Bill Manning’s blog: Part XIII


Here is the latest of Bill’s blog posts. He, and we, hope it will be helpful to all those battling late stage prostate cancer. Click here for earlier parts if you missed them.

Part 13: 16th tee or 18th fairway …

It has been a while since my last post.  The 15 palliative RT treatments to my thoracic spine worked well and reduced the pain there to almost nothing! Yeah.

In July I developed a severe pain in my right arm. Simple x-ray suggested progression. In August I had 10 RT treatments to my right arm. These unfortunately did not relieve the pain.  Consequently I have about 30-40 percent function in my right arm.  I can no longer place any significant torque (twisting motion) with my right arm, nor can I extend my arm very well.  This seems to be a permanent condition.

I tried Calmar scrambler therapy for the neuropathy in my feet. It did relieve some of the issue. Yeah again!

I had my scans repeated in early September. Lots of progression in bones, lymph nodes, and liver. Also some small nodules in my lungs. (It is unclear if this is cancer or not at this point.)

Unfortunately, I resumed chemotherapy (cabazitaxel) last Thursday — 1 day prior to finishing my Calmar treatments — and the neuropathy has come roaring back.  As of today (Monday) it is worse than ever and creeping up my legs. As a result I will not be willing to continue with any additional cycles (my oncologist will be thrilled when he hears this news), but it is a non-starter for me.

For those who are interested, my PSA went from 22 in May to 123 in August. The 123 PSA is an all-time high for me.

I asked my oncologist on Thursday if he could help me understand where I was in this whole cancer process, I did not ask him “how long I have” but instead couched the question in a golf analogy. So I asked, “Do you think I am on the 16th tee (meaning three full holes to play) or on the 18th fairway (meaning roughly half-way down with the last hole)?”  He deferred his answer until after my next set of scans, so, of course, no answer — but I do not believe that I am on the 16th tee.

My oncologist said he has some “other things to try” so I will see what he comes up with now that chemo is no longer an option.

The journey continues.

10 Responses

  1. Bill, I hope and pray that your onco can give you another 9 holes, or even 18 again to play. I’m fighting by your side.

    Eric

  2. Bill glad you gave Calmare treatment a try and that it provided some relief. BTW, patients have done a few boosts after chemo and it relieve their PN.

    All the best!

    Dominic

  3. Bill, my heart goes out to you in this difficult time. You are a brave man, and you continue to fight valiantly against this terrible disease. Thank you again for your posts. I am only 3 years post-surgery and not yet recurrent, but I know that’s a real possibility and, as with many here, your blogs provide valuable information and a heartwarming window to the man behind the battle. Keep up the good fight.

    May the blessing of the rain be on you —
    the soft sweet rain.
    May it fall upon your spirit
    so that all the little flowers may spring up,
    and shed their sweetness on the air.
    May the blessing of the great rains be on you,
    may they beat upon your spirit
    and wash it fair and clean,
    and leave there many a shining pool
    where the blue of heaven shines,
    and sometimes a star.

  4. I’m not far behind you, Bill.

    I was already polymetastatic at diagnosis last year, no surgery, just palliative radiation to my hip and ADT for life. Failed primary ADT in 4 months, pulled the plug on Zytiga in 6. Oncologist says not to expect much from Taxotere or Xtandi after such poor responses.

    So … I am reading your chemo tribulations with the knowledge that I will soon be walking in your moccasins.

    Last one upstairs brings the beer!

  5. We are all on the same journey, although at different points in the road. But we’re not at the 18th hole yet, and there are different treatments coming out.

    With my weight loss, I feel that I’m closer than you, Carl, but not quite as far along as Bill.

    In any event, I look forward to meeting everyone at the 19th hole, but I hope that it isn’t too soon.

    Eric

  6. Carl and Eric

    With all due respect the reason I reported the conversation with my oncologist regarding “where I was in the process” was not intended to suggest how much or how little time I had left and that was not the point of my question. Since I have no point of reference and the oncologist has seen many many cases, I wanted to understand better from his perspective where I was in the process based on his experience. Even if I am on the last hole I might live for a long time. I also believe that many men have a similar desire to understand how their oncologist views their situation. I had hoped he would say something like “No worries. You have a lot of swings left …” or 15th green.

    This is not intended to be a contest. I am 100% sure there are many men who are in far worse shape and with shorter life expectancy.

    The purpose of my blog is an attempt to inform other patients from my experiences and treatment decisions. I will stop posting when I believe my posts are no longer relevant in that regard.

    Bill Manning

  7. I apologize — I misstated it, I meant it to be comparative, not competitive. We are in a race, in a way, in which the winners are the ones who take the longest to reach the finish line.

    Bill, your posts are always relevant. It is important to share our experiences with both treatment and our emotional states — how we are coping with the enormous stress. And, on a different level, I care about what happens with you.

    All of us wish that the doctors could tell us where we stand, but nobody can tell us how long we have with any degree of accuracy. Anything can happen with some of the new treatments.

    You always have my best wishes, and my prayers.

    Eric

  8. Bill:

    Thanks for your post. The golf analogy is an interesting approach which I may borrow when I get to the same point. I imagine your oncologist will struggle with the answer as so many of us have different responses and the treatment process is so varied. If he does provide an answer, I hope whatever hole you are on (and any remaining holes) are all par 5s.

    I will continue to keep you in my thoughts and prayers, I hope you and your family are still finding opportunities to spend time together and enjoy life in the best way possible.

    Peace,

    Rob

  9. Bill:

    Have you had your tumor sequenced? If you have been following Dom’s story, something came out of it for him.

    I was just with another buddy attending his appointment with Larry Fong at UCSF, and they have scheduled him for a Dream Team West bone biopsy provided they can overcome his blood issues — very low platelets!

    If your blood work is still strong, now may be the time to get sequenced. Dom went through Duke and Foundation One, although that panel is more limited than if you can get into a Dream team (West or East) sample. As Larry pointed out, there is a good likelihood nothing will show — but at the same time, something might — as it did for Dom. Now we have to see if he will respond to a PARP inhibitor.

    You are in my thoughts — onward and upwards,

    rd

  10. My heart goes out you. My husband is on this journey and we take what we can from every day. We live in the UK so not all drugs are available but have tried enzalutamide (Xtandi) and also found the PSA went up significantly each month. Now starting on radium 223 and hoping for good results. Still cannot forgive our doctor for not offering the PSA test (which we did not know about) earlier, before the cancer was metastatic and could be cured with surgery or radiotherapy.

    Thank you for your brave blog.

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