Leiomyosarcoma: What can I expect now?

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

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.

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

@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on 3 October. I have been told that there is not any treatment except to keep removing nodules as they appear. I'm curious what your experience has been. I really appreciate your post as I feel like I'm floundering to get answers. Enjoy your day!

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

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

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.

My 44 year old son is on his second round of chemotherapy. He's list his hair. Now battling nausea with Zofran. He had a recurrence of a 5 mm tumor in his right axilla causing swelling, pain and compression of his radial artery causing his right hand to drop. He's much better after 2 rounds of chemotherapy. Hoping for a full recovery. Our oncologist tells us that although it's a rare cancer, 1 to 3 per million, it's very treatable with chemo.