Tuesday, June 20, 2017

No Good Options

My consultation with my oncologist today was very informative, and I got the answers I was expecting. Just not the ones I was hoping for.

It seems I'm at the end of the road when it comes to hormone treatment. It's no longer effective for me. The pharmacy that sends Xtandi to me called yesterday to ask if they should send the next bottle. I still have more than a bottle left now, and my oncologist doesn't think there's any point in ordering any more. When they call back, I'll tell them no for the first time.

I seem to be in a small subset of prostate cancer patients whose cancer is particularly resistant to hormone treatment. That's why I got so little time out of Lupron and Xtandi. I also learned that my cancer does not produce much PSA. So while many guys in my condition have much higher numbers, in my case, even a number as low as .98 warrants new scans; both a bone scan and a CT scan. We'll do both of those early next week. Even with my PSA as low as it is, my doctor expects to find further progression of the disease.

Assuming all of that is true, what are our options? In terms of what's offered at the facility where I get my care, there are only two. The first is a drug called Xofigo. Yet another cancer drug that starts with X and sounds like a Star Trek character. Technically, its a chemo drug, but it's a radioactive isotope that's delivered once a month intravenously. I'd have to go down to the Radiation Oncology office to have that done. Side effects are supposed to be milder than chemo, but it only acts on the bones. If no metastasis is found in any other organs besides my bones, that may be an option. But it's not a very attractive one to me.

The most common side effects for Xofigo are nausea, vomiting, and diarrhea. Not only not fun, but dangerous to my ability to keep weight on. Gaunt Cancer Guy would be here in earnest. Nobody would be telling me how good I look anymore. Like I've said before, I may be a cancer patient, but I don't want to look like one. My urine would glow in the dark, so my wife and I would have to use separate bathrooms. But we've done that for years. It's one of the keys to a long lasting marriage - separate bathrooms!

The other option, of course, is chemo. Anyone who's read this blog even casually knows my attitude towards chemo. I'm against it, and my wife is even more against it than I am. The chemo drug they'd start me on is called Taxotere. That drug comes with all of the side effects you see from chemo; hair loss, loss of appetite, nausea, severe fatigue, and just feeling like crap overall. If Zofigo would make me feel bad, chemo would make me feel worse. And look worse too. Not that I'm vain or anything.

My oncologist will also check again with the university hospital to see if there are any clinical trials that might be good for me. But I will also ask about potential side effects from those. Many times, in a clinical trial, you're a guinea pig for those things. They may not help at all. You may end up in the placebo group. There's a lot to consider.

I didn't get the chance to ask about any other potential therapies like immunotherapy or proton therapy. Maybe I'll bring those up when we get the results of the scans next week, if only to get his opinion on them, and whether there's someplace local that he can refer me to that does them, and whether he thinks I'd be a candidate for them. Those places would have to take my insurance too, obviously.

Like I was with the news of the last rise in my PSA, I'm doing OK with this news too. Really. One thing you will never get from me in this blog is happy talk. Only the truth, the whole truth, and nothing but the truth. I actually feel really good today. The conversations I've had with loved ones so far today have helped a lot, and it's just the beginning.

No decisions have been made, and none will be made for a while. My only firm decision right now is that I won't begin any new treatment until August, maybe September. There is too much to do before then. Once our 40th anniversary party at the end of July, the summer show with the kids in early August, and the annual music club summer barbecue at the end of August are past, I'll consider taking some time on the sidelines to pursue harsher treatment methods than I've experienced so far.

But even then, I can't guarantee that I'll choose to undergo any of that. It all depends on how I'm feeling, where my heart is, and what my wife wants me to do. Because it's not the amount of days in my life that matter to me, but the amount of life in my days. Quality of life over quantity. And to keep repeating something else I've said in past posts, my main priority is not living as long as I can. It's making sure that my wife is provided for financially. The two might be mutually exclusive, for reasons I can't fully explain in this blog.

I appreciate all of your love, support and prayers more than I can express. If you believe in prayer, please pray that God would grant us peace and the wisdom to make the right choices for us. If you feel led to pray for my healing, please do so. If we are friends, what I need from you more than anything is contact. Just being there is enough.

Before you suggest an alternative treatment, please remember that we can't pay out of pocket for anything like that. We're pretty much confined to what insurance covers. And before you tell me to keep fighting, please remember that that's the exact question we're trying to answer over the next two and a half months. How much longer to keep "fighting."

I know this isn't the news you wanted to hear. The word my oncologist uses to describe my cancer is deranged. It seems to find a way around whatever we throw at it, and in pretty short order. I can't help but believe that would be the case with any future treatments as well. The choice we are faced with over the course of this summer is when to stop throwing and just enjoy the time we have left. #waroncancer #bearingwitness


  1. Love you, brother...it's simply awesome to see you bearing witness like you are. Jesus is proud of you.

    1. Love you too,CJ!Thanks so much for the note.

  2. I do believe in prayer so I will be praying for you and your family. Thank you so much for allowing to do that for you. I know you don't know me. ( just a puppeteer like so many others blessed by your talents). You and your wife are certainly walking the walk. Love to you brother in Christ.

  3. I know you and Sharon will absolutely make the right decision for the two of you. I am sorry for the results but I know you and Sharon are certainly handling it gracefully.

  4. Mark, I'm sorry to hear that the therapies you're trying aren't effective. I've mentioned before my experience with my mom, caring for her through stage 4 breast cancer. When first diagnosed she took a combination of taxetere and cytoxin- chemo. It helped with the cancer quite a bit and for her (age 73 at the time) she tolerated it pretty well- a week or less of feeling nauseated and vomiting and two weeks of feeling better before the next treatment.

    I think it's impossible to figure out when to call enough enough. The last radiation round she did was treacherous, took weeks to heal from and gave her nothing in quality or quantity of life. But we didn't know that would be the case at the time. Hindsight, I wish she'd never done it and I was surprised when she decided to in the first place.

    I don't know that you'll know when the right time is for you except that when you chose to stop treatment, that will be the right time.


  5. Mark, Jeff had the same limited reaction to treatments. He started with taxotere at the very beginning and xofigo was one of his last treatments. He only had two injections because his blood counts were perilously low. We had a similar conversation with the oncologist on May 4 - that there were actually no more treatments and that Jeff only had 3-6 months left. Jeff died less than a month later, but he did so peacefully after fighting the good fight. I wish you well, Mark. Hoping that you beat the odds for as long as you can. Matt

  6. Praying every day for our new friend and know that God Loves You and so do we. God Bless You + + + +

  7. In this post, perhaps for the first time, I detected a sense of an emotion that I can't completely put my finger on. Is it that you are feeling somewhat defeated, or is it that you are feeling acceptance? Both? There is usually an underlying emotion in your entries; sometimes it's excitement, joy, fear, love, etc... this time it is different. Know that we love you very much, and are always here for you. We are SO looking forward to our visit next month!!

    1. I don't think it's defeat you sense, Lori, just a combination of acceptance and melancholy. Of course, all of it hit home in The Storm.