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Synovial sarcoma metastasized to lungs: Looking for connection
Hi looking for connection with others going through similar cancer and treatment. I'm a 45 yr old female that got diagnosed 2022 with synovial sarcoma in my thigh. It was removed and radiation. It has now returned 2024 in my lungs. I have had 4 chemotherapy treatments so far. Doctor hasn't given me much hope but trying to stay positive. Question if I can do anything else to increase my chances.
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I'm tagging a few sarcoma members like @ellengrubb @scs23 @mcwjr189 @mrahaman, who have experience with sarcoma in the lungs (primary or metastacized).
@cootiekim, it's a punch in the gut when cancer returns. How are you doing on chemotherapy? What protocol are you on?
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1 ReactionMy son did chemo first, shrunk it from 7cm to 2cm, then just finished radiation on this past Monday and it remains unchanged, plus found a nearby nodule, preop is planned for next week, and we will get a date for surgery.
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1 ReactionI am on a similar phase. Metasized to lungs. Now it's riding on two horses. My doctor holds me tight but still I am looking if they could cut out all my tumours as there are only two places to cut open. Prayers
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1 ReactionI'm done with Chemo. I did a total of 6 rounds. Doxorubicin and Ifosfmide. It definitely hit me hard. Got neutropenia after every round until started on new injection that stopped my WBC from dropping. I almost died from the norovirus. Was definitely ruff and glad that is over. My scan shows no growth, no change. Kinda frustrating but a win in the cancer world
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2 ReactionsDo you go to a facility that knows a lot about synovial sarcoma? I’ve gone to Mayo for synovial sarcoma for 38 years with more lung metastases than I can remember. Different options for removal I’ve had are surgery, radio frequency ablation, cryoblation, stereotactic radiation, brachytherapy, radiation and chemotherapy. You might ask about some of these other options.
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1 ReactionThey don't seem to know much cause seems that my only other option is oral medication if lung nodules grow. Thank you for your experience. I will take note and be asking
Hi @cootiekim - my son has synovial sarcoma (started in kidney) and in lungs within a month (very aggressive). He’s done 6 cycles of AIM (doxy/ifos) which was brutal. There is a new immunotherapy out called Tecelra- only available at select cancer centers. He’s had it but too soon to know how it’s worked. Hey amazing docs. Not to put down Mayo, but MSK is amazing and are on cutting edge of synovial sarcoma research. Look up Dr. Sandra D’Angelo and her team.
Has your son been to Mayo also? If so, what differences do you see between them?
I was diagnosed with a malignant solitary fibrous tumor in my liver on 10/21 and had it surgically removed with no other treatment. It was actually thought to be a carcinoma before surgery. On 10/23 it had metastasized to my lower right lung and I had a lung resection. On 6/24 it reappeared in my upper left lung also. Being a very rare cancer, no one knew what to do. Chemo was recommended but not my choice. Got a second opinion from Sloan Kettering on 8/24. Chemo recommended again and given 1 yr to live. Found Immunicare in Cancun and got treated for 6 weeks. feel great. Google Matt Halpern or Immunicine.com
Hi- no my son has not been to Mayo so I don’t have any input on them. But as for MSK- they are sooooo on top of everything. We also see oncologists in our home state (a large cancer center as well) and the difference is VERY obvious. I believe that if you are dealing with something as rare and as aggressive as synovial sarcoma, patients/families need to go to top cancer centers. I just know that for this type- MSK is amazing.