Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

Trip to NYC

Hi everyone,

I am new on here as I was diagnosed in October with Synovial Cell Sarcoma, stage 4. The main tumor is in my left thigh with metastatic disease in both lungs as well as on my L1 Vertebrae and femur. Anyhow, I have been through 4 chemo cycles using the MAI treatment and the cancer in my lungs (according to my last CT scan last week) have cleared up for the most part. Tomorrow I am meeting with a surgeon here in Northern Virginia to talk about possible surgery to my thigh to remove as much as they can of what is there (thinking it is tumor and dead tissue). After that discussion, I am traveling up to NYC for a meeting on Friday with an oncologist named Dr. Mark Dickson who works at Sloan as well as a surgeon from sloan named Dr. Sam Yoon for second opinions. I was wondering if any of you have had any experience with either of these doctors and would welcome all opinions. Like I said, this is all pretty new to me and we have no idea if this is the right route to go since all we have to go on iare the doctors opinions. I have not researched any of this on the internet yet, because I am not ready to see or hear about statistics regarding the Sarcoma and probably won't at this point. Anyhow, thanks in advance for any help you all can give. :) Sharon

i have not used these doctors. my surgeon at sloan is Sam Singer. my oncologist is Sandra D'angelo. i hope this helps

I do not have any experience with these Dr's but I would love to talk to you about the AIM treatment. I was just informed two days ago that this is the suggested treatment for me. I am very very leery with such low statistics. I did look them up, in trying to make my decision if I want to endure this type of treatment. I currently have tumors in my lungs only as far as I know. I was misdiagnosed for two years and was treated for another type of cancer. :( I had my tumor in my thigh removed already. My tumors in my lungs are large. Can we connect somehow and talk and share? Blessings, Kim Drew

i have never heard of the aim treatment. i was first diagnosed in 1993. i only had surgery. it came 3 years ago in the exact same spot. my left groin. since then i have had 3 surgeries, radiation and chemo. my last surgery was this past october.

My bf was just diagnosed w SS w metastasis to his lungs and spine as well. oddly enough, we went for a second opinion at MSKCC and saw Dr Dickson! Please let me know how your meeting w him went. I’m interested to see how you liked him. So happy to hear the good news about the positive effects of chemo on you. My bf goes for his third round of hi dose ifosfamide next week. I pray we have similar results.

Only good things, Sage

Sharon , I urge you to get this book, ‘Never Fear Cancer Again’ by Raymond Francis M.Sc.
The first two chapters are hard to get through. But once you get to the third-you will feel hopeful and happy! I can assure you. In the beginning I felt hopeless and desperate. I relayed on the Dr’s to save my bf’s life. Then I realized he had to put the work in too! This was HIS life. He couldn’t afford to take this lying down! You need to take charge. It’s so much more comforting to know that we do have some control over this and that Drs are very useful but they are not G-D! I wish you strength and knowledge.

Btw-which chemotherapy are you currently taking?