Synovial Sarcoma - Online Support Group

Recurrence..... tumors in my right lung/plural area


Hi Everyone,

It’s been awhile since I posted in here, I was diagnosed with Pulmonary SS in my right lung in march, I have a lobectomy with clear margins to remove my upper right lobe

Was NED until late August, multiple nodules were found in my right lung and plural lining. I started High dise Ifosfamide in early September and so far I feel better now then I did before I started chemo

I start my 2nd round in a few days, and the overall hope is to get enough shrinkage so mets can be removed, I know my overall prognosis is not good, but right now dying is not an option for me, I am 33 and married with 3 kids

I became a born again christian in 2014 and I am so glad because I can’t do this without GOD. I believe he can and will lead me to NED, and I have reason to think other wise

My only real question, is please tell me someone has had really good results with IFOS…?

My sarcoma doc is very impressed with well my body has responded, but I still have a long way to go


It does happen from time to time that a patient with synovial sarcoma will get a really good response to ifosfamide. Once you stop the drug though, the disease usually comes back so it’s important to look into your future options.


I’m so sorry to hear about the news and I wish you the best!

My girlfriend’s cancer responds quite well to ifos, but it is very hard and taxing on the body. Are you doing radiation as well? They are often paired.

Many doctors are beginning to combine ifos and other drugs to try to increase effectiveness.

I built an online tool to help me discover treatment options and what doctors at top medical centers are doing to treat synovial sarcoma. Let me know if you would like to check it out.


My daughter just finished her 2nd round of high dose Ifosfamide and a preliminary chest x-ray showed her lung tumors have mostly melted away already. Four more rounds to go. She is getting the treatment as an inpatient at MD Anderson. Her doctor there is a sarcoma specialist who recommended this treatment as a way to get the cancer under control so it can be ‘managed’ with less toxic options down the road. Prior to this chemo, they were talking about removing her entire right lung.


Yes, I would like to see the on-line tool Andrewk has developed. We also had developed a spreadsheet with possible trials, but it turns out my daughter doesn’t have the markers to qualify for most of them.


I oddly feel 100% , but I have only had one round…a lot more to go! where did your G/F’s primary tumor start?


Surgery is still hopefully an option, but I need to show a response, the one thing I do know is that with SS, there is evidence that IFOS can be effective


Primary tumor in her leg almost 7 years ago.


I had same Ifex"Doxu"Mesna from MD Anderson from Dec 20 2015 to March 25 2016, as I had a large SS tumor in my left lung and after 2 round there was melting of tumor but no tissue was seen in occupied area then I continued another 2 rounds and no improvement but only bottom part of lung was with fluid around 600ml, so I decided to remove entire lung in April 7 2016 and went to follow up visit in Sept 2016 and found a small plurral thickening in chest wall and now it has grown so I need to go again for a treatment and I do not think Chemo is a good treatment for SS at lungs but it may depend person to person, heard it worked for young ppl, and I refused radiation also after surgery and came back to normal but I have to see target therapy or surgery to remove tumor and then look for anti -Angeogenisis treatment orally to manage it as chemo and radiation would give 3-4 months relief at cost of USD 50k per round of chemo