Synovial Sarcoma - Online Support Group

Has anyone been through the genetically modified T-Cell trial?


I've met the blood and tumor qualifications and have an appointment at NIH on May 15th for additional testing to qualify for "A Pilot Study of Genetically Engineered NY-ESO-1 Specific (c259) T Cells in HLA-A2+ Patients With Synovial Sarcoma."


Has anyone been thru this trial? Or know someone who has? If so, I would love to hear from you about your experiences and the outcome of your treatment. It is very hard to obtain research results online as all the sites require passwords/subscriptions to these medical sites.

All information is welcome.




I wish I could be of help, but I don't know anything about the trials, just know that I will be praying that you will qualify and it will miraculously work for you. Elodie knows a lot about trials, so hopefully she can give you advice.


I’m a patient at Moffitt in Tampa and this trial was discussed. My onc told me the results haven’t been favorable for synovial patients. He was excited about it as was I. He sent 4 patients and all were clear for 6 months (longest) but had reoccurrences. As we all know, everyone is different. The treatment sounds exciting & glad were moving in the right direction. Good luck & stay strong!


Thank u Lynda! You are a great person, there are not many people that go above and beyond like you to show your support. Thank you for the prayers, you are in mine as well.


Thanks Aperez. I have nothing to lose - or at least that is my opinion at this point in time before I meet and discuss the trial in two weeks. 6 months is 6 months the way I look at it. I'll let everyone know what to expect from this trial as I go through it if accepted on the 15th.


I know what you mean Jim! Good luck & yes pls keep us posted.


Off I go to NIH for the final testing to see if I qualify and meet my new doctors - full of hope. I have not felt this good in almost two years. It is great being off Votrient!


Good luck. All the best, Trish


Best of luck to you JimK. Praying all goes well.


Good luck Jim!


Hi Jim,

My son & I are currently at NIH being treated by Dr. Merchant (not on that particular trial). She is wonderful!

I hope things go well! If you have any questions that we can help you with - just say the word.


Thank you "mylhunt" ! We just got back yesterday evening and I fly back out on Monday afternoon for my Apheresis (collection of t cells) Tuesday morning. It looks like I'll be receiving the treatment within a month. My Attending is Dr. Klebanoff. The staff is great!

What trial is your son on? And is he currently an inpatient? Hope all is going well. I never met so many positive people in one place. If you are around on Tuesday afternoon maybe we can connect for a cup of coffee.



Thanks everyone for the well wishes. I'll try to keep this up to date as things progress. Attached are some photos from my 1st day at NIH. It included Blood tests, urinalysis, EKG, Xrays, pulmonary testing, counseling services and meeting with the doctors and fellows.

I'll be officially accepted into the trial next week, although I think I'm accepted into the trial because the called today to have me come out next week for the harvesting of my blood cells.

The Chicago to Bethesda trip will become second nature after awhile.


Hi Jim,

My son had metastisis to his lungs at the 2 year mark, so he had a double thoracotomy last year at NIH under Dr. Schrump. Then they put him on a vaccine trial #11-C-0111 (Adjuvant Allogeneic Tumor Cell Vaccine with Metronomic Oral Cyclophosphamide & Celecoxib in Patients Undergoing Resection of Sarcomas, Melanomas, Germ Cell Tumors, or Epithelial Malignancies Metastatic to Lungs, Pleura, or Mediastinum. He started that trial last summer & it ended in January of this year & his scans were all clear in February of this year.

Unfortunately in April he started having pain & after having new scans, they found 3 tumors in his left lung, so he is currently under a different protocol & is receiving his first round of chemo at NIH in hopes of shrinking them to be followed by surgery. He is scheduled to be leaving by Monday, so not sure if we will be around when you are there on Tuesday - with that said, it sounds like you will be returning, so I'm sure we will get another opportunity to meet!

NIH is a wonderful place to be & the staff has really given us exceptional care! They already have another trial that they are looking at putting my son on when he has recovered from surgery - not the same one you will be on, but here's hoping that they will prove to be most successful!

So today is a good day & hopefully one step closer to a cure!

Stay in touch! We live locally, so if we can be of any assistance, please feel free to ask!


I was back at NIH yesterday, 5/20, for my aphaeresis.

This is a 4 hour blood draw that harvests white blood cells. It was a painless procedure that is very boring. Be sure to take something that you can do with one hand. Blood is drawn from one arm, runs through a centrifuge and returned to the other arm. My left arm could not be moved, while I had use of my right hand and could bend my elbow.

Music and TV will get you through the hours.

I will soon know if I qualify for this trial. Fingers crossed.


It sounds like the treatment lasted about 10 months - not bad. Living with this comes a few steps at a time. Surgery maybe the best option. After my two lung surgeries (chemo in-between) I was clear for 4 years until it returned to my lungs and lymph nodes. Votrient added another 21 months. Keep experimenting till you find what works. Hopefully we can connect at NIH sometime soon.



The people are incredible!

Arrived at NIH on Monday the 16th. I started out Monday with blood panels and an EKG - Nothing exciting. I wondered the halls to review the artwork which is fairly impressive.

Tuesday contained CT scans of my lungs and an MRI of my brain. Good new, I have one. They allowed me to photograph the screen which I shared with my wife via text: "See there it is in Black & White - I do have a brain once you get past my thick skull". Thankfully it did not spread to my brain.

I was off Votrient for 8 weeks. I was afraid that the 5 tumors would have exploded in size. To my surprise, they have not. The largest is still only 2,3 x 1.4 cm.

Wednesday they inserted my ports.

Thursday started at 7AM with fluids to prep my kidneys and bladder. I was on these fluids for 48 hours.

I got my first does of cyclophosphamide, an hour-long drip around 5pm. The second does was delivered on Friday. This was some heavy hitting chemo, and can do damage which is reason for the fluids. You have to void your bladder every two hours to avoid side effects. Also experienced heavy nausea during the treatment and for about 4 hours afterward. You'll rebound quickly once this is out of your system.

I'll be on a half-hour drip of fludarabine until next Thursday.(5 days total) By that time my immune system should be suppressed and ready for my infusion of new, genetically modified T-cells.

It's Sunday and the building is quiet. I logged a mile walk to the metra station. My wife arrives today at 3 and I want take her into town for a great meal.



Great to know that you are in the trial Jim and staying strong. Praying!


Thanks for the details! Once you get the T-cell infusion, can you go back home right away?


My last day of chemo is tomorrow, Wednesday. My immune system is still strong enough so my wife and I are going out to eat and on a night-time tour of DC this evening. I get the new cells on Thursday, followed by days of infusions to assist in the replication of cells in my body. I have to stay in my room until my white blood count hits 1000, at which time I'll be able to go home.

I'll post more when I have the details.