15 March 2015

Thursdays @ Sloan

My routine every 3 weeks ...   Working from my doctors office while I wait for treatment.  On one hand, it's nice to get out and about.   :) Nothing new to report!   Bloodwork all looks great.  Well...  My phosphorus always seems to drop low every few visits.   But just barely under the normal range.   

Nothing new to report.    Scans will be may 13th and May 14th will make the call if we finally take a break.  I think we are all in agreement that it's a good plan!  

Hope everyone had a fantastic weekend! It was rainy all day yesterday and wonder today :/ but that's ok.  I was fine with a nice weekend of taking it easy. 


12 March 2015

Kansas City Adventures

Last weekend I headed to KC to visit some good friends!  I must say, it's great to see all the improvements KC has done over the years!  It was also a fabulous weekend weather wise!   It was so nice to be able to sit outside for a meal and even for some corn hole in!

If you're ever in the KC area, the WWI museum is a nice stop!   Take a trip to the top of the tower for great views of downtown!  

A few photos from the weekend adventure!

Picked up these fun koozies from Team Cocktail!  Cuz we're awesome!   http://www.teamcocktail.com/collections/accessories/products/collapsible-koozie

The view from the tower.   

Hope everyone is having a great week!  Another round of Keytruda for me tomorrow!  


23 February 2015

Another round of good scans!

Last week I had another round of scans.  A brain MRI was added in since it had been almost 2 years since my last one!  (I've come along way from having to get them every 6 months!!!).  

Results continue to look good!   CT scan shows stable lymph nodes and nothing new!  Brain MRI was clear!   So we decided to keep on with the trial 12 more weeks!   If scans are stable again then we will make the decision to stop the trial.  It's scary, because we don't know what happens when people stop (or really how many doses someone needs to work). But I also think I'm ready for a break!

Hope everyone is having a great week!   We got a very short lived teaser of what spring might feel like!  And then back to the cold temps again!   


Is... Ignore any typos...  Updating from my iPhone. 

02 February 2015

2 years of Keytruda

Last Thursday I was in for my treatment.  It officially marks 2 years on the trial!   My doctor and I had a conversation about stopping the trial.   I have been on some sort of treatment since May 2012.   I am very thankful and greatful to have gotten access to this wonderful treatment!

When I signed up, originally it stated the trial would last for 2 years (possibly longer).   Then it was changed to an open ending - stating until growth, adverse side effects, or the patient wanted to stop.  It's a big decision!  And I've thought about it a lot.  I'm lucky that there are minimal side effects and I have the flexibility to make it in every 3 weeks for treatment, but at some point I feel I need to stop being the cancer patient, and start being the survivor.  And maybe get 3 months between reminders vs every 3 weeks.   

I know my participation in this trial is what has helped get it FDA approval!  And me staying in the trial helps others.  But I think my body is ready for a break!

So we made an agreement that if (when) my ct scan and brain MRI look good in a few weeks we will stop the treatment.  We don't really know how much our bodies need to be trained to fight.  And  tricky because the 'spots' that are left on Ct scan are in lymph nodes.  No easy way to find out if they are cancerous or dead tumor cells.  But what we do know is that they are small and haven't changed in 2 years!  (Boy how time flies...)

So stay tuned!  Hope everyone is staying warm!  (For those of us in the Midwest and northeast!). 


Another round of winter weather hitting us today - snow then to freezing rain and back to snow!

18 January 2015

Happy New Year! Still Undefeated...

Another year is in the books.  This year had some ups and downs.  Health wise it's been a pretty good year!  (Other than a partial calf tendon tear and strain!).  The lows of the year were the loss of my grandpa Youngerberg in June and my stepdad Steve the week before Thanksgiving.  (and 2 beloved family bulldogs).

I'm a little behind in sharing my 2014 review.  I started these videos a few years ago after a tough year of dealing with Melanoma.   I wanted to share with others that even though you're going thru surgeries, and treatments, and other dealing with Melanoma, never give up hope and keep living and enjoying life!   The song I used was Chris Daughtry's song Undefeated.  His line about "You can knock me down with body blows, but you cannot break my hope' felt appropriate.

I won't say that this journey is ever easy, and sometimes we feel a little survivors guilt when others don't make it (there were several Melanoma warriors lost this year... a cure is still needed).  It's amazing to see how many new drugs have been approved since I was diagnosed in 2010, but for some they come too late.

Here's to another healthy (boring patient) year!

Summary: a few highlights to go with video

January:  I hit 1 full year on Merck's anti-pd1 trial with minimal side effects and great results.  NJ/NY hosted the Super Bowl and had some great events (although it was so COLD!!)
February: After having some friends visit for the Super Bowl, I hopped on a jet plane to meet friends in Russia for the 2014 Winter games in Sochi!  It was such a great experience!!
March: another round of scans results back in - stable minimal residual disease!
April: Not a whole of exciting things going on.  Work travel trips and participating in the Melanoma International Foundation's Safe from the Sun walk.
May: I did my part for Skin Cancer awareness month by participating in several interviews and videos.  I also made it back to Milwaukee with my awesome friends for the Block Melanoma walk at the Milwaukee County Zoo.
June: This month had some ups and downs.  My scans were once again good - no interval change, stable minimal residual mesenteric disease.  But with that also came the loss of my Gramps Youngerberg.
July: I was able to make it back home for a family reunion on my mom's side. Great seeing so many extended family members and love the support with their Team Erin hats!  Also turned another year older!
August: This month was a pretty uneventful month.  Some more work travel, visits from some good friends!   Also attended the US Open!  If only I knew more about Tennis...  
September: this month came with some major change!  Scans were once again great!  Amazing how quickly 3 months goes...  And the trial I have been on officially got FDA approval!  During this month I also left my job to start a new job.  With that came more work travel (and personal travel) so the pups took a trip to Minnesota!  I miss them terribly, but know that it's best for them!  (Thanks family for taking them in!)
October: More travel: trip to Arizona to visit Sedona and Grand Canyon with my friend Marie, a few days in Orlando for a conference (and my first visit to Disney World), and New Orleans for a Packers game with the crew!
November: More ups and downs this month.  While thankful to get to spend so much time with my family, sad about the unexpected loss of my Step-dad Steve.  Scans again, and thankful for more good results - no suspicious findings!  Unchanged nodes - probably treated disease!
December: more time home for the holidays!  Only major health issue for the year are a few colds and a pulled calf muscle!

30 December 2014

Another Drug approved for treatment of Melanoma

The FDA has approved another drug for the treatment of advanced melanoma. When I was first diagnosed in 2010, options for treating melanoma were very few. A diagnosis of stage 4 came with statistics of less than 50% of patients living 1 year. While it still sucks, it's amazing to see all these new treatments being approved! Next month will be 2 years of me being on Mercks anti-pd1 (that got FDA approval in Sept). I've had great results - nothing new or growing for 2+ years. 
.... "Opdivo is the seventh new melanoma drug approved by the FDA since 2011,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research.  

Prior to 2011, it had been 13 years with no advancement in the treatment of Melanoma.  Hopefully getting closer every day to a cure!
Still here and going strong!  I hope that everyone had a very merry Christmas and a Happy New Year!  

24 December 2014

'Twas the night before Christmas...

From my family to yours - may you have a very merry and blessed Christmas!

Enjoying some time back home in Minnesota for the holidays!