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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.

The first hundred is always the easiest

Due to some scheduling issues, Marye had her chemo on Tuesday of this week, instead of the usual Thursday.  Of course, late into the chemo cycle she was feeling pretty good, and not even needing her usual afternoon nap.  That's all changed now.  She had her therapy on Tuesday, the Neulasta shot on Wednesday, and is now suffering the usual achy bones and minor upset stomach.  All in all, though, she's not too bad off.  Actually, she's really not feeling well, but no worse than usual right after her treatment.
The real update this week comes from our conversation with the doctor.  Apparently, the cancer has plateaued, or stabilized.  The tumor markers from three weeks ago were split (one went up, the other down); and with the small change in the tumor from the CT scan last month, it doesn't seem to be doing much.  While this is certainly not the great news that we're used to about the cancer dramatically shrinking, Dr. Riley assures us that this is normal, and we are just happy that it's not growing.  Again, when cancer metastasizes, the best they expect to do is just to stabilize it and manage the side-effects of the chemo.

When asked if this is the typical life-cycle of the particular chemo drug that Marye is on, the oncologist really begged off.  There is just no "typical" way these things go.  At some point in time, there will be definite growth in the tumor, and we'll have to go to another drug.  But that could be months or even years away.  For now, there is no further metastases, Marye is having a decent quality of life, and she's handling the chemo well.  So that's it.  We just settle into this rhythm for a while.

The thing that struck me about this development was that I was used to seeing good results from the chemo.  The original tumor marker numbers were over 1450 and eventually went down to 150 before she had to get off chemo in January.  Then they climbed back up, but dropped again once she started chemo again in March.  So, now they're stable.  I look at it like a really heavy person starting a diet and exercise program.  When you weigh 600 lbs., that first hundred is really easy to lose.  Just get up and walk around and switch to diet soda.  But after that, it takes a lot of actual work.  That's where we are, I guess.

Anyway, it looks like we'll have a relatively quiet period here for a while, and that's a good thing.  She's got chemo in another three weeks, so if you don't hear from me before then, all is well.

-Chris