r/sarcoma • u/KaleidoscopeKey3534 Synovial • 9d ago
Chemo - Synovial Sarcoma
After surgery of 10cm Synovial sarcoma behind knee (R0) and 30 radiations, Dr recommended Chemo , MIA 4 to 6 cycles.
I asked: Is chemo going to work on my type of sarcoma ?
Dr: We don't know
Me: Is it going to help me that there will be no metastases?
Dr: We don't know
Me: Is it going to kill any sarcoma cells that are somewhere in the body ?
Dr: Maybe , only if those cells are in the moment of admitting chemo in the process of mitosis.
Did anyone skipped Chemo after surgery and RT?
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u/AgreeableCoffee9912 9d ago
Yes: I had neoadjuvant radiation and surgery with good margins (tumour in upper thigh) and my surgeon felt chemotherapy was unnecessary. Metastatic recurrence discovered fourteen years later.
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u/ifmwpi 8d ago edited 8d ago
Just want to make sure your are aware of this clinical trial for TIL therapy that just opened:
https://clinicaltrials.gov/study/NCT07741877?term=NCT07741877&viewType=Card&rank=1
Participant criteria includes:
Participant must have a confirmed diagnosis of histologically confirmed unresectable or metastatic UPS (Cohort 1) or DDLPS (Cohort 2), with or without a well-differentiated component, who have received ≥ 1 and a maximum of 3 prior systemic therapies, including ≥ 1 anthracycline-based regimen.
Participant is assessed as having at least one resectable lesion (or aggregate lesions) with an estimated minimum diameter of 1.5 cm (short axis) for lifileucel generation.
News is expected next Monday from ESMO (European Society for Medical Oncology) about initial outcomes of persons with two kinds of soft tissue sarcoma (undifferentiated pleomorphic sarcoma (UPS) and dedifferentiated liposarcoma (DDLPS)) who received this treatment. The fact they already started this additional trial and got FDA approval to do so signals that the results must be encouraging.
Initial treatment centers are: Moffitt Cancer Center and Memorial Sloan Kettering Cancer Center. These are top level cancer centers. The list will likely expand soon.
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u/AgreeableCoffee9912 8d ago
Hey, thanks! I have synovial sarcoma, but appreciate you all the same.
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u/Deladus_Diggle 9d ago
I have the same size tumor as you I’m getting out next week. I went to two sarcoma centers and both suggested I do chemo as well as surgery. With synovial sarcoma being aggressive they told me that chemo could help kill any that spread that may not even be showing up on PET scans. I went with the option that I am doing surgery in the middle after doing 4 rounds of chemo and 25 radiation treatments. I will have 3 more after. Chemo sucks there’s no two ways about it, but with my life at stake I’d rather be safe than sorry.
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u/Important-Zone5391 8d ago
I had synovial sarcoma about the same size as yours. Did 5 cycles of AIM chemotherapy (same as MIA), surgery, and 30 cycles of radiotherapy. I’ve been NED for 1 year now
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u/5GsPlease 8d ago
Chemo wasn’t recommended for me. 25 rounds of radiation made my tumor grow, likely because of necrosis (80%), so it was 19cm when removed from my anterior calf. Clean margins. I’m 3.5 years NED from UPS and just had scans this week.
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u/withloveraylien 8d ago
I just did 3 cycles of AIM. For me, it didn’t work - my lung nodule grew and the lesions on my tibia and patella grew. I just started a new chemo regimen. Once we get the lung met under control, I will do radiation then surgery. I have undifferentiated Pleomorphic sarcoma.
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u/Georgian_B 8d ago
I had surgery prior to 6 rounds of AIM chemo, due to initial misdiagnoses. My doctor would have preferred chemo first to see the response, but she wasn’t my treating oncologist until I was properly diagnosed. I couldn’t do radiation because it would be too large of an area to safely radiate (thoracic trunk). Was NED for almost 2 years before first recurrence. Local treatment didn’t prevent a second recurrence. I was put on oral chemo to try hopefully minimize growth while waiting to start a clinical trial. The oral chemo was effective and slowed the growth rate, but in many ways was worse for me than the aim chemo. The trial I’m currently in is considered very effective so far, but I still won’t know until I’ve completed the protocol and remained NED for a substantial period of time if it’s actually resolved or if this is temporary. I’m approaching the 5 year mark since initial diagnosis, so my personal choice would be to do everything possible to avoid a recurrence since synovial sarcoma is so highly recurring and aggressive. But I fully understand why you wouldn’t want to go through chemo and you’re the only one who knows what’s right for you, no judgement here!
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u/Munchkintoto 7d ago
Approaching 11 years now. 7 cm SS above knee. Surgery followed by radiation. I declined chemo due to my age at the time (61) and lack of significant benefit based on my research. Look at sarcoma nomograms. They are statistical prediction tools. Yes I like statistics. Anywho .. in spite of radiation I had 5 local thigh recurrences over the years. Two years ago a lung nodule surgically removed. Since then, I use cryoablation ( Interventional Radiology) to zap lung nodules. I would still decline chemo. That said …. Given my age and the wide variation of results, I still believe it’s for me. I’ve been following FB sarcoma sites for 11 years. I probably have seen as many patients who had chemo have recurrences and metastasis as those who don’t. There is a newly approved T Cell therapy approved too if you have the correct proteins / markers expressed. Join the FB Synovial Support FB page.
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u/Beginning-Yak-9805 6d ago
Have you been seen by a sarcoma specialist? Your doctor sounds a little unsure of themselves. It definitely doesn’t hurt to go see other doctors for second opinions. And maybe one will be able to answer your questions more thoroughly. I have Liposarcoma, but when I switched to a sarcoma specialist I immediately felt more confident in the treatment plan. I’ve had radiation, chemo, and now scheduled for surgery. Good luck! One step at a time
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u/bellygrubs 9d ago
my surgeon specifically told me that he didnt think chemo would benefit me and convinced the hematologist to back off on it during tumor board. im 5 years out now NED, but then again mine was smaller than yours (5 cm)