13 April 2014

The New Normal

On Thursday I had round 22 of Merck's Anti-PD1 Immunotherapy drug.  This has been a long road so far, but with great results.  What some may refer to as the 'new normal'.  As mentioned before, the appointments are pretty routine.  I show up... I wait, I get blood work, I wait... I see the doctor, I wait...  you get the point!  :)  but in the end, it's all worth it for a life saving drug, right?

Some have asked me before how I get the medicine.  Sorry for the picture, but it shows where they put in an IV.  Typically I get it in and they use it to draw blood.  Then I have it in for the day while  wait for treatment.  It's a little uncomfortable having to have that in my arm all day, but totally appreciate having to only be stuck once!  Especially since last time they drew blood from my hand I was bruised for a week+

While I was in I got another update for the clinical trial.  This is the 2nd time I've had to resign the paperwork.  The updates this time included things like:

Follow-up: survival follow up changed from every 60 days up to 24 months to every 60 days for life. The only way I can take that is that folks are surviving much longer than 24 months after stopping this drug, and they want to keep tabs on how folks are handling it.  

A few of the other changes were around side effects.   One added to less likely was:

Increased release of thyroid hormone which may manifest as anxiety, irritability, or trouble sleeping, weakness, trembling, sweating, feeling uncomfortable in warm weather, fast or uneven heartbeats, feeling tired, weight loss, and frequent or excessive bowel movements.  

I feel like I get these things all the time...  so if someone seems me anxious and irritable, you know why!  lol.  I mean, it could just be from dealing with something like a cancer diagnosis, right?  haha.  Sometimes it's are to know if you have side effects or just from living life.  

Speaking of living life, the weather is finally starting to get a little nicer which means we can take some longer walks.  It also means avoiding the geese around the area.   Which Winnie loves to chase, but Dublin likes the 'treats' the leave behind...  Below is a picture I took the other morning while out walking the pups.  

I hope that everyone had a fabulous weekend!  

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24 March 2014

James Rebhorn

I was saddened to hear that James Rebhorn passed away Friday night.  I had the privilege of meeting him in October at at Gala for the Melanoma Research Foundation.  He was being honored that night and I gave a brief speech.  He was so kind on his way out with his wife to stop by me and give me a big hug!  Then we snapped this quick picture.  I remember asking him how his battle was going and he just shrugged his shoulders and said so so...

When I read the news on Sunday it hit me a little hard.  He was actually the first person with Melanoma I had physically met on this journey that has lost their battle.  In reading more of his history, he had been battling Melanoma since 1992.

Part of what I talked about in my speech was the need for research and funding.  Melanoma research has come so far in the 3 1/2 years since I was diagnosed, but there is still a long ways to go!  There was an article that came out in the Wall Street Journal last night about how drug firms focus on Advanced Melanoma.  I'm happy for this focus!  The article starts out stating "Major pharmaceutical companies are racing to launch breakthrough drugs in the next 18 months to treat advanced melanoma, the deadliest form of skin cancer."

I am lucky that I have gotten access to Merck's MK-3475 drug (their anti-PD1).  And as I shared a few days ago, they are starting an Expanded Access Program to allow more patients the opportunity to try the drug.  The hope with the advancement of these immunotherapies is that melanoma can be treated as more of a chronic illness than a terminal disease.

Will be interesting to see how things land in this year in the race for BMS, Merck, and others to get their PD1 to market first.  Yervoy (which I took in 2012) was 4 doses at a cost of $120,000.  PD1 is taken every 2 or 3 weeks and my trial is for 2+ years.  I don't pay for the drug as part of the trial, but the WSJ article estimates the PD1 drugs could come at a cost of $240k/year!  Yikes!  I guess it's hard to put a price on a life saving drug?

Stay tuned!  Lots of things going on in the world of Melanoma!  but for now, this gal needs some rest!


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18 March 2014

Scan results in...

This will be a quick note. This gal is exhausted! I think I didn't drink enough water after the scan juice yesterday! And it made for a long day of not feeling so great.  Wish I could blame enjoying st Patricks day a little too much hehe!  But no green beer or whiskey for this gal yesterday!

Spoke to the doctor this afternoon.   Scans look good! Nothing new and anything still there now it's hard to tell if cancer or just normal lymph node (but they are unchanged).  Treatment #21 on Thursday.  


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17 March 2014

Donations for Research and the controversy it can bring...

Ok it's a working title... and not quite sure it's working well!

So - some of you may have seen the article in the New York Post that came out today?  Well... Sunday I had gotten back from grocery shopping and was relaxing some when a fellow Melanoma Warrior Chelsea asked if I was available to talk with a reporter from the NY Post.  I said why not (even though I know sometimes how things can be spun in the Post).

When the reporter called, he said he was doing a follow up story they did about protesters against donations that David Koch had provided to New York Presbyterian hospital.  He gave NYP nearly $100 million dollars and folks that were against his views protested the donation.  In researching it, they found that he had also given Sloan Kettering over $60 million dollars over the years with a lot of that money helping fund the research behind Bristol-Myers Yervoy for the treatment of metastatic Melanoma.  Some folks may remember that when I first started at Sloan as a Stage 3 patient, I tried getting access to this drug as a part of a clinical trial.  I wouldn't get in, but in Sept 2012, I'd take the drug after a tumor was found in my small intestine.

The interview was really around how do I feel about Koch donating money to MSKCC and funding research.  In my opinion, I don't care what your political views are, if you're willing to donate millions for life saving cancer research - Thank You!

I took 4 doses of Yervoy Sept-Nov 2012.  When I had my 12 week scans, like many others, I experienced growth.  When they scanned at 16 weeks, shrinkage!   and then I started Merck's Anti-PD1 clinical trial.

Back to working titles of articles...  when it was posted this morning, it stated something about how Cancer Patients Bash Koch hospital donation protestors.  Ok...  at first glance I thought it meant we were bashing Koch.  I'm not typically in the habit of bashing people.   I have much bigger things in life to worry about!  It must have come out that way to others, since the title was than changed to Koch Hospital Saved my Life: Cancer Patient.  Well... if someone asked me what saved my life, I wouldn't phrase it that way... but the point is that it's silly to get caught up in politics.    So many other things to worry about in life!

On another note - it was quite the experience how they brought it all together.  And who knew they'd use my picture at the top of the story (sorry folks!  was told to be serious and not a lot of notice)...  A very nice photographer John Roca came to my messy apartment to snap a few pics.

Well it's been a long day!  Scans, physical therapy (have had some swelling from lymphedema), and work...  this girl is exhausted!

Stay tuned for results later this week!


Happy St. Patrick's Day

May the Irish hills caress you.
May her lakes and rivers bless you.
May the luck of the Irish enfold you.
May the blessings of Saint Patrick behold you.

So I realize that my updating skills have been lacking!  Sorry about that.  I think I'm still catching up from vacation and work lol!  Ok that's my excuse anyway.  I guess a better one is I'm out living my life!  and too sleepy at the end of the day to update?

It's been a busy last few weeks!  That's for sure.  I can tell Skin Cancer awareness month is right around the corner, because activity seems to be increasing in the discussions of Melanoma (and other Skin Cancers).  I'm not complaining at all.  I think it never hurts to have more awareness out there!  and there is just so much advancement that has gone on in the last few years - it's exciting!

I'm hoping that the luck of the Irish will be on my side!  Didn't get to watch the parade in NYC this year, but will be heading in to the city shortly for my 3 month scans.  Here's hoping things continue to move in the right direction!

Lots more to update on, but will have to work on that later tonight!

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10 March 2014

Some big news

I thought I had posted this but just noticed it's still in my drafts.  As many know I have been on Mercks anti-pd1 drug (http://www.merck.com/about/MK-3475.html) for over a year with great results!   And you might remember me talking about a fellow warrior who desperately tried to get the drug company to allow an expanded access program.   Unfortunately for Nick, he wasn't able to get access, but it now appears others will get the opportunity. You can see some details below.  

This gives patients another drug to help fight melanoma! And hopefully means we are getting closer to it being FDA approved!


Expanded Access Program for MK-3475 in Advanced Melanoma

An expanded access program is now available in the U.S. for MK-3475, Merck’s investigational anti-PD-1 immunotherapy, for eligible patients with advanced melanoma who have been previously treated with ipilimumab and, if indicated, a BRAF inhibitor. The U.S. Food and Drug Administration has agreed to the initiation of this program. The study is available here(#NCT02083484).

The MK-3475 Expanded Access Program for advanced melanoma will be administered by a partner company, Idis. Physicians in the U.S. can reach Idis at 1-855-478-4347 or at mk3475us@idispharma.com. For approximately the first two months, the program will be available through physicians at MK-3475 melanoma clinical trial sites in the U.S.  Following this initial phase, the program will be open to all physicians in the U.S. who have experience using systemic treatment for melanoma.

Merck intends to expand the program to other countries in 2014. While applications outside the U.S. are not yet being accepted, Idis will be maintaining a list of physician inquiries so they can be contacted if the expanded access program becomes available in their country. Outside the U.S., physicians may contact Idis at +44 (0)1932 824 123 or mk3475row@idispharma.com.

MK-3475 is an investigational therapy and is not approved for use by any regulatory agency. An expanded access program is for patients who have serious or immediately life-threatening illnesses for which no comparable or satisfactory alternate therapies are available.

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02 March 2014

Round 20

Thursday I was in for round 20 of Mercks anti-pd1.  The good thing is that it's become pretty routine these days.  Most of my appointment was spent talking about my recent trip to Sochi vs any issues. 

It was a long day of hanging out at Sloan.  It was nice to see my friend Julie and her mom.  Keep Julie in your thoughts and prayers...   One of the brain tumors she had radiation on is bleeding and causing some pain.  She'll be having surgery on it this week to get the darn thing out. 

My 3 month scans have been scheduled for March 17th results on the 20th when I'm in for round 21.  Protect the skin you're in folks!   It's a good reminder - beginning of the month to get your skin checked!  


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