This post is long overdue but I have an update regarding the trial.

I was supposed to start Day 1 of the trial last Friday. In fact, I took the day off of work, drove an hour and a half in rush hour traffic to Boston, got there and then- NOTHING (aside from paying the $9 parking fee). They sent me home because they did not have my study drug. They realized this 30 minutes prior to my appointment. I do not blame my doctors or nurses, it’s actually the fault of the drug manufacturer. So this is what went down:

This trial is a placebo controlled randomized double blind study. This means that the medical professionals directly working with me and I are not supposed to know which set of drugs I am taking (medication A + medication B or medication A + placebo). That being said the bottles cannot be labeled as to what they actually are. The drug manufacturer accidentally sent labeled study drug to Dana Farber so Dana Farber asked them to collect their supply and redistribute with appropriately labeled bottles. Consequently, the drug manufacturer collected ALL of the study drug including the supply at MGH (even though ours was appropriately labeled).

Communication stopped there. Nobody bothered to share that the medication was collected so my doctor and research nurse had no idea until they went to retrieve it for me. I was not pleased. I drove another hour and  a half home fuming.

I’ve been pretty calm and collected, perhaps even a bit too relaxed regarding starting this study. Regardless, there is a level of “amped up” that one must be walking into Day 1 of something unfamiliar. Like any other treatment I have undergone, there are unknowns. Not knowing how I’m going to feel, not knowing if it will work, not knowing how taxing the regular testing will become are all reasons that you need to put your game face on heading into a trial. It is not on my mind all of the time as I try to maintain my life with normal activity like family, friends, work, exercise (and Netflix…obviously) but when I am at the hospital it becomes real.

As of right now the trial is set to start on Wednesday, June 4th. The plan is to have a blood test, take the first set of pills, wait an hour, EKG, home. Hopefully it will go a bit smoother than my last few visits have. Fingers crossed.

On a lighter note: It’s my parent’s 32nd anniversary this weekend 🙂 Happy Anniversary to a couple that can face anything together.

I have been slow in updating my beloved blog because I still do not have internet in my new apartment thanks to the incompetency of Cox Communications as a whole. For a service with “communication” in the title, it does not seem as if they are very good at that part. Needless to say, I’m still living in colonial times. I have re-watched almost every DVD I own and read a lot (not a bad thing at all).

Trial Update:

Last Thursday I took the day off from work and headed to MGH in Boston for preliminary testing for the trial. It seems like I’m a good fit for this experimental drug but they need to get baseline readings in a few different areas to be sure. I took the commuter rail in and went by myself (pauses- bracing myself to get pelted by the garbage of angry friends and family). I am silly. I should have just let someone come with me but I thought I would be in and out of there in 2-3 hours. It seemed foolish to have a friend take off a day of work for something like that. It turned out to be an entire day’s process of being poked and prodded. I should have brought a friend at the very least to gossip with in between tests.

The first part of the day was meeting with Dr. Birrer. He was very personable, knowledgeable and had a good sense a humor. Having a good sense of humor is a key factor for me. My nervous inclination is to crack jokes; I need someone to keep up with me. The research team was also a nice crew of women with whom I think I will get along well. Dr. Birrer elaborated on the science behind the drug, risks and benefits. He explained that this drug is different than traditional chemo because it is a much more targeted therapy. With traditional chemo, it basically targets every rapidly reproducing cell in your body hence why your hair falls out with Taxol. This therapy is targeting very specific molecules so hopefully this means that I will tolerate it a little better.

After meeting with the doctor I had five vials of blood taken from my chest port. I always remark on how weird life becomes after cancer because seemingly unpleasant situations can be perceived as good news. Example: 5 vials of blood were taken from my chest port. In normal world the thought of a half inch needle plunging into your flesh a few inches below your color bone to suck out your blood sounds pretty damn awful. In cancer life this is always good news. Nothing is more obnoxious than going through the trouble of getting a port to realize that phlebotomists and some nurses are not qualified to access a port. Then they need to dig around my tiny veins until they find something that works and this usually ends up being in my hand. Needless to say I was borderline giddy when the nurse was about to access my port.

After the blood draw I had an EKG which was quick and uninvolved. Then I was sent a few blocks away to an eye doctor for an ungodly amount of testing. This is where my patience really started to taper off. I read eye charts, identified colors, stared into blinding lights, did a peripheral vision test, and had a glaucoma test. Now this glaucoma test wasn’t the usual sucky puff of air. The way they conducted this test was BULLSHIT and I hated every second of it. They first NUMBED your eyeballs with eye drops. If you haven’t had this done before, it feels extremely weird and certainly unnatural. You can still see but your eye lids feel really heavy. Then the eye doctor goes “just look forward, this will only take a second”. Then all of the sudden what looked like a giant ball point pen was coming straight toward my pupil. Naturally I looked away. If my eyes could talk they would say “DANGER! DANGER! FLEE!.” After a serious internal pep –talk I allowed this giant ball point pen looking tool to TOUCH my pupil as I looked straight at it. I had the same feeling of fear that I would likely have staring down the barrel of a gun. I have to say, that was worse than the anticipation of the air puff. I feel that the optometry field is really going backward on this one. I think they are developing this technology just to mess with us. It’s a sick joke.

I did speak a little bit with the optometrist about the implications of MEK inhibitors on one’s vision. It is a legitimate and serious concern. There is a single case documented of retinal vein occlusion in a different MEK study. This means that there is a blood clot in the eye that prevents blood from feeding to the retina. Nerve cells in the retina can die which can result in loss of vision. This has only happened once and there may be other complications that lead to this but it must be disclosed to the patient (me) nonetheless. More commonly, patients experience little pockets of fluid that build behind the retina causing blurred vision. The optometrist said that typically the protocol is to stop taking the medication temporarily and in a week’s time it corrects itself. This happens in “most patients” according to the optometrist but I will have this battery of eye tests about once a month so they will monitor any changes in the eye carefully. All in all this battery of tests took 2 hours.

A critical piece of information that I was not prepared for was that my pupils would be dilated. I left the eye doctor basically blind. Thank goodness I took the train and not my car! My eyes were insanely sensitive to the light and anything up close would not focus. This made finding my way back to the hospital on my own and selecting a lunch option nothing short of an “adventure”. At this point my nerves were shot so I did what any rational adult would do. I sat down on the ground in front of the hospital, called my parents, and cried. I specifically said to them “I know this will be funny tomorrow but right now it sucks”.

The last stretch of the day was the Echocardiogram. I was supposed to have this at 1pm but because the eye exam took far longer than the research coordinator had planned for we had to reschedule it for later in the day. They echocardiogram was finally performed at 4pm, a half after the rescheduled appointment. It was annoying to wait so long but I got in, the technician was lovely, and that’s all that matters. I was on a train back home by 5pm and home by 6:30pm. LONG DAY.

In addition to these tests I was supposed to have a CT scan but the stars did not align and we were unable to fit it in so I had to have it in Providence the following morning before work. Sheila, my faithful friend and looker-upper of medical records, informed me that my CT scan results were stable. This means that there was no new growth. In fact, she said that the nodule near my diaphragm was a lot smaller than a few weeks ago! This is amazing considering that I am on NO medication or treatment regimen right now. I’ll choose to take it as a sign that things are starting to look up for me.

I begin the trial on May 23^rd and promise to bring a friend or family member to the next appointment.

In other news I spent the last few days on the Cape with my parents and brother which was MUCH needed. Here are some highlights:

These people you see here have been through so much. So much more than any family should have to. Even though it’s not always easy for any of us, I hope they know how much their love and support means to me and how much I love them in return.

The past few weeks have been a blur. I feel like I’m constantly running from one obligation to the next. At this point I just want to lie down in my bed and sleep and read in silence. I’m becoming a bucket of fun at the ripe age of 26 eh?

Health Update:

The last time I updated my blog I had written about the recent news from my doctor. My last CT scan found evidence of disease on my liver (again), the lining of the left lung, and part of the abdominal cavity on or near my diaphragm. These areas for the most part are inoperable. I mean, you can’t really resect a lung. Although hearing the word “inoperable” is initially jarring, I’m okay with it. My body is tired and run down. It still hasn’t bounced back from the last operation. Though previously reluctant to do so, I’m ready to seek out alternative treatments.

So what am I going to do now? Drum roll please…

I’m signing a consent with Mass General Hospital in Boston for a chemotherapy trial. It is an MEK inhibitor trial which is on the newer side but shows promise in low- grade cancers. Remember, low grades are slow growing, which is good but generally unresponsive to traditional chemotherapies.

I am going to be in a randomized double blind placebo controlled trial. This means that I don’t know what I’m taking and neither do my doctors. It’s like chemo roulette. I could be in group A that receives a drug called Pimasertib and SAR245409 or group B that receives Pimasertib and a placebo. No matter what I will be receiving treatment. This drug is administered orally which is nice for convenience BUT I will be required to go to Boston for check ins.

Stop using medical jargon. What the hell are these drugs?:

MEK = A molecule involved in the growth of human cells including cancer cells

MEK Inbitor (Pimasertib) = Interferes with MEK activity thus potentially crushing some cancer by blocking these cells from rapidly growing.

SAR245409= Drug that targets different proteins that area also involved in the abnormal growth of cancer cells.

Each drug has a different target and they are testing to see if these two drugs in combination are more effective than the MEK alone.

It was not easy for me to make the decision to do this. I mean, you have to really trust the universe and let the chips fall where they may. With any drug FDA approved or not (in my case), there are risks involved.

Side effects in phase I have previously included: gastrointestinal issues, swelling of arms/legs, fatigue, nausea/vomiting, skin rash, decreased appetite, fever, inflammation of mouth, stomach pain, edema, visual impairment/in extreme cases blindness.

A direct quote from my consent form is “blurred vision may occur if the part at the back of the eye which transmits visual signals to your brain separates from the eye ball. Decrease in vision may occur if there is a blood clot in one of the main blood vessels at the back of the eye). I know that they HAVE to tell you the possible risks and every drug carries serious risks but WHAT THE EFF. I did not feel good leaving my appointment having discussed the potential risks. I’m just picturing myself stumbling around my apartment with my seeing eye dog and vomiting all over him as I feel my way around the bathroom for my skin rash cream…

Okay that is really dramatic but that’s where my mind goes. I spent a few days before committing to anything and really gave it some thought. The more I considered this trial and my alternatives, the more I realized that if I did anything else at this point I would be backpedaling. The benefits must outweigh the risks if this trial has made it to phase II.

I was almost at 98% sure I was going to do this trial prior to leaving for Vegas. After attending Stupid Cancer I am at 100%. I was in a session called Cancer as Chronic run by an ovarian cancer survivor. She has been dealing with this for almost 10 years now and has 7 large and active tumors. She’s a rock star even if she doesn’t feel like it right now. I asked a question about clinical trials and afterward a girl came up to me and shared that she has low grade ovarian and she did an MEK trial in Detroit. She told me that it worked well for a while and that she tolerated it well. She unfortunately had to go off of it eventually for one reason or another but she strongly encouraged me to do it. A few weeks ago I asked the universe for a sign to guide me in making this decision. The universe sure is direct, huh?

Next steps:

On Thursday, May 8^th I go to Boston (MGH) to start my testing and sign the consent form. I will be meeting with Dr. Michael Birrer, the Principle Investigator of this study. I hope he is as warm and wonderful as Dr. Robison and Dr. Dizon. I’ve grown accustomed to a pretty lovey-dovey, human, level of care. I’m pretty spoiled, really. He has a tough act to follow.

Treatment schedule:

Weeks 1-7:

• Questionnaire
• Vitals
• Routine Blood Tests/Biomarker Blood Test
• 2 Electrocardiograms
• Day 15: Pharmacokinetics Blood Samples (PK). I basically hang out at the hospital all day and they take my blood after ½ hour, 1 ½ hours, 4 ½ hours, and 8 hours. This is to measure the amount of drugs in my body throughout the day. (Good thing I saved those Barnes and Noble gift cards from Hanukkah because I will get some serious reading done).

Week 8 & beyond:

After the first 7 weeks my appointments will be spaced out and I will only need to be in Boston for check ups/assessments on Week 8, 12, 16, 24, 32 and every 12 weeks thereafter. If anything, I will certainly be under very careful watch. They not only monitor my physical health but also my emotional wellbeing and financial impact (if any).

I will be sure to update more frequently when I have a better idea of what is going on but these are the first steps.

Vegas:

Last week I was in Las Vegas for the Stupid Cancer OMG 2014 Summit. A conference that brings together young people crushing the shit out of all kinds of cancers. I went with EffLeukemia’s own Tony Lanza and we met my brother out there. It was honestly a blast but I think I’m all Vegas’d out. It is non-stop stimulation and I don’t know if I am cut from that cloth. I am very glad I went but I think I would be okay with not going back for a while.

Vegas should actually be its own post and it will but for now I will say that I thoroughly enjoyed the time I spent with Tony and Adam. I am thrilled to have met some amazing people at the conference that inspired, supported, and challenged me to fight and continue to “get busy living”.

Pictures of the dapper Tony and Adam to come!