From GBM to Cold PET Scan in 15 months

Scottgri
Scottgri Member Posts: 44
in Brain Cancer #1
I thought I'd share some good news...In April of 2011 my world was turned upside down with a very pessismistic doctor's news I had a GBM, 9 months is what he said. So I found a new doctor at Duke University who offered me hope. I went back to work in October, moved into a new house we built and had a "cold" PET scan in July of 2012. And I quote from the report "there is no indication of residual or recurrent high grade tumor."

Yeah, that's right, we are winning the fight. One more year of Avastin then treatments stop because it'll be an official victory.

There is hope, I'm 15 months in and have every intention of dying from heart disease like the rest of you 40 years from now!!!!

Comments

  • amsan1724
    amsan1724 Member Posts: 7
    #2
    GBM 4
    What is a "cold" PET scan? My sister has grade 4 GBM, diagnosed in May 2012. She underwent a new procedure called Auto-LITT at Siteman Cancer Center in St. Louis, MO. It is offered only at Siteman (Barnes Hospital/Washington University) and at the Cleveland Clinic. The procedure "cooks" the tumor, which essentially shrinks it to make radiation and chemo more effective. The tumor is in the thalamus and is considered inoperable. She is currently doing radiation and Temodar, with good results. However, she recently had two seizures and it has set her back as far as walking and thinking/talking. Her short term memory is bad and she has had significant personality changes. She was a soft spoken very sweet person before GBM and she screams and curses now. At times she is very lucid and can talk as if all is well, remembering names and events from years past. She is also taking the steroids for swelling and now keppra for seizures.
  • Scottgri
    Scottgri Member Posts: 44
    #3
    amsan1724 said:

    GBM 4
    What is a "cold" PET scan? My sister has grade 4 GBM, diagnosed in May 2012. She underwent a new procedure called Auto-LITT at Siteman Cancer Center in St. Louis, MO. It is offered only at Siteman (Barnes Hospital/Washington University) and at the Cleveland Clinic. The procedure "cooks" the tumor, which essentially shrinks it to make radiation and chemo more effective. The tumor is in the thalamus and is considered inoperable. She is currently doing radiation and Temodar, with good results. However, she recently had two seizures and it has set her back as far as walking and thinking/talking. Her short term memory is bad and she has had significant personality changes. She was a soft spoken very sweet person before GBM and she screams and curses now. At times she is very lucid and can talk as if all is well, remembering names and events from years past. She is also taking the steroids for swelling and now keppra for seizures.

    PET Scans
    PET scans show cancer cells by making them "light up" from the radiation. So, they describe them as hot and cold. Hot means there are cancer cells, cold means there are no cancer cells.

    Mine was operable, then followed up with Avastin, radiation and temodar for a year.
  • brissis
    brissis Member Posts: 2
    #4
    love the victories
    My brother was diagnosed Aug 10th, 2012 originally with GBM. Was told yesterday 9/4 that it is actually AA III cancer. He is scheduled to start radiation and chemo in 2 wks if he does not have any more set backs-3 ER/hospitalizations since original surgery 8/10. His doctor gave us (the family) the time is very limited speech. We refuse to accept that !!! Hearing stories like yours makes me see that there will be many more years to come! Thank-you for sharing.
  • michral
    michral Member Posts: 14
    #5
    brissis said:

    love the victories
    My brother was diagnosed Aug 10th, 2012 originally with GBM. Was told yesterday 9/4 that it is actually AA III cancer. He is scheduled to start radiation and chemo in 2 wks if he does not have any more set backs-3 ER/hospitalizations since original surgery 8/10. His doctor gave us (the family) the time is very limited speech. We refuse to accept that !!! Hearing stories like yours makes me see that there will be many more years to come! Thank-you for sharing.

    Great news!
    Congratulations!!!! Thanks for sharing the "cold" PET scan. Provides hope!

    Michelle
  • Scottgri
    Scottgri Member Posts: 44
    #6
    brissis said:

    love the victories
    My brother was diagnosed Aug 10th, 2012 originally with GBM. Was told yesterday 9/4 that it is actually AA III cancer. He is scheduled to start radiation and chemo in 2 wks if he does not have any more set backs-3 ER/hospitalizations since original surgery 8/10. His doctor gave us (the family) the time is very limited speech. We refuse to accept that !!! Hearing stories like yours makes me see that there will be many more years to come! Thank-you for sharing.

    Docs
    My family was given the same speech, turns out he was wrong! We didn't accept it either and started the fight. It's been a scary roller coaster ride, but we are winning!
  • amsan1724
    amsan1724 Member Posts: 7
    #7
    Scottgri said:

    PET Scans
    PET scans show cancer cells by making them "light up" from the radiation. So, they describe them as hot and cold. Hot means there are cancer cells, cold means there are no cancer cells.

    Mine was operable, then followed up with Avastin, radiation and temodar for a year.

    PET scans
    I hope you continue to be well. Thank you for the information. I pray you and my sister will survive many years with little residual effects.

    I believe the location of my sister's tumor, thalamus, causes the signals from her brain to disconnect. She is currently in the hospital because of blood clots in her legs and is totally bedridden. She will be released to an extended care facility for rehab in a few days. The two seizures and radiation totally disabled her.

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