FrankeW's Message Board Messages

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RE: Wired Up!!!!!!!

by FrankeW - February 04 at 2:58 PM


RE: How often do you get an MRI?

by FrankeW - August 13 at 4:26 AM

With normal kidney function, most of the gadolinium is removed from your body in the urine within 24 hours.

RE: How often do you get an MRI?

by FrankeW - July 20 at 7:35 PM

My most recent MRI was just before Memorial Day and was once again clear.  Whew!  My neuro oncologist has decided that I can now go every six months.  I am thrilled.  I feel so lucky and more like a normal person now that I have more time between MRI's.  Still on CBD which helps with my anxiety.  Doing great.  I totally agree with you that every day is such a precious gift.  

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

RE: Ferility after Temodar

by FrankeW - April 01 at 4:42 PM

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.  They conceived naturally.  You can find his CTFXC videos on You Tube.  Unfortunately, he will be going back on chemotherapy for at least the next six months due to a possible recurrence discovered at his last MRI.  His videos are interesting to watch for me since I was also diagnosed with Oligodendroglioma grade 3 brain cancer.  He is an inspiration for anyone going through brain cancer.  His awake crainitomy was also filmed and can be seen on you tube.  Best wishes!  Franke

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 I was going to die.  Slowly, over the years I have become more "accepting" of what could/will happen.  I tend to get a little down just before each MRI but overall I am happy to be here and right now I feel terrific.  Starting this year, I am going to be getting my MRI's here in Reno instead of making the trek to UCSF in San Francisco so that should help lessen the pre-MRI anxiety.  Best wishes.

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.  I have MRI's every four months.  I am sorry you have to deal with this and I am sure you are still in shock as I was when I was first diagnosed.  Best wishes.

RE: Congrats

by FrankeW - January 07, 2019

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 past five years.  I am hopeful I will have another five years.

RE: How often do you get an MRI?

by FrankeW - December 21, 2018

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 tumor at bay as I had all the good deletions/mutation for it.  This is certainly a "learn-as-you-go" journey.  I hope we both have continued good health for years to come.  Always praying.  Thanks, Franke

How often do you get an MRI?

by FrankeW - December 16, 2018

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 yesterday - all clear.  My NO suggests the next MRI in 5 months.  Just wondering if others out there are going longer between MRI's.  Anyone going once or twice a year or waiting even longer between MRI's?

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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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