Cold Turkey

Has it been almost two weeks?

Well, let me catch you up.  Xeloda has been not too bad.  During the two weeks I was taking it, the worst side effect I experienced was fatigue.  If I have a big day, I am completely spent at the end of it and I have to go to bed early.  It really hit me hard at the beginning, and it kind of tapered off as the time went on.  Sometimes just the thought of doing something is exhausting and I psych myself out of it.  I haven't really had nausea, but I vomited a couple of times, seemingly out of nowhere.  I have also noticed an extreme lack of appetite.  I seem to be eating about half what I normally would and then I'm way full.  It's kind of weird, because I have never in my life had this problem.  I've lost a little bit of weight as a result, but I'm not too worried because I can't really exercise.  Until I'm in a size 4, I won't worry too much about it.

On the last couple of days of taking Xeloda, I started to notice hand and foot problems.  It felt like this... On the first nice day of the year you wear sandals for the first time in months.  You go on a walking tour of a large city. The next day, your feet are absolutely killing you, and you don't want to wear those shoes for another week until the bottom of your feet feel better.  That's how it felt.

Then, on the day after I took the last dose, my feet actually felt better as the day went on, whereas the previous night had made them feel worse.  Clearly, getting the drug out of my system was what helped, since sleeping had not made them feel any better.

I've been off the drug for about four days now and I'm still tired, but my appetite has come back quite a bit and the hand and feet problems are nonexistent.  But that's not the only drug I'm referring to when I say "cold turkey".

For the last few days I had been thinking about not taking my pain meds.  I had stopped taking them briefly almost right after I started taking Xeloda (after that steroid incident where I felt great for one day), and I was in a lot of pain, so I started back on them right away.  Even with a constant level of Oxycontin in my system (once every 12 hours), I had a few really weird painful episodes a week or so ago.  One day, I woke up around 4:00 in the morning and I had wincing pain in multiple areas of my abdomen.  It was so bad I was whimpering and crying and I was just in absolutely so much pain I couldn't think straight.  I had to take Ibuprofen on top of the Oxycontin just so I could go back to bed.

However, I haven't been feeling any breakthrough pain for awhile, and I thought maybe this weekend was a good time to see if I could stop taking them.  I was reluctant, because I really didn't want to start feeling that bad level of pain again, but on Saturday morning I was kind of busy and I didn't take them right when I woke up.  I did a few things, didn't feel any pain, and I still didn't take them.  Before I knew it, I was driving to see my mom and I hadn't taken anything for several hours past my scheduled dose.  Let's get to the point.  The last time I took anything for liver pain was Friday night, and I have been feeling good.  I am hopeful that Xeloda is working and I'm looking forward to telling my doctor about it when I see her on Thursday.

Based on this information, I don't think I'll get a scan until I complete another round of Xeloda, so the official verdict will have to wait.  I've felt this way before, so I'm not trying to get myself too excited, but it's kind of hard not to be happy about this.

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I thought today would be a good day to give an update on my Xeloda treatment because today was a pretty good day.  First, let me start by saying that I do NOT have a pulmonary embolism.  Rusty read my last post and informed me that I never actually gave the results of my last scan even though I knew as I was writing it that it came back clean.  Whoops!

Also, remember how in my last post I was feeling great and I was speculating about why that was?  I was thinking it could be either the new pain meds, the steroids, the Xeloda, or the mental relief about starting a new treatment.  The verdict is in:  it was definitely the steroids.  And maybe a bit of the positive mental attitude.  But that could be the steroids, too.

So far, the Xeloda has been pretty uneventful.  I've had a brief encounter with mouth sores, and a very slight tingling in my hands, but the worst side-effect has been fatigue.  I typically take a nap on the days that I'm home, and I typically wish I could take a nap on the days that I'm at work.  However, today I went to work and didn't feel the need to take a nap.  Hooray!

Unfortunately, I haven't noticed a decrease in the level of pain, but I think I've finally gotten used to managing the medication so that I don't feel much of it.  Sometimes I try to power through it or "grin and bear it," but I think that has actually been hurting me more than it seemed.  I've had that awful pain in my left shoulder area that my oncologist said was probably "transference".  [As a side note, I first thought that meant that maybe I was overcompensating or tightening some muscles to reduce the pain in one location, and it was just travelling to the new spot.  Maybe that's really what she meant.  However, my searching on "pain transference" has yielded lots of psychic mumbo-jumbo results that don't really sound like what's going on.  I hope she's not calling me crazy.]  Either way, the pain in my left shoulder is real, and I've found that it seems to get worse and lingers longer if I wait to take something for the pain.

More importantly, I'm just plain happier and more pleasant if I'm not in pain.  This is not only good for me, it's also good for everyone around me :-)  I'm also eating better and sleeping better, and that means I'm less tired.  Win-win!

So far, this new treatment is definitely not kicking my butt like the last one, but I'm really hoping it's kicking the tumor's butt.  Or just kicking the whole damn tumor - no need to restrict it to the butt.  I'm anxious to start seeing and feeling some results with the tumor, but it's easier to be patient when I'm feeling better, even if it is better living through pharmaceuticals.

Feeling More Upbeat and Less Beat Up

Let me start by saying that the last several days have been pretty miserable.  The pain in my liver area has been getting increasingly worse, and I had this issue where I was getting a stabbing pain in my left shoulder when I took a deep breath (not to mention that breathing deeply further intensified the liver pain I was already feeling at a constant level).  I've been having to take ever-increasing doses of pain relievers to bring the pain down to a somewhat tolerable level, but it was still there.  I had to eat half-sized meals because anything more than that would be so painful for an unpredictable amount of time.  Sleeping was unbearable.  I would toss and turn, and whimper every time I hit a position that pushed on my liver.  The only way I could sleep was to sit up practically straight and take Oxycodone before I went to bed, and then half way through the night when I woke up in pain again.  And I was so tired all the time!  This does not make for a happy Megan.

Today, I feel much better.  I don't know exactly what it is that is contributing to it, but I suspect it's a combination of the following:

• New pain medicine that is designed to release slowly and last longer (Oxycontin vs. Oxycodone).  I got a full night's sleep last night with the new pain meds!
• The two high doses of steroids that I had to take for my scan this AM (more on that later).  I'm sure it gave me a lot of energy.
• Maybe the Xeloda.  Who knows, it could already be working.  I've taken 2 doses so far.
• The mental relief and optimism from knowing that I'm on another treatment and that should have mild side effects and that will hopefully work!

I had to get another scan this morning because when I mentioned to my doctor about the shoulder pain, she started asking other questions, and my answers were concerning her.  I've been very fatigued lately, and I've been getting short of breath with mild exertion.  Going up one flight of stairs was pretty challenging.  Three and a half weeks ago I ran 10 miles, where this past weekend I barely got 3.1 in, and I don't know if I'd call it "running."  She was concerned that there could be some kind of clot or pulmonary embolism, so she ordered a CT scan of the lungs.  While it was a bit of a hassle to go back in today, it sounds like something that we should take seriously, so I really didn't mind.  Besides, we went so early that I was there and back to Worcester by 9:30 AM!

So far so good with the Xeloda, but I know I have a long way to go.  I'm taking 1500mg twice per day, and I have to take it for 2 weeks and then I get a week off.  That makes one 3-week cycle.  I'll be meeting with my oncologist right before it's time to take the next cycle, but I'll be communicating with her over e-mail to discuss how I feel and whether or not I'm experiencing any side effects.  It's not uncommon to have to play with the dose a bit, but she said that she started me off on a relatively high dose so that we can hopefully see some progress early on.  I'm assuming that when I see her next we'll discuss when my next scan will be.  Since this is not a trial, we have some flexibility here.  If I'm not feeling better after 3 weeks is over, we'll probably do a scan.

While I haven't been feeling very humorous lately (it's hard when it hurts to laugh), something kind of funny happened in the most recent appointment with my oncologist.  She told me about how the company that makes Xeloda has these bags full of information, a DVD that I will probably never watch (her words, not mine), and some pill organizers.  I could tell that she was bracing for an argument when she mentioned that I should really use the pill organizers.  I say that she was bracing for an argument because I am so "high functioning" and low maintenance.  I'm sure I surprised her a little when I was in total agreement.  Obviously I don't want to miss a dose, but even worse would be wondering whether or not I took a dose.  Sure, I could count them out, but if I'm already wondering whether or not I took a dose, should I be trusting my math skills at that point?  So, I set up my Grandma Pill Box:

Apologies to any Grandmas or pill box users who may be offended.  I feel like it's a descriptive term.  More importantly, I should have no question about whether or not I took a dose, and that's the most important thing.

Driveby Update

Just a quick update to say that I'll be starting Xeloda tonight on a 3-week schedule (2 weeks on, 1 week off).  Anyone who's seen me recently knows that I've been in a lot of pain, so I was eager to get this going.  I'll post more information soon, but my doctor has assured me that the side-effects are expected to be much milder and we're optimistic that this treatment is going to work.

Some Good Points, Some Bad Points

I feel like every time I write a blog entry I have to apologize for not writing sooner.  To tell the truth, this last treatment kicked my ass again, and I didn't really feel much like writing.  I was hoping that the new regimen of anti-nausea meds would help, but it really didn't.  The effects seem to be cumulative.  I spent another 4 days (day 3-6) on the couch, wanting the world to end.  It really was a bad combination of nausea, fatigue, pain, soreness, fogginess, and hopelessness.

But that's all over.  I've been feeling quite good for the last few days.  I went to see Phish this past weekend at Bethel (the site of the original Woodstock festival).  We stayed in a bunk house with some friends at a summer camp about 20 miles away.  The organizers provided buses to the concert location each day.  There was a pool, a mess hall, showers (yay!) and live music during the day and late at night.  It was like hippie summer camp.  We had such a great time!  I got lots of knitting done, kept the drinking to an extreme minimum, and I had a blast.

When I have such a good time, I can almost forget how crappy I feel on the Cisplatin.  Almost.  I recently realized that the next Phish festival falls on a "bad weekend."  I was pretty devastated when I discovered this.  I enjoy seeing Phish so much.  It's such a joyful experience for me.  It makes me happy, it rejuvenates me, and it soothes my soul.  How could I miss another 3 days of awesomeness in exchange for this awful treatment?  Phish makes me happy to be alive.  Cisplatin makes me wish I wasn't.  I made up my mind that I wanted to talk to my oncologist about potentially delaying one of my treatments so that the 4th of July Phish festival could be on a good weekend and I could enjoy myself.

I also had a scan yesterday.  I got all hopped up on steroids, and I didn't experience any kind of allergic reaction (phew).  My doctor called today with the results.  There's no way to sugar-coat it.  Unfortunately, the disease has progressed again.

Ugh.

I was hoping for some relief from this brutal treatment and I actually got it, though not in the way I was expecting.  Since the tumor has now been growing for at least 3 months, I need to switch to a new drug.  I'll be starting on Xeloda (capecitabine) soon.  I was supposed to meet with my doctor next Thursday to begin the next round of Cisplatin.  We're going to keep that appointment and I should start on the Xeloda shortly as long as my blood counts are okay.

My oncologist at Dana Farber offered to let me take this drug with my local oncologist, but I'd rather not bounce around between doctors.  I think she was relieved to hear this, and I was happy to say it.  She agreed that it would make it easier for her to treat me and to offer new trials, and that's exactly what I want.  It's a pain to drive to Boston, but I really want to have all options available to me.  Some people drive much further.  I really have it pretty easy.

I've been trying to research Xeloda.  So far, it looks like the most common side effects are nausea, diarrhea (oh joy), and hand and foot syndrome.  I think the nausea and diarrhea are mostly mild, but the hand and foot syndrome is a little disconcerting.  Apparently the hands and feet get dry and blistery.  Most people have said that if you proactively moisturize with special creams, it's not so bad.  I just hope that it doesn't affect my knitting.  If it does, I'm going to need a new hobby!

While I'm obviously upset that my tumor hasn't gotten under control, I am going to look for the good in this.  I absolutely could not handle the last treatment, and now I don't have to.  This really changes the face of my summer, and I'm hoping it's for the better.  I'm going to stay positive and believe that I'm going to have a few days of side effects, and a lot of days of feeling good.  Some people say this is the easiest chemo they've ever taken.  I would like to start being an overachiever again, so let's hope I have that kind of experience.  As always, I will keep you posted.