Synovial Sarcoma - Online Support Group

Hope - A dangerous thing

My name is Jim. I am 53. Since age 21, I always had a tender spot on my right ankle. After having it looked at many times, 10 years ago it got larger. X-ray showed nothing, but MRI showed something. After seeing several Dr.s the recommendation was surgery to get it out. Two weeks after the surgery, I got the bad news that it was SS.

Continued. Sorry. Did chemo (ifos and epirubicin) and radiation. Three years later SS in lungs. Bi lateral VATS. More ifos and epirubicin. Two years later more lung spots. Another VATS. One year later more spots and SBMRT radiation. One and one half years later MRI guided SBMRT for more lung spots.
I knew the score when I was diagnosed.
In Aug. this year my onc Dr. (Dr. Adkins at BJC in St. L) told me about more spots and the new ones looked hot. (NOT GOOD)
His advice was to look into clinical trials. I had been watching NYESO-1 for several years. Dr. Adkins referred me to Dr. Brian Van Tine. Dr. Van Tine treats several patients with SS. He saw me and we started Ifos and looking into trials. He suggested looking at a new one MAG-4. I was a genetic match for the trial and had the correct immune system. I would be the first one at BJC to do this trial.
I said yes. Dec 18 my Tcells were taken. At the end of Dec '18 my left lung collapsed and I spent a week in BJC getting more chemo. NOT GOOD.
Jan 20 ish I went back into the hospital. At that time I had three tumors. All on left.
After doing a week of hemo depletion - NOT fun. My modified Tcells were ready and so was I. About Jan 21, they infused the new Tcells into me. Infusion causes CRS(a syndrome) that gave me a fever of 100-105 for 5 days.
I was sick and in BJC for 10 days.
The first few weeks after infusion, I was so tired. I felt like I had a cold all the time. Then I notice my breathing was getting easier. Felt less pressure on my left lung.
Fast forward 6 weeks to my follow-up CT and Biopsy. The big tumor that was compressing my left lung is gone. (yes gone - not smaller - they can’t find it). My two other tumors have shrunk by 80% and appear to be dead.
Because this is research - I don’t know what will happen in the future and I don’t know if this will work for others. BUT you or your loved one should be tested for MAG-4. Dr. Van Tine (BJC - St. Louis) was my Dr. and is the contact for this study. To find the clinical trial search : adaptimmune MAGE-A4.


Such great news and information. So happy for you.

Thankyou so much for sharing this information it certainly gives us hope and such a wonderful result fir you so far! I’ve done a lot of research too and I’ve heard so much about Dr Van Tines work.
Can i ask a few questions please - do you know how it’s known if a tumour is ‘hot’? Each time you got lung mets approx how many & were they bilateral? Do you know if your SS was monophasic or bisaphic, ssx1 or ssx2? We are in Australia and I’ll share this information with him. For us original tumour was bisaphis ssx1 - surgery & chaemo/radiation and 16 months later we have mets to lungs recently (8 removed with vats) its monophasic. Oncologist has sent away for gene testing/mutations which he said we’d get results back in 8 weeks & no treatment until then which makes me nervous. Again thankyou!

What a delightfully happy result. I am going in for my 3rd operation of soft tissue sarcomas in my pelvic area. Had 2 removed and a third one they did embolization on it is not growing. After the second one was removed, doctor did not want to operate again. (also had a hysterectomy in 2008) So we tried radiation. That shrunk the tumor but in 3 months it had grown back to the size it was before radiation. Consequently had embolization. Then the 4th tumor. Doctor said “he would only operate if he had to”. Think he finally decided now was the time as I am healthy 81 year old and he didn’t want the tumor to get any bigger. He will leave the other tumor in place and hope the embolization keeps working… I know I am at risk for complications but willing to take the chance. Doctor is trying to keep my quality of life good. I had cancer sequencing done on the 2nd tumor that was removed, but unfortunately there were no know targeted drugs for solitary fibrous sarcomas. My daughter works for the parent company of Foundation One and as her mother I was able to get the testing done free of charge. We may get this tumor tested as well after it has been removed. Surgery 4/16 to will try to get back to you all after that.

The “hot” comment was due to the growth rate. Mine mets had always been slow. The new one were not slow. One in lung and two on chest. No surgical possible.

I don’t know on the genetics. I have made a point of avoiding too much info; I lack the clinical judgment to apply the info to my situation.

My lung mets were bilateral the first time and only right sided the second. For mets to be radiated I had mets on both sides at different times. The radiation worked well and was easier than Vats.

You are right to be nervous. This is a rough go.

1 Like

Also, I have had 21 mets take out or radiated out. My mets respond better to radiation that chemo. In the first Vats the Dr. took out one spot and later the path. found three in same tissue.

This is amazing :smiley: Thanks for sharing the positive note ! Let more positive news flow into this grouuuuup!

Wonderful news! Thanks for sharing. I LOVE Dr Van Tine. He’s a brilliant clinician and an incredible human. I wish I had the HLA type for the trial, but am hopeful they will soon include other HLA types.

You have been through so much! You are amazing and so is your latest news! My husband passed away 3 1/2 years ago after battling synovial sarcoma for 15 months.
I am always happy to read about new treatments and their success. It does bring hope for those warriors still battling this awful cancer.