Bill Manning’s blog: Part XI


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 XI: A chemo life … not my idea of living

I have had very good PSA response through my first four cycles of Taxotere plus Carboplatin.   When I began chemo in January my PSA was 116; as of April 9 it was down to 32.  However, the PSA drop, while impressive, is not the true test of what is really going on, so I was rescanned on April 8.  The scans showed a slight decrease in the soft tissue disease (including the liver) and a slight increase in the boney disease.  My oncologist was pleased with the results so we will go with this is as good news.  He said the bone progression could be a flare.  I have had increasing bone pain especially in the areas that showed progression.  My original tumor slides did stain positive for Nectin-4 so the Phase I trial for AD-22CE is a possibility.

The 800-lb gorilla in the room is the possibility that I have a component of neuroendocrine prostate cancer (treatment derived).  I asked the oncologist if he thought my response to the chemo meant that neuroendocrine cancer question was off the table.  He said, “No, but it is good you are responding”.

He told me we will rescan after cycle #7 and see where we are at that point.  I had cycle #5 on April 9.  The chemo side effects are not pleasant — but manageable so far.  The biggest issues are feeling like crap for a week or so after infusion, worsening neuropathy in my hands and feet, fatigue most all of the time, and a metal taste in my month which is now continuous and makes all foods taste bad.

There is one other issue that has developed, and, while I try hard to fight it off, it does creep into my mind more and more often lately: it is the feeling of hopelessness. You don’t need to be an oncologist to understand the end to my story.  My extensive bone disease, the visceral disease, the number of lymph nodes involved, and the aggressive nature of my disease all point to a poor prognosis; combined with 10 years of constantly dealing with my disease, these have created a state of mental fatigue.

I am not ready to give up yet but, I am tired of treatment.  I am tired of not being me.  I am tired of having my disease dominate my life against my will.

I am also really tired of not having a “real” future and this has caused me to feel disassociated with society.  I recently dropped my Facebook and LinkedIn accounts as they no longer seem relevant to me.

I know it is not possible for most people to understand what is going on in my head, but I am really, really tired of hearing “I am sure you’ll be fine” and “you look great”.

I am hoping to get a break from chemo for the summer and maybe into the fall.  Hopefully during my break I will regain a better perspective and be ready for more treatment.

Peace,

Bill

13 Responses

  1. Just a word of encouragement …. Stay strong! You have a lot to give this world. You are helping others and may not know it. God bless.

    Keith

  2. I follow this blog because I’m in pretty much the same shape. High volume, aggressive disease. I’m on Taxotere for the second time. It’s pretty brutal. I think the harsh side effects lead to depression. You feel so bad, you start thinking you have no future. Once you get off of it, even if it only works for a while, you start feeling better and better.

    Bill, I hope this chemo gives you a pain-free, energy-filled summer. I’m hoping that for myself too. Cheers.

  3. Be strong Bill. I understand your treatment fatigue. It’s a difficult grind.

    All the best to you!

    Dominic

  4. Hi Bill,

    Thanks for continuing your story.

    I never had to go to chemo, or even second-line ADT, but I can empathize with your situation, and I would like to underscore this thought: every day, every month, every year you gain is another year for research to stride onward toward goals that are clearly drawing nearer. If you can hang in there, that progress may turn out to be what you need.

    As an example, last night my group heard a talk from Dr. Ravi A. Madan, a key researcher/physician in the genitourinary cancer group at the NCI. His current main research focus is on immunotherapy for prostate cancer, and it is clear that substantial advances are being made, with indications that combinations with other therapies will likely prove beneficial at some time in the not too distant future. Much of his research is available free in full online. Are you familiar with the work of Dr. Eugene Kwon on immunotherapy, particularly ipilimumab? Of course one of the other new drugs or a combination may also prove helpful.

    I hope you find a way to cope with the side effects and that something will come to lessen the burden of the disease.

  5. I concur, Keith!

    Hang in there Bill. God has a plan for all of our lives. We are in this together brother. You are not alone! God bless!

  6. It sounds like you are exhausted. Maybe now is not the time to think too much but just to be. In my limited experience, thinking plus exhaustion normally lead to poor outcomes. It’s very difficult to be positive and strong when you feel so tired. Let everyone around you do the thinking for a while. Rest up and try to be good to yourself. Easier said than done, but we are all pulling for you.

  7. Hi Bill.

    I am exactly where you are.

    i need to also pull out of the nose dive. I have done a chemo break for past 4 months and feel better, but not the same anymore.

    I think more exercise and a few vacations could help.

    mike

  8. Thank you for sharing your experiences, Bill. You help more than you can know.

  9. Thank you all for the kind and encouraging words.

    Mike Doyle and Ric: I am sorry to hear we are all in the same place.

    Wishing all a good summer with vacations and joy.

    Best

    Bill Manning

  10. Bill, the fact that you’re 10 years out is impressive enough, and gives me hope.

    I’m only 17 months since diagnosis (Stage IV, but not in the bones — PSA of 254 when diagnosed and Gleason scores of 8-10), and sometimes have the same feelings. I’ve only gone through 9 weeks of radiation, and the Lupron and Avodart have brought my PSA to undetectable (for now).

    I’m glad to see you’re still around. Thanks for blogging.

  11. Bill,

    What an amazing example you are of thought for others, by making the effort to pass on so much detail, when I expect it is the last thing you want to do. I cannot add further to what so many have told you — just “THANK YOU”.

    Did you ever try an S.O.T. chiropractor — not to cure, but might help to ease some of the aches and pains — maybe.

    Best wishes,

    Tom Barfoot-Saunt

  12. Bill:

    I am so grateful you have made the decision to continue posting on your blog.

    As Dom says, some men reading this fully understand your treatment fatigue. I have a good friend who stopped treatment and embarked on the Epiphany Highway last November after 14 years of combat.

    Just know you are in control and those who love and support you will endorse whatever decision you make.

    Namaste,

    rd

  13. Bill:

    Thank you for continuing your blog. You remain an inspiration and are helping many of us on the PCa journey. I will pray that you can find a way past the feeling of hopelessness. You are a good man and you are not alone. Peace to you.

    -Rob

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