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

Wednesday, November 30, 2011

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

Tuesday, November 22, 2011

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

Saturday, November 5, 2011

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.