Bill Manning’s blog: Part V


Here is the fifth 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 V: Lost in Space

I finished up my Xofigo treatments in early July. In June and July my fatigue levels were really high. It was a struggle to do most things but I tried my best to keep up. Since early August I have been feeling somewhat better but still feel quite a bit of fatigue. I continue with my Zytiga and prednisone, Xgeva. In August I switched back from Firmagon (degarelix) back to Lupron. This was done at my request. I was having some bad flu-like systems after my Firmagon injections.

In June my PSA rose slightly from 35 to 38 and again in July up from 38 to 43. No big rise but …. Alkaline phosphatase was still good. Blood counts down in June but rebounded a bit in July.

Pain in my ribs and hip has been increasing. Still need nothing more than over-the-counter pain medication, however. It is worse at night and usually wakes me at least once a night.

I will be re-scanned next week.

I am trying to travel as much as possible with my wife. We recently returned from a houseboat trip at Voyageur’s National Park in northern Minnesota. We drove back through northern Ontario, over the top of Lake Superior, and then down over Lake Huron and back into New York. A really beautiful scenic route.

Good trip and I did a little fishing but most days fatigue forced me to bed before sunset (not much fun at parties these days).

I did not know Terry Herbert. I commend his courage that allowed him to follow his path. I hope he has found a good place.

3 Responses

  1. I would like to correspond with Bill as my situation is similar to his. I finished the Xofigo last week and am having the same fatigue problem.

  2. Bill:

    Good to hear from you again and I appreciate the update on your treatments. As I am on a similar path, I am battling the fatigue with Ritalin and so far I seem to be able to tolerate it. I think you indicated that it was not helpful for you. We all respond differently to the treatments available — such as your switch from Firmagon back to Lupron. The different responses to the treatments for this stupid disease make it difficult to have a standard protocol. The upside is that there are more and more options for treating prostate cancer, and let’s hope the development of new treatments continues.

    The increase in your PSA is unfortunate, but as you point out the increases are relatively small. Have you changed your diet to a more vegetarian style? I found this helps to augment the drugs and other treatments in keeping the PSA down.

    I am a Minnesotan and I have done the houseboat trip through Voyageurs and it is a great experience. The rest of your trip sounds great — a beautiful part of North America.

    Hang in there and I look forward to your next update.

  3. I too have taken Xofigo and Xtandi this year. Finished Xofigo in June. Still taking Xtandi at a reduced rate of three pills per day due to fatigue since August. PSA has gone down from 250 to 4.06. Lymph nodes tumor swellings are one third. Age is 73. Have been so blessed. Chemo 3 years ago.

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