Synovial Sarcoma - Online Support Group

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


How did the surgery go? Are you still recovering?


All is as well as can be expected. They surgeons where not able to save any of my left lung. I knew going in that it was a 50/50 chance. Surgery was Thursday 5/7 and I was released the following Thursday, 5/14. Still dealing with the pain which is to be expected (I just don't like it) I was able to make it around the neighborhood last night at a snail's pace without feeling like I was about to pass out. I'll continue to push myself. I do not have supplemental oxygen and want to keep it that way. As of the date of the surgery I"m NED. My first follow up will be within a month.


Jim, I'm sorry to hear your entire left lung had to be removed. I'm hopeful you will stay in the NED state and I sure hope the pain goes away soon. Stay strong and definitely try to get around the block as often as possible, even if it is at a snails pace! I just found out today that I didn't get accepted into the trial as my tumor expressed less than 10% NYESO-1. I had a CT and MRI last week and found a new 5.5cm tumor on my diaphragm that wasn't there on 4/1 and 3 other new spots in the Pleural space of my left lung. My oncologist wants me to start Chemo asap and then on to more radiation and surgery. :(


I hope you feel better soon, Jim. Take good care of yourself, please. Sending you good wishes for a swift recovery!


Jim, it's great to read you're NED and in no need of an oxygen tank :-) Hopefully, the beast won't come back for another 15 years at least! Take it one step at a time...

Nschaper87, sorry about the setback. It sounds like your oncologist is motivated though since surgery is part of the plan. Good luck and keep us posted!


Just a brief update to let everyone know all is well. Even driving at this point. Big weekend ahead. My youngest graduates from high school on Saturday. Ordered wheelchairs for me and my 84 year old mother - it was the only way of getting her in one for the big event. Over 1000 kids in the graduation. The house will be filled with family and friends.

Nschaple87 - Sorry to hear that you'll need surgery and chemo. I'm personally not a fan of radiation to the lungs due to the fibrosis. Keep the fight going strong and my thoughts are with you!


Congrats to your youngest daughter, I know you are a very proud father. Nice to hear your surgery went well and you are recouping well. Bless you and your family!


Sounds like an exciting week-end Jim! I am sure your mom will like your company even better now ;-)


It was a great weekend with family and friends - much needed to get me out of the funk that I was in.Just needed to get out of my own way and enjoy myself. Something that I need to do more of. Abby never appeared happier than in the photos that immediately followed the ceremony. She was simply beaming.


I'm so glad you had a good weekend, Jim. :)




Just saw that NIH is suspending some of their trials because of fungal contamination:


Jim, I hope you were not exposed!


I think I'm ok unless the issue has been going on for some time. I have not been contacted. I'm scheduled for my surgical and immunotherapy check up next Tuesday and Wednesday. Keep you fingers crossed.


Crossing Fingers!


A little late in updating this. Last week I had a checkup at NIH. My blood clot in my lung has cleared and I remain NED! The next checkup is scheduled for March. Walking and even riding my bike again.


Yoohoo! Just the kind of news I like best :-)


Well - it ha been 1 year and 3 months since my lung was removed. I began losing my voice about 3 weeks ago and completely lost it after a week. long story short It’s back. I have 7 tumors surrounding my aorta, The largest is 3 cm and almost completely encasing my aortic arch. This news is 6 days old and waiting to hear from NIH and my team here in Chicago. Waiting is driving me crazy. Surgery is probably not an option here in Chicago according to my oncologist. This coming Wednesday, we meet to discuss options. My CT scans were sent to my surgeon at NIH and I’m waiting to hear back from them as well. Keep my in your prayers - looking for a miracle.


I have been following your story for some time. I’m sorry to hear about the latest update. It’s a fear we all think about daily.

You are in my prayers and I hope a good option is presented to you quickly. I’m in St. Louis, not far from Chicago and know my oncologist has worked with several SS patients who were unable to have surgery until he (Dr. Van Tine) was able to shrink the tumors first.

I know you have been a part of a modified T cell therapy trial in the past. My hope is that the adaptimmune clinical will be perfected and the nyeso/hla markers currently required, will be removed.


Sorry about the bad news. I was hoping you were still in remission. I hope NIH is able to provide a good option and quickly. The location sounds bad :worried:


So far nothing that is out of phase 1 trials and that are extremely experimental. Too bad I cannot upload them here. Here is the link to the study that I’m interested in: https://clinicaltrials.gov/ct2/show/record/NCT02423057?term=15-c-0116&rank=1

So the tumor cannot be surgically removed here in Chicago and NIH has also refused due to the size and location. It is basically growing into where the removed lung connected to the heart - in the root of the lung that they removed. I was given 3 to 6 months. 4 to 8 moths with a tier 2 chemo treatment (50/50 odds) and 9 to 12 months (25% of patients) They are aslo not fans of alternative treatments.

So I’m torn. Do I make myself sick (chemo) before having to be fed via a feeding tube or live life until that time?

One option places my health in the hands of God and nature (holistic approaches) and kind of feels like I’ve given up - a form of sucide.

Chemo the other option he told me would fail within a year.

Looking for an answer