PET results

38sallyb
38sallyb Member Posts: 87
edited March 2014 in Esophageal Cancer #1
PET Scan was Thursday and Friday we met with the Onc. Tumor is only half as much SUV as well as all lymph nodes except one and that one was stable. So great news. Not so good news is we are scheduled for simulation for radiation but NOT Proton. Sent a message to the patient advocate, but haven't heard back and they are closed tomorrow for MLK Day. Very frustrating, since all there literature is so positive about Proton. We need to make this happen! Any ideas?

Sally

Comments

  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #2
    Well your patient advocate is where to start
    But I would call the radiologist and I would just say "look, we really want proton, what do we have to do to get it? We'll participate in whatever studies you want us to do."

    And see if they schedule you then.

    Though you should know, their IMRT is better than most of the usual photon radiation out there...

    I AM SO GLAD about your PET though. That is wonderful. Just wonderful! That is very, very good news. No wonder he looked so great when we saw you--he WAS great!
  • emg09
    emg09 Member Posts: 228
    #3
    Betty in Vegas said:

    Well your patient advocate is where to start
    But I would call the radiologist and I would just say "look, we really want proton, what do we have to do to get it? We'll participate in whatever studies you want us to do."

    And see if they schedule you then.

    Though you should know, their IMRT is better than most of the usual photon radiation out there...

    I AM SO GLAD about your PET though. That is wonderful. Just wonderful! That is very, very good news. No wonder he looked so great when we saw you--he WAS great!

    Great news!!!
    I'm so happy to get some good news!!! I think I need to hook my parents up with a patient advocate. Happy for you both!!!

    Erika
  • 38sallyb
    38sallyb Member Posts: 87
    #4
    emg09 said:

    Great news!!!
    I'm so happy to get some good news!!! I think I need to hook my parents up with a patient advocate. Happy for you both!!!

    Erika

    Patient Advocate
    I will post results from our call. When we talked to our Radiation Oncologist the first time, she was not very
    enthusiastic about the Proton, but all the literature we have read and patients who have had it, is extremely
    positive. Jim hasn't any problems except EC, no heart, lung, liver or spine, so we don't want them to occur
    because of radiation scatter. Hoping we can do something about it soon. Still don't have anything scheduled
    except simulation.
    If your hospital has a Patient Advocate, I'd try to set your parents up there. I'm hoping we can find out their
    reasoning. Our Rad. Onc. may be leaving, so we'll be transferred to someone else. That might make a difference.
    Good thing is, Jim feels great and has his appetite back. Hungry all the time, so he may gain some of the weight
    back, which is great. We're still keeping him on the 2 a day protein shakes. Thank goodness for Boost!
    Sally
  • mumphy
    mumphy Member Posts: 440
    #5
    38sallyb said:

    Patient Advocate
    I will post results from our call. When we talked to our Radiation Oncologist the first time, she was not very
    enthusiastic about the Proton, but all the literature we have read and patients who have had it, is extremely
    positive. Jim hasn't any problems except EC, no heart, lung, liver or spine, so we don't want them to occur
    because of radiation scatter. Hoping we can do something about it soon. Still don't have anything scheduled
    except simulation.
    If your hospital has a Patient Advocate, I'd try to set your parents up there. I'm hoping we can find out their
    reasoning. Our Rad. Onc. may be leaving, so we'll be transferred to someone else. That might make a difference.
    Good thing is, Jim feels great and has his appetite back. Hungry all the time, so he may gain some of the weight
    back, which is great. We're still keeping him on the 2 a day protein shakes. Thank goodness for Boost!
    Sally

    Things are looking up
    Hi Sally,

    It's always nice to here good news and your right getting a new ONC. might just be the thing you need to get the Proton.

    I'm glad to here the Jim is eating and is hungry. Hungry is always a good sign.

    Keep up the good work.

    God Bless
    Kath
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    mumphy said:

    Things are looking up
    Hi Sally,

    It's always nice to here good news and your right getting a new ONC. might just be the thing you need to get the Proton.

    I'm glad to here the Jim is eating and is hungry. Hungry is always a good sign.

    Keep up the good work.

    God Bless
    Kath

    Hi Sally and
    Hi Sally and Jim,
    Congratulations on the recent pet scan! Sounds like a new onc, is in the works for you, and that just may be a good thing. Glad to hear Jim's appetite is so great. Good luck with the proton. You are both strong and determined. You will see to it that he gets the best treatment I am sure!
    Tina
  • cfight
    cfight Member Posts: 69
    #7
    This is great news!! I'm
    This is great news!! I'm learning that you need to cherish these days. best wishes, Carolyn
  • 38sallyb
    38sallyb Member Posts: 87
    #8
    cfight said:

    This is great news!! I'm
    This is great news!! I'm learning that you need to cherish these days. best wishes, Carolyn

    Blessings
    We are grateful for every day, even the ones that go by slowly! Blessing abound if we're looking for them and we have
    so many! And we're grateful for all of you too and your encouragement and prayers. We're praying for all on here too.
    It's working.
    Sally & Jim

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