Leiomysarcoma

Less than 4 people out of a million will ever have this cancer.  It's a very agressive soft tissue cancer.

I was diagnosed with Leiomyosarcoma in Sept. 2001.  This cancer was found 'outside' my uterus.  I had my uterus, ovaries, tubes, lymph nodes removed.  For 2 years my check ups were 'clean'.  Then, in July 2003, I tripped & fell on my chest. When the emergency doctor saw my x-rays he gave them to me & said to go see my oncologist (who did my surgery) as I had spots on my lungs.

My oncologist did a ct scan & a ct guided biopsy - sure enough the cancer was now in my lungs.  I started chemotherapy August 2003.  My 'schedule' was Gemzar the first week, Gemzar & Taxotere the 2nd week, injections daily (Neupogin) 3rd week, then start over with Gemzar again.

This schedule was for 18 weeks. At 9 weeks I had a ct scan - showed that the spots were reducing in size - at the end of 18 weeks, another ct scan - spots were gone.

3 months later, ct scan again - spots were back - in April 2004, started 18 weeks of chemo again (gemzar & taxotere & neupogin injections).  Again, 1/2 way through chemo my ct scan showed that the spots were shrinking.  At the end, gone, again. 

Three weeks after the last treatment, I went on vacation to Oregon & went river rafting.  10 days later, I had surgery to remove a resistant spot on my left lung.  

4 1/2 months after surgery, I was on chemo again (January 2005), only this time it was adriamycin - once every 3 weeks (total of 6 treatments).  Ct scans again showed the spots were gone. 

My oncologist sent me to Stanford (October 2005).  The head oncologist said that my oncologist was doing exactly what they would reccomend.

Another ct scan  & they (spots) are back.  So, in January 2006, I was back on gemzar & taxotere.  Also, the spots were larger & at the end of 18 weeks I still had a fairly large one.  I took a 6 week break then went back on gemzar & taxotere (with nepogin injections) (July 2006)- this 18 week treatment ended Nov. 2, 2006.  My ct scan showed some scarirng on the lungs.  I had a ct scan 2 weeks ago - haven't gotten the results yet, but will when I go see my oncologist & thoracic doctors.

 Ever since my first surgery (2001), I have not had any symptons to alert me to any cancer.  I have to rely on the ct scans.

I've lost my hair, grown it back & lost it again (starting to grow back now, but not a whole lot of it).  I lose my sense of taste when I have gemzar & taxotere.  Takes about 7-9 days before I can taste again.  During those 7-9 days everything tastes salty, even water, but I try to drink as much as I can.

I continue to work full time (commuting an hour each way), go on vacations & live one day at a time.  I don't give up or quit. 

I don't know if what I've written helps, but please feel free to e-mail me.

Sincerely,

Candice Tiller Cotterill

I Candace,

I would really like to talk with you. I have leiyomysarcoma, with tumors on both lungs and my perlvis. I was taking gemcar and taxotere, but sudennly, they stopped working. The tumor in my pelvis got bigger. I am at Sloan Kettering, but they don't seem to think of surgery as an option, and I am very scared.

I would appreciate it if you would write back.

Paulette

hi Paulette,

I hope all is well. My mom was diagnsed as LMS recently and it has spreaded from uterus to her lungs. We are working on getting her to Memorial Slan Kattering. May I ask how do you rate this hspital and which Dr. did yo see? Any advice is appreciated. Thank you.

Paulette's doctor at Memorial Sloan-Kettering is Dr. Martee Hensley, who is an authority on leiomyosarcoma.  Our experience with MSK was very good - well-trained and caring staff, excellent facility.

Unfortunately, Paulette's disease has spread to the point where treatment has been stopped, and she is currently in a hospice.

Greg (Paulette's husband)