Resources...

I was recently contact by Novartis to see if I was interested in communicating more with them on being a patient advocate and identifying what (we) patients need.  I will keep you updated as to what happens with this new exciting opportunity!

I received an email from them last week with some resources they (Novartis) has developed to help educate patients about NET. I wanted to share this with you.

The first is NET Alliance

The second is Carcinoid.com, it even has a "symptom assessor", which I think is fabulous!

Check out these two great resources for NET cancer patients and their caregivers.

A quick update on me:  I'm still doing well, however, the last few weeks I've been very nauseated.  It comes and goes but has been a companion of sorts everyday.  I have no idea whats up.  I do have an appointment with my GP this week so I'll ask her about it.  Other than than that, I'm really well.

Take care.

Melissa Mathison, Creator of E.T., dies of Neuroendocrine Cancer!

I just received an email that the writer of E.T., Melissa Mathison, died of NET cancer.  The article doesn't say much about her diagnosis so it was a little disappointing to me.  She had an incredible career, which included an Oscar nomination for E.T.  She also wrote The Black Stallion, one of my favorite movies!

If you are interested, here is a link to the article.

Melissa Mathison dies at 65

NET Cancer Day is November 10th!

and I get my butt dart!  I mean, my Sandostatin shot.  On NET Cancer Day.  Yeah.  It isn't really a butt dart anymore.  With the new formula, it is a little less painful although I have had more pain after the shot than I was having before.  I don't really think it is the formula though.  I think it is just how it is.  Sometimes it hurts and sometimes it doesn't.

Sorry I have not posted.  I've had "technical" difficulties and have not been able to access this blog.  I'm not sure how I got in tonight.  I just kept trying and it finally popped up.  Weird.

Soooo,  with NET Cancer Day approaching.  I do want to give a shout-out to raising awareness for NET/Carcinoid Cancer.  I really want to start being more or an advocate for us Zebras and help raise awareness of this rare cancer.  I am going to try and do much better with the blogging...

Please check out the Carcinoid Cancer Foundation www.carcinoid.org and if you are on Facebook, they have a zebra striped background that you can overlay onto your profile picture.  It is very cool. I did mine.

I wanted to add that one of my concerns about being "open" about advocating for NET cancer is that my work does not know about my diagnosis.  There are a few people who do but not my boss or the directors that I support.  I also work for an insurance company so it can be a little awkward.  I figured I wouldn't ever say anything until I had to get additional treatment.  I may "come out" but I haven't decided when.

My next scheduled blood work isn't until the first part of January. I have a scan scheduled for the end of January and then meet with my new oncologist the first week in February.