My Cancer Story

PartingThoughts.net

Chemo Again?

Posted 4 May 2016

The news from last Friday’s CT was not what we had hoped for.

There are two issues:

  1. The original tumor’s overall size has increased. This doesn’t necessarily represent tumor growth, because it is partially necrotic (dead), which means that the radiation did its work to some degree.
  2. There are new spots on my liver that did not show in previous scans.

This morning Irene and I met with Dr. Brett, my main oncologist, to discuss the CT results in more detail. I had remained focused on the original tumor, but the bigger issue turns out to be the new liver metastases.

From the radiologist’s report:

“Liver: Multiple new rim-enhancing, hypoattenuating lesions measuring 9-11 mm diameter left and right hepatic lobes compatible with metastatic deposits.”

The fact that these new lesions are not tiny, yet were not there in the previous scan, suggests that they are growing rapidly. I now have what is called a secondary liver cancer: metastases of a primary cancer elsewhere in the body, but present in the liver.

If these metastases keep growing, they would quickly reduce my liver function to a point that would significantly affect my quality of life. Dr. Brett estimated that I might feel fine for a month, but would then have a couple months of decline, as my liver becomes unable to support everything my body needs.

No one knows how long any of these times will really be, of course. I appreciate Dr. Brett’s willingness to stick his neck out and make an estimate; I find it helpful to have something to ground myself with, though these are shockingly short time periods, even with all of the preparation I’ve had.

So, Back to Chemo?

Going into the meeting with Dr. Brett today, Irene and I knew that chemo would be an option, and I thought it extremely unlikely that we would decide to do it. I am well aware of the almost irrepressible desire of the medical world to try any available treatment, and how hard it is for doctors to give up.

By the end of the appointment, we were leaning toward giving it a try.

The goal would be to shrink, or at least stall the growth of, the liver metastases, to give me a little more time. How much more is unknown, but it isn’t a lot — maybe a few months. But when I’m looking at increasing from only one month of “feeling decent” time to perhaps 3 or 4 months, it is pretty compelling, if it works.

Dr. Brett estimated that the new chemo regimen would have a 30% to 50% chance of being effective against the liver metastases.

The new chemo, Abraxane and Gemzar, would be significantly easier than the FOLFIRINOX regimen that I endured for 12 weeks. It would be a couple hours of IV infusion, once a week for three weeks, and then a week off. That’s one 4-week cycle.

Unlike the previous regimen, the IV time in the office is much shorter, and there is no pump to take home for two days. So it intrudes significantly less into “normal” life.

The side effects are also less bothersome than with FOLFIRINOX, especially with regard to GI effects. But like all chemo, tiredness and lowered immunity are key side effects. I would really hate to end up back in the ER every two weeks with an infection, as I did through the entire 12 weeks of the previous chemo.

My Choices

Here’s how I see my choices:

  1. No treatment other than simple palliative care. Focus on quality of life and slash time spent on treatments and doctors. Accept that the likely prognosis is a shift to hospice within two or three months.
  2. New chemo treatment. If it works, I have a little more time of feeling good enough to be active. If it doesn’t, I’ve given up some of my precious time to treatments, and suffered some side effects, for no gain.

And that’s where I leave it tonight.

11 Comments

Harald Striepe

Michael.
I have been following your troubles for a few weeks and just ran across the latest news. Such a difficult decision!
I went through a year of dealing with Colon Cancer IIIA in 2009. After some tough surgery (I had complications post surgery that had me back on the table a couple of weeks later,) I was on FOLFOX that caused multiple complications with hospital stays. It got very close a couple of times and I eventually stopped the treatment, got a second consult with Dr. Fisher at Stanford (one of the experts in this area – highly recommended,) and switched to Xeloda. The insurance did not pay for it despite the lowered risk of complications and as you know, drugs cost multiple times the price charged in the rest of the world. But I paid and made it through that.
I recovered and have been cancer free since then.
You seem to manage the mental challenge fairly well, which I found to be one of the most difficult parts of the experience. Chemo and treatment clearly trigger malaise and clinical depression, which I did not realize until after I recovered. If I ever relapse, I will seek the help of a psychiatrist in addition to my oncologist.
The good news is that there are some promising targeted treatments on the horizon, but there is an element of luck on whether you fit the profile. I would opt for chemo to extend QOL and with the added hope of gaining time to find another study that might fit, while staying level headed about the real prognosis. The fact, it is easier than FOLFOX or FOLFIRINOX eases the choice.
Tough choices. My thoughts are with you.

Lauren Robertson

You mentioned in a post last week that you were seeing your doctor on Friday–I’ve been awaiting this post for an update. The message above from Harald is very interesting–a very quick overview of what he went though dealing with colon cancer. The gut is such a vascular area, which gives those fucking little cancer cells easy access to other parts of the body. I know you’re not seeking a vote but I vote that you try the next treatment–especially given your explanation that it is somewhat less trying than the first treatments you received.

John Mejia

Michael, it is interesting (albeit painful) to hear your updates, but you are to be commended for how you are approaching all of this. I admire your strength and your ability to explain the process and the changes that your body is undergoing. This whole Blog site that you created is brilliant, and I have no doubt that this should receive recognition for being a place that might help many others who are going through a similar experience. My thoughts are with you.

Peter

Michael,

Thinking of you daily and hugging your sister every chance I get. Hoping your decision gives us all a little more time.

college mcmillen

I have been away from technology for a time and was not aware – I just want to say I love you

Jeff Bier

Hello Michael,

Thanks for sharing your journey. My thoughts are with you and your family.

We just finished our fourth Embedded Vision Summit conference earlier this week. It was a resounding success, and that is in no small part due to what I’ve learned from you. In fact, just this morning I was comparing certain aspects of our event to Microprocessor Forums of yore — my yardstick for a first-class conference.

Yours,

-jeff-

Josh Woodlander

Michael, thanks so much for your courageous and briliiant intellect. I have always appreicated your ability to deconstruct and explain complex issues with honesty and clarity. Your lucid and clear writing style about the profound health conditions and choices you now face are inspiring and of course helpful to all of us who may have to make similar choices in the years to come. Thanks for taking the time to share with us in these last few precious months. May your knowledge and wisdom reverberate long after your physical body is gone.

Wishing you well and sending positive intentions… in that you are able in spirit and body to make the most of this Spring and Summer.

– Josh Woodlander

Greg Beddow

Michael, I’ve been away from most technology circles for a while, and though I’m “on” social media never seem to get around to looking at it. But I’ve been catching up with your blog since yesterday and I’m struck with your openness and strength. I count our time together at PhotoTablet / Fotiva / Adobe as among the best professional experiences in my life. Know that I’m thinking of you. –Greg

Nancy Alpert

Michael,
I want to say something, but I don’t know what to say. Mostly I just want to say something so you know I am thinking of you. I wish it weren’t true.
Love, love, love,
~Nancy

Jim Dincalci

Hi Michael, I’m sorry you are going through all of this and have to make such difficult decisions all along the way. Wishing you as much time as possible free from suffering. Love to you. Jim

M Campbell

Michael,
If I had a way to heal you I would send it in a blink.
What I do have to share is love, respect and great thanks for all that you are to our planet, our school, me personally, your beloved Irene, to your most beautiful, creative, loving kids, your extended family, community…….
Like breathing in the wisdom you share, synthesizing, becoming and exhaling through word and deed to carry your kindness and thoughtfulness on…..
Sending love and healing thoughts.

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