FrankeW

FrankeW's Recent CancerCompass Activity

• 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

• FrankeW has replied to a post on the message board

  I know exactly how you feel!  There is always hope.  Take things one day at a time.  

  November 16 at 10:37 PM view post

• FrankeW has replied to a post on the message board

  I have also followed Dodgerblue's posts since my Oligodendroglioma grade three diagnosis.  My 5 year mark will be on January 7th!  So far no recurrence.  It is comforting to read about other people doing well in spite of this terrible condition.  It makes me feel like I am not alone on this strange journey.  Best wishes.

  November 14 at 11:23 PM view post