iowacarcinoid

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Update on my health

on September 16, 2013

So after over a year of trying to figure out what I have in addition to Carcinoid Cancer, the consensus is Sarcoidosis.  It’s an autoimmune disease.  The medical community suspects that there are links between Carcinoid /NET Cancers and autoimmune diseases.  I currently know of one other person who has Lupus (another autoimmune disease) and Carcinoid Cancer.  I’m now listed as the 5th person in literary history to have Carcinoid Cancer and Sarcoidosis at the same time.

And if THAT isn’t rare enough, I have a very unusual presentation and advanced progressive case of Sarcoidosis.  The treatment for it is going to be Methotrexate and Remicade.  Remicade can cause my carcinoid cancer to increase in speed, cause me to develop Lymphoma, and know my immune system out.  So, yay to that…  (I’m being sarcastic)  If the disease doesn’t kill me, the treatment might.

I’m so sick of ER’s and hospitals….

Anyway, we do what we have to do, right?  And we keep moving forward and hoping for the best.

If you are a Carcinoid Cancer, NET cancer, or Sarcoidosis patient – contact me.  I’d love to talk to you and hear your story.  And if you are a Carcinoid/NET patient who lives in Iowa, join us out on FaceBook at “Iowa Carcinoid Cancer Connection”.

Email any time!

Jen Holm

iowacarcinoid@yahoo.com

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