Desmoid Treatment: Trial and Error

This is the fourth post in a series that details my journey from the initial diagnosis of my Desmoid tumor through surgery to the discovery of its return in 2016.


During August 2016, while enjoying our third month of marriage, we received the news that my Desmoid tumor was growing. It had returned with a vengence.

“The tumor tends to become more aggressive when it recurs after resection.”

National Organization for Rare Diseases, Desmoid Tumor

While surgery was not entirely ruled out at as a potential form of treatment, the aggressive recurrence indicated the tumor hadn’t responded well. It was time to pursue other options.

Meeting My Oncologist

My surgeon knew of two oncologists in Indianapolis with Desmoid experience. One was a friend he knew I could see quickly, so he put in a referral.

During the first meeting with my oncologist, I was presented with a series of treatment options that we began to work through from least to most aggressive.

All of the terms were new and unfamiliar but with everything laid out in a step-by-step manner, it seemed straightforward. We had a plan. In the midst of the unknown, this was a lifeline.

Upon meeting my oncologist, we began to work through the low urgency options in the right-hand column.

The reality of having an oncologist as one of my primary doctors didn’t settle in. Oncologists treat cancer. To distance myself from reality, I would remind myself my tumor was benign–keeping all thoughts of chemotherapy distant.

Desmoid tumor is called aggressive fibromatosis as it has similarities with a malignant (cancerous) tumor called fibrosarcoma. However, it is considered benign because it does not metastasize (spread) to other parts of the body.

National Organization for Rare Diseases, Desmoid Tumor

(We process based on the information we have at the time–it’s impossible to know what you know don’t. I did not know Imatinib was a form of oral chemo–the second option listed under low urgency. In fact, I wasn’t aware oral chemo pills existed.)

Treatment Trial and Error

Under my oncologists care, we did a trial/error approach to two drugs.

Tamoxifen

The first was Tamoxifen. I was on the drug for three months with minimal side effects before undergoing an MRI to determine its effectiveness.

The MRI revealed growth in a new area of my leg and a second Desmoid tumor was officially diagnosed.

It’s important to note that the tumor did not metastasize, it remained in the area where surgery was performed.

Following the protocol recommended by MD Anderson Cancer Center, my oncologist stopped Tamoxifen and we shifted to a new treatment plan: oral chemo.

Gleevec (Imatinib)

Exactly three months after starting Tamoxifen, I began taking Imatinib, better known as Gleevec.

As I began to research the drug, my optimism that this would be our solution grew. The drug was saving lives and had transformed leukemia treatment.

When the first two-week supply arrived in the mail, some of my confidence faltered. It hit me for the first time what I had to do.

I remember sitting at the kitchen table with my husband and opening the box which revealed a bright yellow bag with bold black letters that read:

CAUTION: OBSERVE SAFETY PRECAUTIONS FOR HANDLING AND ADMINISTRATION.

The packaging did not make me want to put the contents inside in my body.

I didn’t have much time to think. My oncologist wanted me to begin the medication the evening it arrived.

I did what I had to do. I opened the container, took out the three tiny pills I would begin to take every morning and evening, exhaled a shaky breathe, looked over at Caleb, and swallowed them down.

The emotional component of the experience surprised me. It wasn’t the pills that threatened me, but their potential side effects. I was convinced they’d all hit at once. They didn’t. It took weeks for the side effects to set in as the drug built up in my system.

As they set in, my pain increased and my mobility sharply decreased.

Intervention Needed

Mobility Loss

I was on Gleevec for approximately two months. Ultimately, neither drug aided in reducing the tumors.

A few weeks after starting Gleevec, my leg pain sharply increased and it became impossible to put my full weight on my left leg. Within days of the pain ramping up, I had to use a crutch to walk.

I made an emergency appointment to see my oncologist. As soon as he saw me, he rushed out of the room to call my surgeon. He wanted my surgeon to see me ASAP. He also sent me to be evaluated for blood clots. It was a Friday–the day all pertinent medical challenges occur–and my surgeon couldn’t see me until Monday.

On Monday, he didn’t have any answers. Instead he scheduled an MRI–two weeks out–and prescribed Celebrex, an NSAID, for pain management.

The MRI revealed that the tumors continued growth was constricting my gastrocnemius, impairing my ability to fully straighten my leg. His recommendation was to continue Gleevec for another month before reevaluating.

Another month without any hope other than, “eventually, the tumor will begin to go away” was not acceptable to me given my rapid decline in mobility. I was desperate for answers. Desperation wasn’t a bad place to be as my desperation sparked change.

Desperation often sparks change.

MaryBeth Eiler

Before leaving the office that day, I requested all my medical records and scans. I finally understood the importance of being my own advocate.

Finding a New Team of Doctors

I knew something drastic had to happen. I felt the urgency of the situation. My doctors were not communicating and the once-clear path was now extremely hazy.

My sister pushed me to give the remaining surgeon with Desmoid experience a call. Thankfully, my insurance did not require that I had a referral and while I had to wait a few weeks, I eventually got in to see L. Daniel Wurtz, MD at IU Health Physicians Orthopedic & Sports Medicine.

Dr. Wurtz ruled out surgery as an option due to complexity and referred me to his colleague, Daniel A. Rushing, MD at Indiana University Simon Cancer Center–the other oncologist in the State of Indiana with Desmoid experience. The tumor was growing increasingly close to a blood vessel and needed to be stopped before it attached and complicated things further.

A few weeks later, I met Dr. Rushing and everything began to change.

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