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.

Unscanned

I was supposed to have another scan on March 14th.  This was an extra scan ordered by the study because the results of the last one were so good.  So, I did the usual fasting for 4 hours, arrived at Dana Farber and drank the slightly unpleasant-tasting gastroview stuff, had the IV put in for the blood draw and contrast dye, and made my way to the radiology waiting room.  That description has a way of minimizing how much of a pain in the ass all that stuff is on the days that I have to get a CT scan.  It's kind of annoying.

It took awhile for the labs to come back clearing me for the scan, but when it was finally my turn to get the CT scan I made an off-hand remark to the tech that changed everything.

"So, I'm not sure if this is a big deal, but the last few times I've had a scan I sneezed a few times afterwards," I said.

The first time it happened, I thought it was allergies.  That first time after I sneezed the techs had this look of fear that really freaked me out.  I assured them that it was just a case of seasonal allergies and they let me leave. The next time it happened, I was out of the room by the time I sneezed.  The next time, they asked me if I felt okay and whether or not I needed a glass of water.  Each time, they reacted kind of strangely and it kind of bothered me, so I didn't want to make a big deal out of it (I find that a cancer patient's day goes by more smoothly by minimizing things like this, or so I thought).

This time, I decided to mention the sneezing before the scan, and this turned out to be a big mistake.

"I can't pretend I didn't hear that, Megan."

Huh?  Why on earth is this such a big deal?!

It turns out that this is a sign of an allergic reaction to the contrast dye, and this is something that can get worse.  A sneeze is no big deal, but the tech explained to me that this could escalate to difficulty breathing, even requiring CPR.  Patients that have this kind of reaction are forever marked, and must be pre-medicated the day before the scan to prevent any further allergic reactions.  Since I alerted them before the scan, they had to cancel the scan that day.

I was devastated.  All this prep work for nothing.  All I could imagine was how this was going to mess things up.  What if I had to return the next day for the scan?  I already wasted several hours prepping for this one!  Two IVs in two days?!  Ugh!  Why, oh why, did I have to say anything?  I know a stupid sneeze wasn't going to turn into a big deal this one time.  Sure, it may get worse, but I probably had a while before my allergic reaction turned into something requiring CPR.  Sigh.  I started crying, which just made the whole situation even worse, and it was so embarrassing.

It turned out to be not that big of a deal.  Since this was an "extra" scan, the study doctor agreed that it was okay for me to skip this one.  I'll be getting another one in a couple of weeks anyways, and this time I have a steroid that I have to take 12 hours before the scan.  My oncologist agreed that the whole thing was blown out of proportion and that I probably would have been fine, but she wasn't upset with me or anything.  She was more upset that the tech didn't just do the damn scan and make me do the pre-medication the next time.  But, if there was any time for this to happen, this was the perfect time.  If it was my 2-month scan I probably would have had to come back.

I lamented that I was suddenly becoming a high-maintenance patient.  The funny thing was that my oncologist and research nurse both said at the same time "Ooooooh no.  This is nothing.  You have no idea how difficult some of our other patients can be".  Phew.  The last thing I wanted was to be unseated as Most Pleasant Patient.  :-)

Anyway, the good news is that my platelet counts were good and I was able to be treated on my four-week schedule.  I also told my oncologist and the research nurse that my nausea was so mild on the lower chemo dose that I didn't feel I needed the stronger anti-nausea meds and they let me skip those.  The thing I don't like about them is they make me a little dizzy.  I felt so good my first day of treatment (which was also my first day off as a part-timer) that I ran 6 miles.  I'm training for a half marathon in Worcester in June, hence the long run.  I'll say more about that as it gets closer.

Testing... Testing... 1, 2, 3!

I was thinking about writing something very positive and slightly sappy today, and I almost did, but Vicki called me today to ask me a couple of questions about the tests I had. I figured today would be a good day to write about them while it's still fresh in my mind.

Yesterday and today were diagnostics days. In fact, I did have 3 tests (4 if you count blood being drawn for a genetics test). I'll write about them here so that everyone knows what's been done, and then if you ever have to get one of these yourself, you'll know what to expect.

On Monday, I had a contrast-dye MRI. Yeah, that kind of sucked. They had me lie face-down with my boobs in two holes (that was kind of comical!) and they gave me a set of headphones with the music channel of my choice (I picked Late Classic Rock). They also spoke to me through the headphones periodically to make sure I was doing okay. It was kind of funny the channel I picked. Every time I heard a song it seemed to fit my situation. I admit, I can't recall all the songs, but one of them was "Life Goes On" by John Mellencamp. The MRI was so loud that eventually I ended up tuning out everything I heard (including the music), so I can't remember much more than that.

A few minutes into the MRI they injected the contrast dye. This was pretty scary. The nurse, Jules, (who happily made me think of Jules that I used to work with :-) told me that I would feel kind of like hot flashes, and that if it got too bad and I wanted them to stop, there was a bulb I could squeeze. However, she reminded me that it would be difficult to still get this test in before my "big day" on Wednesday, so I should really try to get through it. I got through it alright, but I did kind of feel like the start of an asthma attack. I just thought of how disappointed all the doctors would be if they couldn't have the results of the MRI because I freaked out. Then I basically went to that happy place where nothing bad or scary gets in, and I was fine. The whole thing lasted about 20 minutes, or so I'm told. Luckily, I was face down and therefore had no hint of claustrophobia that I often hear when people talk about MRI.

Today was bone scan and CT scan. For the CT scan, I couldn't drink or eat past midnight. No breakfast. Rusty was so sweet - in sympathy, he didn't have anything to eat, either. Starting at 9:30 I had to drink a thick, sweet-tasting solution at half hour intervals before the scan. Not bad, really. Before the CT scan I needed to have an injection of radioactive solution for the bone scan (they were really good at coordinating all this). I could feel tingles in my veins when they put it in. eew. Then the CT scan. This test also had a contrast dye injection. Once again, the nurse warned me that it would be a warm feeling all over my body, and it would feel like I had to pee. This kind of scared me because I have an awfully little bladder, and I was concerned that I really would have to! Alas, there was no peeing my pants (thank God). The whole thing lasted about 3-5 minutes and the warm feeling went away rather quickly.

Next, we were able to go out to lunch because the bone scan was a couple of hours later. We went to a restaurant down the street. During lunch, I expressed sympathy for my Pepere when he had to go through all these tests for his treatment and diagnosis of bladder cancer (which subsequently spread to his bones). It's one thing for a 27 year-old girl to have be poked and prodded (4 needle sticks in 5 days) but I couldn't imagine him going through all this. My mom kind of went through a brief synopsis of my Pepere's treatment and it was really helpful to talk with her about the decisions he made and the treatment he had and all that stuff. It's hard to overstate how therapeutic it was for all of us to talk about it. My mom and I shared a hot fudge sundae after lunch (Rusty had a couple of bites). It's been so long since I've had a sundae. It was worth every calorie but I think I crashed really hard after the sugar rush (slept for over an hour), so I don't think I'll be doing that anymore :-)

Anyway... to the bone scan. For this test, I had to lay very still for several slooooow scans of my pelvis, head, and entire body. It was pretty easy and I could totally relax because it was quiet, painless, and lasted about 30-45 minutes.

The results of all of these tests will probably be reviewed tomorrow when I have a big day of meetings with all of the oncology specialists. Really only the MRI was intended to be diagnostic. It's possible they can use those results in determining the next course of care. The bone scan and the CT scan are intended to be used as a "baseline" to determine if the cancer has spread. According to my characteristics, there is a 50-60% chance that it has spread, but there's no way to tell just yet because it would be too small to detect. Later, they can run these same tests (ugh) and compare them with the tests I've had today to see if there are any changes.