Pulmonary Artery Sarcoma

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  • Pev
    Pev Member Posts: 8
    edited July 2017 #22
    Hansumyee 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

    PAS

    hi. I have PAS. Are you srl interested in. chatting?

  • Ant Deb
    Ant Deb Member Posts: 2
    edited November 2017 #23
    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.

  • Pev
    Pev Member Posts: 8
    #24
    Ant 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

    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. 

  • LukefromPoland
    LukefromPoland Member Posts: 1
    #25
    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. 

  • Ant Deb
    Ant Deb Member Posts: 2
    edited December 2017 #26
    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?

  • Pev
    Pev Member Posts: 8
    #27
    LukefromPoland 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. 

    Surgery

    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?

  • Pev
    Pev Member Posts: 8
    edited January 2018 #28
    Ant 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?

    Chemo

    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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