Comic

I read an interesting comic the other day.  It's by a guy who does about 2-3 web comics a week, and most of them are really nerdy.  The name of the site is "xkcd" and when asked what that means, one blogger says "It means having to look something up on wikipedia for every second comic".  It's that nerdy.

Anyway, a few months ago, the writer went on a bit of a hiatus because of a family medical problem, but he didn't disclose what kind of problem it was right away.  It turns out that his wife, who is in her 30's, has Stage 3 cancer.  Since her diagnosis, he occasionally writes comics about cancer, about dealing with people who don't understand cancer and treatments, etc.  But he mostly still writes nerdy comics.  The other day, he wrote a comic entitled "Lanes".  If you are friends with me on Facebook, you may have noticed that I shared a link to it.  Here is the comic:

If you have trouble reading it, you can go to the original comic here:  http://xkcd.com/931/  Note that what those lanes represent is essential the stages of breast cancer.  The left-most 25% is Stage 1, the next 25% is Stage 2, and so on.  I thought the comic was a good way to sum up what it's like to deal with treatment from a bird's-eye view.  There is so much that is unknown.  You never really know if you're "cured", but you sure as hell know when you're not cured.

Obviously I'm not cured.  I really hope to stay on the road.  This Wednesday, I meet with my oncologist and go through a bunch of tests (including a CT scan) to see if I qualify for the next trial that I spoke about in my last post.  If I don't make it, I will most likely go to taxol next.  Here's hoping!  I think the only thing that has the potential to disqualify me is my liver numbers, but I've been very good about that.  I have not had an alcoholic beverage since Wednesday, and I won't have another one until after my test.  Honestly, I really don't drink that much anymore anyway.  I haven't had any tylenol, and I'm hoping to stay well-hydrated the day before and the day of the test.

I've been feeling decent over the last week.  The pain on my right side is definitely increasing, but it's manageable.  I am able to finally eat again!  On the advice of my aunt (thanks, Louise!) and my doctor, I've been taking an antacid about 30-60 minutes before eating lunch and dinner.  It has made a world of difference.  I'm finally able to eat again without having awful pain 5 hours later.  And that is a good thing.

Results

I don't even know how to begin.  What the hell.

My latest scan showed progression again.

I'm not sure whether or not I should be angry, depressed, or try to maintain a positive attitude.  You may get a mix of all three in this post.

I kind of saw this coming.  I hadn't been feeling well over the last week.  I had problems with indigestion, I was feeling a little more pain in the liver area, and I just knew something was wrong.  I was hoping it was the Xeloda doing it's work, but I knew better.  When my oncologist told me that there was progression it really just confirmed what I had been suspecting.  I tend not to post about every ache and pain on the blog (which is sometimes why there are big absences).  I don't want to worry everyone, and I don't want it to seem like I whine about every little thing.

My oncologist laid out a few options for us.  There is one study available to me, and 5 types of standard treatment.  I'm not going to go into the standard treatments right now, because we are choosing the study.  The reality is, the more lines of chemotherapy I have, the more ineligible I become for future studies because most of them have restrictions on the number of prior lines of therapy.  I need to go with the trials now if I can tolerate it.  What do I mean by that?  Well, the trial also requires a 3-week flush out period where I have to be off the prior treatment.  So, I basically have to go for the next 2 weeks without any treatment (it's already been a week since I stopped Xeloda).

The trial is supposedly akin to the PARP inhibitor trial that I did at the very beginning.  That's the only treatment that worked at all, so I'm really trying to focus on that positive indication.  It's an oral treatment, where I take one drug (Sapacitabine) for 8 days, and then I take another drug (Seliciclib) for 3 days.  Then I have 11 days off.  It's a Phase 1 study, but they are finished with dose escalation, and they are expanding the participants to BRCA-positive patients only because it has shown promise in these patients.  (Score!)

Sapacitabine is a drug that has been shown in mice to be superior to Gemcitabine in treating liver tumors.  Gemcitabine is one of the standard treatment options available to me.  Sapacitabine attacks the DNA of the cells (which is what the Temozolomide did in the PARP trial).  The side-effects of this drug are supposedly pretty mild.

Seliciclib is a cdk-inhibitor (cdk is a step in the cell life cycle), and it has been shown to induce cell death in a way that makes it so surrounding cells don't absorb any of that cell's "bad habits".  The Seliciclib is supposed to produce more intense side-effects, mostly nausea and anorexia.

Together, the drugs should be killing cancer cells and preventing them from multiplying.  Both drugs are oral drugs, which is great.  It delays the necessity of a port.  I really don't want a port, especially in the summer.  I'll need to do 3 skin biopsies as part of the study (taken from my thigh this time), and a bunch of blood draws (that's par for the course).  I should be scanned every two cycles at the start.

I am probably going to go for pretesting on August 3rd, and I should start treatment on August 8th.  The thing we're mostly concerned about at this point is my liver function.  If the numbers get above a certain threshold, I won't be able to participate in the study.  So far, the number they use is actually in the normal range in my blood work (though other liver-function tests are not).  I'm just going to keep taking my pain killers over the next 2 weeks, and I'm supposed to let my doctor know if things get appreciably worse.  If I can't participate in the study, we want to move to standard treatment ASAP.  In fact, she said that I could start that standard treatment today if I really wanted it.  But I don't.

That's about all I know about the new treatment.  I have an internet acquaintance that also sees my oncologist, and she'll be starting this exact treatment on July 25th.  We're going to keep in touch, and she'll be able to let me know how things are going.  I'm kind of excited that I'll have someone else ahead of me to warn me of the side-effects since there is so little information out there about these two drugs.

Now on to the actual results.  For the first time in awhile, I actually read and digested the radiologist's report (I don't think I ever received the last one, since I got the results over the phone).  It was kind of scary.  The size of the large tumor seems huge.  It was 17.8 x 16 x 6.9 cm, and it has grown to 17.8 x 19.4 x 7.9 cm.  When I saw these numbers I freaked out.  That's like the size of a football.  I asked my case manager at Blue Cross about this, and she explained that these aren't spherical dimensions.  This is how long/wide/high the tumor is at its greatest point.  So, it probably looks more like a badly butchered piece of steak instead of a football.  The tumor is pressing against my lungs to the point where the right lower lobe has likely partially collapsed.  They use the obfuscated term "atelectasis" on the report.  Nice try, radiologist, but I have wikipedia.  Everything else in the scan is clear.

My lab results are also getting worse, as expected.  My liver function number (SGOT) went from 98 to 104.  The trial is only concerned with the SGPT number, which is 47 (normal is between 7 and 52).  I don't know what the actual cut off is, and I don't know the difference between SGOT and SGPT.  I can only care about so many things :-)  My CA 27-29 tumor markers went from 131 to 182.  Yowza.

So this is all kind of freaking me out.  Not gonna lie.  I've been secretly telling myself that if I got more bad news I was going to quit work and go out on disability.  I'm still not sure if I'm ready for that, but I'm also not getting the kind of satisfaction out of work that I once was.  I'm going to deal with that next week, though, and I don't think this is the most appropriate forum to vent about my work frustrations :-)

As I am wont to do, I'm going to end this post with some positive thoughts.  No more hand and foot syndrome!!  My hands and feet had been getting pretty bad.  It was starting to interfere with my knitting, and it was about to interfere with my spa trip tomorrow.  I was reluctant to get a pedicure while my feet were in pain, even though my esthetician at St. Cyr is really accommodating and listens to me when I tell her not to slough the dead skin off my heel, since that skin feels like it's burning.  Right now my feet feel pretty much normal, so I am getting the standard treatment tomorrow, which makes me very happy.

I also should notice my energy levels rebound over the next couple of weeks.  Unfortunately, I've been having trouble eating because the tumor is pressing against my stomach.  I need to eat smaller meals, but I love to eat, and it's hard to adjust to that style of eating.  I've lost about 10 pounds over the last 4-6 weeks.  Normally I would be thrilled about that, but that's not really the goal at the moment.  Rusty is making sure I drink Ensure when I can't get a good meal in (another Grandma moment).  It's actually not bad, and it comes in a dark chocolate flavor.  Yum.

Over the next two weeks, I'm going to try to be happy that my body is not enduring treatments.  I'm going to try to look up cancer-fighting foods and I'll eat some (in small portions).  I'm going to try to get some rest and knit and sew lots.  And I'll try to update the blog every now and then.

No News

Just a quick update to let you all know that I haven't heard back from my doctor about the results of the scan, so at this point I think I'm waiting until Thursday.

I haven't been feeling too well lately.  I broke down yesterday and resumed taking pain meds, and it has improved quite a bit.  Maybe I shouldn't be so stubborn.

Luckily, the hands and feet have drastically improved and I am knitting quite a bit.  Today is my day off, so I'm taking it easy and hanging out with the kitties.

More Xeloda

I went back to my oncologist's office last week to check in and get the pills for another round of Xeloda.  I was very excited to tell my doctor that I had stopped taking pain meds.  Therefore, I was really expecting a good set of numbers from my blood work.  A day earlier, I started feeling that referred pain in my left shoulder, and it had worsened on the day that I visited my oncologist.  That was a little concerning, but it certainly wasn't anywhere near as bad as the pain I'd felt a couple of weeks earlier.

I met with her nurse practitioner first, and we talked about some of the symptoms I had experienced in the last round.  None of it was so bad that they would reduce my dose, so that was encouraging.  Then we reviewed my blood work.

Unfortunately, it was not as good as I had hoped.  My liver function went from a number in the 50's to a 98, where 9-30 is normal.  Previously I had asked my doctor what a "really bad" number is for liver function, and she said she has some patients in the 300's.  My tumor markers, CA 27-29 had also jumped.  Unfortunately, I don't remember what it was last time, but now it's 131.  Normal is 0-38.

As you can probably guess, I was not pleased.  I was pretty discouraged.  When I got to talk to my oncologist about it, she was sympathetic that it wasn't at all what I had expected, and she told me that she was really encouraged by the way I actually felt.  She let me know that Xeloda itself can affect liver function, and that she's also seen tumor markers spike when a drug is working.  I just wish we didn't have to find reasons for why the numbers are bad.  I'd rather just see good numbers, dammit.

I'm a week into the second round, and the referred pain is definitely gone again.  I had it for about 3-4 days, so it does seem like the drug might be working.  It's possible that the week off gave the tumor an opportunity to grow, which is kind of what I think is happening. If that's the case, it seems like I'm taking 2 steps forward and 1 step back.  So, net forward :-)

On a crappy note, my feet are really bothering me.  It was my day off today so I got a massage and she concentrated on my feet for a bit, which really helped.  I have some new stuff to put on them, so I hope it improves.  We shall see.

I'm getting a scan next Thursday.  Tell me something good.

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.

This Blog Post Sponsored By Pharma

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.