Medical Update (and Florida/Disney Magic Hopefully Coming Soon...) - 12/13/2011

I've been wanting to blog since we have been on our vacation or home but there has been a lot of things that either need to get done or are priorities at this time.  I thought I would blog tonight about some things that are going on and then in a near-future blog, will update on our wonderfully magical trip to Florida!

As stated in the blog previous to us leaving for Florida, I was having some issues and went in for an MRI on Wednesday before Thanksgiving.  We then met with the neurosurgeon's PA that day and learned that my six tumors were still there and enlarged and were slightly swollen.  They also thought that I was having some seizure activity and put me back on the anti-seizure medication, Keppra.  They did give us the okay to go on our trip and so we (Kurt and I) decided that we were going to keep this information to ourselves until our return.  We felt that we didn't learn a whole lot of new information and also weren't sure exactly what was going on - plus, we wanted to give the 'worrying' as much of a rest during this vacation and knew that if our families were aware of these issues, they would be calling/worrying more possibly.

When we returned from vacation, there was a voicemail message from my oncologist from the Monday prior so yesterday I called her.  She was not in the office the day that I had my MRI so she wanted an update on what happened.  She knew that we knew of six brain tumors still and said that she would contact the radiation oncologist and see what his suggestions/thoughts were; she also said I would see her next Monday (12/19) and would most likely start the BRAF Inhibitor chemo drug.  The radiation oncologists' office called yesterday and set up an appointment on Wednesday.  Both of the kids have Christmas' programs that day so they rescheduled my appointment to today.  So, today I had my PET scan and then met with the radiation oncologist.

I will not know anything about my PET scan until I meet with my oncologist on Monday, December 19. 

During my appointment with the radiation oncologist this afternoon, we found out that my most recent  MRI (done @ 2 1/2 weeks ago now) showed 8 brain tumors.  When I went to Detroit at the end of October/beginning of November, there was 6.  I'm still a bit confused on which are new, which are old ones that have grown, etc.  There are a couple of new ones that are fairly recent growths - one of which is in the pituatary area of your brain and the radiation oncologist indicates that this is fairly uncommon to have one grow there.  There also appears to be a new growth on the right part of my brain that had surgery performed.  He suggested that I decide whether I am willing to go through full brain radiation or whether I would like to go back through stereotactic radiation - stating the pros and cons of both.  My oncologist is also suggesting that I start that BRAF inhibitor so I believe I will be starting that after seeing her on Monday. 

I decided not to wait any longer.  It appears the stereotactic method of radiation is not working overall as I continue to have more and more tumors each time I have a MRI.  I think it is time to start full brain radiation and hope that full brain along with the BRAF chemo drug will work together to zap these and any new tumors!

They mapped out my radiation this afternoon and I will begin treatment on Thursday.  Radiation generally only takes 15 minutes each day and they usually only do 10 sessions.  I will see my oncologist on Monday and will update any new information after that appointment!

As hard as it gets, I still continue to believe!!!!

Thank you for your thoughts, prayers and concerns!

Love, Jodi