Friday, November 29, 2013

Time flies when you are having fun

Oh boy.

So, hey. I'm here. It's been well over a month since my last update and trust me, I'm going to get into it. Just after I had wanted to start making more frequent updates because things were going well.

There are many reasons why I've been putting this off, but it's mostly due to apathy and lack of energy. So this update is going to be rather long. I had considered breaking it up, but since there is a whole connected story, I'd rather get it all out of the way at once. I promise to try and keep it as concise as possible.

I mentioned in my last post that I had a small bout of stomach issues. I was trying to remain optimistic that my steroid binge diet had finally caught up to me and that it was a fluke. Nope. It progressively got worse as the weekend extended itself. The following Monday I called into the hospital to explain my situation and they told me to go back up to the full dose of steroids again until my appt the next week. I was so ready to get off these drugs too. But the combination of the 3rd infusion I had the previous week apparently amped up something fierce in my system. Until then, I had to grin and bear it.

My doctors appointment didn't really yield much results. They chose to postpone what would have been my fourth and final infusion, take a stool sample to check for inflammation, and wanted me to get another colonoscopy. This was turning out to be a fun time.

However, this is where we run into some issues. My GI doctor informed me that he waits 6 months before doing another one and basically flat out refused to do it, as the risk of another one only a month after my first might do more damage than it's worth. This is given the results of the first one, which showed no abnormal signs. He also asked for a stool sample, and prescribed me a couple medications to help with absorption and solidification.

At this point, my oncological team at Emory were on the line about whether to continue treatment on my current regimen given my symptoms, but wanted to wait another 3 weeks and get a CT scan. Hopefully the results would yield some good signs and they could make a better determination from there.

At this point, I need to take an aside to explain something. I had been on a full strength dosage of steroids for about 2 months now. When I say full strength, I mean people questioning the dosage and wondering if it was a typo "full strength". 150 mg of Prednisone is what they call "a lot". This has been a daily thing. For the past month I have had to deal with the fact my stomach and bowels are in constant flux. This makes travelling anywhere a constant risk and plans to do much of anything were put on hold. This has left me pretty much homebound. I can't say cabin fever has set in, because I still can get out and do stuff, but you'd be surprised how quickly you map trips in advance to scout public restrooms. But needless to say, I've been pretty stationary inside my house.

So let's queue up to this week for my latest appointment. We went to Emory on Tuesday for a CT scan (to check the tumors) and visit with the doctors to determine the next course of action.

Let's hit with the good news first. The tumors showed a reduction of size of about 50% across the board. Most of them are about 5 mm in diameter, with one even showing signs of breaking apart. So, this is great news because that means the Yervoy is doing it's job. While the doctor thinks we might want to move ahead with the fourth infusion, he senses my hesitation. The steroid dosage (even coupled with the meds I have from my GI doctor) are doing the bare minimum to control my side effects. The steroids themselves feel like they are destroying my body and I want to do anything at this point to get off of them.

They determine to take me off the Yervoy and put me back on the vemurafenib (these were the pills I was taking at the beginning). This has always been a backup plan in case of adverse effects or lack of response, and they felt a 4th infusion might push my body over the edge. This is kind of disappointing since it was doing something constructive. However, it will remain in my body for a period of time so it may continue to work it's magic down the line. Until then, I'm taking the vemurafenib twice a day again and we'll do another scan in 3 months to check the tumors again.

For the bad news: the CT scan picked up a pulmonary embolism in my chest. This is essentially a blood clot in one of my arteries in my lungs. For the past couple weeks my legs have been swollen and I've noticed I would keep getting short of breath, even doing some basic mundane tasks. I chalked this up to me getting fat from the constant steroid use. In fact, my homebound body had decided it wanted to form a blood clot. They think it formed as a DVT (which is a blood clot in your legs) and it broke loose and went to my chest, but ultrasounds of my legs showed no signs of any existing clots. But given my hermit status it was very likely. So, as a result they have put me a daily system of a drug called Lovenox, which is an anti-coagulant to help break up the clot.

Oh, it's also an injection. A daily injection. Great. Needles again.

So a quick break down of the meds I'm currently taking:

Prednisone, which they are currently attempting to taper me off from slowly.

Creon, which is an enzyme designed to help my stomach absorb nutrients from food.

Questran, which is a powder used to "firm my stool".

Vemurafenib, which is my actual cancer treatment medicine.

Lovenox, a daily injection to break up a blood clot and keep new ones from forming.

I'm on more meds to control side effects of my side effects than I am for anything else. Oh the fun.

Currently my hope is to get off the steroids permanently, which will be by the new year given the tapering schedule and everything goes according to plan. By coming off of them, my weight and water retention should significantly reduce and I'll at least feel healthier and not eating as much. But like much of everything in my life right now, it's going to be a wait and see.

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