Two in one

Hi folks!  Hope everyone is well.  I have two updates on Marye from the past week or so.  Thanksgiving week came in with a bang as Marye was suffering from pretty serious nausea and vomiting after her last chemo (the week before Turkey Day.)  She spent Saturday and Sunday in bed, not feeling well at all.  By Monday, she had had enough of laying around and wanted to go grocery shopping.  But as soon as I got her into the sunlight, I could see that she was completely jaundiced.  I mean, she was doing her best impersonation of a pumpkin pie.  That's the best way to describe her color.  I don't know if the jaundice just came up on Monday, or that I hadn't noticed it at home under the yellow lights in the house.  Anyway, we had company coming and Thanksgiving dinner to plan, so we went into the grocery store.  Thanks to my Star Trek-like communicator (smart phone), I was able to shoot off an email to her oncologist right away with this new development.  In the meantime, we filled a shopping cart full of food, although we hadn't gotten to the turkey, yet.  Twenty minutes later, Marye was sick enough that she just needed to go home.  I left the (full) cart in the aisle and took Marye home, planning on zipping right back to the store to pick up where I left off, and hoping that the milk I had in the cart hadn't spoiled too much.

By this time, though, Dr. Riley responded that if Marye was really jaundiced, she needed to get her blood drawn.  Right now.  Of course.  So, the kid at the Meijer was forced to restock all of my groceries as I had effectively abandoned them and took Marye downtown to the cancer clinic.  An hour later, we got the results of the blood work, and, as expected, her bilirubin was really elevated at 6.9 (normal is <1.0).  A few calls to Dr. Vitale's office, and we were ready to head to Norton Hospital for an emergency ERCP.  This was a good thing, since I wasn't sure that the doctor would even be available, with the approaching holiday and all.  In short, Marye's stent was blocked, thus the elevated bilirubin.  We were really lucky to get the ERCP done when we did, since that condition does not get better with time.  Had we waited another day (or six), she could have easily been down with another septic infection from the stent.  The ERCP went smoothly and I got her home that night around 11:30 pm.

It took a few days for the bilirubin and jaundice to clear, but she did start feeling somewhat better.  It actually took longer than I expected, but it did start to clear up by the weekend.  Our company came, and we had a nice holiday.  Marye was a trouper, too.  She did many of the side dishes for Thanksgiving.  Good thing, too, since I haven't figured out those peas and onions, yet.

Since she was pretty shaky last week, we decided to hold off on the chemo.  So, that was today.  She got her blood drawn and eventually did get the treatment.  However, Dr. Riley was not thrilled with the blood work since Marye's liver is not functioning well.  I'm not sure of the physiology of it, but the enzymes and the bilirubin were all pretty high.  The bilirubin is down from 6.9 to 1.9.  That's an improvement from last week, but still a concern.  The onc thinks that her liver is still recovering from the irritation last week.  I can buy that.  She bumped back next week's chemo to the following week and we'll check her labs again on Thursday.  As of this writing, Marye is having some nausea that we (again) are attributing to the chemo today.  We'll see.  She's not jaundiced and I'll check her in the sunlight tomorrow to keep an eye on that.  She's had ERCPs in the past that did not go well or caused infection, so I know what to look for and won't hesitate to bring her downtown if she gets any fever or anything.

Moving forward, we're just watching her liver and hoping that it settles down after last week's shenanigans, and she should be back on a regular chemo schedule in the weeks after that.  The ERCP that was scheduled for Dec. 17 is no longer necessary.  Otherwise, things are just moving along.

This post has no title

I'm tired of trying to come up with creative post titles that say the same thing week after week.  Sorry.  We got the results of Marye's bone and CT scans yesterday.  The results are mixed.  In her liver, the main tumor remains unchanged at 6 cm, the smaller tumors have gotten smaller, and the cancer in her spine has grown.  I wondered if this is normal (that the chemo would work on some cancer but not all of it), and Dr. Riley told me that it is.  Normally, she would keep her on the Xeloda, since it's working fairly well on the cancer in the liver, and boost that with some radiation to her spine to keep that from getting worse.  But since Marye was very unhappy with the side-effects of the Xeloda, we went ahead and changed chemo and will hold off on the radiation to see if the new drugs have any effect.  Really, since the Xeloda wasn't working on all of the cancer, we probably would have had to come off of it after the next CT scan, anyway.  So, two down (chemo drugs, that is.)  The good news is, Marye is not feeling any pain in her back from the lesions on her spine.  The doctor was surprised by this, and I'm glad, too.  If her back does start hurting, she will get more powerful pain meds and probably some radiation, too, to treat that cancer directly.  The other good news is that many of the symptoms that Marye was feeling lately have eased, so it looks like the Xeloda was, indeed, responsible for them.

Moving on, Dr. Riley has prescribed Gemcitabine, aka Gemzar as the next round of chemo.  It is an infusion that Marye will get for two weeks, then a week off.  This is supposedly a very mild drug, so the side-effects should be minimal, and her hair will continue to grow back.  She's no longer bald!  Also, the schedule is flexible, so she could go two (weeks) on, one off; every other week; etc.  It depends on how she handles the side-effects and of course, its efficacy.  To that point, there will be a new CT scan the first week of January. So until then, she'll have to go down and get the chemo every week or so.  Add in the (still) monthly Xgeva shots for bone strength and the ERCP on Dec. 17 to replace the stent, and it's going to be a busy holiday season.  Remember the Xgeva shot is to strengthen the bones since she has cancer in her spine.  It's an osteoporosis drug like Boniva.  This is not like the Neulasta  that she was taking to spur white-blood cell growth in the bone marrow.  That drug was for general immune system boost, not bone strength, but it caused a lot of pain in her bones.  The Xgeva doesn't seem to have any negative side-effects.

Ok, one more thing.  I usually mention the overwhelming fatigue that Marye suffers from.  I usually attribute this to the chemotherapy, but with Marye not having any chemo in the past few weeks, I again asked Dr. Riley about this.  She explained that this is a condition called Cancer-Related Fatigue and that the vast majority of cancer patients experience it.  A little research reveals myriad authoritative links and scholarly research on the condition.  The bottom line is, there is no definitive cause.  It can come from the chemo, or the inherent pain from some cancers.  It could also come from the metabolic drain that the cancer tumors cause --basically, the tumors are robbing energy from the rest of the body, -- or even hypothyroidism.  (That last one is something that Dr. Riley will check during the next blood test.)  Of course, it could be from a combination of all of these factors.  The only treatment strategies are things that she has tried: Ritalin, caffeine, rest, shrink the tumor, etc.  Other than that, it's just something that cancer patients have to deal with.

I bring this up because I know that I mention her fatigue every single post.  I hate to sound like a broken record, and frankly, who among us doesn't feel tired most of the time?  So, I won't mention it as much in the future.  But the whole point of this blog is to pass on information on how Marye is feeling, and to ignore the fatigue is to deny a major part of this experience.  It's debilitating and not unusual for her to spend a whole day, or two or three, in bed, utterly unable to get up.  That is one of the most profound effects of having cancer for a lot of people, and probably the most distressing thing to her.  I'm not happy that there really is no medical answer to this, but giving it a name and knowing how prevalent it is among cancer patients at least makes me understand it more -- and that helps.  It takes a lot of energy to keep holding out hope that "the next chemo drug" or "upping the Ritalin dose" will ease the fatigue problem, only to be disappointed once again..  So it is now something that I know that we have to accept and continue to work into our lives.

Whew, I wrote a book here, but there was a lot to say.  The summary: Marye's CT scan wasn't great, but it wasn't all bad.  The new chemo should be ok, although the fatigue will continue.  Next CT scan is in early January, ERCP is on Dec. 17, near weekly visits to the cancer clinic for various treatments between now and then.  Overall, Marye is feeling ok and sleeping a lot.  And she's happy.  I think that that is the biggest take-away for me.  She's still happy.

A little bit louder and a little bit worse

Hi folks.  Not too much information today, but we're watching some things.  Marye finished the second round of the Xeloda last week, and this is her "off" week.  But she's been complaining of some side-effects from the drug that have been getting worse.  No need to get into too much detail here, but she's been feeling generally lousy.  So, we saw the oncologist, whose first impression was that Marye looks really good and she's ready to increase the dosage.  But Marye really doesn't want to do that.  In fact, she wants to drop this therapy altogether and try something else.  I have my own thoughts on that, but, I have to keep in mind that no matter how effective the chemo may be, we still have to balance the side effects.  If Marye feels terrible all the time, what good is that?

Anyway, Dr. Riley is not convinced that it's the Xeloda that's causing these side effects, but decided to keep Marye off of it for one more week to see.  If Marye starts to feel a little better, than we can assume that the Xeloda is to blame and either reduce the dosage or change drugs.  The other question is if the Xeloda is even effective against the cancer.  Of course, that's really the most important thing.  So, we've got a bone and CT scan scheduled for Nov. 15, then an appointment with Dr. Riley to talk about the next step.  If she goes off the Xeloda, the next drug will be another infusion.  It's a two weeks on/one week off schedule, so we'll have to deal with that.  But until the CT scan, we just have to sit tight.

That's all for now.  Unless there is some change in the next few weeks, I probably won't post until Nov. 20th.

By any other name...

Today we start the second cycle of Xeloda.  A cycle consists of two pills, twice a day, for two weeks, followed by one week off.  So, three weeks ago, when Marye started the first cycle, we were somewhat disheartened to discover that the side-effects aren't much different (or better) than the Taxol.  It's deceivingly simple and low-key, until the drug sets in.  On the last cycle, Marye was pretty well laid out for a day or two with nausea, but then settled into a rhythm of feeling lousy for most of the day with a brief period in the late afternoon when she felt pretty decent.  Of course, the fatigue continues.  I say it's deceiving because by just taking a few pills, you don't really get the sense that you're actually on chemotherapy.  It kind of blends in to the myriad other pills that she takes all day.  But, it is chemotherapy, and it seems to be affecting her like any other chemo would.

She took the last week off in order to give her body a chance to recover.  The only tests she's had were for liver function, since that is necessary for the drug to activate.  The tests were incredibly normal.  Blood counts, bilirubin, magnesium, potassium, etc.... all good.  So now that she's on her second cycle, we're watching for nausea and a continuation of the other symptoms, e.g. fatigue, general lousiness, etc.  We won't get a CT scan until after the third cycle, in six weeks.  Crossing fingers until then.

A new phase, indeed

We saw the oncologist on Thursday, and everything I said in the last post was accurate.  There are actually TWO sites of metastasis in Marye's spine, and approximately 15 new lesions in her liver, with the largest of those measuring about 2cm.  The original tumor now measures 6.2cm across.  It's definitely progressing.  The new drugs Marye has is Xeloda for the cancer and Xgeva to strengthen her bones and prevent any "skeletal events".  Basically, it's an osteoporosis drug.

The Xgeva is given by injection every month, so that's not really a big deal.  Also, I did find out that metastasis to the spine is not really that big a deal, since it's not life-threatening.  It can be very painful, but they found this early and Marye hasn't had any pain from it yet.  By treating the tumor and giving her the Xgeva, she shouldn't have too many problems in that area.

It's really the Xeloda that is tricky.  It's a prodrug, meaning it's given in an inactive form, then activates through regular metabolism.  With this drug, it's the enzymes produced by the liver and the tumor, itself, that activate it.  There are no more infusions; Marye takes two pills in the morning and two at night for 14 days, then she gets a 7 day break.  Today was her first dose.  Since the liver enzymes are really necessary for this drug to work, they have to take blood every week for a few weeks to make sure that her liver is functioning properly.  Once they're confident that she has good liver function, she won't have go down to the hospital except for the monthly Xgeva shot.

As for side-effects, the Xeloda is supposed to be fairly mild.  Since the drug attacks fast-growing cells, similar to other cytotoxic drugs, she probably won't grow her hair back, but she may.  Already, from her first dose this morning, she's complaining of feeling "weird", with a hint of a metallic taste in her mouth.  I don't know if that will subside or just get stronger.  She's taking it twice a day for two weeks, so I'm not confident that that will go away.  In any event, she isn't nauseous, but she is really fatigued, so she's just sleeping away.

  As for efficacy, there have been pretty good results, but there's no way of telling for how long.  Again, the cancer will eventually mutate and adapt to this drug the same way it did to the Taxol.  Then we'll be talking about another drug.  Hopefully, that will be later rather than sooner.  Over the next few days, I'll post updates on how she's doing.  As long as her liver is functioning (it was this week), the drug should activate and hopefully work on the cancer.  The next CT scan is after 3 cycles (9 weeks), so we just have to wait until then to see how it's working.

-Chris

It was a good run

It's been five months since Marye started her current run on chemotherapy.  I posted a few months ago that with cancer, no news is generally good news.  Well, today I have some news.  Recently, we've seen the tumor stop shrinking from the chemo.  Dr. Riley tried to reassure us that it's not necessarily a bad thing; it could be just a plateau period for the tumor.  I wasn't so confident.  This week, we got the results of the CT and bone scans.

The main lesion went from 4.6 cm to 6.2 cm, and there are about 15 new lesions in the liver, measuring as much as 2 cm across.  Also, the bone scan showed some evidence of metastasis in her spine.  So, that's pretty disheartening, although I'm not sure what it all means, yet.  We're meeting with Dr. Riley on Thursday to find out what the next step is.  She already told us that she's stopping the Taxol (since it's obviously no longer effective), and will be giving her a different chemo drug that comes in a pill form.  She also mentioned a shot (not an infusion) for the bone issues.  I'm thinking she's going with Fosamax, but again, I won't know until Thursday.  Dr. Riley did say that the pill she's going with has shown to be pretty effective.  I'm hoping that the side-effects are mild.  Maybe Marye will actually grow her hair back.

In the meantime, we are both still processing this, and there are a lot of unanswered questions.  But to me, it feels like we've entered a new phase in this adventure.  I'll post again on Thursday or Friday after we see the oncologist.  Expect to see some more frequent updates posted here in the coming weeks/months.

Very quiet around here. Almost eerily so.

File this under the "no news is good news" category.  Marye had chemo two weeks ago and is on the usual cycle.  So, that's a good thing.  General fatigue, but not too bad.  Last time we talked to the doctor about her severe fatigue over the summer, and she gave us some tips about getting on a better schedule with the Ritalin and taking it more regularly.  Since then, Marye's made an effort to get up earlier and take the Ritalin when she should.  The plan seems to be working.

We haven't had any indicators of the cancer tumor markers in a while-- Dr. Riley wanted to start checking them every three months, to coincide with the CT scan.  So, this week, we'll get the tumor markers checked, and the CT scan is scheduled for the first week of September.  It feels as if we're getting settled down into a long-term, chronic treatment cycle.  Crossing our fingers that it remains that way.  Again, someday, we'll get the word that the Taxol isn't working anymore, and we'll have to change drugs.  That day isn't here, yet.  So life goes on.

So, that's it.  Chemo this week with tumor marker check.  I'll post that info when I get it.  Until then, I hope everyone is well.