Too-Much-For-One-Blog-Post-Title

Remember how I became really lazy in updating this blog? It is happening again.

Kick me. Throw something at me. Or just turn to Twitter/Facebook/Instagram and you can see that I haven't forgotten about melanoma awareness. In fact, I've been SUPER busy with it!

Prepping for an interview with the New York Post.

I love the months leading up to May. In just 3 years I have seen melanoma awareness grow. While we still aren't where I would like to see us, we are getting there. Alright, let me do a little updating.

Remember last year the American Academy of Dermatology launched the Spot Skin Cancer campaign in May? Remember how they asked the melanoma community, on Melanoma Monday, to wear orange? Remember the outrage from it? So does the American Academy of Dermatology. Many of us within the melanoma blogging community received an email a few weeks ago inviting us to a conference call to discuss AAD's plan for this melanoma awareness month. Instead of rehashing the conference call, especially because Al wrote about it so well, I suggest you read his post! We were all so thrilled that the American Academy of Dermatology read our emails, heard our frustrations, and reached out to us to apologize. I fully intend to support their efforts in raising awareness for this cruel cancer!

I also spoke with a drug company who plans to host a blogger conference in May! I wish I could share more info with you, but be on the look out for it in the coming months. I was so impressed with how interested the company is to promote melanoma awareness so I'm thrilled to see what happens!

This past Saturday was all about indulging in our city's St. Patrick's Day events. I lathered on the sunscreen and headed downtown with my husband to meet up with some of our friends. We had such a fun time!

 

 While enjoying the green beer, I received a message from my melanoma friend in Texas. She said that a reporter for the New York Post was working on an article regarding a donation made to Memorial Sloan Kettering Cancer Center. The reporter wanted to speak to patients who had been treated with Yervoy by MSK. Jennifer passed along my contact info and I was able to talk to the reporter Sunday morning.

So what did a reporter for the NY Post want to talk to this Virginia girl about? It's kind of ridiculous. Apparently folks in NY are royally pissed off at billionaire David Koch and expect New York-Presbyterian Hospital to turn down the $100 million donation he recently made. $100 million dollars, y'all. The reason they don't believe the hospital should accept it? His conservative political beliefs. (Insert eye roll here. It always comes down to politics, doesn't it?)

According to the NY post, Mr. Koch has given MSKCC  $61 million since 1992. This money was extremely instrumental in the development of Yervoy. Should Sloan-Kettering return that generous sum of money because Mr. Koch doesn't agree with Obamacare? Really? (Insert annoyed face here.)

You can read the article for yourself here; however, there are a few things I want to add:

1) The article's title this morning was "Cancer patients bash Koch hospital donation protesters." First, I can speak for Erin and myself, we didn't bash anyone, not even the protestors. When questioned about my feelings, I said that maybe I am selfish, but I'm grateful for the money that Mr. Koch donated because without money, there is no research. Without research, there will be no cure. I don't care where the money is coming from as long as it is used for the right reasons. I'm grateful for his donation.

2) The new title is "Koch hospital saved my life: Cancer patient." I think I'm just going to wait for Erin to blog about this because I'm sure she's going to have something to say. (Insert another annoyed looking face here.)

3) I remember the day Yervoy was approved by the FDA. I was sitting in my hospital bed at MSKCC, recovering from 2 full lymph node dissections, when my surgeon walked into the room. Dr. Ariyan sat down on the end of the bed and told me the news. She had tears in her eyes because she knew what this approval could mean for many of her patients: a new chance.

4) What would I say if confronted by Mr. Koch? Two words: Thank you.

5) So that's what it's like to be interviewed by the New York Post. (For the record, the reporter was SO nice and I enjoyed our 30 minute chat. I'm glad I introduced him to Erin because she was totally the right fit for this story. She's a badass melanoma warrior!)

**On a happier subject, I had the opportunity to chat with Robin over the last few weeks regarding articles for the website cancercommons.org  Talking with Robin, even about melanoma, was fun! She was so great to chat with and it was a pleasure telling her my story. Robin's article was published today and I am honored to be featured as a Super Patient! The article briefly touches on my melanoma diagnosis, why I said NO to interferon, and how I ended up in a clinical trial at MSKCC. Feel free to check out the article here. I encourage you to browse their entire site. There is a ton of important information.

Hopefully only one more time in this chair!

Oh, and by the way, my scans were A-OK! I was totally unremarkable! (The one time I strive to be unremarkable! Ha!) The lymph node remained the same size as it was in January. Scans 3 months in a row? I'm pretty much glowing. I'm so relieved to have a break until May!

I also had my second to last infusion! Can you believe it will be 3 years in May? My liver is apparently feeling it though. I received a call today from the oncology nurse that my liver enzymes--AST--are elevated. This happened after my last infusion as well. Maybe I really  am getting the drug. (Oh, and I promise, I had the bloodwork done last week, before the green beer! Hahaha!) I will go back this coming Thursday to have my labs repeated. Hopefully my liver will heal itself just like last time!

Alright, if you got through all of that rambling, THANK YOU. I'll try to do better about blogging, I promise.

XOXO

A Letter to My Liver

Dear Liver, 

I know I've put you through some trying times. 


There was spring break in St. John: 

There was college:

 There was college graduation in Las Vegas:

There was that year after college...

The point is, I haven't been overly kind to you. 

How should I put it? I was kind of a party girl.

But times have changed, liver.

I behave.

I only indulge in adult beverages on rare occasions...

...such as a very rainy Saturday, NED results, or because there's an awesome band playing that I just have to see.

So, you see, I've matured.

Some.

But now, you seem to be paying me back for all those wild nights.

Elevated liver enzymes?

Why now?

The oncologist said it could be a side effect of Ipilimumab.

My sister would say it's Richmond catching back up to me.

Who knows?

I just ask, dear liver, that you treat me kindly as I do you...now.

Much love,

An Improved Chelsea




OK, now that that's off my chest..

I came home today after work with the phone call from my doctor weighing heavily on my mind. When I went in for blood work this morning I didn't think anything of it. I never do. After being in the clinical trial for 2 years and 2 months I'm used to going to the lab a few weeks after my infusions for routine blood work. I never have an issue. When I got back to my desk today after lunch I checked my cell phone and saw I had a missed call from New York. Only one person calls me from New York: My oncologist (or his super wonderful assistant! Hi Pam!)

When I heard his voice on my voicemail, I knew it was about my blood work. He never calls unless it's to tell me a result or to reassure me that everything is OK. He's all about trying to convince his patients to let him do the worrying. (I know we all still continue to worry, but it sure is nice knowing we have a doctor worrying along with us.)  Anyway, he told me my liver enzymes are elevated. He asked if I've had alcohol lately, if I have hepatitis, and if I've been feeling OK. I answered no to the first two questions, and explained I was really sick last week. He told me that elevated liver enzymes can be a side effect of the drug, and that while we do not know if I'm getting the drug, this is a good indicator that I am. I will go back a week from today and redo the blood work. If my numbers are still at this level or higher, he said we will further investigate. I don't have the slightest clue what that means. I didn't even ask him because I think I was subconsciously hoping I won't need to know.

When I got home I remembered that the research nurse had given me updated paperwork when I was in their office 3 weeks ago. I'm glad I kept it. It says: "about 8-37% of patients have developed serious problems with the liver as a result of ipilimumab treatment. Inflammation of the liver due to ipilimumab can range from mild or moderate (around 1%) to severe (around 7%) and in a very few cases, it can be life threatening. Acute liver failure resulting in death has occurred in less than 1% of patients. However, most severe cases have been successfully treated by stopping ipilimumab treatment and by administering anti-inflammatory medications such as steroids. You should contact your doctor if you experience symptoms that may be associated with problems of the liver that include fatigue, weakness, vomiting, nausea, yellow discoloration of the eye or the skin or abdominal pain. More frequent blood draws and a liver biopsy may be required if you develop serious liver abnormalities."

Apparently this isn't the first time that they have run into this type of situation. It just seems so odd to me that I'm just now experiencing it 2 years and 2 months after beginning the trial! I know they say ipi has a delayed reaction, but goodness! It's a double edged sword though; these results indicate I really am getting the drug and not the placebo. I want to keep getting the drug; however, I don't want to damage my liver!

Hopefully I will go back on Monday and my results will be totally back in the normal range. If not, I know my doctor will find the best and quickest way to make sure they get back to normal. I trust him.

(Again, to my liver, I'm sorry for all of those parties...I sure had a blast!)

I'm a Woman, What Do You Expect?

Women: We get one thing, we want another.

I received a phone call today that changed things once again! A research nurse from Sloan Kettering called and said that I am actually not disqualified from the clinical trial. Since the melanoma was an in-situ, I am still able to participate. I will be closely monitored by my dermatologist, and it will be noted in the research that I was diagnosed with an in-situ 1 year and 9 months after beginning the trial.

At first all I felt was relief! I was not being fired! (OK, I can be a drama queen. It felt like they were saying, Hey! You aren't healthy enough anymore! Get out!) Now I'm wondering what my doctor is going to suggest on Friday. I'm on a clinical trial to see if the drug will prevent melanoma from spreading, yet I was diagnosed with a new primary.

Is it common for melanoma patients to have multiple primaries? Do I continue on this trial even though whatever I'm getting is obviously not working since melanoma showed her ugly face again? Is the drug (ipilimumab) even supposed to keep our bodies from developing a new primary or does it attack the internal organs?

I turned to Google for answers. According to Cancer.Gov, "Risk of a second primary melanoma following diagnosis of a first primary melanoma is approximately 5% and is greater for males and older patients.") Um, I'm not a man, and I'm not old. What does this say about me?

I can't help but remember how "unusual" my doctors said my case is. There's the age factor: my first oncologist was amazed at how young I am, my second oncologist told me I'm his youngest patient. I have no family history. According to my first oncologist, melanoma only had a 10% chance of spreading to my lymph nodes, yet it did. Melanoma was found in lymph nodes on both sides of my body which is apparently very unusual. And now I have this new primary.

I'm a mysterious woman.

I just hope my oncologist has some answers for me on Friday, including boring scan results!

Rash Pathology Report

I received a call from the very sweet--I will be scheduling to see her from now on--dermatologist at Sloan Kettering today. The pathology report of my rash came back supporting the two things Dr. Lee mentioned. Basically, the pathology report was not definitive, except that I have no need to stress.

1) It could be eczema brought on by the drug I am (possibly) receiving. According to the pathology report, it could be possible. She mentioned eczema but then quickly jumped into what she really thinks is causing the rash

2) She believes the rash is caused by the inflammation of capillaries that have ruptured which allows small amounts of blood to accumulate in the surrounding tissues. This is usually seen in children. She said it is usually located on the belly, booty, and legs, but can also been seen on the upper parts on your body. It can also cause joint pain a few weeks before the rash appears. (HELLO, Y'ALL REMEMBER THE PAIN/SWELLING I HAD IN MY HANDS FOR A FEW WEEKS?!! It is completely gone now!) She believes it could be a new response from the drug.

Dr. Lee said I am quite an unusual case so she is going to present it to her group of colleagues on Thursday to hear their opinion. She repeated again that it is usually seen in children so this is unique. She said we may have to do some further testing; however, it is VERY possible we will just let my body heal on its own. She feels certain that it is nothing serious. That is the most important part.

I would post updated pictures of my rash, but quite frankly, I did not feel like shaving my legs today. ;-) The rash IS healing--without medication--but it is still covering my legs. Dr. Lee said that the vessels in legs heal the slowest so she believes it will just take time. I will find out on Thursday/Friday if further testing and treatment is needed.

It will be interesting to see if this happens again closer to my next treatment date!

This is not the first time a doctor has told me my case is unusual. I never do like the sound of that, but at least I make for a non-boring patient, right?

There is always a positive.

Red Velvet Cupcake

Celebrating 

CLEAN SCANS 

with a red velvet cupcake 

in the chemo suite!

Your thoughts & prayers worked yet again. THANK YOU.

More to come later...I am exhausted!

Beauty Marks

I had planned all night to write this special post about a conversation I had on Saturday over green beer. It was good...very blog worthy...and I promise that I will write it soon. (I keep making promises to write more, don't I?) Then I changed out of my work clothes and noticed that my body is reacting to something tonight. These rashes do not hurt, they don't even itch, they just exist.

I have talked to the nurse at Sloan Kettering once about my stomach rash that pops up when I do not feel well, but I have never been so covered in the rash before. It's in 3 different spots on my stomach, on 2 different spots on my right leg, and on one spot on my left leg.

Oh, one of my toenails fell off tonight! Random! I used to have such pretty toenails...

What's going on?!?!! Melanoma friends, do you have any advice? I don't feel sick. I'm a bit stressed out with work, but I feel OK overall. I haven't changed soaps, lotions, foods, etc. It just seems weird that my body is reacting to something in this way. Is there anything I can do to stop the rash from spreading more?

That tan skin sure wasn't worth this.


Pity party over.

Life of a Drama Queen

Before melanoma I would not have analyzed every headache, every low grade fever, and every swollen lymph node. Now, I have been known to call my mother after her bed time, crying, because I have a swollen lymph node while battling a cold. Cancer makes you a tad bit paranoid. OK, maybe a lot paranoid.

My latest freak out is over my hands. I have been having pains in my left pointer finger since November. It would swell and ache for no reason at all and then go away. I would struggle to open a water bottle. Now, the pain is in every single finger. It feels like I am progressively losing strength in my hands. It makes me want to shake them, to wake them up, to do something to make the blood flow again. This morning in the shower I struggled to squeeze the bottle to get conditioner out. Today at work I battled with the old stapler. It hurts to bend my fingers. It hurts to stretch my fingers. There is no making it feel better. My hands ache, friends. They ache!

I would not freak out about this if I had not also been experiencing such bad headaches lately. I KNOW that I need to go to the eye doctor (it's on my to do list for next week) and I know that I stare at numbers and a computer all day, so having a headache is honestly not that surprising. I don't know if I wait too long to take medicine to fight the headaches, but I become dizzy at times as well. The combination of a headache, the dizziness and losing feeling in my hands is causing me to go a little batty.

I needed advice last night. I don't often post on the Melanoma Research Forum because I feel like there are so many other people that have genuine needs and advice. I am--luckily--in a stage with this cancer that I do not need too many questions answered. Last night, however, I needed advice. Those folks, as they have in the past, helped me. They linked me to a website that list side effects of ipi (yervoy) and sure enough, numbness of hands and feet is on the list. (PS, Mr. Spots, now I have an excuse as to why I am cold all the time lately--I am usually hot--It's a side effect!)

I, then, had a nice little pity party for myself on Facebook. I was upset because the fear lives within me. After Randi passing away last week, my mind played games with me. About six years ago, Randi was in my shoes. She was beginning to live a life with stage III melanoma. Now, she's gone. Fear.

I am so grateful for melanoma friends on Facebook because despite my pity party, they came to my rescue with support, love, and suggestions. It was brought to my attention from someone actually receiving yervoy--for sure-- that weakness/tingling/numbness/aches in the hands and feet are actually a side effect of ipi (yervoy). Well. I was not aware.....

My oncologist, The Wizard, questions me about my hands and feet during every appointment, but I just assumed it was because of all of the nerve damage I have in my neck/arms due to the surgeries. I did not realize it was a side effect of the drug. Maybe this very uncomfortable pain is not such a bad thing after all....

Still, because the pain was getting to me emotionally and physically, I called my oncologist today. I was unable to speak to him, but the nurse (not my favorite research nurse, just a normal nurse) indicated that there may be a need to add a head CT to the next set of scans on the 20th. I am supposed to hear from my oncologist on Monday. I would assume that because headaches and numbness of the hands are both side effects of the drug, my doctor will pass on the additional CT unless my blood work is suspicious. I trust him.

Sometimes I have to give into the fear, throw myself a pity party, then realize I am being ridiculous.

Maybe I really am getting the drug after all...........



(However, if you wouldn't mind throwing a prayer in that the joint pain and headaches are nothing serious, I would really appreciate it.)

Chemo Suite, Modeling Experience, & A New Battle Wound!

Well, round 3 in the double blind Ipi trial world came & went with few complications (minus some missing skin...more on that later!)

Mom & I headed into the City Thursday night for a little exploring in SoHo. I really do love that area. You see such a variety of people, shops, and restaurants. I can see why people want to live there. Plus, it was an absolutely beautiful night. There was a slight breeze & NO mosquitoes. The lack of mosquitoes was very exciting for me since they have been so horrible here on the Eastern Shore. After doing some minor shoppig, we headed to Little Italy for dinner.

Little Italy:

The one place where it is still

socially acceptable

for the men to sweet talk the women while

standing on the side of the street.

We had dinner at Angelo's.

Oh, and wine.

One glass...or two...

won't kill me.

Friday morning, July 1st, we woke up early and headed back into the City. We stayed at The Westin again in Jersey City. It is my favorite hotel that we have stayed in since our trips to NYC began in March. (March? I don't even remember!) It is pretty, quiet, clean, and the beds are called "Heavenly" for a reason. I would suggest the hotel to anyone.

I made sure to eat a bagel & drink some juice before my meeting with The Vampires. After my first Ipi round, I learned quickly that losing 16 little tubes of blood makes you feel loopy. As usual, my hand had to warmed before my veins would cooperate. Then I started discussing Vegas with the nurse & quickly forgot I was being drained of blood.

My meeting with my oncologist, The Wizard, was uneventful. I updated him & his nurse Mary on the updated symptoms (including the random white hairs!) and they both seemed excited that it seems likely I am receiving the drug. They warned me that round 3 is when people get hit with the most side effects. Guess we will see what happens!

The Wizard re-examined the left side of my neck due to the swelling & pain I am still experiencing. He said that we could do my scans early; however, he's hesitant to subject young folks to more radiation than necessary. Since I am already scheduled for scans in the beginning of August, we are going to wait. Like we have discussed before, I have had so much trauma to my body in a short span of time. It is no surprise I am experiencing such pain & nerve damage. He put me on a medicine specifically meant to help nerve damage. (I will fill in the name of the medicine when I go home. I don't have the bottle with me.) I haven't started taking it yet. I wanted to be home since ya never know how medicine can affect you.

After verifying that my blood work was wonderful & healthy, I headed into to the Chemo Suite. Although I had a different nurse this time, I got to see the spunky nurse from the last session. She is a spit fire! Love her attitude and that she remembers her patients. That is important to me.

All cozy & comfy in my little room. I have had the same room all 3 sessions. I'm a girl who loves routine, so this makes me happy.

Following the 90 minute infusion & 60 minute observation, I had an appointment with a dermatologist. I am trying to think of an appropriate Blog Name for him. When I first started this blog I felt like it was safer (and more fun) to use nicknames rather than their real names. I would never want to offend any of them. Let's see....the dermatologist at MSK will be called... Dr. Maggooo. Why? Because it is close to his real name & I am not feeling creative. Mom & I both really liked him. He asked for me to describe the last few months for him, then asked why I made the appointment to see him. I said, "Well, it is time for my 3 month check-up...and I'm paranoid!" He laughed. (I think I amused him...He either thinks I am ridiculous or charming. I don't think there was a middle ground.)

He asked me to point out a few of my concerning areas before he examined me. There was one on my belly & one in my scalp that had been worrying me. Then he began his full body examine. Boy, he was thorough! He moved my hair all around so he could fully examine my head. He spread my toes apart so he could check in between them. (And there were some other awkward moments but I won't explain those...) Let's just say, I have never been so thoroughly examined! He came across one mole on my right arm, looked at it, felt it, looked at it again, and said  "Has this always looked like this?" Unfortunately, no. It had started to get darker. He said, "yeah, let's biopsy it."

Dr. Maggoo then had a nurse come in to take full body pictures of me. Let me tell ya....AWKWARD! I won't even go into the details because thinking about it makes me feel bashful. The point of these awkward pictures is to monitor my moles. They will send me a book with the pictures so that I can keep a close eye on my skin. Pretty smart, huh?

After the awkwardness passed, another doctor took me to a room with this odd looking machine. I will post a full blog about this later, but basically the machine is better than an ultrasound because it allows the doctors to see my cells, etc. It is an non-invasive way of seeing if a suspicious area needs to be removed. Dr. Maggoo said, "You are seeing tomorrows technology today!" There are only 10 of these machines in the United States & only 40 in the world! Pretty impressive. There were 6 doctors in the room...I knew it was new technology when that many doctors crowded into a tiny room. (Totally felt like a lab rat...but a cool lab rat!)

Here is the suspicious mole--it looks funky because the machine left a ring around the area:

It was tiny! But, it was raised & black.

Two days later, I took the bandage off. My skin is so sensitive...the bandage gave me a little rash. The spot where he removed the mole is tiny but it is sore. Who knew something so small could be so sensitive?! The location of it--on the inside of my elbow--makes it very sensitive. The stitches will come out in 2 weeks. I will receive the pathology report in 7-10 days.

So, that's what is new in my world...16 tubes of blood, 3 hours in the chemo suite, 2 hours and 15 minutes with an outstanding dermatologist, and a little tiny bullet hole...Sounds like enough drama for one Friday to me!

Again--thanks to everyone for the messages, comments, and phone calls. Your support means so very much to me. XO!

"Isn't it ironic? Don't ya think?"

Dad: "Are you going to New York tomorrow?"

Me: "Yes."

Dad: "For what? It's time for treatment again already?"

Me: "Unfortunately..."

 Seriously, the last 3 weeks have flown by! I had to laugh today. My friend John emailed me, I am assuming he read my last blog post about being so exhausted, and he said, "At least you will sit still while they have the needles in your arms!" That is one way to keep me in place!

I started to feel pretty rough today. Like after the last treatment, my neck is really becoming painful again. It is swollen, sore, and feels like the nerves in my neck are trying to crawl through my skin. Have you ever had an itch underneath your skin? It is A-N-N-O-Y-I-N-G. No matter how much you scratch in the itchy area, it continues to itch. Today my neck felt like someone had their hands on both sides, slowly squeezing. Uncomfortable!

ANYWAY....

It has been a while since I have shown y'all my "bad ass" scars. I had Mom snap two updated pictures of my most visible scars. (Remember...I had one surgery in January where they sliced and diced me in 5 areas: both sides of my neck, both armpits, and my back.)

Here is my back directly following the surgery in January 2011:

And here she is in June 2011:

Looks better, huh?

Here is the right side of my neck following the SECOND surgery---full lymph node dissection:

Here is Ms. Neck Scar today:

Dr. Adorable at Sloan Kettering did a freaking awesome job on this. I realize it still is not pretty, but I am not ashamed of it. I feel like it blends in fairly well...considering!


Although my scars are still noticeable, I am relieved I heal fairly well. Every time I see a tanning bed whore (I should come up with a more polite term for them, buuuuuut they make me angry...) I want to shove these pictures, and all of the other pictures from where I was cut on in FIVE locations at ONE time, in their faces! Today I logged onto Facebook and saw a girl had changed her profile picture. The very first thing I noticed was her white line under her chin. I know that line. I used to get it after spending too much time in the tanning bed. Sure, she looked pretty in her picture, but all I saw was her ignorance. Man, if I had known better, would I be in this situation today?


I read an article today (read article here) that begins: "Just because someone is college-educated doesn’t mean he or she is cancer smart." How true! I am not an idiot. I did well in college, I graduated from college, etc. Still, I visited tanning salons every once in a while. Ironically I tanned to prevent a burn...Mistake! But still. I wanted to look good! I associated being tan as being attractive. No, I never let myself go crazy with the tanning, but I had what I considered a healthy glow (I cringed as I typed that...) during the summertime thanks to my visits in the tanning salon.


This article makes an outstanding point...

"It’s ironic, said Morris Hospital oncologist Dr. Nafisa Burhani, that women work so hard to get a tan to look better, when melanoma can leave its victims so disfigured. Melanoma is a skin cancer that is very invasive, she said. “Melanoma can be very disfiguring,” Burhani said. “You need a wide excision area that can result in disfigurement. It can get ugly."

If I had to choose between my old, healthy, pale body or this new sore, scarred, and not-that-healthy body, I would confidently walk around being the palest chick on the East Coast!

My scars are a constant reminder that I need to continue to fight, strive to make others realize the seriousness of this unpredictable disease, and they remind me that even on my weakest days, I am much stronger than I had ever imagined.

OK, I leave for NYC tomorrow morning. I better pack my suitcase! You never know who you'll see in the Big Apple!

Ahoy Yervoy

It is official. I have enrolled in the Yervoy (or better known as ipi trial) trial at Memorial Sloan Kettering.

*I will give a full report of my latest NYC trip tomorrow...Too tired tonight!*

What is Yervoy? (Yeah, it does not sound like english to me either.) To briefly break it down for you...

Ipilumumab is an antibody that activates the body's immune system to fight melanoma. As someone said to me today, your immune system can really "stick it to melanoma." Hopefully that will be the case. Side effects can vary greatly, which makes sense if you think about it because the human immune system varies from person to person. No two people will respond the same way. "The most common side effects of ipilimumab occur in the gastrointestinal tract (such as diarrhea and inflammation of the colon) and the skin (such as rash and inflammation of the skin). Less frequently occurring side effects include hepatitis, inflammation of the pituitary gland (hypophysitis), eye inflammation (uveitis), and kidney problems (nephritis). Side effects occur in up to 84% of patients but are generally mild and treatable." I will be in close, close contact with The Wizarad and his staff. If there is anything that causes them to raise their eyebrows, they will evaluate me and see how to handle it.

Ipilimumab was FDA approved while I was in the hospital a few weeks ago. The approval of this drug is major. (As in...my surgeon had tears in her eyes type of major!) According to Richard Pazdur, MD, director of the Office of Oncology Drug Products in the FDA's Center for Drug Evaluation and Research, prior to Ipilimumab, there were little treatment options available for patients with advanced melanoma. There were no options that prolonged a patient's life. *Now do you see why the FDA approval of Ipilimumab is so major?!


Here is what will happen:

On May 6th I will head back to NYC for another CT Scan & brain MRI. If all is well, I will return to NYC on May 20th for my first treatment. I will meet with The Wizard at 9:15 to have labs completed that will assure I am healthy enough to go forward. I will give both a blood & urine sample. They have to make sure all is OK---and that there are no buns in the oven--before sending me to the "Chemo Suite." 

Yes...they will be giving me a preggo test at every appointment. Nothing like a good ol' safe sex talk in front of my mother...

After The Wizard clears me, I will head over to the next floor---the "Chemo Suite." I will be hooked up for 90 minutes. Once I finish my cocktail-by-iv, I will be observed for an hour to make sure nothing dramatic happens. Then I get to go home. This will happen once every 3 weeks for 4 infusions. I will be scanned every 12 weeks to see what is happening inside of me!  After the 4th infusion, I will go on a 3 month schedule for 3 years.

Good thing I like New York City, right?

Here is the tricky part about this trial: there is a 50% chance I will receive the drug. There is a 50% chance I will receive a placebo. I will never know for sure which I have received. The doctors will never know for sure which I have received. Sure, we can guess by the side effects, but no one will ever directly tell us.

Why am I doing this even though there is a chance I will receive a placebo? For starters, there is a 50% chance I could receive the drug...the drug that is being proven to help advanced melanoma patients. Even if I do not receive the drug, I will be closely observed for the next 3 years. God forbid the cancer advances, we will know right away.

The Wizard spelled it out for me today: "You have a hard decision to make. You are stuck between a disease that can lead to mortality or you can try a drug that could lead to mortality. Unfortunately we know that the recurrence rate of advanced melanoma is high...If it comes back, and you have done this trial, you will know that you have done everything you could possibly do."

Isn't that why I did the surgery? (Which I totally do not regret.)

I am a fighter. I think that is the one thing in my life I know I am good at. So, I am going to fight. Yes, I am dedicating 3 years of my life to this trial; however, 3 years is nothing in the grand scheme of things.

Once I get through the 4 infusions, I will be able to return to my normal life. (I am looking forward to that!) Thanks to my amazing doctors, friends, and research, I know that choosing to do this trial is the absolute best thing for me.

You gotta do what you gotta do sometimes, right?