1. < Sarcoma

Leiomyosarcoma: What can I expect now?

Posted by kkhersh @kkhersh, Oct 10, 2022

Diagnosed with Leiomyosarcoma back in August 2021. had surgery to remove mass in upper right groin that same month. July 29th second round of CT scans showed nodules on Right upper lung - had surgery to remove those on Sept 15.
What can I expect now ? - meeting with Medical oncologist next week .

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designer22 | @designer22 | Nov 27, 2022
In reply to @hopeful33250 "I so appreciate your updates, @designer22. I'm glad to hear that fatigue is the only side..." + (show)
@hopeful33250

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?

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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.

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designer22 | @designer22 | Nov 27, 2022
In reply to @stephanie27 "Wow! You can do it. I'll be praying! Will you get scans along the way? How..." + (show)
@stephanie27

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

Jump to this post

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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2022
In reply to @designer22 "I am just starting chemo – gemcitabine and docetaxel. I had gemcitabine last week and have..." + (show)
@designer22

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.

Jump to this post

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?

REPLY
1 reply
stephanie27 | @stephanie27 | Nov 27, 2022

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

REPLY
1 reply
designer22 | @designer22 | Nov 27, 2022
In reply to @hopeful33250 "I'm glad that you are feeling better, @designer22 . I hope that you have a good..." + (show)
@hopeful33250

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?

Jump to this post

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.

REPLY
1 reply
designer22 | @designer22 | Nov 27, 2022
In reply to @stephanie27 "Hi! Does anyone have any updates on how they are doing now after diagnosis and surgery?..." + (show)
@stephanie27

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.

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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.

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stephanie27 | @stephanie27 | Nov 26, 2022

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.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 26, 2022
In reply to @designer22 "Yes, I will be sure too. The more info we can share may help another." + (show)
@designer22

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

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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.

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designer22 | @designer22 | Oct 25, 2022
In reply to @hopeful33250 "I'm glad that you are feeling better, @designer22 . I hope that you have a good..." + (show)
@hopeful33250

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?

Jump to this post

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

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 25, 2022
In reply to @designer22 "I was very uncomfortable. It was 9" attached from pelvic wall to pelvic wall. 5-hour surgery..." + (show)
@designer22

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.

Jump to this post

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?

REPLY
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