Diagnosed with sarcoma? Let's share

I have leiomyosarcoma. I have a mass on my liver. The cancer has spread. I am in my 5th day after the chemo infusion. Pretty miserable. I don't know that I will continue the chemo. I am in my mid 80's. Trying to be positive & praying.

Hello everyone. I am Khushi and have been operated for borderline malignant Phyllodes in the left breast in 2019 (without radiation ). It reoccurred in the same area ( local recurrence ) in feb 2023 and this time it was categorised as chondrosarcoma and osteosarcoma. We again did radical mastectomy and got the entire left breast removed , this time followed by 28 session of. Radiotherapy. The current PET scans of sept 2023 are showing spread in the lungs. Wanted guidance from all of you regarding personal experiences or recommendations of the line of treatment that we should opt as this is a third recurrence. What is the latest line of treatment adopted for such a disease and how can we tackle this in the best possible way. Lots of love and strength to all going through this.

Hello @nanee1

I'm sorry to hear that you are feeling so bad. I'm assuming that you are having side effects from the chemo. Is that correct?

If that is the case, you might consider talking to your doctor's office to see if there are medications available to help with the side effects.

What are the worst symptoms you are having right now?

Welcome, @khushi80. I see that @johnsoncs1 has also posted about a cystosarcoma Phyllodes tumor in breast. You may wish to also join this related discussion:
- Anyone diagnosed with Phyllodes tumor?
https://connect.mayoclinic.org/discussion/phyllodes/

I'm sorry to hear about the repeated recurrences and now spread to the lungs. What treatment options are available to you?

Actually in my country they are suggesting for doxorubicin + ifosfomide chemotherapy but they are not sure if it will work or no. Some are also suggesting to do genetic testing for targeted therapy.

I have pain & am sleeping most of the time. Dr prescribed pain meds & a special mouthwash for the burning in my mouth. Things are easing a little.
Thanks for your responce.

So sorry to hear you are not feeling well after the chemo. I also have leiomyosarcoma which is in my liver as well as bone and muscles and am on chemotherapy. I am 72. I agree with the person who suggested you discuss your symptoms with your doctor or infusion nurse. There are lots of things they can do to offset side effects including other medications or adjusting the dose.

Each of us must decide for ourselves along with our health care team and support system (family and friends) how to proceed. I would just encourage you to take some time to explore all the alternatives before deciding to quit treatment. I also believe in the power of prayer and have enlisted all my friends who are well connected with God to intervene on my behalf!

God Bless,

Yes, I agree that prayer & a positive attitude are so important. Thank you so much for your imput.

Wise choice. Live each day to the fullest. Be blessed.

I am new to this discussion thread. I was recently diagnosed with NUTM1 Rearranged colorectal sarcoma. According to my doctors, I am the 7th case with this particular cancer. I had a tumor and a section of my colon removed in August, along with several lymph nodes. It took them over a month to finally diagnose. My PET and MRI came back with no noticeable cancer cells which I am considering good news. At this time, there isn't treatment options, other than to remove any cancer that may show up later. I will have to have repeat scans every two months. I will keep praying that future scans are clear.