Newsletter

Sunday, August 2, 2015

Holy rash almighty.
Below is a graphic image for mature audiences only. Consider yourself warned.

Did your screen break?
Now the rash is completely gone. I REPEAT IT'S GONE and not contagious. But how bad was that? I know I'm being dramatic but I've never had hives before and that was god awful and beyond itchy.
It only lasted about 3 days and started to disappear after I took steroids, but we don't really know what it was from. Top contenders for cause: 1) my new drug 2) a new pho place I tried (I'm not making a joke here. I seriously am leaning towards the pho as the cause). I am still on my drug now and have no sign of a rash, soooo que? nini? what?

Entrectinib looks good so far. I had a scan after a month of taking the pills and everything looked the same...so it stopped tumor growth and I'm looking for some shrinkage (mind out of ze gutter) in the following months. Dr. Ou says he is happy so far, so I'm happy. 
Side effects include fatigue, constipation (why do I always get the constipation side effect!), sore mouth (<weird one...sometimes it feels like I've been chewing all day but it doesn't hurt at all), and sensitive skin (give me dat sunscreen). I just got stimulants to get rid of the fatigue feel and I luvv them. But I don't take one everyday. You know I like you when I take a stimulant for you...just kidding, don't ever believe that. (But do know that I love you when I take a stimulant and a laxative for you.) 
I will admit this drug is not for the faint of heart, but what cancer treatment is?

Having too much fun at the 8 hour blood draw day. My hospital is across from a mall so I would literally go back and forth between a blood draw and shopping, with the catheter thing hanging from my arm, no shame. But those days are done, yeah! 

Now some sad news. I had to make a last minute switch from the full marathon run to the half marathon last weekend. ;(((. My most recent blood draw showed that my red blood cell count (hematocrit) was too low to do the full. I sort of wish I knew this before I did the 20 mile training run. Health comes first so I had to play it smart and downgrade to the half. To those of you who donated to my Addario Lung Cancer Foundation Crowdrise fundraiser page, THANK YOU THANK YOU  THANK YOU. You make me feel so special and give us lung cancer survivors such hope for this disease and future treatments. So much is happening in lung cancer treatment right now. Let's keep the acceleration going. Again, it gives us so much hope..especially for us youngings who like to have lots of drug options laid out. Together the SF Marathon ALCF team raised over $18,000 for lung cancer research. WOOT WOOT.

Video of the weekend made by the talented Bunny Ethan Sanchez.

https://www.youtube.com/watch?v=2Q6lEskT6Oc

Peace, lovin', & J Boogs.

Ps. Next on fun trip list: Oregon for a week long First Descents white water kayaking trip with other young adult cancer survivors. #cancercamp #round2 !


7 comments:

  1. Happy to you, I had bad rash with Morphine during my hospital stay, it was nasty ... thanks for new drugs information. staying positive is medicine, you are hope, keep smiling, I am on xalkaori and its doing good for me , but tiredness is awful , specially i have two little boys, they need fun... but glad to be here with them. Love and prayer to you

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    1. Thanks Sadia! So appreciate your kind words. I agree positivity can do wonders...and so does xalkori! Thinking of you and your boys!

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  2. Corey, I worked with your mom for several years, left IVC and am now back as a sub. She just explained to me what has been going on today. You, my dear, are courageous and an amazing example to others (and humble besides). Here's to your list of "to do's," and when you accomplish every item on the list, a new long, long list. My thoughts and prayers are with you, your mom and your family.

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  3. Thank you Sandy. That's means so much. You are so sweet. I'm doing great! I'll keep adding to the list of adventures, and you better do the same!

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  6. As a sign of gratitude for how my wife was saved from CANCER, i decided to reach out to those still suffering from this.
    My wife suffered cancer in the year 2013 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of abnormal vaginal bleeding, and she always have pain during sexual intercourse. . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cancer . I never imagined cancer. has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. cancer. has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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