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frankew's Recent CancerCompass Activity

  • FrankeW has replied to a post on the message board

    I am a 5 year, 5 months survivor of Oligodendroglioma Grade 3 brain cancer.  Gross total resection.  Was on Temodar for a year.  No recurrence so far.  Keep positive!  Take care, Franke

    April 26 at 2:18 AM view post
    • FrankeW has replied to a post on the message board

      Are you familiar with Charles Trippy?  He is the bass player for the We The Kings band.  He is on you-tube and holds the world record for the most consecutive you tube videos for the past ten years.  He was diagnosed with an Oligodendroglioma grade 3 brain tumor.  He had two surgeries and has been on and off Temodar over the years.  His wife is expecting their first baby in a couple of months...

      April 01 at 4:42 PM view post
      • FrankeW has replied to a post on the message board

        I was taking seizure medication (Keppra) for a few months after my surgery until I slowly weaned myself off.  Only then did I start to feel my normal energy come back - even though I was on Temodar for the first year.  I would only be tired at the end of the Temodar week but would bounce back for the remainder of the month.  I am a worrier so the entire first year was a tough one.  I kept thinking...

        January 31 at 3:16 PM view post
        • FrankeW has replied to a post on the message board

          As of January 7, 2019 I became a 5 year survivor of Oligodendroglioma grade 3 brain cancer.  After my resection which removed 98+% of my 5 cm tumor I was on Temodar for approximately one year.  No radiation as my neuro oncologist said he wanted to reserve radiation for when my oligo returns.  No recurrence so far.  I have had no seizures since my surgery and I am completely off seizure medication....

          January 31 at 2:55 AM view post
          • FrankeW has commented on a news story

            In 2003 at the age of 43 I had shingles and was diagnosed with an Oligodendroglioma grade 3 brain tumor in 2014 at the age of 53.  I wonder if my tumor started growing in 2003.  

            January 18 at 1:15 AM view news story
            • FrankeW has replied to a post on the message board

              Today is my 5 year survivor mark!  January 7, 2014 was the worst day of my life and I never thought I would be here five years later.  Oligodendroglioma grade 3 brain tumor 98+% removed on 2-18-14.  No recurrence so far.  No seizures since my surgery and I'm not taking any medication!  God Bless everyone on this message board.  I am so thankful for all the helpful information over the pa...

              January 07 at 8:11 PM view post
              • FrankeW has replied to a post on the message board

                Hello Aussie Marg!  I asked about the frequency of MRI's because our insurance has sky-rocketed since my diagnosis so the fewer MRI's, the better as our deductible is $8,000.  Of course, I always want to do what is best.  Sounds like you've been through quite a bit.  My NO has told me that he wants to reserve radiation treatment until it is absolutely necessary.  Chemo seems to be keeping my ...

                December 21 at 9:28 PM view post
                • FrankeW has created a new message board discussion

                  I am almost at the 5 year mark with my Oligodendroglioma Grade 3 brain cancer with no recurrence.  My surgery was February 18, 2014 which removed 98+% of the tumor on my motor strip.  Was on Temodar for one year.  No radiation.  I haven't had a seizure since surgery.  I am not on any medication.  I take CBD oil.  I have been getting my MRI every 4 months.  Just had one yesterda...

                  December 16 at 11:42 PM view discussion
                  • FrankeW has replied to a post on the message board

                    I have been using CBD oil too for the last six months.

                    December 09 at 8:58 PM view post
                    • FrankeW has replied to a post on the message board

                      Me!  (Grade 3) On January 7, 2019 I will be a five year survivor!  Surgery 2-18-2014 at UCSF - Dr. Mitchell Berger, Temodar chemotherapy for one year, no seizures since surgery and no recurrence so far.  Best wishes!

                      December 06 at 5:46 PM view post
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                      About frankew

                      Patient, Survivor
                      Brain Cancer
                      After Treatment, Chemotherapy, Clinical Trials and Research, Emotional Support, Insurance, Radiation, Side Effects, Surgery

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