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PET results

38sallyb's picture
Posts: 100
Joined: Dec 2009

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?


Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

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!

Posts: 252
Joined: Mar 2009

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!!!


38sallyb's picture
Posts: 100
Joined: Dec 2009

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!

mumphy's picture
Posts: 486
Joined: Jun 2009

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

Tina Blondek's picture
Tina Blondek
Posts: 1566
Joined: Nov 2009

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!

cfight's picture
Posts: 77
Joined: Jan 2010

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

38sallyb's picture
Posts: 100
Joined: Dec 2009

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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