Background Info

It's been said that I am not an open book. I can live with that. But don't be surprised that I now have a blog. The purpose is to give everyone a place to get the latest on Marye's condition. Also, this way I won't have to make numerous calls to all of Marye's fans to keep everyone updated (she has a lot of fans). Having said that, I'm more than happy to talk to her fans and give any additional information or answer questions to anyone. I just prefer to do that via private phone calls or emails, which is why I'm using this and not a Facebook group.

I'll start by giving the background of what's happened since July 30, 2011, then start with daily updates. Start at the bottom for the whole story.

I will try to update this page every day as often as possible with her treatment and status. As I get more familiar with the features, I'll add links and email features, etc. Thanks.

-Chris

Saturday, September 22, 2012

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

Tuesday, September 18, 2012

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.

Sunday, August 19, 2012

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.

Friday, July 13, 2012

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

Friday, June 22, 2012

Good progress

It was a busy week, relatively speaking.  Last Wednesday, Marye had a CT scan at U of L to take a look at the tumor.  We were expecting to see the tumor shrink, based on all of the chemotherapy she's had and because the tumor markers were down from the last blood test.  The next day, she had to go to Norton for another ERCP to get the stent replaced.  That went off perfectly, and the doctor put in a fancy, new, metallic stent that will last 6 months instead of the 3 months for the plastic one.  It's much more expensive, but will save her having to go through the procedure so frequently, so it actually will be less expensive over time.  He's been waiting to put in the metallic stent because he kept hoping that she wouldn't need it, eventually.  That doesn't seem to be working out, as he said her bile duct was still pretty blocked without it.  Anyway, that should hold her over until November or December.  One less thing to worry about for the short-term.

During our visit to the oncologist yesterday, we got the results of the CT scan.  The tumor went from 4.2 x 4.2 x 3.9 cm to 4.4 x 4.1 x 3.6 cm.  While this shows very little actual shrinkage, the report noted lower central density of the tumor, indicating necrosis (it's dying).  Also, the second lesion went from 2.2 cm to 0.8 cm, so that's great news.  The chemo is effective.  No new lesions in the liver or anywhere else and everything looks normal.

The only bad news in all of this is the debilitating fatigue that Marye suffers from.  Even the steroids that accompany the chemotherapy haven't really had much effect, and she feels weak much of the time.  Sometimes she changes up the pain and nausea meds and finds a little improvement in her daily fatigue levels, but it's fleeting.  Overall, though, she's not nauseous or vomiting and the cancer is reacting to the therapy, so we'll just continue on this course of action for the foreseeable future.

There is nothing scheduled until her next chemo in three weeks, so if you don't hear from me, then everything's ok!  Hope everyone is enjoying their summer!

-Chris

Monday, June 4, 2012

Update long in the making

It's been exactly one month, I think, since the last update.  That's good, mostly, since there really has not been too much going on.  With cancer, as a rule, no news is good news.  There actually have been some things going on behind the scenes, but we've been pretty busy and so updating the blog moved lower down the ladder of important stuff to do.  But, we just got some good news, so I'll bring everyone up to date.

The last update had Marye just getting back on chemotherapy after a two month break due to her sick gall bladder.  Since then, she had another treatment, followed by a call from Dr. Riley telling us that her tumor markers were still climbing.  Specifically, the CA 15-3 went from 356 to 441, and the CA 17.29 went from 330 to 390.  There were several possible explanations for this: 1) the chemo hadn't had a chance to work, yet, since Marye had only one or two treatments, 2) the tumors could still be growing despite the chemotherapy, 3) nothing at all.  Maybe the tumor markers were coming from something besides cancer.  In any event, the plan was to wait until the May 31 treatment to check the markers again.  If they continue to climb, the plan is to get a CT scan to see exactly what the tumors are doing.  Since Marye has a CT scheduled for June 13, anyway, this would not have changed much.

So, we just got the results of Thursday's blood work, and the CA 15-3 was down to 341(!) and the CA 27.29 only fell to 389-- but at least it's going in the right direction.  The CT scan is still scheduled for the 13th, and she is due to get the stent replaced with another ERCP on the 14th of June.  My guess is that since she still has tumors floating around her liver, the Dr. Vitale will continue to keep the stent in there, even if it's not clear that she needs it.

Looking forward, if the tumors do stop responding to the Taxol that she's taking, Dr. Riley will find another chemo drug to use, then we start this whole process over again.  That could happen in a month, a year, or not at all.  There is just no way of knowing how long the drugs remain effective.

In the meantime, Marye is managing her nausea pretty well.  She still suffers from debilitating fatigue.  That's pretty much a given.  So much so, that when I tell people "she's not doing too badly", I usually don't even mention that she's pretty well exhausted by 2 pm every day and needs to take a nap.  My point is that even though she is not suffering from the stereotypical side-effects of chemotherapy (vomiting, constant nausea, etc.), it's still a pretty lousy way to live.  "Not doing too badly" is very relative.  Also, she's bald.  Overall, though, she's comfortable most of the time and I'm confident that she's getting the best treatment available.

To that last point, I'm always interested in how well doctors keep up with the latest research that comes out about their specialty.  I use a Google news alert set to "Breast cancer" and "Breast" to read the latest articles, myself.  (That last one is rather amusing, sometimes.  Not every story with the word "breast" in it is about cancer.)  Anyway, I try to keep my eyes peeled for new information and often ask Dr. Riley about it when I see her.  As you can imagine, there are so many different types of breast cancer, that many of the studies don't even apply to Marye's situation.  But I always get encouraged that Dr. Riley not only keeps up with this news, but often travels to conferences around the country to meet with other oncologists.  This week she is at the ASCO conference in Chicago, IL, getting presented with much of the same information I see in the news.  She's just about as up to date on this stuff as I am, so I'm grateful.  It's important that your doctors (in any specialty) stay in touch with the latest research.  There are new things coming all the time.

Ok, that's it for now.  Marye had chemo last Thursday and is just now starting to get over the bone pain from the Neulasta shot I gave her on Saturday.  So, she should be ok until the next chemo, although very, very tired.  I should post again after we get the results of the CT scan and the ERCP next week.

-Chris

Thursday, May 3, 2012

More of the same

When Marye had her gall bladder attack in January, Dr. Riley (oncologist extraordinaire) explained to me that one worry was that if Marye is able to get back on chemotherapy, she is now weaker and may not bounce back as easily.  Unfortunately, that seems to be what is happening.  Marye went back on chemo two weeks ago today, and as feared, she hasn't really felt well since.

Like before, there is none of the classic nausea and vommiting due to the chemo, but she has suffered from the same low-grade nausea and upset stomach (two different things) that she's had since January.  The first few days after her treatment were actually pretty good, thanks to the high-dose steroid that she takes.  But once that wears off, Marye is stuck with the same severe fatigue/general feeling of lousiness that she had before.  <sigh>

Last Friday, we had an appointment with Dr. Huber, a palliative care specialist.  She is an oncologist, but focuses on quality-of-life issues and trying to manage symptoms and side-effects.  Seeing her is a last chance-effort to get a handle on the side-effects.  Marye was not complaining too much at the time since I think the steroids were still impacting her and she does feel a little better after being off the aromatase inhibitor.  Dr. Huber prescribed Zofran for nausea, since Marye hasn't tried it in years.  But after a few days, it doesn't seem to help too much and Marye has not been feeling well, at all.  The roller-coaster is in full effect- she'll wake up feeling ok; by early afternoon, however, she's ready to lay down again until about 7-8 pm.


Every once in a while I go back and read this blog to kind of refresh my own memory on what was going on at any particular point in time.  And although there have been many times that Marye has been feeling really crummy, reading the blog puts everything back into perspective for me-- specifically, what has been the general trend of her condition.  It helps to do that since I tend to get lost in her day-to-day condition and need to take a step back to get an idea of is she improving or not over the long-term.  Sadly, it seems that Dr. Riley's assessment in January was fairly accurate: Marye just does not have the strength that she had before and the chemo is taking a real toll.  For now, though, chemotherapy is the course we're on.  She has another treatment next Thursday and every third week after that.  I imagine that after about three or four treatments she'll get a CT scan to see how it's affecting the tumor(s).  Then we reassess. 

It's going to be a long summer.