09 October 2014

The Magic Kingdom

What do you do when you're in Orlando and have an afternoon of free time?  Head to the magic kingdom!   

It was interesting to check out.  If I had more time I would have waited in some of the longer lines...  But to help maximize walking the whole park I tried to stick to lines that said 30 min or less.   I did manage to walk Swiss family Robinson's tree house :) some jungle boat tour? With a 'cast member' that had some really bad jokes haha!  I tried to see pirates of the Caribbean but it was 'closed for a technical issue'.  I hoped on a raft over to Tom Sawyer and Hucks private island :) with a stroll over the barrel bridge!

It's Halloween season at the magic kingdom!  I'm sure it's great to see at Christmas time also!   After I sat thru the goofy  parrot tiki room show and getting 'in the tiki, tiki tiki, tiki room... ��' song stuck in my head it was time to go for another silly song 'it's a small world after all...' 

Some of characters were a little creepy haha!  Some other highlights included haunted mansion, space mountain (duo not sure how I like a roller coaster in complete darkness!), speedway racecars (which were really SLOW), and the carousel of progress. Guess all things considerd, I did get a lot in for only being there a few hours!  Finished off with watching the electric street parade? Light show on the castle and a few fireworks! 

Now back to jersey tonight!  Will be nice to spend a few nights in my own bed :)

(Sorry for any spelling errors...  Uploading from my iPhone...)

Hello Arizona!

This post is brought to you 30,000' in the air :). On my way from Arizona to Orlando.  Apparently I'm trying to see how many states I can get to in the 4th quarter of the year!  So far in the last month I've hit: Michigan, Pennsylvania, Ohio, Indiana, Colorado, Arizona, and now Florida!   I won't count New Jersey and New York since I'm in those all the time haha!
(Me @ horseshoe bend w/Colorado river)

Anyway, I joined my lovely friend Marie for another national park adventure!  She was already in the area for a class so I just tagged along (a lot like last years Yosemite adventure!)

We got a lot of windshield time in, but fully enjoyed all the state has to offer!  Here are a few pics!  Enjoy!


- morning sunrise @ Grand Canyon 
- wildlife in the park!  mule deer buck

- antelope slot canyon : page, AZ
- chapel @ holy cross: Sedona 
- pink jeep tour: broken arrow ridge
- cathedral rock in the background 

05 October 2014

You can never have too much awesome!

So I know I've been slacking in the post department!  Health wise I've been doing pretty good!

Yesterday marked a big day!  2 years since my last surgery!  So what have u done to celebrate?   Well, exhausting myself with travel and exploring!  Ok, don't worry, I am getting some R&R!

Last weekend I had the pleasure of visiting my friend Stephanie and others in Colorado!  It was a perfect fall weekend in the mountains!

Then it was off to Dallas for work!  Got back to jersey Thursday night and then Friday afternoon to Arizona to meet my friend Marie!  It's been beautiful!  A few pictures below!  More to follow after we head to antelope canyon and horseshoe bend at the Grand Canyon!  

Hope everyone had a great weekend!


03 October 2014

Another round 30 in.

So I am totally running behind on updates!!  I started a new job a few weeks ago, so that has kept me pretty busy!  

For those wondering ( or keeping tabs) I had another round of Keytruda Thursday sept 25th.  No major issues.  Blood work looks great.  Changed things up and did a late afternoon appointment.  It felt like things moved smoother, but hard to tell. 

The only real hiccup was with the chemo nurse that was drawing my blood and starting my IV.  Sad thing is what I've had enough iv's out in for treatment that I knew it didn't look like the right needle.  So... That meant another needle to get stuck in my arm.   Not gonna lie, I can put up with a lot of pain, but man this stung!  I mean, it should,  it was a needle in my forearm!  I was pointing it to my doctor who quickly told me 'quick complaining'.  And he was right.  I think I was his last patient of the day, and I would guess he saw patients way worse than me!  Pain from the disease, not temporary pain from an IV needle stuck in their forearm.  

Ouch!!  Bruise left behind. 

He's right, I can suck it up and deal with some pain for a few hours for access to a drug that has kept me clear of disease!  I was left with a large lovely bruise!   Small price to pay!

Anyway, after treatment I headed Friday to see friends in Colorado!   Beautiful weather!

04 September 2014

Big News Today: Merck Receives FDA Approval for Keytruda (Pembrolizumab)

So - first things first, I had my appointment at Sloan today.  Some know that on Tuesday I had my 3 month scans.  Results are in - no substantial change or evidence of recurrent metastatic disease!!!  I started Merck's Anti-PD1 aka MK-3475 aka PEmbrolizumab and now Keytruda in Jan 2013.  Today was round 29!  I have had very few side effects, and in almost 2 years nothing growing and nothing new!  In the world of Melanoma, that is a pretty big deal!

While at my appointment today, my doctor and I had a long conversation around when we thought approval might happen (you will remember last week sharing stories about how rumors were saying it may go earlier than Oct 28th).  We were also trying to figure out what does that mean for patients like me on trials?  Perhaps my time as a guinea pig is coming to an end?  Either way, it was well worth it to help move things ahead for the treatment of Melanoma!

Below a few articles on the approval and the drug!  Looks like this will be another spendy one! But I suppose we can't really put a price on life, right?

Hope everyone is well!  Remember - get your skin checks done!  Melanoma is very easy to treat when caught early!


A few articles:

Merck Receives Accelerated Approval of KEYTRUDA® (pembrolizumab), the First FDA-Approved Anti-PD-1 Therapy

27 August 2014

Chatter around FDA Approval of Merck's Anti-PD1

Many of you will probably remember that I've shared that Merck's Anti-PD1 Pembrolizumab (yeah, yeah, drug names are never easy to pronounce or spell...) is set for FDA approval end of October.  This week has started out with a lot of buzz around this potentially going sooner!  I know a lot of fellow patients hoping and praying for this!  

According to one article
LOS ANGELES (Reuters) - U.S. regulators are likely to approve Merck & Co's highly anticipated immuno-oncology drug, pembrolizumab, as a treatment for melanoma well ahead of a late October deadline, according to three sources familiar with the situation."

Stay tuned!  I'm lucky in the fact that I already have access to this, and have had great results!  But I know so many patients that would LOVE an opportunity to at least try it to fight against Melanoma. 


19 August 2014

Another one in the books

Hey Folks - I may sound like a broken record lately and been MIA.  First, don't worry, it has nothing to do with my health.  It has more to do with not much to report these days and living life!

Had round 28 this past Thursday.  It was like most days... wait, wait, wait!  It's a good thing that I bring along things to do.  I got there round 8:50am.  Ok, so I was running a few minutes late for blood work.  They got me back there fairly quickly.  Then it was up to the 5th floor for some more waiting.  Things are pretty routine, so once I get back to see the doctor things move pretty quickly.  As I was heading out from the doctor's visit, I was told some of the blood they drew was hemolyzed.  They were pretty quick about getting some more samples.

After the extra blood draw, I took the time to grab a snack and was able to spend some time with my melanoma mole-mate Julie!  After a few hours, I thought for sure my treatment should be ready.  That's what happens when I have those kinds of expectations...  there seemed to have been a little mix up between the blood draw and getting those updated results to the pharmacy.  (don't worry folks - blood work was perfect, but they can't mix until they have confirmation).

So after getting in around 8:45 am, I was finally taken back for treatment around 3pm.  Makes for a long day, but well worth it!  Let the countdown begin to FDA approval!  I know this could help so many people.

The weekend was spent with some great friends visiting!  We don't have to do anything special, just nice to get together and catch up!

Have a great week!  I'll try and update more often!