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.