Zelboraf it is...

I saw my medical oncologist today.  I have some answers to questions (and still some others) and I'm sure you guys have LOTS of questions also.  So here's what I know so far...

- My hemoglobin last week was 5.6.   After 3 units of blood on Friday (5/25) it was at 10.0.  Today it was at 10.1.  So good news is that it's holding steady.  Still low - but at a much safer level than it was last week.  I've been put on iron supplements also due to the anemia.

- I asked the question again - 'What if it's NOT Melanoma?'
          - Well we never know for sure without a biopsy but the area of the small intestine that I have wall thickening in is VERY common for melanoma.  Combine that with the fact that we know the black beast has shown it's face in my lymph nodes under my arm and in my lungs and the fact that lymph nodes around the small intestine are swollen = a strong possibility that it's Melanoma.
          - I'm still reaching out to my doctors to ask 1 more time about biopsy.  I realize it's not an easy spot. My fabulous surgeon that I had from UNC who did my initial first 2 surgeries was so kind as to send me is thoughts also.  It's good to know thru all this I've had a great team behind me.

- if the spot in my intestine is bleeding - why not just cut it out?  and will Zelboraf stop the bleeding?  Well we know given my hemoglobin levels staying steady that if there is a bleed - it's a slow bleed.  So that's why try the treatment route vs. surgery.

- Side effects? (I'll do another post with more details on this) but most common - rash, diarrhea, and severe sun sensitivity.  Not too bad compared to some other drugs out there

- Scan schedule - most likely scan 6 to 8 weeks after starting the drug

- What if Zelboraf stops working?  (This is where my doctor told me I was switching to the glass 1/2 empty - I pointed out he was the one who decided it was Melanoma without a biopsy - who's the negative one? lol!).   If it should stop working there are lots of other options out there right now.  Ipi is an option, trial with Anti-PD1, etc.  He wants to start with Zelboraf because if I'm a responder it works FAST!

- If I get clean scans do I stop the drug?  Do I stay on it?  The answer is that no one really knows.  It's still so new that they aren't sure what's the best route.  But most likely if I have a good response and clear scans we would follow-up with Ipi.

So that sums up what I know right now.  Zelboraf will be arriving tomorrow.  May wait to start it until I get some answers on the biopsy questions I had.

Cheers!
Erin

and what would a post be without a picture of some sort?  This is a picture of One World Trade.  I try to get a picture every time I go in to the city to track the progress.


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