Would like to connect with others with metastatic liposarcoma

@colleenyoung
I began this journey in 2008 when I was diagnosed with a large retroperitoneal tumor. I was part of a trial designed to shrink the tumor before they tried surgery. I was followed at UNM in New Mexico. I was treated with gemcitabine, docetaxel and avastin for I believe 8 treatments. Then they removed the tumor. The felt the treatment was successful in that there was significant cell death. It did not however shrink the size and I do not remember the size but it was a 9 lb tumor.
I was followed at UNM until 2018 when they decided to discharge me because there had been no reoccurance.
Then October, 2025; I had symptoms of what I thought could be appendicitis
but I could feel a lump in my lower abdomen in the same spot as my previous tumor. They did an ultrasound and identified the tumor. At that time, I was experiencing difficulty getting a response from UNM so I self-referred to Mayo and they got me in within 4 days. I was seen in the hepabiliary department and surgery was planned for January, 2025. They felt they had clear margins except for one area near my kidney. The doctor did not want to remove that kidney because I also had kidney disease. She felt she had gotten the cancer though and nothing else was recommended at that time.
I was followed at Mayo every 3 months but missed my May appointment because I was in the hospital receiving surgery for a bowel blockage. I have an ileostomy from the surgery in January where they also removed my appendix.
I went back for my 3 month check up in October really not expecting anything to be a problem. However, they found several large nodules and multiple smaller ones in both my lungs as well as another tumor retroperitoneal. They did a biopsy of one of the nodules in my lungs and discovered the liposarcoma had metastasized. My present diagnosis is Metastatic high grade dedifferentiated liposarcoma with extensive aberrant desmin expression.
The liposarcoma team thought the best approach was systemic and recommended doxorubicin but did not want me traveling back and forth between New Mexico and Mayo for treatment they felt there were to many risks so they suggested I find a facility closer to my home.
Unfortunately, I again ran into road blocks at UNM and decided to go down to MD Anderson. My intent is to find out what they would offer for treatment and how long that might extend my life. I think that is it. I tell people now I am a miracle because I was cancer free for 17 years.

@debschmalbach

Wow, what a great story!. My story is in its infancy compared. I've had LMS for 14 months now. I'm 78, and have had radiation (April, '25 and surgery, '25). Recently elected not to have chemo due to ongoing psedonomous (sp). Just had my second 3 month check with no growing of the nodes since Dec.'s CTs (where nodes has doubled in growth since Sept). I'm stage 4 with very few symptoms due to my sarcoma. My current symptoms, nausea, sweats, chills/fevers, and burning during urination, all of which sometimes recurs. I have a stent in my left ureter where the pseu.....is colonized now and recurs (6 times in 7 months. The surgery got most of the LMS. A little was left behind attached to a nerve. The the tumor (3"X3"X2" was "solid as a rock" and attached to a nerve ending. This has resulted in total numbness from my hip to just above the ankle. My left foot is unaffected and allows me to use a walker, working on using a cane. The PT I've rceived has been awesome, ridding most of my pain. I've been on 3k mg a day of Tylonel and some oxycodone (reduced from 8 times to 4, at most). Tylonel really helps, oxycodone not so much.

Good luck!

@chuckeg
Hello....not sure if you're considering other treatments for your sarcoma, but to reduce chances for metastases, you might consider talking to your Oncologist about Votrient(Pazopanib). It is an oral biologic in pill form taken once a day. It targets tumor blood supply to restrict or reduce tumor size and occurrence. Best wishes for success in your treatment.

@ctflyr Hi, what a great idea! My oncologist who had 10+years of research prior to clinical work, whom I trust to have the knowledge (I hope!) of current effective treatments probably has heard of Votrient, I will check. Months ago he had 6 patients with LMS). My daughter is a doctor (a pediatrician!) who's been involved in every exam/consulting, along with my wife. She's been quite an emotionally stabilizing influence on my wife and me. Our oldest 8 years ago when he passed from colon cancer at 49 she was amazing how she handled the situation as he died in the hospital (sepsis).
I live in a major metro area, not Houston or Rochester, Mn. to access treatment. I know there are satellite clinics from those very reputable, especially for cancer treatment centers. Were there any symptoms with Votrient?
I'll certainly mention Votrient (Pazopanib) next week on a phone visit from the oncologist...we do that more now. Chemo was not started as he said it's not good to have a current infection, since it recurs so frequently and the treatment causes lowering the resistance of the body. Last week I had my third CTscan revealing no growths in my lungs (where some nodes were found in sept.) and doubled in size by december. I have no idea what this has on my near future, but I'm a little happier. Thanks so much for your comments...caring shared with me nd others on this blog.

@debschmalbach

Wow, what a great story!. My story is in its infancy compared. I've had LMS for 14 months now. I'm 78, and have had radiation (April, '25 and surgery, '25). Recently elected not to have chemo due to ongoing psedonomous (sp). Just had my second 3 month check with no growing of the nodes since Dec.'s CTs (where nodes has doubled in growth since Sept). I'm stage 4 with very few symptoms due to my sarcoma. My current symptoms, nausea, sweats, chills/fevers, and burning during urination, all of which sometimes recurs. I have a stent in my left ureter where the pseu.....is colonized now and recurs (6 times in 7 months. The surgery got most of the LMS. A little was left behind attached to a nerve. The the tumor (3"X3"X2" was "solid as a rock" and attached to a nerve ending. This has resulted in total numbness from my hip to just above the ankle. My left foot is unaffected and allows me to use a walker, working on using a cane. The PT I've rceived has been awesome, ridding most of my pain. I've been on 3k mg a day of Tylonel and some oxycodone (reduced from 8 times to 4, at most). Tylonel really helps, oxycodone not so much.

Good luck!

@chuckeg you have had quite the journey. I certainly wish you luck and a good medical team. It is excellent that the tumors are not growing that is truly something to celebrate. My tumors are to many and to spread out for radiation so they want to go at it more systemically. I still waiting for a solid treatment plan so I can decide what direction I want to take. Wishing you shrinking tumors:)

@chuckeg you have had quite the journey. I certainly wish you luck and a good medical team. It is excellent that the tumors are not growing that is truly something to celebrate. My tumors are to many and to spread out for radiation so they want to go at it more systemically. I still waiting for a solid treatment plan so I can decide what direction I want to take. Wishing you shrinking tumors:)

@debschmalbach

Hey, thank you very much. I sure hope you get a plan soon. It'll give you more confidence in the system and lower any anxiety/doubts in the future. I've been lucky so far, as it was caught early...late in 2024, but it was large (2"X3"X3") and has a history of growing quickly. We'll see.

Thank you. The entire plan has just been constantly changing. I am now hoping to get my tx here in NM but won’t know for sure till Friday. I have heard good things about Colorado. I hope your tx was successful