Leiomyosarcoma: What can I expect now?

Hi, my cousin was diagnosed with Leiomyosarcoma of the inferior ivc Dec 24.2024. Chemo began on Christmas Day. She rcvd chemotherapy for 1 day and was told she is highly allergic to Heparin. We were then told she now has HIT. They've given her 2 different types of blood thinners that didn't work. As of Sunday she was put on a 3rd type of blood thinner. They've called a meeting with us and said the mass has gotten bigger. It now has reached her liver. She's on continuous dialysis due how the HIT messed with her kidneys. They pretty much told us there nothing else they can do and asked our preference on DNR, etc .
I however believe in miracles. Once this new medication gets into her system and the body gets rid of the clots, she can get a liver transplant while they remove the tumor ( which is located beside the liver). She can remain on dialysis for life if needed. She's to young for ending life. She's an outstanding officer of the law 20+ years service and has a animal rescue with over 50 animals. Jesus fix this💕

I was 65 when I had my first surgery. I have stage 4 of vea cava vein Leamyascacoma. I’m now 71. Mad it five years.. you Will too. They treated me like I was an old lady until my daughter gave them a lecture about my work history and strength. They didn’t even want to do surgery. Of coars after surgery even with margins I had met going to my liver and lungs. You will make it for years.

I also have leiomyosarcoma, one year survivor. I am on two support lists on Facebook. The moderators either have leiomyosarcoma or a loved one does. The lists are extremely helpful to see how others are treated, survival, advice, etc. Most state having direct access to a sarcoma specialist is essential. The center where I am treated, Karmanos in Flint, Mi. Has a social worker who had reached out and spoken to me two or three times. Both about the emotional and psychological effects of having cancer and the burden and fear of/of your spouse and caregivers, your own anxiety, etc. They also have support groups. I see my own private therapist on video weekly as I have for some years. I am a reader and researcher by nature, and I devour every word on the subject. Not everyone wants to do this. As for the inoperable- I had a ovariohystrectomy with appendectomy and removal of most of my momentum last December. They did not get clear margins. I was stage 2b until mets were found in my lungs. That automatically states you at 4. I was terrified and down-hearted until I realized how many have survived and even thrived for years with a stage 4 diagnosis. I was deemed not a candidate for further surgery also. Sometimes the tumors are in places where they can't access, at least while also keeping us alive. I was very sick, sepsis, heart failure, pneumonia, etc after my first chemo and after a lung biopsy. I pulled through and even though I could not move, was hugely bloated with fluid, and had felt I was dying one of the days during this ordeal- when the team came in and one or two suggested hospice. I became very angry and said I want to fight. I will recover and we will try something else. They had given me 2-10 weeks. I had my great pt come out. He got me up, standing, walking, I had to do the stretching and walking homework. Back and forth in this little house. I began losing fluid and weight. My oncologist was amazed and delighted at my follow up. I had genetic testing I had been pushing for. They started me on liposomal doxyrubicin, which I did tolerate. Skipping over some stuff...I ended up with radiation to both lungs, just finished yesterday. Off the chemo, taking an oral med twice a day I just started Saturday. I am of course anxious, but hopeful. At 65, a few more years would be a gift. There are 20 year, 10 year, 5 year survivors in the groups!! Just remember- not knowing if you are religious- statistics are not the word if God; doctors are not God. Use them as a guide; and fight for yourself like hell. I hope this helps. Jill front Michigan

@arcollett, that's fantastic. I'm glad they have cardio-oncology where you receive cancer care. How did the appointment go? What did you learn?

I now have a follow-up appointment with a cardio-oncologist at O’Neal Cancer Center, where I am currently receiving chemotherapy.

I was diagnosed with Stage 1b uLMS after a hysterectomy I had on Oct 29th. CT scans on Nov 15 showed I had a tumor between my bladder and bowel that wasn't present during surgery, making me stage 3. Some small nodules were also found in the lungs but too small to biopsy - too early to tell. Started chemo Nov 25th of gen/tax (gen only). On Dec 2 had the combo but severe reaction to tax - heart and lower back pounding in the rhythm of heartbeat with pain. I was told reactions happen with tax but not within 2 minutes of starting it. They had to stop for 30 min, give more steroids and Benedryl, and restart slowly. Has chemo with combo today and did fine. But I am haveing problems with my heart after the first combo - seems I have a left branch bundle block (LBBB) that comes and goes (have a follow-up with cardio in Feb). The LBBB was discovered when I went to ER thinking I was having a heart attack. Beginning to have incontinence issues with my bladder. My cancer team does not usually go back in for another surgery so soon, but will discuss more with my gyn/onc on Dec 26. I have to be off chemo for at least 3 weeks before they can do surgery. I have 3 CT scans scheduled for Jan 7th to obtain more info. I am getting treatment at the O'Neal Comprehensive Cancer Center in Birmingham, AL. I have a referral for a second opinion to a sarcoma doctor here but appt has not been established yet. I'm 69, and have a history of fibrous tissue in my uterus, been on Mimvey low does since menopause at 52, first D&C mid 50s, and was diagnosed last year with a fibroid and more fibrous tissue, had a D&C, but bleeding continued, put on progesterone as well. I'm 69 years old.

Please tell me the leiomyosarcoma support group names. I joined one but so far no post.