Stage 4 Myxiod Liposarcoma for 11 years

Cdplayer
Cdplayer Member Posts: 1 Member
edited September 13 in Sarcoma #1

I was on the trial with Docorubicin and Olaratumab. Doctors were convinced I was receiving the real thing. I started Feb 2016. Drs. feel I had a response because my scans decreased in size on the 5 nodules they were following in my lungs by 12%. I started taking the Olaratumab by itself in July 2016. I was just kicked out of the trial because those 5 nodules increased by 22% from the low point. Not sure where to go from here. 

I have been diagnosed with Stage 4 Myxiod liposarcoma for almost 11 years. Diagnosed at age 44 now 55 years old. I was on a clinical trial with Yondelis and taxetere when I was first diagnosed. I went through almost 20 months but had to quit because of the taxetere. I was totally stable during that time. I decided to go to another hospital where I found a surgeon that successfully removed a 9 inch x 6 inch x 5 inch tumor from my left thigh. The first hospital said they could only cut my leg off. Oncologist there decided to wait and see how fast my disease was growing. It was very slow growing. I enjoyed a good 7-8 years off chemotherapy where my wife and traveled on wonderful trips. I still do not have any breathing problems. It is now time to do something about it. I am thinking about going back on Yondelis now that it is available. I am currently getting an opinion from my Radiation oncologist about Cyberknife options. Also, a Thoracic Surgeon for an opinion.

Any ideas would be appreciated?

 A lot has changed since I was diagnosed. I need to weigh my options. I know they are limited.

Comments

  • baileyobrien330
    baileyobrien330 Member Posts: 2 Member

    Hi there. :) Cdplayer, what did you decide to do?

  • FLPirate74
    FLPirate74 Member Posts: 1 *

    I have been diagnosed with stage four Myxoid liposarcoma. It is spreading I’ve had surgery to remove the tumor from my leg and cut a section of my pelvis out. I’ve had two rounds of radiation. I am now faced with the choice of chemotherapy, do nothing or a trial. What are your thoughts? They are appreciated