Leiomyosarcoma: What can I expect now?

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.

You are so right, @designer22! Connect is here to support, encourage and thereby to learn from each other. I so appreciate you participating here and sharing as you are comfortable doing so. I look forward to hearing from you again.

Yes, I will be sure too. The more info we can share may help another.

I'm glad that you are feeling better, @designer22 . I hope that you have a good report from your scans. Will you post an update as it is convenient?

I was very uncomfortable. It was 9" attached from pelvic wall to pelvic wall. 5-hour surgery to remove & I needed 5 units of blood. It was becoming an emergency with my bowel & bladder. My main symptom was nerve pain which I thought was piriformis syndrome and was trying to treat. After going to physical therapy I started fainty spotting so I went to my doctor who found this. I know that it's leiomyosarcoma and have CT scans tomorrow. I feel well now. Thanks for your reply.

Thank you so much !

Hello @queensmom and welcome to Mayo Connect. I'm sorry to hear that you are dealing with neuroendocrine carcinoid cancer (NET). You asked about my treatment, as there was no lymph node involvement and no current evidence of metastasis, I only had surgery but no other treatment.

As NETs is a rare disorder, I highly recommend that you see a NET specialist for treatment. You can find a list of specialists if you go to the Carcinoid Cancer Foundation website. Here is the website for that organization:
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
How are you feeling since your surgery? What has your doctor suggested as a follow up?

Hello @designer22 and welcome to Mayo Connect. You mentioned that you had a 9" mass removed. You must have been very uncomfortable prior to that surgery. I hope that your upcoming scans give you good results.

How are you feeling now?

Has the biopsy of the mass shown what type of tumor and/or mass it is?