Bill Manning’s blog: Part VI


Here is the sixth 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 earlier parts if you missed them.

Part VI: The good, the bad, and the ugly

The good … I had my bone and CT scans done at the end of August.  No new progression and some minor improvements in a few spots.  Overall a good result considering the prior scans.  I would definitely consider the Zytiga/Xofigo a success and believe this has given me some additional time. People tell me I look good and healthy.

The bad … My PSA continues to rise and was up to 61.2 in September  My estimate is a PSA doubling time of approx. 4 months.  My oncologist told me if it rises again in October we will switch from Zytiga to Xtandi.  We will see.

The ugly … An increase in pain and it is now a constant companion (but very manageable); fatigue is also pretty bad (blood counts were down in September) and shortness of breath combined with my “ADT cloud effect” makes daily life a challenge.  However, I do keep active as possible and walk 3 to 5 miles almost every day.

And one more on the good side … Traveling with my wife and we are enjoying our time.  This month we are off again to explore the southeastern states and then back through Texas, Tennessee, etc.

10 Responses

  1. Thank you Bill, for your story. I admire and honour your courage.

  2. Fight the good fight my brother. Enjoy life … we all have a date with destiny, but we can live it to the fullest and that’s the greatest victory.

  3. Have you considered using an oxygen breathing system for your condition? I received a couple of e-mails explaining the use of oxygen
    for the treatment of cancer which I can forward if you happen to be interested.

    billamos@verizon.net

  4. Bill:

    Thanks for the recent posting. Two “goods” outweigh the “bad” and the “ugly.” What form of pain are you experiencing — is it metastatis-related bone pain or something else?

    Hang in there and enjoy your travels.

  5. Bill:

    Have you considered Xofigo/radium-223? Several men I know have used it palliatively for pain relief with some success; it also appears to have stemmed spread.

    Think about joining us on the advanced Reluctant Brotherhood remote telephone support call -– more info at thereluctantbrotherhood.org, or e-mail me. BTW, Rob participates.

    Keep the faith,

    Namaste,

    rd

  6. Hi Bill,

    Thanks for posting your story, and here’s to your success! Partial victories can count a lot (like partial credit on school exams)!

    I’m curious whether your doctors are monitoring your testosterone and DHT levels. The Zytiga probably has knocked your testosterone to an extremely low level, but there are probably exceptional patients who do not respond as well as expected to the normal regimens. I know that is the case with more conventional ADT. Perhaps something similar could be happening with DHT. For instance, Dr. Charles Myers has talked about how his own DHT was extraordinarily high even after effective reduction of testosterone to less than 20 with elements of conventional ADT. He was one of those exceptional patients who needed special adjustments to effectively curtail DHT.

  7. Hi Rob

    The only thing I can say about the reason for my pain is that it is located in areas of existing confirmed metastasis plus one new area.

    It has been my personal experience that I have pain preceding radiographic evidence of metastases. I am not sure why or if it something else altogether. Before my bone scans ever showed any metastasss, I experienced pain in almost all the locations that eventually showed metastatic legions on the scans.

    However for full disclosure purposes, I have also done a lot of swimming, biking, and running in my life and that does take a toll on one’s body. However none of my pain seems to be joint related.

    Anyway at this point it is manageable.

    I hope you are doing well.

    Bill

  8. Rick:

    Bill has already been receiving treatment with Xofigo (as stated above in the blog post).

  9. Hi Jim

    Thank you for the comment. I do not belive my DHT is being monitored. I will discuss with my oncologist at my next visit.

    Bill

  10. Thank you for your posts Bill. … I am a little confused. … My husband has stage IV metastatic prostate cancer and he’s done the 40 rounds of radiation; Firmagon; Eligard/Lupron; Provenge; Xtandi — and now he is on Zytiga. I noted that you were on Zytiga first and may go to Xtandi next. Same — very similar scenario here — PSA levels continue to rise. Difference is you did the Zytiga first and he did the Xtandi first. He’s been battling this stage IV metastatic scenario (to bones and lymph nodes) and his lymph nodes are larger now — so with the rise his oncologist has changed his chemotherapy to Zytiga. He is not complaining about any “pain” other than in his joints, but he has had none of the possible icky side effects. He is very tired and short-winded.

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