Leiomyosarcoma: What can I expect now?

I don't know this answer, but I'll say hi. My mom was recently diagnosed with leiomyosarcoma, and we go to the sarcoma specialist this upcoming Tuesday to get our "next steps". It's the first time we've seen any form of oncologist, so I'm a bit anxious. I'm on here to get any information I can along the way. I'm so sorry to hear about the spread to the lungs. Hugs.

Welcome, @lanewright. You're so right that getting answers about what to expect at the end are hard to find online.

I moved your post about leiomyosarcoma to this existing discussion in the Cancer group:
- Leiomyosarcoma: What can I expect now? https://connect.mayoclinic.org/discussion/leiomyosarcoma-1/

I did this so you can read previous posts and connect more easily with members like @kkhersh @luna6922 @marys1956 @designer22 @stephanie27 @designer22, some of whom, like you have leiomyosarcoma that has spread into the lungs.

Knowing what to expect can help you prepare for the best ending possible. While not specifically about sarcoma, I think you might appreciate this related discussion in the Lung Cancer group too:
- Ashamed: I think about (and plan for) dying. Do you? https://connect.mayoclinic.org/discussion/ashamed/

So you see? You've come to the right place where people talk about the tough stuff openly.

Lane, can you share a bit more about yourself? Is this a recent diagnosis for you or a recurrence? What treatment options are available for you?

I need to know what to expect to experience when leiomyosarcoma has already moved into lungs. I realize survival is not likely but what will I experience? A painful drawn out event? A quick end? Loss of body control? Etc. I am finding nothing online that answer those questions

Yes, scans after 6 rounds of treatment since I don't currently have signs of the disease spreading. Hopefully, the chemo will take care of it but then will have to monitor it.

No scans until after treatment. The scans don't currently show that there's been a spread so they will start to monitor after chemo.

I so appreciate your updates, @designer22. I'm glad to hear that fatigue is the only side effect you are experiencing right now. After the two drugs are administered this week, I'd like to hear how you are doing.

Will scans be repeated at the end of the six rounds, or will there be scans before then?

Wow! You can do it. I'll be praying! Will you get scans along the way? How does that work?

I am just starting chemo – gemcitabine and docetaxel. I had gemcitabine last week and have been primarily tired. This week I'll get both drugs. The 3rd week I rest and then repeat for a total of 6 rounds.

That sounds like a rough situation and recovery. I am just starting chemo - gemcitabine and docetaxel. I had gemcitabine last week and have been primarily tired. This week I'll get both drugs. Wishing your mom well.

Hi! Does anyone have any updates on how they are doing now after diagnosis and surgery? My mom had surgery about 3 weeks ago and is still in rehab. I'm just here getting as much info as I can to help her. We haven't met with the oncologist yet. I do know they removed the tumor in her abdomen along with her adrenal gland, part of her pancreas, her spleen, and part of her stomach. I also know the tumor had ruptured, so it spit microcells everywhere. That's pretty much all we know right now.