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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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So I live in Canada and my options are limited to goverment spending. I asked about my options and basically was only given the option of an oral medication Pazopanib. When I asked about any type of ablation I was told that if we go in, there could be multiple tumors that we just can't see on the scans. so its not an option. After having such an awful time with the chemo and not a great outcome, im reluctant to start up on this medication and all the comes with it.
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1 ReactionI have limited options too for a couple of lesions on the lung. We are still watching them at this point but eventually I will probably start Pazopanib or Trabectedin. I haven’t any chemo for 25 years, so I’m not looking forward to it.
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3 ReactionsI went to Immunocine in Cancun last November for dendritic cell therapy. They have had great results with solid tumors. My last scan showed enlargement so I am waiting on a reply from them. I may possibly return for a booster vaccine. Have been feeling great since Cancun and rejected any chemo treatments before I opted to go to Mex.
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1 ReactionHave you asked your doctor about immunotherapy. There have been some positive results from this type of therapy.
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1 ReactionSorry for delay. My son had surgery first to remove kidney (which is where it first showed up) his adrenal gland and some lymph nodes. He then did AIM chemo (doxy and ifosfamide)- 6 rounds. Then he had Tecelra immunotherapy. In June his scans were clear. Now (sept)- 2 spots have shown up and they did biopsy to confirm what they are. Anxiously waiting…
Sorry for the delay! Immunotherapy went well at first, but son got COVID and a very hard time with his blood counts rebounding. We went until about end of July with regular transfusions. His blood counts habe now gone up- but just recently had a scan and there’s two masses they just biopsies last week. In a weird place (pleura) so checking for infection or EMH as well as cancer recurrence.
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1 Reaction@kenc I did ask about immunotherapy and wasn't available where im at and was told that it hasn't shown much success (the type he was talking about) and very toxic was the word he used
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1 Reaction@tjmc wow so you have been in remission for 25 yrs?
Would love to hear your story.