Leiomyosarcoma: What can I expect now?

That sounds like a greatoutcome for you, particularly compared to some of the situations on this site. I'm very encouraged by it but can you confirm that when you started chemo, did you have secondaries in your lungs? anywhere else?
And if I could, do you know the type of chemo you were given and how much did it knock you around?
Many thanks in advance.

Yes and it worked. I had it done three years ago.

Hello - I too have nodules in my lungs but may be starting chemotherapy. I am interestedin whether they tried that for you?

Hi
My secondaries in both lungs have grown and I have anumber of them. They are up to 2cm in size. The PET also showed actdivity on my liver so am having liver biopsy next week.
After that the MO will determine course of acdtion but seems most likely to be chemotherapy.
Cheers
John

Sounds like chemotherapy is indicated, not surgery. That is the plan for my son. He has a new small tumor in his right axilla and a suspicious spot in his left lung. He started chemotherapy 2 weeks ago, another round next week.

So how did it go? What did your PET CT find?

HI Colleen,
Yes it is being monitored by 3 monthly PET scans and CT scans. I acutally had them today so tomorrow is the big reveal. I guess the medical oncologist will let me know in tomorrow morning when I see him. Very nervous at the moment!
Cheers
John

Thank you, Susan. I will look you up on Facebook . I spoke with the doctor today. He is in agreement there is no harm in seeking another opinion while I maintain with them there (seeking meds they may not have, other treatment options, surgeon's who may be willing to attempt, clinical trials, or just confirmation that all that can be done is being done). I was not thrilled the surgeon I spoke to was not wanting to do surgery to get it all out. Dr "Sam" today said the surgeon told him he just couldn't see stressing my body when he was pretty positive he couldn't get it all out. Dr "Sam" put it an order for a second opinion consult for Uof M(Michigan), so if I don't hear from them within a week, call for an appointment. I can get my teeth cleaned, my back fusion x-rayed checked, while having radiation. My last radiation treatment is March 20th. Dr Sam will see me back on the office the following Monday. Plans for starting chemo start then. I feel a slight amount of skin discomfort; applying the aquaphor and colloidal silver cream once or twice a day. Little twinge in my abdomen and back. Could be scar tissue moving, nerves regenerating, they said. My last spinal fusion was this past June; I know nerves take a long time to regenerate. As for the person who said my questions do not seem to have been answered...true. it is hard, I am seeing, to compare cases with a type of cancer that occurs in 1 out of 100,000 people. Any comparisons can help with the battle ahead of me ,however.

@johnelph, welcome. For the spread to your lungs, is it being monitored - active surveillance - or will you have to have additional treatment?

He has only had one 3 day round of chemo so far. Doing fine, no nausea, just a little burning with urination which has resolved. Round 2 next week.