Drama Girl

My doctor goes on vacation, I find a new melanoma, drama erupts! What does he expect? For me to behave while he's gone on a much needed vacation? Ha! Teasing, Dr. D., I could have done without that experience.

I wrote about how I received the phone call from Sloan Kettering stating that I was no longer able to participate in the ipi/placebo clinical trial since I had new evidence of disease. Yes, they were told by my dermatologist that it was an in-situ melanoma. Still, kicked out of the trial, the nurse said.

The Monday that my doctor returned from vacation the same nurse called and said that it was determined that because my new primary was an in-situ, I am not disqualified from the trial. 

I was confused about what I wanted to do. I was relieved because I wanted to continue the trial for the reasons I mentioned the other day. I was worried that I needed to do more or that it wasn't worth my time.

Like always, my oncologist helped answer my questions.

When I was waiting in the room for my appointment, my oncologist stuck his head in the room & told me that my scans were clear. Because he knows his patients, he knows I can't relax until I hear the results. (Yes, he also knows he has me spoiled & that the moment he doesn't come in before my scheduled time, I am going to know something is wrong. We've set up a bad habit, but I love him for it.) Then I met with the head research nurse who I had only heard about from my friend Julie. I mentioned to the nurse that I had not met her before, and she said, no, but I know who you are! Apparently, I caused a bit of drama with the doctors at Memorial Sloan Kettering last week. There was apparently a 4 day debate about whether I should be allowed to continue the clinical trial or not. I'm not sure who stood where or why, but it was ruled that because an in-situ melanoma is not invasive, I should continue as planned. The drug is designed to treat metastatic disease and has no control over new non-invasive melanomas which is why we must keep our scheduled appointments with our dermatologists! (Remember, early detection IS key!)

Because the research nurse has a lot of experience with folks on this trial she was able to answer a lot of my questions and provide me with information I had not heard before. For example, remember that weird facial swelling I had on a few occasions after my last infusion in December? Although rare, has seen that in other patients. The joint pain in my hands, normal side effect. The inflammation of my lymph nodes 2-3 weeks after every single infusion = totally expected.

See, these were all things that no one had really talked to me about. I don't call with problems, but I've called Sloan (and headed to my local oncologist in tears) after almost every infusion regarding the swelling. Finally, someone tells me to expect it!

When my oncologist came in for our appointment I jumped up to hug him and told him he's no longer allowed to take a vacation. He said he knows, that when he goes away, I cause trouble. We started chatting later and he said that while his much needed vacation lowered his blood pressure, he couldn't escape wifi so he checked his email. "Every time I checked my email I had 60 new emails & 20 of them were about Chelsea Price!" Oops.

I asked him point blank if he thinks we should continue what we are doing and he flat out said yes.

There was no debate.

Yes, continue what we are doing. In May 2013, it will be 2 years since I started the clinical trial & we have a year to go after that. None of us know if I am getting the drug or the placebo, but whatever we are doing is working for me at this time. I can't risk changing that.

I headed into the Chemo Suite 2 hours behind schedule only to have a nurse that my veins are not used to. Boy, after the lab folks having to use 3 veins for blood and the chemo nurses using 3, I was mildly annoyed.

 

 Sorry, doctors, that I caused a little confusion, but hey, that's why you earn the big bucks, right?! (Best story I heard: Julie asked her doctor how he does this--delivering the bad news--every day. He told her that he does it with hopes of delivering good news! *OK, I may have that a little wrong, we did split a bottle of wine, but that was the main point. He's there to give us our lives back.)

Speaking of Julie......... Not only did I get some QT in with my mom, I also got to visit with Julie and her mom! Remember Julie? (Please continue to pray for her.) We had dinner in Little Italy & laughed, laughed, and laughed! Seriously, the waiter kept laughing at us laughing! There were extra long hugs, maybe a few blinked away tears, but mostly there was laughter.

A good trip, answers to my questions, and meeting up with ladies I admire = one great week.

Have a lovely weekend, friends!

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!

Let it Be

I can hardly believe that in 2 weeks from today I will be back in New York City for my next round of scans and treatment. My months of freedom just fly by! As always, scanxiety is starting to hit. How am I focusing this nervous energy? Well, I have been writing for Everyday Health, I have been working my butt off at my office job, I have been attending yoga once a week (Love it!) and I have been going to the gym. Needless to say, I sleep well at night out of pure exhaustion.

I know I can't change or predict what the scans will show. I can only wish, hope, and pray that life will continue on as it has been going. Like Jason Mraz sings, I can't worry my life away.

I hope you are all doing well. Were you wearing your sunscreen in the hot weather today?! I sure hope so!

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.

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!

Don't Lose Hope.

I was talking to my Grand Mother today when she mentioned that my Great Uncle sent her an article for me to read. He believed that I would find it encouraging. I randomly (or not so randomly, I guess, because what else do I do when I am bored?) logged onto Facebook and one of my fellow melanoma warriors had the article posted to her page.

It discusses a woman from Virginia who was told she only had 6-8 months to live, but due to the recent progression with clinical drugs for melanoma, she is still here. Of course she is not cured of melanoma, but the drug has given her a life again.

Read article here: http://www.bloomberg.com/news/2011-05-25/roche-leads-deadly-skin-cancer-turnaround-as-dozen-drugs-coming.html

I chuckled when I read that the president of the American Society of Clinical Oncology said, "“Being a melanoma doctor is not unlike being a Chicago Cubs fan." I know many of my doctors would agree. It is obviously frustrating to them to see such a deadly disease remain incurable. BUT, thanks to all of the researchers, volunteers, and doctors, progress is happening! The president said, " “This is a sea change for the melanoma guys.” A sea of change that we so desperately need.

My Great Uncle was right about the article, by the way, it encouraged me. Slowly, there are becoming more options for us melanoma warriors whereas there used to be only 2.

Protect your skin, friends.

And my dear melanoma warriors, don't give up the fight.

The Sun Will Come Out Tomorrow

Have I mentioned lately

that melanoma really,

truly,

freaking sucks?

I can normally spin things in a positive tone, but I am physically and emotionally exhausted tonight. If you catch me sounding bitter and sad, tonight I am. I hate cancer. I hate, hate, hate it.

Let me explain my grumpy attitude...

We headed over to Sloan Kettering at 9:00 this morning to have my labs drawn. Although my appointment was not until later, they needed my morning levels. It started off well enough. The nurse called me into the room right away, I did not even have time to sit down. I liked not having to wait! She took my blood pressure---which was normal---and my temperature which was also normal. Then the little lady (and boy, she is TINY!) sits me down in the chair to draw the blood out of me. No one warned me just how much blood she was going to take. As she pulled tube after tube out of the drawer, I started to panic. Was that all for me? 16 tubes for MY blood? What are they? Vampires?  The poor vein she used in my hand did perfectly until tube number 12. It had had enough and refused to give her any more. In goes another needle to another vein. Ouch. Talk about feeling like a zombie...I walked out of the Outpatient Center thinking I was either going to fall asleep or simply pass out in the middle of the road. Loopy! Once I had some food and juice, I felt a little better. 

Since we had some extra time, we headed over to Barnes & Noble. As always, being surrounded by books made me relax. I felt a little less zombie like after rooming around the books. (PS, I am reading Elizabeth Gilbert's new book. Has anyone read it?) 

The meeting with The Wizard was quick and easy. He did notice my left swollen shoulder as soon as he started to examine me. I told him that I have been having pain and that the swelling began on Monday. He told me that we should not freak out yet, that my body has been through so many surgeries and trauma. He told me to give it a few weeks since I just had the CT Scan on May 9th and everything was fine. 

Then it was time for the ultrasound to determine if we should worry about the thyroid nodule that turned up on the last neck CT scan. I knew not long into the ultrasound that something was not right. The tech's mood changed. She continued to focus in just one area. I have had my fair share of ultrasounds, I knew this one was lasting a while. When she excused herself to have the radiologist take a look, she told me to relax. I laid there for about 15 minutes and then in walks a woman. "Hi, Ms. Price. I am Dr. Lee." Warning bells....a doctor came to examine me? After she started to do the ultrasound herself, I said, "So, I am assuming you saw something?" She said, "Yes, I see two concerning things." She told me that she sees the thyroid nodule that they were concerned about, but she also sees "something." She said she could not get a clear enough picture to determine if it is a tumor or if it is just a group of lymph nodes. She continued to examine me for a few extra minutes. I silently laid there, holding back tears. I was grateful that if Dr. Lee saw the few tears that sneaked out, she did not mention it. So, what does this mean? It means I get to be jabbed in the side of my neck with some needles to find out for sure what is going on. It will give us a definite answer. Dr. Lee is supposed to talk to my oncologist, The Wizard, and get back to me next week. Oh, reminder..I did have one lymph node tested from the left side of my neck back in January. It was negative for melanoma. Obviously something is going on, let's just hope it is nothing major. Dr. Lee was not exactly the most uplifting or reassuring doctor I have seen at Sloan Kettering. In fact, she was the opposite. However, I am going to try to cling to my faith...(Please pray it is not a tumor. Please....)

Did I mention that the ultrasound was completely uncomfortable? I am still recovering from surgery on both sides of my neck. My nerves are still recovering from the trauma. It hurts for my boyfriend to touch my neck. Think about a technician who has no sympathy! It was painful. I am very uncomfortable tonight. Very.

Because of the ultrasound discovery, I was unsure if I would still be allowed to begin the trial. Luckily, I was! Although there were no super handsome male nurses, I had a wonderful nurse named Bridget. She was not pushy. She wasn't overly excited. She was mellow, sweet without being too sweet, and quiet. She was my favorite type of nurse. 

The view from my "Chemo Suite."

Because my veins were unhappy from this morning, they did not want to cooperate. Apparently if you warm up the arm, your veins become easier to access. 

That seemed to work! Once she got the IV in me, the 90 minutes began to tick. Every 30 minutes, the nurse came back into my little suite to check my vitals. Each time she came to see me, my blood pressure was decreasing. When it got down to 103/54, the nurse called The Wizard's nurse, Mary. Mary told Bridget that she was not "too" worried, to give me something to drink, and continue to monitor me. Poor Bridget, I think she thought I was lying to her about feeling fine. Sure, I still felt lightheaded, had a bit of a headache, and was exhausted, but those 16 tubes of blood kicked my booty! Bridget just kept saying, "are you sure you are feeling OK?"

After the 90 minute infusion, I had to be observed for an hour. My blood pressure continued to rise back to normal. Soooooooooo weird....

At 6:00 tonight I was finally free to leave. I have never been so happy to see a hotel room.

Today was a hard day on me...physically & emotionally. It reminded me that things can change in moments. I am going to pray, hope and wish that the biopsy will calm my fears. Until then, I am going to regain a positive attitude. 

After all, the sun will come out tomorrow.

"Oh! Oh!"

Sometimes I should not be let out in the public. Today was one of those days. I woke up this morning, got myself ready, and Mr. Spots took me to the airport. Being the best boyfriend ever, he came inside  (against my demands of him going home to rest) to spend a few extra minutes with me. As I was checking in, I was informed that my flight was delayed. Bummer. So, Mr. Spots and I hung out in the restaurant for a bit, chit chatting, enjoying our last few minutes together. I figured I would head on back to my gate close to my flight time just in case they decided to leave on time. Good thing I did! After being rushed through security, forgetting to remove my shoes, and being yelled at for forgetting said shoes, I headed towards the gate looking forward to a few minutes to organize myself before boarding the flight. As soon as I sit down I hear, "We are now boarding Zone 2." Wait...It's only 10:10. They said my flight was delayed until 11:15! Good thing I left Mr. Spots when I did...

I have been on some small planes before, but holy cow...this plane was unusually small. I had to put my feet on my laptop case and purse. The plane was definitely made when people were much smaller than they are these days... Flying was wonderful. A 90 minute flight was much more pleasurable than the 5+ hour car ride. I was concerned how I would feel after flying. I feel fine. I am still having the shoulder pain I discussed with Dr. Glinda, my surgeon, yesterday. Mom said it looks like fluid. I will have The Wizard take a look tomorrow...


Amazing news in terms of spreading awareness! My sorority, Alpha Sigma Tau, has a national magazine called THE CREST. The editor, a lovely lady, emailed me yesterday asking if I could put together an article by this weekend. She said that she thought my story was something our Sisterhood needs to hear. I could not agree more! I spent last night quickly writing an article for the magazine. It sure is hard to say everything I want to say in one article. Thank God for this blog... ;-)


Back to this latest trip, I met Mom at the hotel. We are staying again in Jersey City since the hotel prices are significantly cheaper than in the City. Plus I sleep better...Maybe I am not cut out to be a city girl after all! I value my quiet time a little too much. We were too tired to go into the City tonight so we decided to take the train down to Hoboken. Mom had been talking about Carlo's Bake Shop for the past few trips, so we made the decision to finally go. Wow, what a busy bakery! 

Mom & I decided on red velvet cupcakes, carrot cake cupcakes, and 2 cookies. I have had one of the red velvet cupcakes and here's my verdict: Cake Boss is famous for a good reason. They are DELICIOUS! Nom...nom...nom! Lisa, one of the sister's, was at the bakery, and came out to thank everyone for coming in. She was very nice...very normal. 

Mom and I decided to head back to the hotel since tomorrow is going to be such a hectic day. There we are, standing on a side street, waiting for traffic to clear, when I make eye contact with a man on the other side of the street. He smiles. I smile. And then it hits me....

"Oh! Oh! Oh!" I point over him. He raises his arms like, "Yeah, you got me...it's me!" Mom sees where I am pointing and says, "Oh my God! We were just at your bakery. We hoped to see you." Buddy, the Cake Boss, walks on over to us, thanks us for our business, and agrees to pose for a picture. (Yeah, we were those people...) Mom was just going to take the picture, but he insisted his friend would take the picture and the three of us could all be in it. 

Cake Boss!

I have nothing but kind words for him. He could have easily ignored us, but he didn't. You're a nice guy, Buddy! ;-) (And I was a total starstruck ditz! Sorry, I normally can make words! I swear!)

After we walked away, Mom & I looked at each other and began to laugh. If anything, we expected to see Buddy at the bakery, not on the side of a side street! How random. It made it even more fun.

So, tomorrow..........here's the updated schedule for those interested:

I have to be at the outpatient center by 10:30 for some blood work. They need my morning levels before I can start the trial. Then the schedule is the same. 12:15 appointment with my oncologist, The Wizard, 1:00 ultrasound (nervous!) 2:00 Day 1 in the "Chemo Suite." I expect I will be there until 5 PM or so. It is going to be a very long day for us. 

The messages, comments, texts, and phone calls I have received today have meant so much to me. I am nervous, yes, but I know that I am in the care of awesome doctor's who will make sure we make the right decisions for my body. I am confident in that. 

I can do this. After all, I am a fighter. 

Wear sunscreen. XO

Leavin' on a jet plane!

Well, it is time to begin another journey. It is hard to believe the Yervoy trial will begin on Friday! I feel like I was just there, deciding to enroll in it. I am going to have faith that this was the best decision for me...even if I do get the placebo!

My schedule for the next couple of days is a tad bit busy.

Tomorrow: Fly to New York.

Friday: 12:15 meeting with The Wizard to make sure I am healthy enough to begin treatment. I also need to talk to him about this new knot on the top of my shoulder, located directly under my scar. Fluid? Lymph node? Regardless of what it is, it is very painful. Very painful.

1:00 Ultrasound to see what is going on with the mysterious thyroid nodule. Pray it is nothing serious.

2:00 day one in the "Chemo Suite." The infusion lasts 90 minutes, and then I am observed for an hour afterwards. It will be a long day.

As you read this post, I am asking you to send good juju to my new friend Julie. She has her full lymph node dissection tomorrow morning in New York. Her surgeon is actually my surgeon, Dr. Glinda! I know she will take special care of Julie, but pray her nodes are negative for melanoma and that she has a speedy recovery. People keep reminding me that prayers work, and I am seeing evidence of that.

I am a bit nervous tonight...anxious.

Let's get the show on the road & kick some melanoma ass!

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?