Friday, July 22, 2011

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.

4 comments:

K said...

Hi Megan- Thanks for this update. I'm sorry to hear that the tumor has progressed, but very happy to hear about the treatment option you have chosen. I will be looking forward to reading good news once you begin the new treatment. Until then, I hope your two week sabbatical from treatment is VERY enjoyable.

Love, KellyG

Greeley said...

Sorry you're dealing with these unwanted results this time. I don't always post but I do think of you often. Glad the foot and hand pain has backed off and looking forward to seeing you soon.

Erin said...

Sorry to hear the news of the progression. I hope the new treatment works out well for you. Enjoy your spa treatment!

Jeanette said...

Love you, Megan! Thank you for keeping us all updated. It can't be easy to write these posts and I just want to thank you for being so diligent about it. I hope you can knit through the next 2 weeks. xo