Update from the Oncologist Appt - 10/16/2012

I met with my oncologist today.  I had started on my chemo meds a week ago on Sunday (taking 4 pills, twice daily - every day.)  She asked how I was feeling; I feel much better now - starting to get energy back; in fact, I think there was two days of sleeping in and no napping.  I also felt like I was getting my ideas/points across - that was an issue for me; I'd know what I would want to say but couldn't get it out.  I asked Kurt how he felt that I was.  He said that he thought things had gotten better.  (I even asked my mom after my appointment and she said she thought since last Thursday she could see improvement.)  This seemed like a positive with the oncologist - she said that the new meds react very quickly - which is a great sign!  Kurt asked how long people typically take these pills and she said they take them until they no longer respond which on average is about 6 months.  Then it sounds like I could start Ipi again; Kurt asked if I could do both at the same time and she indicated that it was currently in clinical trials.

I will have a PET scan in @2-3 weeks and another MRI in @8 weeks.  I will see the oncologist in 4 weeks unless I am having any complications. 

Last Thursday I met with the TV6 news for an interview on my last brain surgery.  She told me she would contact me when they were going to air the story... I haven't heard from her yet but see that they posted an article about the news story on their website at http://www.uppermichiganssource.com/news/story.aspx?id=813664&fb_source=message#.UH2fmlHQjd0

   (It didn't air on the 6 p.m. or 7 p.m. news tonight... maybe 11 p.m. or tomorrow?!?!?)

I continue to believe....

Seven Come Eleven... (or more) - 10/9/12

I decided to try to blog instead of having Kurt "guest blog".  I've been going through radiation treatments for the last several weeks.  I had an appointment yesterday with the radiation oncologist who asked me how I was feeling; I mentioned that while I knew what I wanted to say it wasn't always coming out.  The doctor asked if I wanted to go for an MRI as he was concerned that if I went through too much radiation it could do more damage to the good brain matter.

I also started the BRAF inhibitor chemo drug (Zelboraf) on Sunday - twice daily, four pills taken 12 hours apart.  (Knock on wood, I haven't felt anything from taking them....)

So, today we met with the radiation oncologist to discuss my MRI results.  He showed us comparisons from the MRI images a month ago vs. the MRI images yesterday ; where there were currently only 7 tumors a month ago, we lost count at 12 to 14.... and that's after radiation.  So, he is going to talk to my oncologist about what she wants to be the next steps (she was off today - she'll be back in the office tomorrow and hopefully we will hear)  I left there feeling nauseous, cried with Kurt, texted friends and family (didn't want to talk to people yet), took a nap, talked to my parents.  We haven't talked to the kids about it yet - but plan to tonight.

This doesn't mean that I am giving up hope or believing!  I will continue to fight... because those that love me and support me mean that much to me!!!

I also got a phone call that I will be interviewed by TV6 news on Thursday about the Brain Port surgery I had on August 8th - I have to contact my neurosurgeon's office to see if they still approve of me meeting with them with the NEW news.... I'll call tomorrow.  (I'll blog when/if I meet with them and know more of when it will air.)

(I asked Nathan today when he got home from school if my hair looked like Don King... he didn't know who Don King is - but I think it does!)