Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

New Member, Hello!

Hello to All,

I was first diagnosed with a Hematoma ( after an MRI ) and was told it was a pulled muscle.The trouble area is my right thigh.They told me it would take a year to heal. I waited a year and it got worse.The tumor grew I left that Doctor, went to another orthopedic Doctor. He took one xray, said it was a tumor and sent me to an Oncology Orthopedic Surgeon. The needle biopsy failed to give a clear diagnosis. The tumor has reached the size of a soccer ball in my thigh. It is 25 cm and wraps around from front to the back of my thigh.It wraps around nerves,muscles etc in the leg. The surgical biopsy was sent to the Mayo Clinic ( Rochester ) The biopsy was done 9/28/15. The reults were sent back 10/20/15. I have a cancer center associated with MD Anderson. The Oncology doctor I am seeing has helped several of my friends with various types of Cancer, all were successful. I feel confidence with the team. They do a conference call with MD anderson about my case. I also have access ( The Clinic ) to the University of Florida sarcoma group. So going in, I feel we have a good team. My Doctor is very personal and explains all questions. So I am scheduled to start treatment, inpatient 4 days. We are going to use Ifosfamide / Doxorubican. I go in four 4 days out 3 weeks the back for 4 days. The cycle will be 3 months then test to seee results to see if we go foward or change. I have nodules in the lungs that light up on the PET scan. I believe the term here on the site is METS. That means it has metastasized to another area?

Thank you for sharing your Chemo experinces. I am grateful to get an idea of what to expect.

I delayed my treatment by accident, taking my Naproxin for for the pain. It is a blood thinner and they had to wait 5 days until that was out of my system, before starting Chemo.

Thanks for letting me ramble. I thank you for this site. I have learned so much from you reading disscussions.

Yes mets mean metastases. Sorry to hear it already spread to your lungs :-(

Ifosfamide and doxorubicin is the conventional first line treatment. Good luck with chemo!

Elodie Espesset said:

Yes mets mean metastases. Sorry to hear it already spread to your lungs :-(

Ifosfamide and doxorubicin is the conventional first line treatment. Good luck with chemo!

Thanks!!! My wife is cooking my favorite meals to prepare for the Chemo in 4 days

Sounds like you are in good hands now, good thing you changed drs.
Good luck with the chemo

Hello there,

I've been reading around this forum some time before joining, and what maked me sign up was basically your case. Why?

Because mine it's really similar to yours! only mine is on my left thigh and it was 22 cm when it was diagnosed, also goes from the front to the back, and inside my pelvis, since mine it's high in the thigh, I hope I make sense since English is not my first language :P. I actually have two primary mass, I have a little mass near my left ovary, and doctors believe they are both connected, but they are not so worried about this one. I also had 5 small mets at this time on lungs.

Anyways, I started my chemo on july, I did six cycles of Ifo/doxo just like you are doing now, at first it was three, then I did a CT and a MRI which showed that I had only one small met left on my left lung! and size in the big one was smaller, but not so much since it's huge this thing. So as the response went well, we went for another three cycles, that I just finished three weeks ago! I didn't have many secondary effects, I went neutropenic only once in the first cycle since they did the highest dose on that one. By the way, I had cycles of 5 days... 3 days doxo and 5 days ifosfamide, and always mesna for uroprotection with the ifo, of curse. Then, two weeks out recovering and I got neulasta, preventive antibiotics and antiemetics for a few days, and back again! just once I had three weeks of recovery because I got a cold.

Now I did a CT and a MRI and I am waiting on the results, but the oncologist already told me that the lung met is still there, so probably I'm going to have surgery on that one, and probably radiotherapy on the big one to try to reduce it more before the big surgery to try to have clear margins. I really hope I can get surgery, because they already told me that it wasn't a sure thing since the first day, but as the thing is becoming smaller, I am getting more chances of having one and they have already talk to me about it, so hopefully this squatter is going out soon >:D

The best thing is always be possitive about it! And believe that chemo will work, that also helps and maaaybe some placebo effect may show even better results. I have some trouble walking, I had to use a crutch for a while after they did the biopsy, but I started walking without it like two months ago, and I walk better after doing the chemo. Before the chemo the pain I had while walking had been increasing and at night it was hard to sleep due to it. Luckily, I'm doing better now.

See you around! :P

Thank You,

Welcome!!! Thanks for your imput it is very comforting to find another with the big tumor. I have been told we are going to radiation while doing the Chemo next week. This well be my 3rd round of Chemo , I too recieve Mesna. Yes my movement was impaired by the pain of the tumor pressing some nerve. I now can move without pain in that area. Yes my tumor has my thigh at 82.5 cm ( outer Diameter ) . My pain is maintained very comfortable @ 75mg Fentanyl . This is a 72 hour patch. Thank you very much for the response. I am meeting with Radiation Doctor this week to discuss radiation of the tumor while we finish Chemo. The Medical Facility I go to is in with MD Anderson. I have very many small nodules scattered in the lungs. They have not done any diagnostic checks yet to see how far the Chemo has worked yet. The last session was only my second. After my third session I will do PET, CAT ,MRI. They are mentioning a possibility of going to Houston to do a Proton Therapy Proceedure , Here is a link I hope will work for you. It is a process done in one machine that Identifies targets and irradicates cancer cells in the lung. This harms no surrounding tissue and is not invasive. CLICK This Link

Then go to the left menu and select proton therapy. I will keep you posted. Again Thank you for sharing with me it has been a wonderful comfort. If I may ask can I pray for you?

I used before Enatyum for the pain, but I don't have any pain now, so I am not taking anything right now. I just have some trouble walking, and when I am sitting for a long time and then I go up it takes a while to walk without trouble. Nice that you can move around without pain!

I am from Spain, and I don't have the money to go to United States, so I believe Proton Therapy, since we don't have it on our country yet, it is not an option. I could go anywhere else in Europe, but I trust my actual doctor team, I am being treated at one of the best sarcoma centers in Spain, but I am going to look up to cyberknife if it's an option I could take in a future if I need it, but that would mean going into private doctors, but at least that can be done here in Spain. As for now, I will just see what my doctors can offer me.

Doing the radiotherapy while you are doing the chemo seems a really intelligent option! I don't know why my doctors wanted to wait... I guess they were thinking that chemo would reduce more the big tumor and do the surgery before radiotherapy, but seems they changed their opinion :P.

You do can pray for me if you want to, I don't believe in these things, but if you feel like it then you should just do it as you please. :P


Thanks for update will keep you posted on how Radiation / Chemo option goes. Thanks again for allowing me to offer prayer

I believe in it , I hope only the best for you. Thank you Again!!



Greetz Max.

Max said:



Greetz Max.