Free of the Monster

It has been a rough few months with my chemotherapy (mitotane). 

My body does not like the mitotane. It seems that I had just about every potential side effect that was possible and then some.  I started on it in November at 1 gram twice daily. In December I began increasing the dose every week. I got up to 2.5 grams twice daily and I was miserable and really struggling to function. I have written some about this but: nausea, dry heaves, fatigue, feeling chilled, rash, swollen cheeks and throat, problems swallowing, word finding difficulties (30-60 second delay to recall names), dizziness (spinning), cough, and stomach pains. Also, it has suppressed my bone marrow (low white blood cell count) and caused my total and LDL cholesterol to go up very high.

It is a derivative of the pesticide DDT. Sometimes I imagine going to the gardening section of a local store, buying a bag of pesticide, and then going home and purposely eating some of the pesticide twice daily.  Yes. I suspect if I did that it would be about how I have felt over the past few months.

Not everyone feels this way on the mitotane. Everyone has some side effects. For some with metastatic disease they have little choice but to learn to tolerate it. Many end up on disability. Others tolerate it better and just learn to put up with the side effects.

We had our follow up appointment with Dr. Hammer today.  He is the expert on adrenocortical carcinoma. The guidelines say that for my stage of cancer “shared decision making” is important for deciding on the intensity and duration of therapies to prevent recurrence of the cancer. The cancer is just rare enough that there is not a lot of research to support the decisions. Like a lot of what we do in medicine, we end up relying on “expert opinion.” 

Dr. Hammer is the expert. We were eager to hear his opinion.

Ultimately, we had a great discussion with Dr. Hammer and his nurse practitioner Beth. These were the conclusions or lessons that we learned:

• Tolerance of mitotane is variable. My body tolerates it very poorly.
• We opted to be aggressive in our treatment because of the risks of recurrence and my age. Treating with radiation already would be considered aggressive treatment. We already did a full course of radiation. 
• The U of M pathology reading was that my cancer is low grade. This means that it is more likely to be a slow growing cancer. This means that:
  • If I have a recurrence, it may not happen for a lot longer than other patients (potentially years from now).
  • If I have a recurrence, it is also more likely to be an isolated spot rather than a widespread metastasis. This then could be much more treatable. 
• There are no promises or guarantees. In patients with my stage and grade of cancer whether or not they take mitotane is based on the side effects. The decision to take or not take the medicine is one of “shared decision making”.

Ultimately Dr. Hammer and Beth felt the best thing for me at this time was to stop taking the mitotane. This means that I’ll also be able to slowly wean off of the steroids. I will continue to have CT scans every 3 months to monitor for recurrence. If recurrence occurs, then we will figure out the next steps at that time. There is at least a reasonable chance that it will not recur.

So, from a physician’s perspective there are several lessons:

1. I have gotten to experience a lot of side effects and will be more able to empathize with my patients! In clinic yesterday my mind and heart were impacted as I talked to patients. When they talked about their bout with cancer, I could visualize their journey in my mind. When they talked about their struggle to function and deal with side effects of their illness and the treatments, I felt like I was sitting alongside them rather than across from them.
2. I have talked to SO many people that have gone through significant health challenges since my diagnosis. It is truly a fractured and flawed world. Our bodies break in so many ways. We cannot assume that we will always have health. So many friends and coworkers have gone through so much that I never knew. We need to understand and support each other through this crazy and often challenging life.
3. I really like Beth and Dr. Hammer. They are great clinicians. They really care and sit and listen and talk to us. The idea of “shared decision making” is just so powerful. It is not a paternalistic “doctor tells you what to do.” Nor is it being given a menu of choices and then as a patient you just make your own choices. It is much more about having a smart, experienced and caring team that guides you through all of the process.This is what the real balance in medicine is meant to be. I am thankful to my health team for being this for me. I am eager to continue to be this for others.

And so, I am for now, “Free of the Monster” that is called mitotane.

I am very thankful for that.

I am thankful for my healthcare team.

I am thankful to all of you for your wonderful support and prayers for us.