MRI

Hey Folks,
There were some big developments last week, and I'm sorry I haven't posted lately, but it's been pretty busy here.  So, we went to Brown Cancer Center on Wednesday for Marye's scheduled chemo treatment, but we had to talk to the oncologist about the activities from the previous week.  Marye still had quite a bit of pain in her side, i.e. the oxycodone was not working.  Even though she was taking every four hours.  But, prior to her chemo, she took the usual steroids, and actually had some relief from the pain.

So after kicking it around with Dr. Riley, she decided to get an MRI of Marye's liver before she would give her a chemo treatment.  She doesn't know what is causing the pain, but the fact that the steroids relieved it led her to believe that it's some kind of inflammation.  Also, with the new lesions showing up on the last two CT scans, she wants to get a better handle on what the cancer is doing.  The plan is to see the MRI, then decide if it's time to change chemo drugs.

She also gave her a new pain medication that's not a narcotic, but a strong analgesic, and put her on a low-dose steroid.  Well, Marye is feeling much better due to all of this.  The steroids are giving her a good boost of energy, without the side-effects that steroids can cause, and the pain is there, but not too bad.  Anyway, she's much happier now, and actually drove her own car for the first time in 4 1/2 months.  They did the MRI on Friday, so we don't have the report yet, but we're scheduled to go back on Thursday to find out and get the chemo.  Again, the oncologist will make a decision on whether to change the chemotherapy when she sees the MRI report.

So, until then, it should be fairly quiet.  Hope everyone is having a nice holiday season, and you'll hear from me on Thursday or Friday of this week.

-Chris

Undermedicated

Well, after two days in the hospital and several tests, the doctors couldn't find one thing wrong with Marye.  Aside from the cancer in her liver, they said she looks as healthy as anyone.  There is no infection, her gall bladder looked ok, the stent was in the right spot, etc.  But she still had a fair amount of pain in her side.

So, they figured the pain could be from the tumor doing something in the liver, or even just irritation from the ERCP.  Anyway, we started talking about pain management, and it came out that she really hasn't taken enough pain meds to give them a chance to work.  She's been taking an oxycodone every night and it hasn't really helped.  But according to the docs, you really need to take it more often so it stays on board and can build up in her system.  So that's what she's doing.  Taking an oxy about every four hours or so, and she seems to feel a little better already.  This will be the plan until Wednesday when she sees her oncologist and maybe we can get to the bottom of the pain issue.

It seems a little wasteful that she spent two nights in the hospital, but really, we're glad that she got checked out.  She has a high tolerance for pain in general, and this is a new development.  So, if she's complaining of pain, I take it seriously.  But everything looks ok and she is pretty healthy, considering.

I'll post again after her chemo treatment on Wednesday.

-Chris

New trouble

So, there's some new stuff going on that we didn't anticipate.  After Marye's ERCP last week to replace the stent, she's had a pretty severe sharp pain in her side that she really couldn't explain.  She at first thought that it might have been some irritation from the procedure, but it didn't go away, and in fact, it continually got a little worse as time went by.  It was also much different than the pancreatitis she had after previous procedures, in that it didn't make her nauseas and it wasn't affected by her eating anything.

We called the doctor on Monday and they sent her to the hospital for some xrays and blood work, but nothing looked wrong.  There's no infection, the stent looks good, all the blood work is normal.  So yesterday, she got admitted to Norton's to try to figure it out.  There are only a few things that can cause pain in the abdomen like this, including pancreatitis and cholecystitis, an inflammation of the gall bladder, but again, the symptoms aren't matching.  Also, the tumor is continuing to shrink, so it doesn't seem to be anything to do with that.

She had an ultrasound today as well as a HIDA scan, which tracks the bile as it moves from the liver to the small intestine.  Apparently, it seems like the gall bladder may not be working properly, but we're still waiting for the doctor to give us his report and plan of action.  It seems like they're leaning towards removing the gall bladder, but we don't know, yet.  I'll post again when we find out what's going to happen.

This is a fast-breaking news story.  Check back often for updates.

-Chris

548!

Hey kids, I thought I'd give you the update since we got the tumor marker numbers yesterday.  If you recall, the original markers were at 1480 or so.  The last time they were taken, the number went down to about 950.  That was after two or three rounds of chemo.  Remember that last week the CT scan showed that the large tumor had shrunk, but there was growth in to small lesions, so Dr. Riley wanted to hold judgement on what the new tumor markers showed.  Well, she called yesterday and the number is down to 548, so that is definately good news.  The markers are down by almost two-thirds of their original number and the tumor has shrunk.  As for the two small lesions, Dr. Riley wants to go another round of chemo and take another CT scan to keep an eye on them and to confirm that the large tumor continues to shrink.  Also, while this is good news, remember that a heatlhy tumor marker number is below 30.  So, she's still got a long way to go, but it's moving in the right direction.

In other news, we had a nice Thanksgiving.  Marye's steroids were in full swing the day before and she did a bunch of pre-cooking.  On Thursday, the steroids wore off, but I did the turkey and it came out great.  Then I gave her the Neulasta shot and everything went to hell after that.  The same complaints as before: bone pain and fatigue, although it's starting to wear off now, slowly.  Also, she had an ERCP on Monday and Dr. Vitale removed the two stents and replaced them with one.  He said her bile duct looks much more open than it's been, and he considered leaving them out.  But he figured, it doesn't hurt to have it in there, and with the progress from the chemo, he decided to leave it in through the holidays so she doesn't get sick.  He'll reevaluate in January.

Other than that, things are quiet with her.  She is moving around some, but still has a lot of pain.  I actually got her to take an Oxycodone yesterday.  I think she's taken less than five since this whole thing started.  She has an amzaing tolerance for pain.  Her next chemo is Dec. 15th, then we'll have a better idea of when the CT scan will be.  I'll keep you all posted, but it will probably be fairly quiet until then.

-Chris

Mixed Results

So, the blog's been very quiet lately.  Basically, things have been going pretty well.  Marye's been feeling good, although she is still very tired all the time.  But she got her CT scan on Friday and we were anxiously awaiting the results to see if the tumor in her liver was responding to the chemo.  Remember, that her last tumor marker numbers were still very high, but were moving in the right direction. 

Anyway, today was her chemotherapy, since Thursday is a holiday.  So, Dr. Riley came in with the CT scan report, and it's mixed.  The main tumor has indeed responded well to the chemo.  The last CT scan showed the tumor to be 6.7cm x 6.2 cm- about the size of a plum.  The report we got today shows the tumor decreased in size to 5.6cm x 5 cm.  That's good.  But there was more.  Previous scans showed at least two small lesions that were too small to biopsy, but they were measurable: 6mm and 9.5mm.  The bad news is that these lesions have increased to 14mm and 15mm, respectively.

What does this mean?  Well, we need to see the tumor marker numbers that were taken today.  If they stabilize or even increase, then the doctor will want to see another CT scan or MRI in a month to keep an eye on these lesions.  She will also probably look at changing the chemo to another drug.  If the markers continue going down, then she'll probably wait two months for a scan and keep on the same chemo drug.  It's possible that the two small lesions are not cancer, but cysts or any number of irregularities in the liver.  But, given Marye's history, the report says they're consistent with metastatic breast cancer.

I asked a bunch of questions about if it could be a different type of cancer, and Dr. Riley says it's very unlikely.  It's also possible for two separate tumors of the same type of cancer to react differently to chemo.  Remember, cancer is cancer because of an irregularity in the genome that doesn't let the cells stop reproducing.  So, the bottom line is, it's unpredictable.  If the tumor markers go up and/or the two lesions keep growing, then it's only a matter of time before the large tumor stops responding to the chemo, so it's time to change it.  To keep it in perspective, the doctor stressed that these are very small-- perhaps a hundred times smaller than the main tumor-- and as long as the big tumor keeps shrinking, Marye will not have the bad side-effects that she's experienced in her biliary tract.  But it's a sobering reminder that Marye still has cancer, and might never be cancer free, even if we keep attacking it and shrinking it.  Again, the goal is to let her feel better and have a long and fruitful life.

So, that's it.  When we get the tumor marker numbers, I'll post again.  Some other good news is that her blood work continues to look good.  Her white blood cells are good, her bilirubin is down (so the stent is still working), and her liver functions are good.  In the meantime, she got her chemo today and is feeling ok.  She's not nauseas, and I'll wait until Thursday to giver her the Neulasta shot, so she can enjoy Thanksgiving.  Also, she's going to see Dr. Vitale on Monday to get the stent removed/replaced.  Marye's hoping that she won't need a stent anymore, so she can drive again and maybe even get some exercise.

I hope you all have a nice Thanksgiving and you can expect to hear from us again next week.

-Chris

Third Chemo... doing well

Hey kids, as I prepared to write this post, I reviewed some of the past ones and I have to say that it feels really good to finally have some good news.  Seriously, there were about two months there that I had absolutely NO good news whatsoever.  And since Marye's been feeling better lately, incrementally, reading those earlier posts reminds me of how bad things looked and how much has changed lately.

Ok, on to the update...  Marye had her third chemo treatment yesterday (Thursday).  Like the last one, she took steroids beforehand.  These were NPO (oral), vice the IV ones three weeks ago.  In any event, as we were sitting in the waiting room at the clinic yesterday, they kicked in, and Marye turned into a Chatty Kathy.  I have had very little exposure to steroids in my life, but apparently there really is something to them.  She wasn't lifting weights or running a four-minute mile, mind you.  But there is a marked increase in her energy level when she takes them.  Anyway, they took her blood, and everything looks great.  Her white blood cell count is good, her red blood cell count is good.  Hemoglobin, bilirubin, potassium: all good.  But the biggest news was her tumor markers were way down.  Last month, her CA 27.29 levels were around 1480.  The doctor says that they're happy if the marker levels go down by 100 each month.  But on Thursday, Marye's markers were down to 946.  That's about a third.  So, remember, she's been taking chemo and we've been waiting to see if it's been effective on the cancer tumor.  Since the CT scan usually follows the tumor markers, we're expecting a big improvement in the size of the tumor.

Supporting this hope is the fact that Marye is experiencing a lot less nausea and fatigue, although that is still a major issue.  I guess the best way to describe it is to understand that the fatigue that you and I feel as healthy people is not the same as a cancer patient.  Their fatigue is deep-seeded and profound.  When a chemo recipient gets tired, it's like hitting a brick wall and there is just no coming back until the next day, at best.  We can be walking through a grocery store, and I will literally see her start to slow down and her mind gets foggy.  It's then that I know that she's done for the day and I will park her on a bench while I finish shopping.  However, she's been doing a lot of laundry and other household duties, which makes her tired most evenings, even if we don't go out.  Sometimes, when she's all spun up on the steroids, I think of taking her out to some stores to walk her around and wear her out, like you might take your dog to the park and throw a ball for an hour or so.

In any event, Dr. Riley was thrilled to see her yesterday and I'm happy to realize that she's looking much better than she was a month ago.  So the CT scan is on the 17th of November.  After that we'll know for sure if the chemo is working on the tumor.  Her next chemo is on the 22nd of November, the Tuesday before Thanksgiving.  At least she'll be able to eat, even if she can't do much cooking.  One negative side-effect she's having is the pain from the Neulasta shots that I give her after the chemo.  If it weren't for that, the chemo would almost not be a negative experience, at all.  But she takes Tylenol, and that seems to help.  I'll post an update on that sometime next week. 

The only other prolem she's having is some is some neuropathy, meaning her hands and feet are feeling a little numb and tingly.  I've heard of this before, but I underestimated how bad it can me.  Well, apparently it can turn into a pretty serious condion.  The doctor told her to take some B-6 to counteract it, so we'll see how it works.  Anyway, in short, Marye is feeling much better than she has in the past few months.  The chemo is not kicking her ass like it could, and her blood tests are all indicating that she's doing well.  The CT scan on the 17th should confirm that, and, of course, I'll let you all know.

Gilda's Club

Hi folks, it's been nearly a week since I've posted, so I figured I'd give you all an update.  Well, since the last post, the steroids Marye had from her last chemo had worn off.  They wore off after about 1 1/2 days, actually, so her fatigue issues continue.  Also, I gave her a Neulasta shot after the chemo to keep her white blood cell count up.  So, while it looks like she's not susceptible to infection, the marrow in her long bones are definately working overtime.  It's like the growing pains you feel during puberty when your bones just ache.  Nothing a little oxycodone can't overcome, but that just adds to her fatigue.  At her request, I did a search to see if there was anything to be learned about chemo and fatigue, but there was just a lot of stuff about eating well and conserving energy.  Not bad advice, but nothing that we haven't been doing already.  So it just looks like this is something that she's going to have to deal with for the time being.

Ok, on Tuesday we went and took a tour of Gilda's Club in Louisville.  The club was created in honor of Gilda Radner by her husband, Gene Wilder, and Gilda's therapist, and has over 20 houses around the country.  Gilda died of ovarian cancer in 1989 (I think) and the club exists to give a support network and place to hang out for cancer patients and family members/friends.  I have to say that I was very impressed.  Marye, of course, is looking like a proper cancer patient (with the bald head/bandana) so she got lots of friendly attention at Gilda's.  But everyone we ran into was extremely friendly and welcoming to me, as well.  The club, itself, is beautiful.  It looks very residential, with a lot of living rooms; the furniture and artwork are all donated by various groups/companies.  They have a huge kitchen that would be suitable for any Food Channel show, with 5 ovens and a big gas stove top in a big island.  They also have lots of support groups, wellness activities (yoga, etc.), art activities, and a big dinner every Tuesday night.  I'm hoping to get Marye to the knitting group on Thursday night, and I might check out the "family/caretaker" group.  Anyway, it seems like a very nice organization and if you get the chance to visit one, I strongly recommend it.  Also, they operate solely from donations from the community, so if you're looking for a good cause, I would say that this qualifies.  More to follow as we get more involved.

Ok, that's about it for now.  Marye has her nadir blood work this Friday, then she's off for two weeks until her next chemo on Nov. 3.  So the blog should be fairly quiet until then.  I'll post the results of her blood work this week; but, otherwise, it's all fatigue, fatigue, fatigue.  <sigh>

-Chris

Chemo, round 2: A new day

Ok, lots to talk about today.  Yesterday, we went down to Brown Cancer Center in Louisville for Marye's next chemo treatment.  We had a consultation with Dr. Riley while they took a blood sample to make sure Marye was able to handle the chemo.  So, we really wanted to talk a lot about side-effects, especially the fatigue that Marye's been suffering for so long.  For weeks, she's done nothing but move from the bed to the couch, she would get winded just walking into the kitchen, and she didn't have the energy to climb the stairs.  Well, something that Dr. Riley is especially concerned with is how her patients feel.  So, we talked about switching to another chemo drug, and possibly going to a lower dose but taking it weekly.  That didn't sound like fun, so Marye said she just wanted to stay on the 3-weekly schedule.

Dr. Riley wanted to switch to Taxol, which is very similar to the Abraxane, in that they're both paclitaxel, but the drug is suspended in a different solvent.  That solvent is so toxic, in fact, that patients need to take a steroid and antihistimine prior to chemo to prevent allergic reactions.  Also, the Taxol needs to be infused over 3 hours, instead of the 30 minutes for the Abraxane.  I don't understand how this could be better than Abraxane, but ok, I'm not the oncologist.  By now the blood work came back, and everything looked great.  Marye's liver function is good, her bilirubin is low, and all her other numbers are fine.

So we go to the chemo lounge and they start with the Benadryl (antihistimine) and the steroid, dexamethasone.  Then she goes to sleep for three hours while I go get something to eat and roam around Louisville.  Fast forward to the end, and we drive home, but not before we had to run a few errands and even stopped to get something to eat.  Marye ate some baked ravioli and garlic bread, and was doing very well, albeit a litlle wobbly.  When we got home, she was a little tired, but had no nausea or other issues.  We started to hold out some cautious hope that she wouldn't get knocked on her keister like she has been.

Well, this morning, if Marye wasn't as bald as an old man, you would never have known she had cancer, let alone had chemotherapy less than a day ago.  She did laundry, sorted her clothes, put some books away, made a shopping list, and even called the doctor's office to tell them how great she felt.  She was up and down the stairs and everything.  I canceled the order for the stair-climber I was going to have installed.  Seriously, she looked great and hadn't had a day like this since July 29.  She wanted to visit some of her favorite stores that she hadn't been to in months, so I spent all day driving her around.  Good stuff.

Anyway, around 3:00 she started to get worn down, and is now in her usual position on the couch, but she's not sick at all.  So, I have to attribute her energy to the steroids, and that's ok.  Maybe she should be on them every day.  In any event, we don't know how long she'll have this much energy; it's possible that it will wear off and the chemo drugs will start to have their usual effect.  But we're hopeful.  Either way, that fact that she felt great today and isn't sick at all made it all worth it.  Even if she loses her energy again, I'll be happy if she doesn't have the nausea.  Ok, in addition to the steroids we picked up for her next treatment (in three weeks), I got a Neulasta syringe that I used to inject her today.  This is similar to the Neupogen that I gave her last time, but it's only one shot instead of five.  She had Neulasta in 2005 and is aware of the effects-- bone pain as it stimulates the bone marrow to grow white blood cells.  So, she'll probably be kind of laid up for the next week while that goes on, and we have some pain pills to help her there.

Moving forward, barring any catastrophes (infection, etc.), she's got nothing to do until a blood draw on her nadir next Friday, then chemo on November 3rd.  I've already got her dexamethasone (pills) for that treatment, so we're good to go.  Dr. Riley says they want to do a CT scan after two months of treatment to check progress on the tumor, so that should be after next chemo.  Down the road, we're anticipating that Dr. Vitale (remember him?) will need to change the stents in her bile duct OOA November 21.

Other than that, we're looking forward to some quiet time here.  I'll post every few days to update everyone on her condition, or if there are any developments, but I'm hoping there won't be.  Ha!

-Chris

Bald

So, Marye had her first chemo treatment less than two weeks ago, but this weekend, we noticed that her hair was coming out in pretty big clumps.  Well, she didn't want to shave her head until she had some caps to wear, and they're all in Nashville.  So we went down to the Brown Cancer Center Resource Center today and picked up a few things for her to wear on her head.

She got some nice things that will keep her head warm and are pretty stylish.  So, when we got home, it was time to shave her head.

Marye's Ponytail

Well, that's it for today.  She still is very fatigued, and has a constant low-grade nausea, but she's hanging in there.  Her next chemo treatment is next Thursday, so it should be fairly quiet until then.  I want to say "thank you" to all of her fans who have sent cards and emails to Marye with well-wishes.  She does appreciate them and it helps to know that she is loved.

-Chris

Bloodwork

Today was Marye's nadir-- meaning halfway between chemo treatments-- so we went down for some bloodwork to see how things are going.  Well, it seems that the neupogen injections are working, since her white blood cell count was up over 12 (from 1.1 on Tuesday).  Also, her hemaglobin was better, so the transfusion helped, as well.  She still doesn't have much energy, but it has been somewhat better lately.

Also, I forgot to mention in the last post that she got a prescription for marinol this week.  So she's been taking that, and it's having some good effects.  Meaning, it seems to help with the nausea most- if not all- of the time.  Well, she's been up a little bit more than ususal, so that's a good thing.

There is not much going on until the 13th of October, which is her next chemo treatment.  I don't expect that I'll be posting much until then, but I will post a few times to let you all know how she's feeling.

Hope everyone has a good weekend.  I may play some golf on Saturday.

-Chris

Infusions, Transfusions, and Injections(!)

Tuesday was another unexpectedly busy day.  Dr. Riley called us early this morning and told me that Marye's hemoglobin was low, and she should come in for some bloodwork and probably a transfusion.  So we headed to the cancer center and did just that.  Once we got there, they took a blood sample and we waited for the results.  In the meantime, we talked to Dr. Riley about what happened over the weekend and what is going on with Marye's blood. 

The good news is, we shouldn't worry too much about the new lesions they saw over the weekend from the MRCP.  Basically, since this was the first time Marye had this kind of scan, nothing we see can be compared to what we saw- or didn't see- before, because there's no baseline.  Those lesions could have been there before, but just not picked up by the CT or PET scans.  So, until and unless she gets another MRCP, there's no way of knowing their significance.  Also, the onc says they look more like an infection than cancer.  However, if they are infection, they would expect Marye to be much sicker than she actually is.  But she's also getting IV antibiotics, which could be keeping the symptoms of infection at bay.  So who knows?  Again though, if it is infection, she's getting treatment with the antibiotics, and if it's cancer, the chemo should work on it.  So unless these lesions do not shrink, there is no reason to biopsy them.

Ok, on to the blood work (aka "the bad news")... the blood they took from Marye showed better than expected hemoglobin levels, but a much worse than expected white blood cell count.  It was really low (1.1 for you medical types).  So, Dr. Riley still wanted to give her a blood tranfusion, which we did.  But she was really alarmed at how low her white blood cell count was.  Remember, chemotherapy attacks quick-dividing cells, including white blood cells, which help the body fight infection.  Well, when Marye had chemo back in 2005, she was getting a Neulasta injection after each treatment.  These injections cost $6,000 each.  This drug stimulates the bone marrow to grow more white blood cells to counteract the effects of the chemo.  It works well, and the only real side-effect is bone pain, like growing pains when you're a kid.  Anyway, she's not getting Neulasta, but we now have a similar drug, Neupogen, that has to be injected once a day for five days.  So, after a training session with the nurse, I performed my first-ever injection.  We'll do this for four more days, and (probably) after each chemo treatment.  As Michelango said (at age 88): "Ancora Imparo".  Still, I learn.

So, moving forward, given Marye's reaction to the Abraxane, Dr. Riley has already decided to reduce the dosage in the future to reduce the side-effects.  This is really where the art of oncology comes in.  Since Marye had a fever last week (indicating some sort of infection), she's going to keep her on the antibiotics for the near future.  Again, the oncologist is really concerned with how the chemo is going to affect her liver.  But Marye needs the chemo in order to shrink the tumor, which is likely responsible for the pain and nausea that Marye is experiencing.  She probably won't get a CT scan to measure the tumor until after the third treatment; then we'll know if the Abraxane is effective or not.  If it's not, we'll have to look at another drug.  In the meantime, we need to manage Marye's infections and keep an eye on her blood counts.  Hopefully (there's that word, again), the transfusion will boost Marye's hemoglobin and ease her fatigue and weakness.

Barring some new catastrophe, we don't have to go back to the clinic until Friday for more bloodwork.  This was a regularly scheduled appointment, and is the nadir of her chemo treatments... meaning it's halfway between treatments and when the bloodwork numbers are expected to be their worst.  It's also a good time to follow up after these latest developments, so maybe we'll see some improvement in her numbers and how she feels.  (I'm purposely trying to avoid using the word "hopefully".)  Until then, no news is good news.

-Chris

Late update (of course it's not good news)

So, I'll make a long story short here.  Marye was admitted on Friday night.  It was actually more like Saturday morning, since we didn't get her room until about 0330 on Saturday.  But ok.  Of course, her temperature was down as soon as she got into the ER, like when you take your car to the mechanic and it starts running fine all of a sudden.

But anyway, although her fever went down and her blood cultures were coming back clean (indicating no infection), her bilirubin was slightly elevated, indicating a problem with her liver.  So they did an MRCP to see if there was a problem with her stents.  After reading the scans on Sunday, the GI doctors said there were no immediate issues with her biliary tract, including the stents, so they deferred any treatment of her bile duct until Dr. Vitale is available.  Also, her bilirubin started to come down a little.

In the meantime, the oncologists came in (Dr. Riley's group) and said they saw several(?) lesions on the liver, each measuring an inch or so.  This is in addition to the original tumor that we know is there.  So, without doing a biopsy, there's no way of being sure what the lesions are, but.... they could be more cancer, or just an infection.  Either way, they're getting treated, since she's still getting ampicillin (for infection) and chemotherapy (for the cancer).  So, we have an appointment with Dr. Riley to check her blood/liver and see what she thinks about the new developments.  Maybe she'll want to change the chemo, maybe not.  In any event, Marye was very happy to be discharged from the hospital and hovel in her own bed.  I'm still giving her the ampicillin infusions every six hours and trying to get her to eat as much as she can tolerate.

There are a whole host of other side-effects from the chemo and antibiotics that are generally making her life difficult, if not miserable, and maybe I'll expound on that in the future.  But now it's late, and I need to get some sleep so I can get up at 0600 to give her her next infusion, so I'll post more after our appointment with Dr. Riley on Tuesday.

Finally, on Sunday morning, there were a group of gentlemen who were walking around the hospital ward singing gospel tunes in various rooms.  I though they were there for a particular patient, but I found out that every Sunday they roam the entire hospital and will walk into any room to which they are invited.  Marye likes gospel music, so I waved them in.  Here's a short clip I took with my phone.  Sorry it's a little fuzzy, I think that they were too close for the camera to focus.

No really, you didn't think this was going to be easy, did you?

It's 12:30 am on Saturday, and we're in the ER at University Hospital in Louisville.  Marye's temperature was up all day, so Dr. Riley told us to come on down and try to find out what's going on.  We were both a little perturbed, as she just started antibiotics last night and they really didn't even have a chance to work yet.  Actually, I was a little perturbed; Marye is absolutely distraught about being in the hospital again.  But here we are.

Anyway, they've taken all the usual samples of everything to do cultures.  Of course, we won't get the results until tomorrow or Sunday, but her white blood cell count is not elevated.  That could be a function of the chemo, so anything is possible.  We're waiting for the internal medicine doctors to come in and examine her, then she'll be admitted.  Don't know for how long.  I'll post more tomorrow when we know something.

-Chris

You didn't think this would be easy, did you?

I'm sorry if my last post left you with the idea that the chemo was going to go smoothly with no complications.  In other news, I'd like to know who coined the phrase "fingers crossed" and punch him in the face.

Well, nevermind that.  Since we last left you, Marye was doing pretty well after her chemo treatment.  She had a little nausea, but it wasn't anything that we weren't used to at this point.  A little phenergan and oxycodone, and she's fine.

But here's where it gets a little technical, so bear with me.  The thing about chemo is its job is to kill fast-growing cells, which is what cancer cells are.  Of course, there are other fast-growing cells in your body that are not cancerous, e.g. white blood cells, hair follicle cells, the linings of your mouth and colon, etc.  So the chemo can't differentiate between good fast-growing cells and bad fast-growing cells.  That's why you lose your hair when you take chemotherapy, as well as other side effects.

Well, with Marye's cancer in her liver, a big concern with her chemo is that it will cause damage to an already compromised organ.  Add to that the stents which have already caused two bloodstream infections, and there are a lot of things to look out for.  So, they took they a blood sample before her treatment yesterday, and it turns out that her bilirubin was elevated (telling us that her liver is struggling).  So, last night her temperature started to climb.  Now, this is often a normal effect of a tumor in the liver, but the doctor was adamant that we need to call them if her temperature hits 100.5 F.  The reason for this is that she's very susceptible to infection since the chemo is now attacking her white blood cells.

Well, this morning, I got in touch with Dr. Riley about the fever, and that's when I first learned about the elevated bilirubin.  So, Dr. Riley was a little concerned about the fever, and asked us to come in for a blood draw.  Well, we're in the chemo lounge (looking at the parking garage), and Dr. Riley orders two hours of IV fluids, a chest x-ray, a urine sample, and another blood culture.  She's looking for infection.  Then the initial blood tests come back and Marye's bilirubin had climbed again, so there is definately a problem with her liver.

With this information, Dr. Riley calls over to Norton Hospital to get in touch with the biliary tract master, Dr. Vitale, only to discover that he's out of the country on vacation.  Well, you can't blame the man for that, but Dr. Riley doesn't want the possible infection to take hold, so she orders two weeks of ampicillin.  Being late in the day, she figures that she should admit Marye into the hospital at least overnight in order to get the antibiotics started, until I start to protest.  Long story short (as if this wasn't a long enough story, anyway), we got in touch with Walgreens home health care pharmacy and set up a delivery of the ampicillin to the house.  So, we're starting two weeks of home infusion (like last week), but at least she's not in the hospital, because no one ever gets well in the hospital.

In the meantime, Marye and I were talking about her chemo in 2005 and we remembered that she was taking Ativan to help with the nausea, as well as to help her relax and sleep.  I mentioned that to Dr. Riley and she thought that was a good idea.  So we now have Ativan.  The only reason I'm mentioning this is because although it does a great job, it literally knocks her out like a zombie.  But better to be a well-rested zombie than to be in constant pain and nausea.  Maybe.

Ok, moving forward, I mentioned that we need to get the stent changed out pretty soon.  Well, we're going to talk to Dr. Vitale as soon as he gets back in the office and have him check it out.  Marye is back on antibiotics, so hopefully if she has an infection, we'll get that under control before it gets out of control.  Again, the bottom line is, she needs to take the chemo to shrink the tumor.  Then it will relieve the pressure on her bile ducts and liver, hopefully giving her some relief.  Unfortunately, the chemo comes with its own set of issues that directly threaten the liver and a lot of other things, so it's a delicate balance.  This is where I see that oncology is more than just following a flowchart of recommended dosages.  When you have to take into account the condition of the patient and the many complications they may have, there's as much art as science involved. 

Did I mention that cancer sucks?

-Chris

First Chemo

Today was Marye's first chemotherapy treatment.  I didn't post yesterday about her port, but it went in very smoothly and Marye was up and about almost right away.  So the port is in-- it's a little sore, but the stitches will dissolve and she's been taking some Advil and prescription pain pills.  This morning, we made our way into Louisville and got to the cancer center around ten minutes early.  Then we sat in the waiting room for about 45 minutes.  When we finally got into the chemo lounge, they sat her down, and put in the order to the pharmacy for her Abraxane.  Over an hour later, we were still waiting for it to come back.  It seems they can't order it until she's in the chair, and this is a busy cancer center.  Her treatment office in Charleston back in 2005 was a lot slower and more quiet.  Also, there was a large window that looked out onto a pond with a fountain.  Being South Carolina, there were plenty of herons and other birds to look at.  The lounge at Brown Cancer Center looks out onto the parking garage across the street, filled with the smokers who have to leave the medical buildings to get their fix.  Ironic.  I wonder if they realize they're being watched by the cancer patients all taking chemotherapy.

Anyway, once the meds came, it was a quick infusion (30 minutes) and we were done.  The port worked beautifully.  The Abraxane is known for fewer side effects than what she's taken in the past, and so far she's doing well.  She took a precautionary Phenergan, but she doesn't have any nausea yet.  Fingers crossed.  We also have Compazine as a stronger anti-emetic, and she'll probably stay on the meds just to be safe.  Otherwise, it's all quiet.  Her next treatment is in three weeks, and we don't have appointments until then, so I won't have much to update.  I will post every other day or so as we watch her reaction from the chemo.  Hopefully it'll be boring.  No more hospitals for a while.

The only other thing we have to do now is get back with Dr. Vitale as her stent(s) will need replacing before too long.  Maybe we'll try to do that before her next chemo.  I'll let you all know.

-Chris

The next step...

This week, Marye starts chemotherapy.  First she needs to get a portacath installed.  This allows them to take blood and give IV injections without having to stick her in the arm.  The port is scheduled to go in at 10:00 am tomorrow, but before that, we're going to meet with Dr. Riley's staff for a consultation about the chemo. 

So, due to the Sherman Minton Bridge closure, we need to leave around 6:30 am to get there by 8:30.  That's right, for you folks who aren't local, it's going to take about two hours to drive the 12 miles to downtown Louisville.

Anyway, as far as the treatment plan goes, it looks like she's going with Abraxane, and will be on a 3-week cycle starting on Wednesday.  Other than that, I don't know too much.  But check out the link if you're curious (I'll be doing the same), and I'll post an update tomorrow night.

-Chris

A different animal...

Today we saw Dr. Riley, the oncologist.  Marye's been off the antibiotics for two days now, and all indications are that the infection is gone, for now.  So now that they have a diagnosis (metastatic breast cancer), we're expecting to hear what the treatment plan is, fully anticipating that she'll be starting chemotherapy next week.  After some progress on shrinking the tumor, we were expecting that they would go in and resect the tumor from the liver.

Well, it seems that metastatic cancer is not the same as localized cancer.  The doctor talked about the many different types of chemo that are available for breast cancer, and she's still deciding on which is the best.  But the the difference here is, since this is metastatic, there's no point in resecting the tumor.  Even if you got all of the tumor out (unlikely), there are still malignant cells floating around in the blood stream and lymphatic system.  Not only that, in the past with her cancer treatment, we saw a round of chemo treatment that lasted 16 weeks, then radiation to finish off any bad cells, then just monitor the area to make sure it doesn't come back.  But that's not what's happening here.  Marye is going to start chemotherapy and it will not end.  She's going to have chemo for the rest of her life.  In eight weeks they'll do another CT scan to see if the tumor is responding.  As long as it does, she'll stay on the same drugs.  When (not if) the tumor stops responding, she'll be switched to another drug.  The doctor says that even if the tumor shrinks to the point that they can't see it, she still needs treatment to chase down the cancer cells that are moving around.  There is no question that the cells are there.  Not only did the cancer move to her liver, several of the lymph nodes around the liver are showing signs of malignancy.

Now, regarding the treatment... what Dr. Riley is concerned about is the liver function.  Removing a breast (or two) is no problem to anyone.  And even though the liver is so critical, it is filled with redundancies.  What I mean is, it is much larger than it needs to be for us to survive.  You can have 75% of your liver removed and still get along just fine.  But because this tumor is right between the two lobes, and it's already causing problems with her bile ducts, the doctor is concerned about the liver function, because the chemo will only exacerbate whatever complications she's having.  So they'll do blood work before each chemo treatment to make sure that her liver is healthy.  If it's not, then they have to back off the chemo treatments to allow her liver to recover.  That will only slow down the treatment.

The bottom line is, up until now we've been treating the symptoms of the tumor blocking her bile duct.  The stents are in place, allowing her bile to drain and her liver is generally functioning ok.  But since she's been so sick, she hasn't been able to eat, and she's very weak.  This is also a problem for the chemo treatments, but until they can shrink that tumor and relieve the pressure, she's not going to feel good.  Kind of a Catch-22 at this point.  The best course of action right now is to start the chemo and see if she can handle it.  Hopefully then the tumor will shrink and she'll start to feel a little better.

Ok, I've got some pictures from the CT and PET scans.



This one is from the top down.  Marye's liver is on the left side of the screen.  The bright glowing thing is the tumor.  I'm fascinated by the detail of these scans.  You can see her heart and part of her spine very clearly.

Again, the tumor is the glowing part in her liver.  This is at the extreme far right of the liver, so the tumor doesn't really appear that large.  I included this pic mostly to demonstrate the detail of her spine.  (I hope she's ok with me posting these.)

This picture is a transverse slice of her abdomen.  Again, the glowing areas indicate cancer.  The large area on the left of the picture is the tumor, the smaller area to the right of it is some of the lymph nodes that are also reacting to the PET scan contrast solution.  The smaller areas at the bottom of the picture (on each side of the spine) are her kidneys.  They are not cancerous, but they are collecting the radioactive glucose they use in the PET scan.  Quick-metabolizing organisms (like cancer) show up on the PET scan, but other areas, such as the kidneys and bladder, do too, since they quickly collect all fluid we drink.

Ok, I know this was a long post, but there was a lot to say.  I hope it made sense.  If you have any questions, please let me know.

-Chris



Picc Line and Home Infusion

So, yay, Marye got discharged from the hospital today.  She's glad to be home, but is very weak and tired.  Laying in bed for a week does nothing for your stamina, she struggled going up the front stairs.  Anyway, as I told you before, she got a picc line put in yesterday, so now she can get her antibiotics at home.  Tonight, the home health care nurse came by and showed me how to do it.  It's kind of involved.  I need to flush the line, then mix the medicine in a saline solution, hook it to the line while it runs for 30 minutes, then flush the line again with heparin to prevent clotting.  She needs this every six hours through the 14th, so I set my alarm for 6:00 am and will start tomorrow morning.

Otherwise, she's doing pretty well.  She has no diet restriction, but we're taking it easy and giving her things that we think she can handle.  No ribs or pulled pork.  She did get a little nausea after eating tonight, but the phenergan took care of it.  Now she's just sleeping, and I need to get on her schedule for the infusion.

We have an appointment with the oncologist, Dr. Riley, on Thursday.  Now they know definitively that it's breast cancer, they can design a treatment plan and she'll probably start chemo the following week, as long s nothing else happens.  Until then, I'll probably post less often until the doctor's appointment.  Maybe I'll put up some pictures of the IV and stuff.

-Chris

Almost sprung...

So, Marye was doing pretty well on Thursday morning.  The infection was under control, she had all her tests on Wednesday, and was feeling pretty good.  Well, Dr. Bahr came by in the morning (he is Dr. Vitale's fellow) and sat with us for a little while and was ready to discharge her on Thursday.  But while he's sitting there, Marye suddenly becomes violently ill, and vomitted more than she has in recent memory.  I'm not talking about some nausea and dry heaving.  She actually threw up her entire breakfast in front of the doctor.  So after witnessning this, Dr. Bahr says, "I can't send you home in this condition".  So she got to spend another day in the hospital.

After a few hours, the doctors decided that she could get a picc line, allowing her to get her antibiotics intravenously for the next week at home.  So she now has a picc line.  The doctors came in late on Thursday and said she could go home on Friday.  I don't know what has changed between Thursday and Friday, frankly.  She still gets nauseaus after meals, and doctors say that's just a product of having a tumor in your liver, i.e. it won't get much better until after they attack the tumor with chemotherapy.

The good news for the day is that the biopsy came back and the tumor is....... breast cancer!  This means that the prognosis for this tumor is much better than if it was bile duct cancer.  It seems that breast cancer is more treatable and reactive to chemo than most other types of cancer.  So I'm sure that I'll have a lot more to say on this topic in the next week or so.

Ok, I hope this is a good update.  The current status is that Marye should be home sometime on Friday, and her infection is under control.  Hopefully she'll be able to rest at home and build up some strength that will allow her to go to chemotherapy.  That's all I have for now.  I'll post an update when she gets home and stable.

-Chris

Going home(?)

Alright, Dr. Vitale came in and said the infectious disease doctor (can't remember his name) wants Marye to be on IV ampicillin for another week.  Sooooo..... she can either stay in the hospital for that long, or she can go home tomorrow with a picc line and take an IV every six hours.  We're going to discuss that option tomorrow.  She DOES NOT want to stay there another day.  She's been in the hospital more than she's been home in the past month, so we're motivated to figure it out.  Also, we haven't heard anything from the biopsy yet, so that should come tomorrow.

That's pretty much it for now.  I'll update again when she gets home.

-Chris

Who knows...

So after all of yesterday's activity, today was a dud.  We didn't see any relevant doctors, and the hospital's computers were down all day so there were no reports from the biopsy or echocardiogram, although we did hear that the doppler study on her legs was negative (no clots).  She's been taking ampicillan all day and feeling well, relatively speaking.  As of 5:30 pm, we're waiting to see if any doctors come by to discharge her, but we're thinking that she'll be here until tomorrow, at least.

Since there is not much to report, I'll fill in some details on how her day goes.  When I say she's feeling well, relatively speaking, that's in comparison to when she was vomitting and in a lot of pain.  Now, she still has a constant pain in her abdomen and sometimes a little nausea.  Most of the time, we can control that with phenergan, and we have phenergan at home so that's ok.  She has bouts of serious gas pains from the air they pumped into her during the ERCP, and that usually lasts from 5-10 minutes at a time.  She is very weak and tired all the time.  I've been able to get her out to walk around the past few days, but that only lasts a few minutes before she's ready to get back into bed.  Still, I think that just getting out of the room and bed, even for a few minutes is good physically and emotionally.

Nurse just walked in with an update... I'll post more later.

-Chris

Busy day today...

Well, the first day after the long weekend brought all kinds of activity.  First of all, it seems that medical students are required to wake up at the butt-crack of dawn and make their rounds before the residents, who make their rounds before the attending physicians.  So the med students (easily identified by their short white coats with green lettering) start around 05:00 am.  They come in and ask a bunch of very simple questions and act like they know what they're doing.  Then the residents come in starting at 06:00 am and ask slightly more relevant questions.  The residents are actual doctors, so they have the long white coats with red lettering.  Like the military, the medical field has their uniforms and customs.  Finally, the attending doctors come in starting around 08:00 am or so.  That's when the real action happens.  As usual, it's good to be the senior person.

Anyway, on to the update.  Marye started out early with a CT scan-guided core biopsy of the mass inside her liver.  Simple enough, she was back in about an hour.  Then she slept for a while and after lunch, the wheelchair showed up to take her to get a doppler scan on her legs.  It seems that her right leg is a little swollen and the ID doctor wanted to see if there were any blood clots.  The day ended with an echocardiogram of her heart to see if the infection she has has migrated there.  We haven't gotten the results of any of the tests, yet, but we should start hearing about them tomorrow.

Of course, the one we're waiting on the most is the biopsy, and of course, that won't come back for at least a day or two, with two or three days for the final report.  So hopefully, we'll know for sure what kind of cancer this is by the end of the week.

Otherwise, Marye is feeling fairly well, but she has some gas pains as a result of the ERCP the other day.  Hopefully that will subside, because she is able to eat without too much trouble.  We were expecting her to stay here until the end of the week, but the doctor says he may discharge her on Wednesday.  I'll post the results of the various tests as we get them.

-Chris

Up and down...

I'm beginning to think of this disease and Marye's condition as a day-by-day, or even hour-by-hour thing.  On Sunday, after the ERCP, she woke up feeling really good.  She had color in her face, she was eating, and even joking around with the doctors.  And with the steady stream of antibiotics, it looked as if her infection was really under control.  But just a few hours later, her temperature was climbing, she had a lot nausea, and generally felt like crap.  Well, as our recent experience with these symptoms indicated that she was suffering from infection again, I (once again) diagnosed her as having another infection.  She felt so bad, that she actually asked for some morphine, which she never does.

So the morphine helped her sleep and the phenergan got the nausea under control, but I was all over the doctors when they came in on their morning rounds.  Of course, by this time, her temp had gone back down and she was feeling ok.  Dr. Vitale had previously told me that they knew that her infection was from a Gram-positive bug, but they were waiting for the final path report to find out exactly what kind of bug it is.  And gram-positive bugs are not typically from the biliary tract or any internal organs, but most likely some sort of staph infection that can be introduced through a port or IV site.

Anyway, this morning, they came back with the final path report and it's enterococcus, which looks like staph, is Gram-positive, but can come from the colon, biliary tract, or digestive system.  So, we still will probably never know exactly how she got it, but she's got it.  The good news is, this is a strain of bacteria that is susceptible to Vancamiacin, which she's getting plenty of, so they should be able to control it.  But just to be sure, Dr. Vitale contacted the infectious disease doctor at U of L and asked him to take a look to see if there is something else they should be doing.  He did stop by, and we'll see him again tomorrow.  Again, though, the Vancamiacin should take care of this.

As far as her discomfort goes, the doc says that until we really start treating the tumor itself, she's likely to have many ups and downs.  There is, after all, a large mass in her liver that's putting pressure on the bile duct and other things.  So until they can shrink that sucker, she's going to feel lousy.  I'm grateful that she doesn't have pancreatitis after the last ERCP and that she was able to take some morphine without suffering her usual side-effects.  So between that and the anti-emetics, she might get through this with a little less suffering.

Tomorrow (Tuesday), she's scheduled to get a core biopsy on the tumor itself, so by the end of the week we should have a definitive diagnosis as to what kind of cancer it is.  Then the treatment can start.  She'll probably stay in the hospital tomorrow night and come home Wednesday, but that will depend on how she does with the biopsy and what the ID doctor says about her infection.  I'll keep you posted.

-Chris

Another ERCP

Ok, this morning Marye had another ERCP to replace the stent she had put in last month.  The theory was that this stent was the source of her persistant infections.  Anyway, Dr. Vitale found the stent in position, but removed it anyway and put in two stents side-by-side.  This will keep the duct open even more and over a longer reach.

She was done with the procedure in about 90 minutes and has been sleeping ever since.  My concern was that she will get another bout of pancreatitis like she did the last time, but the doctor said that was less likely, since it's usually the first ERCP that irritates the most, and he didn't even approach the pancreatic duct this time.  So we're crossing our fingers.

Anyway, the stents are in and she's still receiving antibiotics for her blood infection.  Another thing he told me was that the bacteria they found in her blood is not usually from the gall bladder or bile duct, but more often results from a picc line or port.  Since she has neither of those, it's likely a result of all the IVs and blood draws she's been getting.  So the infection may persist, or it may never come back again.  And we may never know the cause of it.  But she's been stuck so many times in the last month that I imagine she'll be at risk without some good antibiotics.

Ok, back to our story: I don't know how long she'll be in the hospital, but the next step is to get the core biopsy on the tumor.  This might happen on Monday, but since it's a holiday, more likely Tuesday.  I'll keep everyone posted when I find out.

Bottom line: she's feeling drowsy but better.  The ERCP was a success and she should be able to eat more substantially soon.  BTW, YouTube has a bunch of videos demonstrating the ERCP, including this one, showing the deployment of a metallic stent and the bile draining.  Marye's stent is plastic, but they may go to a metal one eventually.

-Chris

More infection...

The saga of the irritated stent continues.  After getting another CT scan last night, the doctors see that the gall bladder is inflamed.  Also, Marye has some infection in her blood, and her bilirubin level is elevated, so they're going to do another ERCP to replace the stent.  She's currently on IV antibiotics, so the infection should remain under control, but it's another procedure that she's going to have to get through, with all of the complications that go along with it, i.e. pancreatitis.

Dr. Riley said that her pathologist looked at the last two CT scans and he also believes it's not breast cancer, so the core biopsy is next on the list to get a good diagnosis.  Then we can talk about treatment.  I'm afraid, though, at the rate things are going, that is still at least a week away.  The good news is that the tumor doesn't seem to have grown since the first CT scan in early August, and when they do finally get around to the chemo, it will track down and kill any errant cancer cells that are floating around.

Speaking of that, I asked Dr. Riley about the possibility of doing radiation until Marye is strong enough to start chemo.  She said that it's really not the best option, since the lymph nodes around the liver are also active, so even though it's still localized, it's not small enough for radiation to be effective.  Chemo is the way to go on this.

I'll post again after she has the ERCP to replace the stent.  Hopefully that will be today.  Tomorrow at the latest.

-Chris

Back to square one...

Today was Marye's appointment with Dr. Riley, her regular oncologist.  We were hoping for some good news-- an aggressive treatment plan to finally address the tumor in her liver.  Well, yesterday, Marye was feeling lousy all day: nausea, pain, etc.  Today was no better.  She hasn't eaten anything since Tuesday night.  So at the doctor's office, her temperature was 101.9 and her heart rate was 110 bpm.  Not as bad as when she had the infection last week, but close.  In any event, it was enough for Dr. Riley to be concerned about, so she admitted Marye into U of L hospital to get it under control.  The reason they do this is, if she has an infection that gets into her blood stream -sepsis- things can go downhill really fast, and only the hospital can deal with it.

More revelations (or more confusion, actually): Dr. Riley is not entirely convinced that her tumor is metastatic breast cancer.  The initial CT scan report did say that it was possible, but that it looked more like our old friend cholangiocarcinoma.  But the pathology report came back as being estrogen-receptor positive, an indication of breast cancer.  But Dr. Riley says that bile-duct cancer can also be ERP, and it really doesn't look like breast cancer to her.  Given that she is the first real medical oncologist we've seen that specializes in this, she's probably the best person to judge.  Anyway, she wants to get a full-core biopsy (as opposed to the needle that was done at Clark), and she wants to check for HER2, which is subset of breast cancer.  Neither of Marye's previous cancers were HER2 positive, but apparantly, the biology can change when it's metastatic.

So now that she's in the hospital, she can get her infection treated, (she's getting a CT scan right now), and they can do the biopsy on the tumor.  Hopefully they can start some treatment on the actual cancer before too long.  Again, while she's as weak as she is, she's not in any condition to start chemo. 

Sorry for the bad news.  I wish it was better.  In fact, I wish that just once, I'd have some good news to post about this whole thing.

-Chris

One step back, two forward...

Sorry, folks, for the delayed posting here.  It was a busy weekend.  We last left our intrepid patient when she was in the hospital for an infection of unknown origin.  Well, she felt pretty good on Saturday afternoon after eating, but she had some roast beef (which was delicious, I have to say), but somewhat greasy and heavy.  So, that didn't sit too well with her and she was up all night with a lot of pain in her belly.

Again, to make a long story short, the doctors all came in on Sunday and declared her infection to be gone.  Her fever was gone, her white blood cell count was good, etc.  Also, her bilirubin levels were normal, indicating that the stent is working just fine.  But, she was in pretty bad shape, nutritionally.  Remember, she really hadn't eaten well for about a month.  Her phosphates and potassium were low, as well as some other things that we all need but don't think much about.  The doctors feel that her pain is just an upset stomach that's being introduced to food all of a sudden.  So they had her stay in the hospital one more day to keep her hydrated and get her nutrition back in order, then sent her home on Monday with orders to keep eating bland food for a while and slowly build her diet back up.  She's also drinking Ensure to get some extra calories.  Finally, they gave her some antacids-- Nexium, etc.-- and some more antibiotics to make sure the infection stays gone.

Right now, she's home and eating.  She is still rather weak and feeling beaten up after spending so much time in the hospital with the IVs and what-not.  Another tidbit: Marye has terrible veins, so every time the have to stick her to give her fluids or take blood, it's a battle for the IV nurse.  She would make a terrible heroin junkie, unless she were to smoke it.

Anyway, aside from some acid reflux and a lot of fatigue, she's doing pretty well.  We have an appointment with her oncologist on Thursday, so we'll get the treatment plan then.  One thing we discussed with her GP was that since she's still pretty weak, it might be better to start radiation instead of chemotherapy right away.  That way she'll get some treatment to attack the tumor without the side effects of chemo.  It's easy to forget that we're still just treating the symptoms of a severely blocked bile duct, and haven't even addressed the cancer, yet.  So, that's a discussion we'll have on Thursday.

Hope everyone is doing well and I'll have an update NLT this Friday.

-Chris

Wrong again...

So, I need to stop trying to diagnose Marye when she has various symptoms.  In my last post, I knew she was sick, but I thought that her symptoms were from a stomach virus.  This is why I'm not a doctor.  I took her to the hospital with a 102.6 degree fever and vomitting.  When we got to the ER, her heart rate was racing-- 150 bpm.  So they hooked her up to the EKG and found her heart was ok (no heart attack), but they were worried about it and her fever.  She was also very dehydrated and her white blood cell count was slightly elevated.

To make a long story short, she has the symptoms of an infection, but they don't know where it is.  The theory is that the stent is either irritated or infected.  Against her wishes, they admitted her to the ICU to keep her on fluids and antibiotics.  On Friday morning, her GP came in and was talking about doing another ERCP to look at the stent.  Well, I figured that Dr. Vitale put the stent in, and he's the expert in the biliary tract, so I told the GP that Marye should probably go back to Norton Hospital.  He agreed.

Friday night, she was transferred to Norton and Dr. Vitale and his minions all came in to check on her.  I was impressed that they were there so late.  Anyway, they said that they'll continue to treat her for an infection of unknown origin and it they can avoid going back down her throat, they will.  But if she doesn't improve, they'll go back in and check her out.  If the stent gets infected, that's considered an emergency, so they'll do it even if it's the weekend.  One good piece of news: her bilirubin (bile levels) are down, so the stent is still allowing the ducts to drain.

So, as of Saturday, 1:30 pm, she's resting at Norton.  I talked to her this morning and she ate some lunch and is feeling a little better.  Maybe the antibiotics are working.  Oh yeah, Marye's mother Doris came up from Nashville yesterday, and I took her over to see Marye.  Doris has been really worried since this whole thing started, so I asked her to come up for a few days.

Anyway, I'll be checking in with Marye here in a little while.  I don't know when she'll be discharged.  I'm sure the doctors want to see her infection symptoms go away and see if her appetite will hold up.  I'll keep updating this when I learn something new and get a little time.

-Chris

One step forward, two back

So, for the last few days, Marye's been feeing a little bit better each day.  We think the pancreatitis is easing, she's not jaundiced (so the bile duct stent is doing it's job), and she's been able to eat a little bit more, as long as it's in small portions and low in fat.  I made a couple of Cornish game hens this week and she's been nibbling on the leftovers (dry white meat).

Well, today she wakes up with severe chills and nausea.  She's been throwing up pretty consistantly and I'm seriously getting ready to call the doctor to have her admitted if she keeps it up.  Damn.  I gave her a Phenergan for the nausea, and she threw it right up.  Due to her chills, I'm thinking this may be a stomach virus or flu or something.  But I'm watching her closely and trying to get her to get something down.


More bad news: Marye's oncologist is out of town at a conference until next week, so we have an appointment on Thursday, Sep. 1.  It's frustrating to have to wait, but really, the only thing we were going to talk to her about was a chemo treatment plan, and Marye's in no shape to start chemo now, anyway.  So we wait.  I'll give her a few more hours of puking before I call the doctor.  I did manage to get a prescription for Nexium, so maybe that will ease her stomach some.

Sorry for the sad news, but I haven't updated in a few days and wanted to keep everyone up-to-date.

-Chris

Dr. Martin

We got the results of the PET scan today.  Aside from the mass in the liver and some surrounding lymph nodes that we already knew about, there are no other masses or areas of concern throughout the body.  Dr. Martin is not recommending surgery, but will send Marye to her breast cancer oncologist to figure out what the best chemo treatment is, then start that.  He said expect about 2-3 months of chemo before we even talk again about surgery.  So, basically... nothing new.

As far as her condition goes, she is still having quite a bit of pain in her abdomen, and she's very weak.  That makes sense since she hasn't had a good meal in more than two weeks.  She's also lost about 10 lbs., but that's due to not eating and not the cancer.  The doc says the pain is from pancreatitis and possibly stomach gastritis, so he will prescribe Nexium or something, and she should take some Mylanta or Maalox.  Also, he wants her to start getting more calories, so I'm off to the store to get some cans of Ensure.  She can eat (or drink) anything soft and low-fat.  The pancreatitis should be easing up soon.

We're expecting an appointment with Dr. Riley, her oncologist, this week.  After that, we should have an idea of what kind of chemo to expect.  It's complicated, since they have to see what she has had in the past.  Due to the toxicity of certain medications, there is a lifetime limit on how much a person can get.  I love chemotherapy: the idea is to poison the cancer tumor and kill it just a little bit faster than the chemo will poison and kill the whole body.

Ok, that's it for now.  I'll keep posting on how she's feeling and such.  Thanks to everyone for all the kind words we've gotten.  Marye would love to talk to you all, but she's just feeling lousy all time.

-Chris

PET Scan

Ok, today we went back to Norton Hospital in Louisville where Marye got a PET scan.  This will tell the doctors if there are any other tumors anywhere in her body.  We have an appointment on Monday morning with Dr. Martin, where we should get the results of today's scan and get the treatment plan.  Until then, Marye is home and trying to eat some.  She's still not feeling well, so I hope that changes.  Next update will probably be on Monday, August 22, 2011.

-Chris

The Beginning

On Saturday, July 30, 2011, Marye woke up with some indigestion.  She was exposed to a stomach virus, so she thought that was her problem.  Her symptoms were some mild nausea (she did throw up) and a persistent knot in her abdomen.  Again, she thought it was a virus.  After about a week, she finally decided to go to the doctor to see if she could get some relief from the symptoms.  Also, we thought maybe she had the H. Pylori virus that causes ulcers.

So on Sunday, 7 August, 2011, she went to the local clinic.  The doc started some tests, including liver tests, and noticed that she was jaundiced.  I didn't notice that.  The blood work indicated that her liver funcion was bad, and the jaundice indicated that she had a blockage of bile.  The doctor thought it was gallstones and admitted her to Clark Memorial Hospital in Jeffersonville, IN.  So she was in the hospital.

Over the course of the next 24 hours, she got a CT scan and more blood work done.  The initial CT scan indicated that there was a "sludge" in her gallbladder that was blocking the bile duct.  This made sense, given her symptoms, and we were thinking a laparascopic procedure to remove the gallbladder.

However, on Monday, the doctors told us that the CT scan actually showed a large (8 cm) mass on or in her liver.  This what was likely causing the bile duct blockage and her discomfort.  So the plan was to perform an ERCP to try to place a stent in the bile duct and allow the bile to drain.  Unfortunately, the ERCP was unsuccessful, as the doctor was unable to get even a wire-- let alone the stent-- into the severely blocked duct.  Her discomfort continued.  In fact, it got worse, as the ERCP likely caused a bout of pancreatitis by irritating the pancreas.

On Wednesday, she got a needle biopsy done on the liver mass, and the doctors said that the tumor markers were high, indicating that it was malignent.  This is when I first heard the term cholangiocarcinoma-- bile duct cancer.  And after doing some research, we were distressed to discover that it is a very aggressive cancer that has a very poor prognosis due to the advanced stage at which it is first diagnosed.

Ok, so she was pretty sick through the week, and we were waiting for the pathology reports.  But they released her from the hospital on Friday, and the doctors were pretty confident that it was cholangiocarcinoma.  End of Week 1

On Monday, August 15, 2011, we got a call from the Brown Cancer Center in Louisville and she had an appointment that afternoon. At the same time, Marye's cousin, Barbara Jean, was northbound to come see how Marye was doing. Well, Barbara Jean arrived and we all headed to Louisville where we met Dr. Martin, who convinced us that he is the right guy to treat this cancer. Seriously, check out his resume..  Also, Dr. Martin was very confident that his partner, Dr. Vitale, would be able to successfully place the stent during another ERCP.  After some more research, I see that these two guys have been working together on this very condition since at least 2000, so we're thinking that we're in the right place to treat this cancer.

So, the plan is to get a whole new set of CT scans and blood tests to determine exactly what kind of cancer this is.  He was very confident that it was cholangiocarcinoma, and the only treatment is to shrink the tumor with chemo, if necessary, then surgery to resect the liver and tumor.  On Tuesday, she got the CT scan and bloodwork, and we went home.  On Wednesday, after some back-and-forth with Dr. Vitale's office, she had the ERCP and he was able to insert the stent into the common bile duct.  It was late at this point, so he admitted her into Norton Hospital in Louisville.  Anyway, I was expecting some kind of miracle as far as her discomfort was concerned, so I was very distressed to find that it can take 48-72 hours for the irritation to subside.  No such luck.  She was sick all day Thursday and Friday, with elevated liver enzymes.  However, on Friday evening, the liver numbers looked better and Dr. Vitale discharged her.  She still feels lousy, but we're hoping that that will change in the next day or so.

In the meantime, the final pathology reports came in and -- surprise-- it's not cholangiocarcinoma at all, but metastatic breast cancer.  Oof.  So, here's the deal.  On the one hand, this is good, since breast cancer, even metastatic, is much easier to treat than the rare and aggressive cholangiocarcinoma.  On the other hand, cancer that has spread to the liver is scary.  (Where else has it spread to?)  And in any event, the size of the tumor is still troublesome.  However, Dr. Martin says that no matter what the type of tumor it is, it's more the location (interhepatic) that will make this tricky.

So the plan is to get a PET scan on Saturday, August 20, 2011, to see if there are any other tumors.  That will determine the treatment plan.  If there is no more cancer, then we're anticipating chemotherapy to shrink the tumor in her liver before they try a resection.  If there is more cancer, then I don't know what will happen.  We have an appointment with Dr. Martin (the surgical oncologist) on Monday morning.

Current status:  as of Friday evening, August 19, 2011, Marye is home and in bed.  She is still having a hard time eating and has a lot of pain in her abdomen.  The PET scan is tomorrow, and I'll post an update after that.

Sorry this post is so long, but I want everyone to know how she's doing and what's been happening.  Future posts will be more regular and shorter, and hopefully more positive.

Barbara Jean