Orange Is The New Black

This will be a long, well overdue post.  

The trial, in a nutshell:

I take one 50mg orange pill a day, every day at the same time for 28 days.  This is followed by a 2 week break from the drug as the body needs the break.  The drug, Sutent, is being used in treating kidney cancer but they don't know how it will, or if it will, react to other kinds of cancer, such as Ewing's.  There are different cohorts with X amount of spots each.  I am in the "unspecified" cohort as the Ewing's block is now being used for children.  Originally the trial was for anyone eligible 18 or older.  Because Ewing's is a pediatric cancer they started allowing children into the trial.  The children are only able to receive the IV drug as Sutent is too hard on their hearts.  Since I am well over 18, they weren't quite sure what to do with me and I was told I changed the protocol (again, story of my life).  I signed the 24 page consent, 4 of those pages were the risks and side effects I likely will encounter, at least some of them.  The pill is hard on the heart, among other things, so my pulse and blood pressure is monitored every Friday for the first (6 week) cycle.  I am the 11th person accepted into the clinical trial in Halifax, which is a lot for one centre, apparently.

I started my first pill 27 days ago.  Tomorrow is my last one of the first cycle.  Almost immediately I had a headache, but I thought it was my body's response to the drug.  The first Friday I went in my blood pressure (BP) was high.  This is one of the main side effects, but because my BP is normally low at 120/60 they thought it might push it into the "normal" range.  It spiked high, and fast.  The nurse didn't suspect that and had to call the doctor.  They won't put you on medication unless it is a persistent thing.  I was back the next Wednesday and was put on medication.  This past Friday I started doubling the dose.  No one has ever stopped the trial drug because of high BP.  It can be treated with medication.

The main, serious side effects are (and not limited to): 
-diarrhea
-constipation
-fatigue & weakness
-nausea
-vomiting
-loss of appetite
-mouth sores
-changes in taste
-pain or swelling in arms or legs
-bleeding
-different skin conditions (rash, bruising, dry skin...)
-orange hair
-orange skin
-shortness of breath
-fever
-liver problems
-heart problems
-bleeding
-jaw bone problems
-acid reflux
-hormone problems
-hand and foot syndrome (red, sore, swollen palms of hands and soles of feet, with blisters...)
etc, etc.

Because I had zero side effects from chemo, except for hair loss, they didn't expect me to experience many, if any.

Well, right away my BP sky rocketed.  I had some mouth sores that felt like little paper cuts, I have horrible acid reflux, I look like I was beat up from the bruises on my legs, my jaw bone hurts, and the skin around my nose is literally non-existent.  It is so dry it is red raw. I also can't climb a set of stairs without my legs feeling like I just finished an hour long intense spin class.  My, how I would love to be able to do that right now.

The positives? In the clinical trial for kidney cancer, researchers discovered that there was a direct correlation between those patients with high blood pressure and a better response to the drug.  Secondly, aside from the high BP, all of the other side effects only showed their faces about a week ago.  I have one more day of the drug and then 2 weeks off and I've been told I'll start from "scratch" on cycle 2.  If I only have to put up with these things for the last 7-10 days of the cycle I can suck it up.

I have been exhausted.  It is physically, emotionally and mentally draining.

I have my ct scan the 27th and get the results July 3rd.  The clinical trial team picks so many of my tumors and that is what they monitor.  If any grow, I am out.  There are so many conditions to the trial it would take me a week to try to explain it all.  If all is well from cycle 1, I start my next 28 days of the drug on July 4th. I will remain on the BP medication for the 2 week break.  Pretty bad when I WAS in good shape, at almost 28 to be put on BP medication.

I am still juicing every day, and walking when I feel up to it.  I am in bed by 10 every night but because I can't take supplements while on the trial, I no longer take melatonin which helped me sleep.  I sleep 7-8 hours max and wake up EXHAUSTED. That is not a good feeling, let me tell you.

If my skin and/or hair does turn orange (from the dye in the drug), I will be buying dozens of "Orange is the New Black" gear.  I will look like a freak that went swimming in self tanner, but hey, could be worse.