My 10-Year Journey with Leiomyosarcoma

By Marjorie Sutton

8/15/24

My husband and I moved to Arizona in September of 2010. I had noticed sometime before that a small lump-like thing on top of my left foot. I finally went to a podiatrist a few months to check it out. He said he was pretty certain it was just a cyst, but decided to do an MRI just to check it out. That came back with no surprises, so I went on my "merry way." 

By January of 2014, the lump had gotten large enough to restrict my shoe wear. It was decided to get it cut out. The podiatrist sent it to the pathology lab to have it biopsied as a standard practice. He called me several days later while I was in the grocery store. He said, “I will probably will never have this leiomyosarcoma in my practice again. If it had been some years earlier, they might have your foot cut off.”

They set me up for radiation. I got these gigantic blisters on top & bottom of my foot, which eventually caused me to lose all the skin and several layers of tissue & fat layers also. It was a mess. On top of that, I was my husband's sole caregiver because he had M.S. and didn't walk anymore. He passed away in 2016.

Then again I blissfully went on my "merry way" with yearly CT scans until summer of 2018. They discovered my lungs were full of nodules, too numerous to count. They biopsied of one of the nodules and it came back as LMS.

After that, my son drove me to a sarcoma specialist at Cedar Sinai in Los Angeles because there were no specialists in the Phoenix area at that time. 

There was an MD Anderson here in Phoenix, but they didn't take Medicare patients. Same goes for the Mayo clinic here. 

While I was at Cedars Sinai the oncologist discovered another nodule on top of my ribs under my skin. I had it taken off that afternoon.

I came home and had a port put in. I started on doxorubicin and Lartruvo for 5 rounds. My blood count dropped down to 0.05 or something ridiculous like that.  I was hospitalized for a week to bring that back up. Then I continued on the Lartruvo alone until this year when Lilly stopped making it.

Next stop... pazopanib 800 mg a day in the beginning of March. I lost my eyelashes after they turned white. My eyebrows are also white and I have about 3/4 inch of white growth of my hair now.

 In the middle of March of this year, I noticed 2 small nodules on the back of my skull. I remembered another acquaintance several years ago...that had these little nodules on her head also, so that prompted me to get them biopsied.

I went to dermatologist to have the larger one biopsied. She said, “it's just a little cyst.”  But when I went back for the results...her eyes got very big and showed me the report that said it was leiomyosarcoma also.  She was very surprised, as was my oncologist. 

I think there is another little one forming on the left top side of my head, because it is tender when I touch it like the others. They did not show up on a CT scan or MRI. The oncologist doesn't want to remove them, because he says I'm stage 4 and will most likely continue to get other spots as well. I thought that was kind of an odd statement.

I also have some "pre-cancer" cysts on my pancreas.  I had an endoscopy/US/biopsy in March 2022.

Most days I feel pretty normal, albeit more tired maybe. I have my bouts of diarrhea, with some intestinal queasiness. But for the most part, I'm good.

So there you have my 10-year journey.