Pulmonary Artery Sarcoma
Comments
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PASHansumyee said:Me three
Hi thereI am also dealing with a diagnosis of pulmonary artery sarcoma and was told its exceedingly rare. Mine unfortunately spread to both lungs and kidneys. I have been through 6 rounds of AIM and it has been shrinking all of the tumors, but still not enough foR surgery. And I'm also dealing with going through treatment and parenting a young child, my son is 3.5 years old (I'm 35). If you are interested in swapping stories, please send me a message, I would love to talk to others going through this too.
Cindy
hi. I have PAS. Are you srl interested in. chatting?
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Thank you Timrfisher
My sister was just diagnosed. Age 54. Emergency surgery on Halloween to remove blood clot which turned out to be PAS. PET scan showed no metastasis. Chemo starts early December. Hopefully we will beat it. Thanks for your words of encouragement.
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Hi. Please know you aren’tAnt Deb said:Thank you Timrfisher
My sister was just diagnosed. Age 54. Emergency surgery on Halloween to remove blood clot which turned out to be PAS. PET scan showed no metastasis. Chemo starts early December. Hopefully we will beat it. Thanks for your words of encouragement.
Hi. Please know you aren’t alone. I am a PAS survivor ought still fighting. It’s been 2 years. Following initial Surgery I was clean for a year and then recurrence. I am doing chemo now and it is working. There are so few of us it is important we support each other. Wishing your sister the best.
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Hi everyone. I'm 39 years old
Hi everyone. I'm 39 years old and was diagnosed with intimal sarcoma a year ago. Did 13 rounds of chemo and just started a trial for a new drug targeting a gene mutation found in my tumour.
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Update
My sister is doing very well. Started 2nd round of chemo today. So far fatigue is main side effect. I wish this cite were easier to use. Doesn't seem to have a way to connect other than these posts. Would love to know how others are doing. Reassuring to see that there are instances of success. Have any of you had genetic testing? Any hip, knee or other metals in your body?
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SurgeryLukefromPoland said:Hi everyone. I'm 39 years old
Hi everyone. I'm 39 years old and was diagnosed with intimal sarcoma a year ago. Did 13 rounds of chemo and just started a trial for a new drug targeting a gene mutation found in my tumour.
glad to hear!! I am a two year survivor. I had one surgery, radiation (pos margin) a second surgery and now chemo. Chemo is working. I am trying to get to surgery. Is surgery an option for you?
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ChemoAnt Deb said:Update
My sister is doing very well. Started 2nd round of chemo today. So far fatigue is main side effect. I wish this cite were easier to use. Doesn't seem to have a way to connect other than these posts. Would love to know how others are doing. Reassuring to see that there are instances of success. Have any of you had genetic testing? Any hip, knee or other metals in your body?
Hi. Glad to hear your sister is doing well. What kind of chemo is she doing? Every time I have tumor removed I have sent to Foundation one medicine. This is expensive but important as it tells you specific gene mutations which can help Dr with gene therapy. This cancer does not have gene markers so it is not hereditary. do you know what kind of chemo drugs she is in?
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