Bill Manning’s blog: Part II


Here is the second of Bill’s blog posts. 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. Click here for Part I if you missed it.

Part II: The winds of winter are upon us …

I had my first blood work done on 2/12/14 since I began taking Zytiga on 1/19/14.  My PSA dropped from 89 to 58.  This seems like a pretty good start.

I do feel more fatigue while on Zytiga and all the recent snow removal efforts have made that fact quite clear to me.  I volunteer at a local food bank and my lack of stamina is quite apparent when we get a delivery of food and I help to unload the truck and restock the pantry.  The ADT cloud is in full force as well.

I received all the insurance and related approvals for my Xofigo (radium-223).  My first injection was scheduled to coincide with my monthly oncologist visit on 2/13/14 (Firmagon and Xgeva injections).

The Xofigo I use is apparently is made in Denver and shipped to the hospital timed to arrive at the hospital on the pre-planned injection day.  The dosage is calculated and is specific for each patient.  It needs to used on or about the time of the pre-planned injection date to ensure the correct dosage.  My understanding is this is due to half-life considerations and the dosage calculation.  My pre-planned injection date is Thursday 2/13/14 at around 1 PM.

OK … so big snowstorm forecasted for 2/13/14.  The oncologist’s office calls and asks that I come in a day early.  Then the radiation oncologist’s office calls and lets me know the drug left Denver but they are not sure if it will arrive at the hospital on Thursday due to the storm and oh, by the way, my radiation oncologist is getting on a flight back to the US from India and even if the drug makes it they are not certain if he will be able to make it back in time, but I should please be at the hospital on Thursday in case both arrive.

I head to the hospital on Wednesday afternoon and do my oncologist visit a day early and then stay in a nearby hotel.  The storm does come and there is lots of snow.  However, both drug and doctor arrive on time and I get my injection.  Wow … how is that for drama?  I drive the 50+ miles home in the driving snowstorm, but a happy ending (except there are 10 new inches of snow in my driveway when I get home)!!

7 Responses

  1. Bill, I’m in prostate cancer myself, age 78. February 2006, had a Gleason score of 9-10. You didn’t say what your Gleason was. I’m on Zytiga and Prednisone, since Mar. 2013, with a PSA of 0.77. In January 2010, I had metastases on my right iliac bone and had it radiated by my own request. So far the lesion has been inactive.

    You remind me of my friend, age 77, Gleason score 8-10, who is not doing too well. I think there were “too many cooks in the kitchen” in his case.

    You mention that at the beginning you had an operation, then radiation and then chemo. How did you get into chemo so soon? At the stage that you were at, wasn’t Casodex a little late? Sorry to ask you all these questions, but I think there is a recommended sequence when these cancer drugs should be taken.

    By the way, I did have the Provenge treatment.

    Good luck.

    Gus

  2. Good luck Bill.

    Today I took my last Zytiga pills. I have had 4 a day, every day, since 7/30/12. With my PSA at nearly 15, it has doubled in 3 months and it’s time for bigger, better things. PSA of 15 doesn’t sound high, but I was diagnosed Stage IV metastatic disease with a PSA of 3.2 (i.e., in the “normal” range), so 15 is significant. Bring on Xtandi. Provenge, had it; metformin trial, tried it; OGX-427 trial, did it. I am a 57-year-old man about to “celebrate” 6 years since diagnosis. If the Xtandi will work for hopefully 18 months, I hear the next bigger, better thing is something called ARN-509. I appreciate the candid information shared in this forum. There is hope for us all.

  3. Hi Gus.

    I am trying to focus the blog on where I am going rather than how I got here. Prostate cancer comes in many different forms and can be different individual by individual. I am not an expert but just a patient making my through the journey.

    If you want to know more about my history please e-mail me at wmannin2@gmail.com and I will answer your questions or you can go to my web site and click on the sub page to see my cancer story.

    Good luck with your treatment and hopefully the Zytiga will continue to work well for you.

    Bill

  4. Thanks for continuing to share your story. I start Xofigo the first week in March, along with Xtandi. So I’m right behind you. Hope to hear more about your experience.

  5. Bill:

    I am 89 years old; Gleason score 10; had radiation; metastases to spine.

    Was on Zytiga for 1 year; PSA started to rise; switched to Xtandi this month after turning down radium-223 (to much interference at this stage of my life). To date I am tolerating Xtandi with no side effects other than tiredness; tolerated Zytiga same.

    Still getting Lupron and a Zometa infusion every 3 months.

    I take one day at a time.

    Wish you the best.

    Sid

  6. Sitemaster:

    I took your advice and my dihydrotestosterone was < 1.0; testosterone < 23. Nevertheless, my PSA is 0.33 ng/ml 5 months after a vacation period. I resumed Firmagon, and 27 days later my PSA was 0.32. I added Casodex and 19 days later my PSA was 0.43 using a different lab. Next lab in 2 weeks. Since my PSA nadir was < 0.1 on ADT, is it reasonable to hope it will return to that level? Bone scan 2 weeks ago was negative. Concerned that the PSA is increasing, though slightly, while on Firmagon, Casodex, and Avodart. P. Michael

  7. Dear Dr. Kaihlanen:

    I think we are going to need to wait and see what your next PSA level is in 2 weeks time.

    Your concern is obviously understandable, and it is possible that your PSA level will never go back down to < 0.1 ng/ml. However, it could well stabilize again at about 0.4 ng/ml for quite a while. This sort of thing is known to happen.

    If your PSA is still going up slightly in 2 weeks time, you may want to ask your clinician to stop the bicalutamide (Casodex) again, and see if the PSA drops back down to 0.3 ng/ml or thereabouts on the degarelix (Firmagon) alone.

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