Zelboraf it is...

I saw my medical oncologist today.  I have some answers to questions (and still some others) and I'm sure you guys have LOTS of questions also.  So here's what I know so far...

- My hemoglobin last week was 5.6.   After 3 units of blood on Friday (5/25) it was at 10.0.  Today it was at 10.1.  So good news is that it's holding steady.  Still low - but at a much safer level than it was last week.  I've been put on iron supplements also due to the anemia.

- I asked the question again - 'What if it's NOT Melanoma?'
          - Well we never know for sure without a biopsy but the area of the small intestine that I have wall thickening in is VERY common for melanoma.  Combine that with the fact that we know the black beast has shown it's face in my lymph nodes under my arm and in my lungs and the fact that lymph nodes around the small intestine are swollen = a strong possibility that it's Melanoma.
          - I'm still reaching out to my doctors to ask 1 more time about biopsy.  I realize it's not an easy spot. My fabulous surgeon that I had from UNC who did my initial first 2 surgeries was so kind as to send me is thoughts also.  It's good to know thru all this I've had a great team behind me.

- if the spot in my intestine is bleeding - why not just cut it out?  and will Zelboraf stop the bleeding?  Well we know given my hemoglobin levels staying steady that if there is a bleed - it's a slow bleed.  So that's why try the treatment route vs. surgery.

- Side effects? (I'll do another post with more details on this) but most common - rash, diarrhea, and severe sun sensitivity.  Not too bad compared to some other drugs out there

- Scan schedule - most likely scan 6 to 8 weeks after starting the drug

- What if Zelboraf stops working?  (This is where my doctor told me I was switching to the glass 1/2 empty - I pointed out he was the one who decided it was Melanoma without a biopsy - who's the negative one? lol!).   If it should stop working there are lots of other options out there right now.  Ipi is an option, trial with Anti-PD1, etc.  He wants to start with Zelboraf because if I'm a responder it works FAST!

- If I get clean scans do I stop the drug?  Do I stay on it?  The answer is that no one really knows.  It's still so new that they aren't sure what's the best route.  But most likely if I have a good response and clear scans we would follow-up with Ipi.

So that sums up what I know right now.  Zelboraf will be arriving tomorrow.  May wait to start it until I get some answers on the biopsy questions I had.

Cheers!
Erin

and what would a post be without a picture of some sort?  This is a picture of One World Trade.  I try to get a picture every time I go in to the city to track the progress.

Memorial Weekend 2012

Thank you to all the men and women who fight for our freedom and those that have fought!  We honor you today and every day.

This weekend my little brother Jake came to visit.  We tried to take it easy :)  Saturday we headed to the USS WASP to tour it and Sunday we took a little walk around Liberty State Park.  You get some great views of the city from there.  We did attempt to see the 9/11 memorial but it started to rain - so we called it a day and just watched movies at home.

Here are a few pictures from the weekend.  It was a good distraction before my appointment tomorrow.  Lots of questions.

Happy Memorial Day!
Cheers,
Erin

Aboard the USS WASP

Military Day in Times Square

USMC band - they were pretty good

The rain has cleared

Empty Sky Memorial - Liberty State Park

Old Train Station 

Jake and I @ Liberty State Park

A different view of One World Trade

What a week... results in...

So sorry for the delay in updating.  I know that every one knows I had my 3 month scans last Friday.  In looking back I have been feeling pretty run down since I had the flu in December.  But being the person I am powered thru.

When you make it in to your appointment there are all sorts of things that go thru your mind.  Like, hmm... while taking vitals they only took 2 vials of blood does that mean it's just a simple routine update?

I get called back in to the exam room and wait for my doctor.  Nurse Jon comes in with a new gal and goes thru the normal list of questions - any issues with x, y, z?  She keeps asking several times if I'm having nausea or stomach issues/vomiting, etc.  I get the feeling this isn't going to be a great appointment - Jon's face shows it.

Dr D comes in.  He first laughs at my red Toms shoes (I love those shoes!) and asks if I coordinate with my molemate Chelsea!  He then goes to wash his hands and says ' you look pale, do you feel pale?'.  My response is - what does Pale feel like?  and shouldn't I be pale?  I'm a melanoma patient I avoid the sun!  :)

He then goes on to tell me that my latest scan showed something.  It shows a section on my small intestine where there is significant thickening of the wall.  The other concern is that there are lymph nodes near it that are also enlarged.

The biggest concern of the moment is that my hemoglobin has dropped to 5.6.  Normal range for a female is like 11-14.  I'm typically in the 13 range.  He says for someone that has lost 1/2 her blood I shouldn't be up walking around.  I need to be sent to urgent care to get at least 2 units of blood.

WHAT?  This is NOT how I thought my day was going to.  I have to get from the out patient center to urgent care at the main hospital.  How are they going to take me - by ambulance!  I wonder how much that will cost for a 20 block ride thru traffic?  :)

Sorry for the gross picture - but this was my view for about 7 hours while I got 2 units of blood.  My poor left arm looks like I'm an addict!  Since they can only use that arm for blood draws and blood pressure.

Ok this post is getting long so here is the short story!  I got admitted that night.  My blood levels were taken at 1:30 am and had gone up to 8.6 from the first 2 units.  I am scheduled to get another unit before they release me.

Next steps?  Well since my levels held it appears I most likely have a slow GI bleed due to the spot shown in my small intestine.  There was lots of debating back and forth about surgery vs. treatment.  In the end the team has decided to start with treatment.  Plan is to get Zelboraf - the drug trial I tried to get in to last March when my lung mets were found.

I asked about biopsy - given the spot they would have to do surgery anyway to reach the spot.  So stay tuned - I'll know more on Tuesday when I meet with my oncologist again.

Right now, I feel pretty good.  Better than I had.

Sorry for this being a little bit of a long update.  I"ll share some more info about the drug they are looking at having me take and next steps.

Thanks everyone for the continued thoughts and prayers!
Cheers,
Erin

PS - This week made me realize how important it is for blood donations.  Thanks to the O+ donors that were able to provide me 3 units!

Scanxiety once again

It's that time again... 3 month scan time! Actually I feel pretty good so I'm not worried but boy am I getting tired of drinking that yucky contrast!

So scans were Friday and results will be on tuesday. Stay tuned for results!

Protect the skin you're in!


- Posted using BlogPress from my iPhone

Pale Skin is in...

This weekend we had some great weather here in the NJ area.  And as a reminder that May is Skin Cancer awareness month - I thought I'd share some pictures of pale skin!

Last November I had a minor freak out while on vacation.  This came when I realized that I was going to be spending 2 days sea kayaking in the Bay of Thailand.  I know that it sounds AWESOME but I wasn't sure how I would deal with that much sun exposure.  A few of the pictures below are from those days kayaking.  I'm proud to say that the only real sun exposure I ended up with was on my knuckles where water washed away sun screen.

The guide did make fun of me some because of my monster brim hat and saying he had never seen anyone as pale as me :)  I only pointed out that he was making that comment to someone who had dealt with stage 4 skin cancer.

Protect the skin you're in.  There are options out there to limit your skin exposure.  I got these great sleeves as an added layer of protection.  Plus I found out that Rit Dye also makes something you use to add SPF ratings to your clothing.  Haven't tried it yet but may for this upcoming summer.

Cheers everyone!

The owner of the kayak tour group took this picture of me...
said he had never seen anyone as pale as me - I'll drink to that.

Mid day break 

Finished our 2 days of kayaking!  

Kayaking Nov 2011

May - Skin Cancer Awareness Month

This month is skin cancer awareness month.  So I'll be adding posts for awareness.

Remember that your skin is your largest organ - protect it!

As my reminder - a picture of my back after my first surgery.  We joke that it looks like I was bit by a shark :)  But removing melanoma isn't as simple as just removing a mole.  This scar is left due to the need to clear margins.

From www.skincancer.org

Since its inception in 1979, The Skin Cancer Foundation has always recommended using a sunscreen with an SPF 15 or higher as one important part of a complete sun protection regimen. Sunscreen alone is not enough, however. Read our full list of skin cancer prevention tips.

• Seek the shade, especially between 10 AM and 4 PM.
• Do not burn.
• Avoid tanning and UV tanning booths.
• Cover up with clothing, including a broad-brimmed hat and UV-blocking sunglasses.
• Use a broad spectrum (UVA/UVB) sunscreen with an SPF of 15 or higher every day. For extended outdoor activity, use a water-resistant, broad spectrum (UVA/UVB) sunscreen with an SPF of 30 or higher.
• Apply 1 ounce (2 tablespoons) of sunscreen to your entire body 30 minutes before going outside.
  Reapply every two hours or immediately after swimming or excessive sweating.
• Keep newborns out of the sun. Sunscreens should be used on babies over the age of six months.
• Examine your skin head-to-toe every month.
• See your physician every year for a professional skin exam.

InstameetNJ - Hoboken Walk

We had our 2nd #instameetNJ this past weekend.  This time we walked Hoboken.  We were able to double the size of our group!  It was a bit of a chilly day but not as bad as the first one :)  Here are some pictures from the walk that day!

Enjoy!
Cheers,
Erin