FrankeW

FrankeW's Recent CancerCompass Activity

• 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

• 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