Would like to connect with others with metastatic liposarcoma

Which protocols were applied?”

Hello I was diagnosed with Leiomyosarcoma (metastatic) in spring of 2024 and started treatment of the below in mid-July. I feel the regiment below did a great job in reducing size and was schedule for 8 treatments scheduled every 3 weeks. I was only able to complete 6 treatments as the Doxorubicin is very harsh nicknamed the (RED DEVIL). I finished my 8 week cycle with trabectedin (YONDELIS). This a maintenance treatment I am currently on. I took a 9 month break after the 8 week treatment plan. I started the maintenance plan back in 10/2025 and still on that plan. Isaw huge reduction in size of tumors during first treatment. Now is more stopping growth.

dexAMETHasone (DECADRON)

(HCC)
Doxorubicin (ADRIAMYCIN)
(HCC)
fosaprepitant (EMEND) injection 150

Leiomyosarcoma (HCC)
heparin, porcine (PF)
palonosetron (ALOXI)
trabectedin (YONDELIS) or

@debschmalbach, in addition to the connection made with @ertugrul and @fwaynes, who posted about metastatic liposarcoma, I'm tagging fellow lipsarcoma members to join the discussion @zimm @sids @amelieonsoti @reyaz1997 @ctflyr @alyce2120 @sauer01

@debschmalbach, can you share more about your story?

@fwaynes
Thank you. I hope your success continues. That is good news. I am really afraid of doxorubicin. I do not want to be so sick I cannot do anything since the chances of it helping with the liposarcoma is something live 30%. Do you mind sharing more about what you experienced from the doxorubicin?

@ertugrul
At this point the only thing offered to me was the doxorubicin because there are quite a few tumors and they wanted something systemic. I do have an appointment at MDAnderson to see what they would offer in treatment. That is scheduled for next week.

@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
Hello Debi.....you are indeed a miracle!!"And thankfully, have been free of cancer for many years!! Hopefully your care team has been helpful and supportive in your present journey. Please go to MD Anderson with "eyes wide open". In our experience, they were methodical, but impersonal, and quickly rendered a decision for chemo, without hesitation and any real attempt to know the patient. One meeting and that's that! The Oncologist even took a personal call in front of us during our consultation. A very impersonal experience for us. I hope yours is better, but thought you should know what ours was like. My Wife has managed to avoid chemo, and we pray that continues. Wishing you better days ahead, and all the support you need!! 🌞💪♥️

Thank you very much. I appreciate the heads up. That is disheartening, though. I will follow through with them to see what they suggest. Bear hat. I hope your wife can continue to avoid chemo. It takes such a total on the body. Wishing you the best of luck.