27 July 2014

Thanks Family for the Love and Support

I don't make it back home to Minnesota that often but in the last month or so I've been back twice.  Usually my family is lucky to see me twice a year!

Last weekend it was for a family reunion.  It's always nice to catch up and enjoy some time back home.  I love living in the NYC area with all the hustle and bustle, but I forget sometimes how much I miss having a backyard, and just taking it easy.  I arrived back Friday night and spent the night with my little brother.  It was nice to grab some dinner and hang out in the backyard with a little fire.

Saturday was spent running around after my niece Gabby and hanging out at Uncle Earl's Petshop with my mom and brother.

Sunday we had a family reunion at my aunt Geri's.  It was great to catch up with family!  And to my surprise, my mom had Team Erin hats made for everyone!  Thanks again everyone for the love and support!

Team Erin Hats - Thanks Mom!
My mom and her cousins
What a camera crew!
My lovely niece wearing her hat!

26 July 2014

Breaking Records - Most People Applying Sunscreen at One Time

Many of you probably remember a post a few months back about attending a Melanoma Walk (Ann's Hope) in Milwaukee.  One of the things they were trying to accomplish was to set a World Record : Most People Applying Sunscreen at 1 time.  Way to go Milwaukee! the record was set.  Too bad it couldn't list all of our names hehe!

Remember to apply your sunscreen!  I recently saw this info graphic from Walgreens recently on sunscreen.  Have a great weekend!


04 July 2014

Family Time

It seems that the only time we get the whole family together is for weddings and funerals.  Sadly, this last weekend was for a funeral.

My Grandpa Youngerberg passed away last week.  I was trying to make it home to see him but just didn't get there in time.  It was the first time in a long time we've gotten all 13 cousins together.  It was nice to catch up even though it was a sad occasion.  It's so fun to see how much everyone has grown up!  And to have the 2 little ones running around.

A little fuzzy - but the Youngerberg cousin crew (and 2 great grand children)

It was nice to spend some time at Kamp Dels in Waterville, MN with everyone.  We were talking about how when Em and I were little we learned how to cast a reel from the camp site.  It's hard to tell from the picture below, but the camper is set up from the road.  Gramps would help Em and I with our Snoopy and Woodstock fishing poles.  We'd spend hours practicing.  I don't remember ever catching any fish! lol! 

I suppose it was fitting after a funeral to have a huge storm roll thru.  It was a nice reminder to enjoy the simple things in life as I watched my niece Gabby totally excited about the rain!

Gabby didn't really know what to think of me.  She doesn't get to see me that often (last time was at Christmas).  She didn't want to come near me until I broke out the iPad!  haha!  Technology wins every time?

Hope everyone has a safe a happy and safe 4th of July!

15 June 2014

ASCO Updates and Immunotherapies

I haven't had much time to share some of the info coming out of the ASCO meetings a few weeks ago.  The main headlines continue to be around the immunotherapy treatments and the success that patients are having with them.  A recent article in the NY Times shares some findings.  You can see below that the 2 drugs combined are showing nearly 88 percent survival rate after 2 years (if you look at melanoma survival stats prior to these drugs, it was round 20 percent survival.  Pretty amazing.

Many of you know I took Bristol-Myers Yervoy followed by Merck's Anti-PD1  and have had great success so far.  Pretty amazing stuff with minimal side effects.

"The power of a combination was shown in advanced melanoma, a deadly skin cancer. In one clinical trial, 79 percent of patients receiving two immunotherapy drugs from Bristol-Myers were alive after two years. Of those who received the optimal dose, the two-year survival rate was 88 percent. The study involved only 53 patients, however, and might not represent what would happen on a larger scale.

Dr. Wolchok, who was involved in the study, said that only several years ago, the two-year survival rate for metastatic melanoma may have been less than 10 percent. One of the immune drugs, Yervoy, which was approved for use against melanoma in 2011, allows for a two-year survival rate of about 25 percent when used alone, he said. The other drug, nivolumab, which is still experimental, had a two-year survival rate above 40 percent when used alone in a study."

12 June 2014

#25 in the books!

Well... Another treatment day. Amazing how fast 3 weeks goes! And for some reason, it always seems to be gloomy the morning I'm heading in!

The view from under my umbrella. Ok, it wasn't really raining hard enough for the umbrella but was just enough to be annoying!!

My appointment started around 9am. Got my blood drawn and IV put in! The only downside of having an IV put in @9am is sometimes after 4-5 hrs of tape on my arm it looks like this :

Small price to pay for getting a dose of the good stuff!!! My skin doesn't always like the medical tape!

I thought things were kind of quiet and moving along... My main doctor was out so I was seeing Dr P instead. Things didn't seem to be far behind. Then I jinxed myself. Here I thought maybe I'd get done early, still didn't get treatment until after 1pm. I never understand why they even bother with a treatment time on my schedule :). But that's ok. Gave me time to do some work, grab lunch, and catch up on a few other things.

As mentioned, scans continue to look good! So we will continue on! Hard to say what is the right amount of this stuff. But do far, it's working! Here's hoping it gets approved soon! So others can trip the Ipi-pd1 1-2 punch on the immune system.

- Posted using BlogPress from my iPhone

10 June 2014

Scan time again!

Just a quick update.  I know some saw it on Facebook.  

Spoke to my doctor this afternoon.   After 4 months of zelboraf, 4 doses of ipi, one major surgery, and 24 doses of Mercks anti-pd1...  My scans continue to show nothing new and the tiny lymph nodes as stable.   This marks 2 years with nothing new showing up!  

Protect the skin you're in!  Wear your sunscreen!  And get in to see your dermatologist each year!  


- Posted using BlogPress from my iPhone

07 June 2014

The Fault in our Stars

I have this problem with reading, when I start a book I must finish the book...  like I'll give up sleep to finish the book.  This is my reason for not reading much!

But, I saw that iTunes had The Fault in our Stars (http://www.imdb.com/title/tt2582846/) for a reduced price, so I thought why not?  Of course I started the book on a Friday morning and finished it Saturday after meeting some family in the city.  It's an easy read.  Can't say how close the movie is to the book, but if you're going to see it bring some tissues.

I realize that it's a book targeted towards young adults (maybe why it's such an easy read).  It's a story by John Green (http://johngreenbooks.com/) about two teenagers with cancer that meet at support group.   I guess the part I could relate to is the bond that you sometimes build between your fellow cancer warriors.  

Although, with that said, it's things like this I should not read right when I'm getting ready to head in for updated scans again!   

While reading the book I felt there were a  few lines I that I think most 'cancer' folks can relate to (if you are waiting to read the book or see the movie ... you might want to stop reading!  haha.  You've been warned!). Sorry this is a bit of a long post!

- 'cancertastic past' - this is in reference to Patrick feh support group leader as he talks about beating his cancer.   

- 'Cancer Perk - Cancer perks are the little things cancer kids get that regular kids don't: basketballs signed by sports heroes, free passes on late homework, unearned driver's licenses, etc.'.  Never really thought about getting 'perks' but I suppose it's one way to spin a positive light on a bad situation.  

- '... got in to one of those experimental trials that are famous in the Republic of Cancervania'.   Like Ms Hazel Grace, I am also in an experimental trial.   That odd land where we have a special club of folks.   You don't necessarily want to have to join, but you're glad they take you!

- '... thinking that I would give up all the sick days I had left for a few healthy ones.  I tried to tell myself that it could be worse, that the world was not a wish-granting factory, that I was living with cancer not drying of it...'  I thought it was an important message - about living in the moment and living life as much as you can?

- 'I'm in love with you, and I'm not in the business of denying myself the simple pleasure of saying true things.  I'm in love with you, and I know that love is just a shout into the void, and that oblivion is inevitable...'  I think when dealing with a cancer diagnosis you realize how important it is to express how you feel.... Life is short.

- 'Okay, okay' - this is said over and over between Gus and Hazel

- 'Some infinities are bigger than other infinities' 

- 'I'm on a roller coaster that only goes up' - when first diagnosed I used to talk about the roller coaster ride we are on!   

- 'That's the thing about pain, it demands to be felt' - this is so true!   I've been fortunate not to have extreme pain (ok the tumor in my small intestine started to hurt like a son of a gun 

- 'Gus, like most cancer survivors, lived with uncertainty.'  Ain't this the truth?see back to beginning where we discussed going in for scans tomorrow.  I live my life in 3 month increments...

- 'According to Maslow, I was stuck on the second level of the pyramid, unable to feel secure in my health and therefore unable to reach for love and respect and art and whatever else, which of course, utter horseshit'. 

- 'Some war' he said dismissively.  'What am I at war with?  My cancer.  And my what is my cancer? My cancer is me.  The tumors are made of me.  They're made of me as surely as my brain and my heart are made of me.  It is a civil war, Hazel Grace, with a predetermined winner.'

- 'Would it be absolutely ludicrous to try to make out?' "There is no try," I said, "There is only do."

- "Without pain, we couldn't know joy'

Please ignore any spelling errors and formatting.  My laptop didn't want to cooperate tonight so I finished this update on my iPad.