent health and physical condition.

I had surgery, radiation, chemotherapy with androgen deprivation (ADT), and ADT alone. Last year I had an [11C]choline PET/CT scan and a subsequent extensive pelvic lymph node dissection performed at the Mayo Clinic. All my treatments have been at major cancer centers. I believe I have had the best standard of care and I have taken a well thought out and aggressive approach to managing my cancer. However, the “how I got here” is less important than where I am going.

In September 2013 bone and CT scans showed metastases in my ribs and spine (PSA 24 ng/ml). I had taken a 3-month break from ADT so my serum testosterone (T) had risen to 208 ng/dl. I resumed ADT in September and my PSA dropped to 14 ng/ml in October with my T < 20; by November my PSA was back up to 22 ng/ml with my T < 20, so we added bicalutamide (Casodex); in December my PSA rose to 53 ng/ml, again with my T < 20.  We dropped the Casodex.

My blog is going to chronicle my journey through my use of the newly approved agents for mCRPC. I plan to post at least monthly updates and, since I will be traveling about in my truck camper, I may update you on my travels as well.

So here’s Part 1: Time to Act:

I got re-scanned in early January 2014. The results showed unfavorable radiographic progression since the September scans — with progression in spine, ribs, and hip.  Also there was a blockage to my right kidney (so a stent was inserted in January).

By then my PSA was 89 ng/ml but my serum T level was still < 20.

I was hoping to be able to begin with Provenge, but with my PSA rising so quickly we went with abiraterone acetate (Zytiga) + prednisone.  We plan to add radium-223 (Xofigo).

I was already receiving monthly degarelix and denosumab injections. I began the Zytiga + prednisone on January 19, 2014.  I am currently waiting for insurance approval for the Xofigo and anticipate beginning treatment around mid February. I am considered mildly symptomatic in that I have fair amount of bone pain in the ribs and hip but do not use opiate drugs — only some NSAIDs to control pain.

Historically ADT profoundly effects my cognition, executive functioning, and ability to multi-task (and other functions) which I will simply refer to in future postings as the “ADT cloud”.  The ADT cloud issues appear to be amplified already with the Zytiga. Fatigue is also a major side effect for me and appears to be increased with Zytiga.

I will check in at the end of February with an update. If anyone has comments or questions, they can leave them below or e-mail me directly at wmannin2@gmail.com.

[Editorial comment: When Bill states that he was in excellent health and physical condition at the time of his diagnosis, he is being distinctly modest. He was a regular and serious triathlete. Indeed, he is the only person your sitemaster has ever heard of who actually completed a triathalon while on ADT.]

21 Responses

  1. I am so sorry you are going through this, Bill. This disease is so terrible and indiscriminate. I was diagnosed at 51. Had RP, and radiation. It’s been 17 months and fortunate to have my PSA undetectable so far. I try not to worry, but with stage III, Gleason 3 + 4 and an original PSA of 25, and one positive margin, I know my odds are risky of recurrence. I truly hope that some of the new drugs they are coming out with can help you maintain a decent quality of life for years to come, and I will follow your posts on here. Sounds like you are used to being a fighter and an endurance man, so hang in there brother.

  2. I salute your courage, Bill.

    Not so much in dealing with the beast — we don’t have a choice about that — but in sharing your journey with us.

    I look forward to traveling with you in the months ahead.

  3. Hi Bill. What a dreary lot we are!

    The only thing to do is pick yourself up, and, as you say, try to lay some plans to keep us going until the inevitable.

    I was diagnosed at age 60 in 2001 with Gleason 8, PSA about 10 (from memory). My cancer had metastasized already, but only to the seminal vesicles. I took Casodex first, then had brachytherapy 6 months later, followed by 3 months of daily radiation and my PSA dropped back to about 2 or 3. No surgery.

    I stayed on Casodex (and Zoladex, which I am still on) and 2 years or so later, my cancer returned with my PSA going up to 12 or so, and scans showing early metastasis in my pelvis and bladder. I cannot even recall all the drugs (mainly ADT) that were then tried, although I am sure I could get the info from my consultant, if that would help anyone. Incidentally, I felt fine all the way through, and continued to run my business and travelled internationally.

    About 2 years ago, my consultant decided that chemotherapy was necessary, since the scans and PSA showed no signs of improvement. I started on docetaxel + prednisolone, which caused nausea, fatigue, etc., and an increase in PSA to about 40. Scans continued to show deterioration.
    I took a month to clear my system, then switched to Zytiga, which I tolerated very well, with reduction in fatigue, unlike you, Bill. Incidentally during the month “off”, my PSA dropped to about 25! No-one can explain that.

    While I was on Zytiga, my PSA rocketed to over 1,000, and I was switched after 6 months to enzalutamide, which was a bit of a disaster with my PSA rising to over 1,500, and signs of accelerating metastasis, including bones (spine and pelvis) for the first time. Next up I was put on EcarboF which really knocked me out, and I insisted on coming off it after 4 months, since my PSA was now going into orbit and plainly my QOL was very poor. Then to cabazitaxel, since December, which I seem to be tolerating well, and amazingly my PSA has dropped to below 1,000 for the first time in a while.

    I am going to stick with this for as long as it goes on working. My consultant has also promised me Xofigo, as soon as he can get his hands on it. It seems he did a lot of the development work on Xofigo with a colleague at the Marsden, here in London. (My hospital, all the way through, has been UCLH, with my initial consutants, Heather Payne and Professor Emberton, who seem to get top marks everywhere!)

    Incidentally, I forgot to say that I suffer no pain, and am pretty active; appetite fine with cabazitaxel, and minimal hair loss.

    With all these new inventions, I plan to be here, irritating everyone, in 10 more years.

  4. Thanks for sharing this information Bill, I will look forward to further postings.

    I was diagnosed at age 51, normal PSA of 3.2, Gleason 3 + 4, and metastisized to rib and pelvis. How’s that for asymptomatic? No surgery but radiation, Casodex, Provenge, KHAD (ketoconazole, hydrocortisone, dutasteride and lapatinib), metformin trial, Zytiga the past 18 months, OGX-427 trial (19 infusions), along with continual Lupron since initial diagnosis in March 2008. I am certain I am forgetting some other med or treatment.

    My PSA is rising (now to 11 ng/ml) and I am waiting for the next blood test in a week. There are so many variations of this disease; hopefully science will turn it into a chronic illness rather than a death sentence at stage IV.

    Good luck.

  5. Bill,

    I sent you an e-mail to the address given and it did not go through. My husband also has advanced prostate cancer and is undergoing treatment presently. I had a question for you and also some information. Please let me know if you don’t get my other e-mail.

    Best to you.

    Susan

  6. Hi Susan

    I did not receive your email. I have received some others from folks on this site. Can you try to resend.

    Thanks

    Bill

  7. Thank you for telling your story, Bill. So many of us are in a similar situation. I hope you can enjoy a good quality of life for a long time to come.

  8. Bill,

    Like another poster said, I salute you and your desire to share. I wish you all of the best. It appears that you have a very positive approach to life. Thanks for sharing and I look forward to other posts on your journey. It is a journey of life that we are all on. Best to you.

    Frank

  9. Hi Bill (and fellow participants who are sharing their experiences). Thanks for your blog.

    I started out with advanced cancer and a challenging case, but have done very well on IADT3 and radiation. I have a lot to learn about the powerful new drugs and will be interested in following your experience, but as a veteran of IADT3, I’m wondering if your doctors touched a couple of important bases that you did not mention.

    Is your dihydrotestosterone (DHT) being monitored? I’m thinking not, as otherwise you probably would have posted that along with your T level. As you probably know, DHT is far more potent as a fuel for prostate cancer than testosterone; it is the key that travels to heart of the cancer cell and enables it to be a danger to us. While it is made from testosterone, it apparently does not need much. Therefore, for some of us, DHT levels can be very high even while testosterone is under excellent control. In that situation, the cancer has ample fuel. For example, Charles (“Snuffy”), Myers, MD, well known in the prostate cancer community and a patient with an initially challenging, metastatic case himself, found that his own DHT was extraordinarily high, despite excellent control of testosterone.

    You did not mention ever being on a 5-ARI drug, either finasteride or Avodart, the generally more effective choice. The key role of these drugs is to sharply curtail the conversion of testosterone to DHT. By doing that, they also make the antiandrogens more effective as there is far less DHT to compete with the antiandrogens for the fuel docking ports (androgen receptor) on the cancer cells. The earlier antiandrogens, such as Casodex and flutamide, were not that great at competing for the docking ports. The new drug, enzalutamide (Xtandi), is much more effective. I don’t know whether there is still a role for the 5-ARI drugs for a patient on Xtandi.

    Perhaps those major centers have covered these bases for you, but I’ve learned that some major research centers tend to be world class in their areas of focus but can be nearly blind to important technology and developments that are outside those areas of prime focus. “Trust but verify” is a good tactic.

  10. Bill,

    Very glad to see you have started this blog.

    I noted your PSA rose while your T was < 20. That is my present concern. I have Gleason 9 and have had mostly zero PSA levels since my surgery in 5/12. Because of a PSA of 0.12 ng/ml 5 months after surgery, I began IMRT and ADT. Since 11/13 I had five zero PSA levels again until I stopped ADT and began a vacation period on 9/15/13. On 1/27/14 my PSA was 0.3ng/ml, with T of 24.

    What next? Does this mean I now have CRPC and should begin newer forms of therapy … or just resume my ADT (degarelix).

  11. Dear Dr. Kaihlanen:

    I do not think that this rise in you PSA implies that you necessarily now have CRPC. However, you may well need to re-initiate treatment with ADT at some point in the not too distant future … and Jim Waldenfels would tell you to talk to your doctor about getting an assessment of your serum dihydrotestosterone (DHT) level to see if that is elevated even though your serum T level is still low. I would tend to agree with Jim about this.

  12. Thank you very much. I will get my DHT. Sure appreciate your input and promptness. I have made an appointment to see Dr. Ian Thompson for my future oncology care. Presently my surgeon is calling the shots.

  13. Ian Thompson is definitely “one of the good guys”.

  14. Hi Bill,

    Thanks for your posting and info.

    I am a firm believer in the body’s ability to heal itself through the power of the mind, positive thoughts, and prayer. There are no doubt people who have continually repelled this illness and with no real explanation as to why. There are exceptions to every rule.

    I believe it is because of the aforementioned and that if you take this approach — and you may have already done so — you will overcome this illness.

    I would say to anyone who has this problem to act as if they are already healed and really, really really believe it. Look past it to a healthy life. Looking past it is the key in my humble opinion. You must see a healthy life after your mind does the miraculous and does what it is capable of doing. I once heard the body is capable of creating hundreds of chemicals. It may have been Deepak Chopra who said this. He is a well known doctor and past surgeon who has helped many people by using the power of the mind. I believe he is Magic Johnson’s doctor and you know Magic has had the HIV virus since the 80s I think — without getting full blown AIDS.

    Best of luck.

  15. Sitemaster:

    As a follow-up to my 1/30/14 posting, I saw Dr. Thompson. Since I had 1 year of PSA < 0.1 on degarelix but had now developed a PSA of 0.33 ng/ml while on a 5-months vacation from all meds except Avodart, he resumed my degarelix and added Casodex. One month after the resumption of degarelix and 10 days of 50 mg Casodex, my PSA was 0.32. I don't know whether to be optimistic because it decreased or pessimistic because it didn't drop lower. I read that Casodex takes 5+ weeks to reach its nadir. Am I expecting too much too soon? I feel great. Thank you for responding to my posts.

    P. M. Kaihlanen

  16. Dear Dr. Kaihlanen:

    Obviously it would have been nice to see your PSA drop promptly back down to < 0.1 ng/ml. The fact that it didn't is the bad news. On the other hand, your PSA appears to have stabilized at about 0.3 or so, and that is the good news.

    I don't have a quarter of Dr. Thompson's knowledge, so I think the key question here is "What does he think?" rather than what do I think! If your PSA were to stay stable at ~ 0.32 or 0.33 ng/ml for the next 18 months, one would have to assume this was a good thing. Right?

  17. I am now undergoing chemotherapy. I have had six treatments so far, and a new one within a week. I took Zytiga and my PSA went from 1.90 to 11.03 in less than 2 months. Then my oncologist decided on chemotherapy. My PSA has been going down steadly to 5.31, with prednisone 5 mg twice a day. I also get monthly injections of Lupron. I understand that Zytiga only works on about 20% of patinets. I am looking forward to have a PET/CT scan at the Mayo Clinic, to see what is going on. I am othrwise healthy and all of my test results are great, what will be your best advise?

    I have had a radical prostatectomy, radiotherapy, Casodex, and then cyclophosphamide, which brought my PSA down to 0.78 ng/ml. Then it started to climb, and we switched to Zytiga and it blew out of proportion.

    I am interested in any suggestions. Only the Lord knows what is in store for all of us, but he speaks through others at times. I am 74 years of age and in a great health. I have my sons looking after after me and checking and treatments; four of them are doctors. How reliable is the choline-C11 PET/CT scan? I am looking for a date to do it, after I complete the chemotherapy. No signifciant side effects, except some diarrhea.

    Bless you all. Keep fighting.

    fco. r. benzo

  18. Dear Francisco:

    For someone with a PSA level of ~ 5 ng/ml, the choline-C11 PET/CT scan should be reasonably accurate at detecting small tumors. However, no imaging test is ever “perfect”, as I am sure your sons the doctors can explain to you. When you say that you are having chemotherapy, am I right to assume that you mean chemotherapy with docetaxel/Taxotere + prednisone? Am I also correct in assuming that you have no sign of any metastasis on a standard bone scan?

  19. Dear Sir:

    You are correct, in regarding the pet scan, I am having chemio with docetaxel and prenidsone 10 mgs every day, divided in 5 mgs.
    I have had six going into seven chemios, what I will like to know is who else does the choline-C11 PET/CT scan. I know the Mayo Clinic in Rochester, MN, does, and the other Mayo Clinic in Arizona. PSA before surgery, 4.40; at surgery 6.46; Gleason 3 + 3 on biopsy, confirmed twice; after surgery 4 + 3. Excellent health.

    May the lord bless you.

    Francisco r. benzo

  20. Dear Francisco:

    As far as I am aware, the only place in either North or South America that is currently able to conduct a choline-C11 PET/CT scan is at the Mayo Clinic in Rochester, Minnesota. They do not do this test at the Mayo Clinic in Scottsdale, Arizona. Other centers exist in Switzerland and in Italy.

  21. Dear Sir:

    No metastasis on anything; my oncologist is treating me with Taxol + prednisone. We will be going to the Mayo Clinic, and we are currently trying to arrange a suitable date. I have had regular bone scans.

    Bless you all.

    Fco. Benzo

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