Synovial Sarcoma - Online Support Group

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


Sorry i did not keep this up to date. The treatment was rough but I made it through. If anyone would like to talk about the treatment I'm more than willing to discuss on the phone 224-■■■■■■■■. That is Monika delivering my new genetically modified t-cells on June 26th. There were 46 Billion cells that were modified with a gene sequence from a mouse that would recognize my tumor cells and attack them.

After the injection, I received 8 doses of IL2 to assist in the acceptance and growth of the new cells - NOT FUN. A blood infection set in and I was not released until July 7th. Recovery was slow at first and than my body just took off and began to heal.

It's now 3 months after my release the tumors have been reduced by 40% in measurement and of 50% in volume! I've gained 18lbs, hair is returning and I'm happy to say that I'm now on a every other month testing schedule.

Test patient 3, Survivor #1.

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I am new to this group! Someone posted this thread on the Synovial Support Group on Facebook. I joined this same trial at NIH!!! I actually just left MD today from a visit. I started at the very end of January last year. How is it all going for you?


HELLO Kristin!!! Are you sure its the same trial? So glad to meet you digitally. All is well on my part and I could not be happier. It feels fantastic not being on any form of meds. I go back to NIH in a couple of weeks for my checkup. My body is bouncing back very well.

So how are you doing? Do you gave any evidence of the disease at this point? How many tumors did you have etc.did you have a 2nd treatment? I have a 1000 questions.


So happy to hear you are doing well!!! Im pretty positive that we are in the same trial. Still very much trying to figure out this site haha.

I have a million questions for you too!!! I started my chemo & cell transplant back in January. This is my third time with ss, and my large lung tumor shrunk decreased by 50% after 60 days, but 120 days out no change. I had lung surgery this August to get rid of the tumor!!! So my first check up was this week and everything looks ok for now.

Soooooo many questions for ya :wink: Who are some of the doctors on your team at NIH?


I'm at 50% as well. I go back on the 19th of this month. One of my tumors shrunk to the point where it is no longer causing me pain in my back. Has told it is paper thin and barely there. Was also told that tumors are made up of more than just cancer cells and it can take time for the body to reabsorbed the other cells. As much as a year or two. Did you get the results back from your second apheresis? Are the new cells still active in your system? Also did you have bazaar skin issues? I became very soft and oily. My hands and feet feel like a little kids.


Just returned from NIH and I'm happy to report the treatment is working. 62% shrinkage in just about 4 months.


Hey! Sorry I haven’t responded.I got an email notification that you commented, but just saw it.

Anyway, my second apheresis showed that the Tcells were still active, but I had that done within a couple months after I did the trial. My port is out,and I can’t do apheresis anymore because my veins are too small. I did not have any skin issues,hope your get better!!

Glad to hear your news:)


:-) Great news just in time to celebrate with turkey!


Looking into this for my boyfriend. Any advice, experience, general knowledge?


Hi Kristin! The skin issues are not bad. I had IL2 sunburn, plus all the skin from my hands and feet peeled. After that it just went form oily to dry with no in between.

Has your immune system bounced all the way back? And how long did it take? I'm still hovering around 190 so I'll have to wait to have my tattoo updated and no flu shots this year.

I'm glad to hear that the modified cells are still active in your system. They have not examined the cells from by 2nd apheresis yet. They harvested them but they remain frozen. I was told that they are waiting until all 10 people have been through the trial before they research the differences between the modified t-cell counts and patient outcomes.

The tumor that was in my back muscle is completely gone at this point.

Very thankful this Thanksgiving, for sure.


Hi Kelly! I worked with my oncologist in narrowing down the clinical trials I was interested in. He reviewed the various treatments I had been through over the past 20 years and provided a list of the chemos that had been tried. You'll need to know this when reviewing the eligibility and inclusion requirements. We met after hours one night and he spent about an hour with me reviewing the 30+ trials I was interested in. He narrowed it down to about 6. I knew I wanted to try this trial - I believed it had the best chances to extend my life.

Prior to contacting NIH (National Institute of Health) my oncologist ran blood and tumor tests to insure that I was HLA A2+ and that my tumor expressed NY-ESO-1.

Once I had the test results in hand I called the contacts below and provided all the test results, CT scans etc. that they needed. NIH schedules the first appointment where they take you through the ins and outs of the trail, services that they'll provide etc..

This trial is hard to get into due to the various requirements that your boyfriend must meet. I lucked out. There are still 7 openings and I'm looking for company!

Your boyfriend will need to be off all forms of chemo for some time before he can begin the trial if he is accepted. That part was a little unnerving for me.

The clinical trial I'm in is NCT01343043

And the contact are below:

Contact: Crystal Mackall, MD 301-■■■■■■■■ ■■■■■■■■■■■■■■■■■■■■■
Contact: Melinda Merchant, MD 301-■■■■■■■■ ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Good luck!


Hi Jim, I am so happy that you say the trial is working and there is a 62% shrinkage. Jaclyn was always asking me about you and I truly miss her being here to hear the great news about you. You definitely are a fight. Keep up the progress and thanks for all the support you are giving everyone. I am so excited for you.


Thanks Lynda! I look forward to to hearing from you as you always supply encouragement and support. Yes I'm a fighter and so is everyone with this condition. I'm just lucky or cursed, depending on how you look at it. I've been given another chance. Now I need to figure out what I've been given a chance to do. Looking for the meaning in this extended life and I think it just comes down to letting love flow and helping whenever you can. It's the little things in life that are important. Thank you for being in mine.



Just returned from my 2 month check in yesterday and I'm happy to report that the tumors continued to shrink. I'm at a 65% total reduction at this point. My cancer has been stabilized. As mentioned previously, what remains of the tumors can take up to a year or two to be absorbed back into my body. (Let's hope that they are all benign cells) The staff at NIH is very happy with my progress.

I'm happy to report that another patient just completed their treatment and is back home recovering and awaiting his/her first return visit. (Congratulations!) There was another patient at the clinic for the initial consultation.

Whoever you are - welcome! Feel free to connect with me.



Congratulations Jim! That's worth a celebration!


So incredibly happy to hear your progress and success with the trial. I wish you all the happiness and continued success killing cancer. Congrats and celebrate life


Thank you guys! As you know, you can drive yourself crazy prior to a check in. It's time for a bottle of wine and a romantic weekend. Celebrate we will.


Great news Jim, I'm all smiles for you. God Bless


I started coughing up small amounts of blood about 3 weeks ago. I went to the local emergency room and gave them my cancer history. They performed CT scans but could not tell me the reason behind the bleeding. Luckily I moved my NIH appointment up by 3 weeks so that I would be home for my daughter’s senior prom. I just returned home on Sunday.

2 of my 3 tumors are very well behaved. In fact two are gone. The other one is made up of two lymph nodes that have merged. It is next to my aorta. A bronchoscopy revealed that it has broken through my bronchial tube of my left lung and is causing the bleeding.

My wife and I met with a thoracic surgeon for the removal of the tumor. It is believed that the location will not cause too much loss of lung capacity. My surgical records are being sent and reviewed as this will be my 4th lung surgery, the 3rd for the left lung. I have a number of other lung function tests and PET scans, etc. that I need to pass in order to discern that surgery is indeed the best option at this point.

I travel back to NIH this coming Sunday with surgery tentatively scheduled for Thursday. I’ll keep posting as episode unfolds.



Good luck with the surgery! Hopefully you get in and out quickly, and back into a NED state. For my third and 4th surgeries (also left lung), I had air leaks meaning a longer stay in the hospital. It felt like being in jail. Instead of being attached to the wall with shackles, I was attached to the wall air pump with a chest tube ;-(