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. 

22 May 2014

Collaboration for Awareness - #GSKsummit

I am so behind on posting...  but better late than never, right?  It's been a busy month so far!  As you are all aware, every month is Melanoma Awareness month for me, but it gets extra attention in May!  We have such great awareness days as Melanoma Monday and Don't Fry Friday (FYI - that's tomorrow kids!)

Lately I've seen a number of Drug Companies, Organizations, etc doing what they can to see what can be done to work together to help create awareness!  We've all seen the stats that if caught early Melanoma is highly curable!

When I was contacted by Anna @ GSK (US External Communications) about an idea she had to bring together Melanoma patients (bloggers), patient advocate groups, and GSK team I didn't hesitate in saying I'd love to participate.  I wasn't really sure what to expect, but one thing I've learned along the way, is anything I can do to help, I'm willing to do!

Shortly after I was diagnosed, I made the decision to share my story and experiences.  So sometimes, it's a little strange to meet folks since they've already gotten a view in to who I am and what I've been dealing with thru my blog.  Everyone couldn't have been nicer and more welcoming! GSK was really doing their part to make sure their employees were aware of Melanoma and the dangers.  It was also a great opportunity to finally meet some fellow Melanoma Warriors in person!

The first part of the summit was for a few different folks from GSK to give us some background and information (for example a growing discussion around genetic testing and Melanoma).  Folks from GSK participating were:

- Jamey Millar, Vice President, U.S. Oncology, GSK (you can read a write up from him here)
- Dr. Faisal Mehmud, Head, U.S. Oncology Medical Affairs, GSK
- Dr. Diane McDowell, U.S. Oncology Medical Affairs Lead, GSK

It was great to hear about things like: putting the patient first and living their values (Respect, Transparency, Integrity, and Patient Focus).  These were obviously very in everyone's participation of the event!  Dr. McDowell pointed out that (sadly) 1/3 to 1/2 of all people will somehow be effected by cancer.  Anything we can do to come together to work towards awareness, is a step in the right direction!! (Melanoma is highly treatable if caught early)!

I thought there was some great discussion around the room about how to make folks aware of the growth of melanoma and how to prevent it!  Hopefully it was helpful for both the patient advocate groups participating and for GSK!   I would like to thank them for inviting us in!  Hopefully there will be more opportunities like this to help!  I think anytime you can bring a cross function group together you get great results!

I hope that everyone has a fabulous Memorial Day weekend!  For those of us from the North, this is typically the start of summer, and when most folks get burnt!  They aren't used to warmer weather...  great reminder to slap on some sunscreen!  Wear your hat and sunglasses!  and be sun savvy!  Oh yeah, and if you haven't done so already - schedule your annual appointment with your dermatologist!!

I know there are lots of other points/info I wanted to share from the summit, but this gal is exhausted!


GSK professionals, Melanoma Patients/Bloggers, and Patient Advocate groups
@ GSK offices at Navy Yard in Philly
For my fellow Melanoma folks - check out their blogs below!  (oh yeah and some of the patient advocate sites!)
NOTE: GSK provided reimbursement for travel and expenses to attend the GSK Melanoma Summit.  However, this post is voluntary, represents my own views and I was not paid to write it.

Some photos from the Day...
Cake Cutting - such a wonderful welcome from the GSK team!

Reminders to GSK Employees


Thought it was great reminder to employees on their way out to the rooftop area!

21 May 2014

Oh how time flies by...

Tomorrow I'll head in to MSKCC for another round of Mercks anti-pd1.   It also marks the anniversary of hopefully the first and last time I'll have to take an ambulance ride.  

In the spring of 2012 I wasn't feeling great.   I had been feeling run down.  Getting colds I couldn't shake...  I remember feeling weak and faint all the time.  I knew something wasn't right.  But in my head, thought it could be many things.  Was I out of breath because of the missing wedges of my left lung?  Was my heart racing so fast because I was out of shape?  

I had scans done May 18, 2012.  Oddly the week or so before I had been traveling for work.  I remember the last day before flying home a coworker saying 'you look yellow'.  I just brushed it off as the lighting.  

On May 22nd I sat patiently in the exam room for the latest results.  I know something wasn't right.  The conversation went something like this (at least in my head it's how it went...  Stress may have made me remember it differently lol!)

Doc: you look pale, do you feel pale?
Me: no, what does pale feel like?  Wait... I'm a melanoma patient...I'm supposed to be pale
Doc:  something showed up on your scans, but most importantly...  Your hemoglobin is low...  Like you only have 1/2 the blood in you a normal person should have!   I can't let you leave without a blood transfusion...
Me: oh...  

That afternoon I'd be taken over by ambulance to the main hospital to get 3 units of blood.  I think at one point I had 4-5 doctors all standing around me with stethoscopes on me.   All trying to figure out where I was bleeding from and why I hasn't passed out!   I remember a nurse telling me later that it showed how strong my body was that I hadn't just collapsed!  

At the time I didn't ask to see my scan report.  I was too caught up in having to get a blood transfusion. (Which luckily I can say my hemoglobin has been holding strong!!). 

Here is what the report said (for those that are curious):

Now I know this is a little bit of a long post.  I just wanted to reflect a liftle on that this was 2 years ago! And it's meant 2 years of cancer treatments (zelboraf, ipilimumamb, and now anti-pd1) and one major surgery to remove part of my small intestine, but I'm still here and going strong!   Scans continue to show nothing new and what's left stable or shrinking.  It's amazing over the short time I've been battling this how much has changed!  I'm thankful to have such a great team at Sloan looking after me, access to participate in the Merck MK-3475 clinical trial, and support of my family and friends!   

Here's hoping tomorrow is another 'routine' treatment!   Scans are coming up  June 9th with results @ treatment on June 12th.  

Remember to protect the skin you're in!   Melanoma is very treatable if caught early...  If you haven't done so already - make your annual appointment to see your dermatologist!!