the ups and downs of Xeloda

My experiences with Xeloda have been a bit of a rollercoaster ride. 

+ It's easy... they ship it to me in the mail!
- Because it is not given in the office, insurance charges an expensive prescription co-pay (see more)
+ I am lucky to have an excellent insurance plan and Xeloda is on the formulary
-  The pills are huge... and taste like yuck!
+ I don't have to go into the dr's office for treatment
-  I have to carry the Xeloda around with me every day
+ They gave me a nifty pill container to use... handy for the photo-ops
- I have to take the pills on a full stomach... 12 hours apart
+ Great excuse to have extra cookies at 8pm every night!
- Xeloda is known to give people hand-foot syndrome (common side effect)
+ Great excuse for Mike to give me a daily hand/foot massage (thick lotions can help prevent HFS)


Overall, the side effects didn't seem too bad...particularly as we got out ahead of the HFS.  I began taking Xeloda on Wednesday, December 21.  The first few days were uneventful, but by Christmas Eve, I began to experience chest pain (it felt like someone was sitting on my chest) and heaviness in my arms when I would be on my feet/go upstairs/etc.  It subsided when I sat back down.  Not wanting to spend the holiday at the ER waiting room, I decided to stay off of my feet and waited until Monday to call the doctor. 

The on-call doctor did not think that the chest pain was related to Xeloda (cardiac issues present in <0.5% of patients on Xeloda), but suggested that I stop taking the medication until I had a chance to speak with Dr. C.  Trying to put this out of our mind, Mike and I spent the holidays with family -- both the extended Casills & Vogels. 

On Wednesday, Dec 28, after consulting with Dr C, I started back on the Xeloda.  Like clockwork, the chest pains resumed on Dec 31 and Xeloda joined the growing list of drugs that will not be options for me.  Of all of the changes in therapy, this was one of the most disappointing... I had high hopes for Xeloda... for both how well it might work and for the flexibility it would give me.  Apparently, it was not meant to be.  Back to the drawing board.


Xeloda photo-ops...

Taking Xeloda at Disney Princesses On Ice

Christmas Chemo (Christmas Eve)

Truck stop chemo... on the way home from Ohio

Oral Chemotherapy Coverage

Ironically, oral chemos often cost patients much more $ than infusion/IV chemos because of the way they are reimbursed (or NOT!) by health insurance companies. I was fortunate that my insurance covered Xeloda, but it was more expensive than the IV-based chemos that I have received ($40 copay + $20 Dr visit.... compared to just the $20 visit fee for IV chemo). Many people aren't as fortunate as I am and are faced with tough decisions about oral chemotherapy.   I have met women faced with a choice between spending hundreds of dollars out-of-pocket each month (for Xeloda) vs. passing up a reasonably well-tolerated option that could keep their cancer from growing back.

Several states have recently passed legislation on this issue, requiring insurance companies to reimburse oral chemo comparably to IV chemos.

The NJ state legislature has recently passed a bill on this topic and it is now awaiting Governor Christie's signature... please take a moment to read this. If you live in NJ, please click through to email the Governor... if you live outside of NJ, please research the status of such legislation in your home state.

https://secure.info-komen.org/site/Advocacy?cmd=display&page=UserAction&id=1043

Next up: Xeloda

It's back to the drawing board to determine the next step in my battle plan against this beast.  While the adriamycin has certainly done some great work (I'm no longer in pain and Dr C can no longer feel the tumors/liver),  the "personality of my tumor" and the fact that I become "symptomatic very quickly" makes Dr C reluctant to give my body a break from the chemo. 

It's pretty entertaining to hear Dr C talk about my cancer as if it was another person.  The chemo I had after my initial diagnosis left the cancer in hiding for many years (nearly 5!), which tends to be a sign of a slow-growing tumor.  Plus, "it" let us push it around with the Abraxane for quite a while (July '10 - Feb '11).  These two characteristics would make one believe that I have a wussy, sloth-like tumor. 

While that may have been the case initially, something has definitely happened to change the personality of this tumor (Dr Jekyll --> Mr Hyde?).  When it came back after the Abraxane, it came back with a vengeance.  The tumors in my liver were "too numerable to count" and my liver was swollen and causing me significant pain. 

Given this new "Mr Hyde" of a tumor, we plan to continue our attack.  There are a number of chemo regimens still in our armament:  Navelbine, Gemzar, Xeloda, CMF, Halaven, Carboplatin... 

The next one we plan to try is Xeloda.  Xeloda is actually an oral chemotherapy.  In the body, it changes into 5-FU, which is a very long-standing weapon in the fight against breast cancer.  Being an oral, it gives us a bit more flexibility to work, travel, etc... without having to be at the oncologists every week.

Most patients tolerate Xeloda fairly well and I know a number of women who have been on Xeloda for months and months, holding their cancer at bay.  I am excited and hopeful to see how Mr Hyde responds to Xeloda.

so long red devil

My weekly dates with the red devil (adriamycin) have become fairly uneventful.  Every few weeks, Dr C examines my belly and he too seems impressed with the progress.  I am no longer in excrutiating pain when he pokes and prods around my belly and he can no longer "feel" my liver (it was so swollen back in August/September that he could feel the "fullness" and would use his measuring tape to note where the tumors were). 

Adriamycin is part of a class of drugs callend anthracylcines (Adriamycin/doxirubicin & Ellence/ebirubicin are two common anthracylines used to treat breast cancer).  While these drugs are considered quite effective, they carry with them a risk of cardiotoxicity that increases with each subsequent dose. 

Cumulative risk of chronic heart failure
Source: http://annonc.oxfordjournals.org/content/early/2009/01/19/annonc.mdn728.full

Here's where we dork out a bit... you can see in the figure above that the risk of CHF (chronic heart failure) is quite minimal at cumulative doses below 400-500 mg/m2.  At these lower cumulative doses, the benefits of the drug greatly outweigh the risks.  However, above 500 mg/m2, the risk of CHF begins to increase significantly... and the effects are irreversible and, potentially, deadly.  If you really want to get into the details, check out the link below the graph above.

As of this December, I have received 425 mg/m2 of adriamycin (including the 4 doses I had in 2005 + the weekly adriamycin I have been receiving since September).  Even though the adriamycin seems to be working, we are at the point where the risks of further treatment will likely outweight the benefits.  Given that I am still feeling relatively healthy and there are a number of other chemotherapy regimens out there still to try, we will be shelving the adriamycin and moving on to another drug (TBD). 

There may come a day when the benefits do outweigh the risks of adriamycin (if we do not find another drug that controls my tumor burden)... so we may see the red devil again someday... but for now, I thank her for the work that she has done for me and I look forward to the next stage of this battle.

Georgia on my mind

In the spirit of spending as much time as possible with friends and family, I spent a long weekend in southern Georgia, visiting with my dear friend Sarah and her family.  Sarah actually lives in California, but her parents have a beautiful home on Saint Simons. 

If you have never been to the Golden Isles of south Georgia, I highly recommend it.  About an hour north of Jacksonville, FL, there is a collection of islands boasting some of the most pretty beaches I've ever seen... plus, there is an added bonus of ample "Waffle House" establishments... and everyplace serves "sweet tea"! 

I've had the privilege of visiting the Jarvis's on Saint Simons a few times over the years.  Again, this visit was a little different from the previous... gone were the days of dancing all night at Ziggy's (where the "Golden Isles Shag Club" meets to dance  -- you can learn to shag here!)... instead, we opted for early evenings so that the early-morning wake-up call from Sarah's two lovely daughters wouldn't be quite as painful (and, to be honest... we were both falling asleep on the couch after dinner!).  I've included a few pictures that give you a glimpse into Christmastime in southern Georgia:  a few pictures from the Christmas parade... plus some shots from the beach, where the locals & tourists have collectively contributed to decorating a pretty "driftwood Christmas tree".  The blue and yellow bulbs on the tree had been placed by Sarah's daughters a few days prior, when they had gone for a walk on the beach with Grandma Wibs!

Catching up: October in Boston

My grammy turned 80 in August.  My mother and her sibs planned a big bash to celebrate.  I spent hours putting together a photo montage for her.  John drove up to NJ from DC and we all planned to head up to Carver, MA together... then Hurricane Irene decided to join the party.

If you've seen our house, you know we have walls of windows on two sides of the house and we back up to the woods.  These were features that made us fall in love with the house.  The uncertainty of the impending storm led us to the tough decision to stay in NJ and visit Grammy later in the year.  In hindsight, we may have been ok to make the trip -- we had no damage here and the main roads were mostly clear, but it just wasn't worth the risk at the time.

The first week of November, Mike and I rented a house on the bluffs of Manomet/Plymouth and headed up to MA to celebrate Grammy's birthday and spend some time with family and friends.  We had a great time visiting with Grammy, Grampy, Aunt Kathy, Aunt Mary Ellen and Gabriel.

My friend Abby and her daughter Collette came down to Manomet for an overnight visit.  We had a great time building with the new block set we got Coco for her 2nd birthday.  We also went for a drive down to the cape and visited the Thornton Burgess Society and Green Briar Jam Kitchen.  Coco really liked tasting the jams!  Afterwards, we had lunch at one of the local seafood shacks (Sam's, I think...but Abby can tell us for sure).  It was delish... though anything fried tends to be yummy. 

We were also able to organize a relatively well-attended "trudge psuedo-frisbee thanksgiving" on short order.  Some of you may already know this, but from December 1998 (when I graduated from RPI) until December 2005, pretty much the only time I saw Mike was at our annual "Frisbee Thanksgiving" reunion weekend.  It was a pretty great tradition for many years -- we would all meet up in Troy for a weekend in November and spend the day playing ultimate with the undergrad club team.  As the group grew larger, we would play a 4-team round robin with mixed teams... followed by the MAIN EVENT -- Alumni vs the undergrads.  Saturday evening would consist of a big, traditional turkey dinner (or to-furkey for us veggies!) followed by a night of reminiscing, "concentrating", and a midnight round of disc golf.  Sunday morning, the "old doods" would head to South Troy Diner for a greasy breakfast before we all went our separate ways.  Frisbee Thanksgiving has been the source of many entertaining stories, so be sure to ask Mike or I about it some day!

Anyways, this version of Frisbee Thanksgiving was a bit different... primarily because we were nearly outnumbered by the kiddos running around (18 adults - 11 kids!)... and secondarily because Jim and Sherry were gracious enough to host us all at their home (apparently, the group has *some* level of respect for real grown-up homes... compared to "frisbee-houses" in Troy!).  It was great catching up with the old gang and getting to know their incredible mini-me's.

Last, but certainly not least, I was able to spend some time hanging out at the beach with Maura F and Mike and I spent some time with my brother. 

It certainly wasn't a "relaxing" vacation, but it was definitely a productive one... full of friends, family and laughter.  There is just something about being on the ocean that, no matter how busy life gets, makes you take time to pause... breathe... and take it all in.

Giving Thanks

Where does the time go?  I guess the weekly trips back and forth to the oncologist's office establish the base rhythm of life.  A little bit of work and as much time visiting with friends and family fill in the rest. Apparently, updating this blog has not been the top priority -- apologies to those who use this as a source of info (facebook tends to be more up-to-date, but I do realize that not everybody has joined the facebook generation!)

The adriamycin appears to be doing it's job, shrinking down the tumors in my liver.  The pain has subsided and I have weaned myself off of the OxyContin.  What a difference that made!  The fatigue and general haze of that pain medicine really hit me hard.  Plus, it seems like with every medicine I take, I have to take something else to counter the side effects... all the anti-nausea meds to make the adriamycin tolerable... anti-constipation meds to make the OxyContin tolerable... seriously... it's a vicious cycle.

Mike and I hosted Thanksgiving in NJ.  10 Vogels and 3 Casills made the trip and we had a great weekend, cooking together, playing games, looking at old pictures, eating, and laughing....  a lot.  I don't typically get to experience a BIG family Thanksgiving, so this was a really special treat. 

This Thanksgiving, I am so thankful for...

• my family
• good friends
• the best dog in the world
• my (relatively speaking) good health
• the fresh air, the blue sky, the fall colors
• and, of course, green olives & Bob Long

Kraters

Mike and I were fortunate enough to enjoy visits from several of the Kraters (Mike's mom's side of the family) in September and October. 

First, Aunt Joan & Hugh stopped by during their vacation in the northeast.  We enjoyed a nice visit and dinner with them.

Then, in early October, Uncle Bud and Mary Beth spent a week in Philadelphia.  We were able to visit with them on several days and even caught game 5 of the Phillies vs Cardinals...

It was great to spend some time with Aunt Joan, Hugh, Uncle Bud and MB -- to share stories and laugh and get to know each other better.  Thanks for making the trip!

Ain't nothin gonna break my stride

2011 marked our 7th year of participating in the Susan G Komen Central and South Jersey Race for the Cure. We fielded our biggest and most successful team yet, with 22 members raising $6,414.

Break my stride was my absolute favorite running song during 8th grade cross country (I've included a link to an a-mazing video of Matthew Wilder... excellent entertainment value!).  It's just one of those songs that makes you want to keep going... you pick up your pace, regulate your breathing, focus your eyes on the finish line and kick it in to the very end. It was the obvious choice for a team name in the most important race of my life: Ain't nothin gonna break my stride

This year's race was the most physically challenging for me as well. While the pain in my gut had subsided somewhat, the chemo treatments and pain medicine significantly limited my physical activity for the past month or two. Determined to finish this race and supported by my amazing friends and family who joined me, I succeeded in completing the 5k walk (plus an extra mile each way to the car!) and it was a day I will always treasure.

Thank you to everyone who walked, ran or donated to support this cause. 

adria

It's a bit of a bummer that we had to rush home from Disney to head back into the oncologists office today.  I can't believe that just yesterday we were enjoying the sunshine and laughter of Orlando! 

Dr C seemed pleased with my progress -- some much appreciated good news!  While I've lost nearly 10 pounds in the past two months, my weight has stabilized.  This was good to hear as my appetite hasn't been very big and we've been worrying about how much I am eating.  Dr C said not to force it too much though... my swollen liver is putting pressure on my stomach, which explains why I am getting full so quickly when eating. 

That being said, the swelling does seem to be diminishing.  Dr C was able to do a fairly thorough manual exam and he was pleased with the size and the reduction in tenderness in my liver.  It all suggests that the adriamycin is doing it's job and reigning in these pesky liver tumors.  In fact, after another dose of adria next week, I may even get a week off from chemo, which would be a great break for my worn down body.

make a wish...

Thanks to Mike for keeping you all updated over the past few weeks as I struggled to acclimate to a new chemo, new pains and new pain management drugs.  It has been quite a ride... and thankfully, things are starting to settle down a bit.

My body seems to have adapted well to the daily dose of OxyContin ER and it seems to be working well to control the pain.  The only time I really feel the pain is when Marley gets ready to snuggle in for a nap and he steps on my gut ("making muffins")... but he's just so darn snuggly and cute, it's hard to be mad at him for it!

After much debate, Mike and I had finally come to terms with the fact that joining the Scott's for their vacation in Orlando just wasn't practical for us at this point.  However, at the last minute, we changed our minds -- buying tickets two days in advance and flying down to Orlando to join them at the Magic Kingdom.

I struggled a little bit with our flight down, feeling claustrophobic and nauseous on the plane... but after getting out into the fresh air, getting a bite to eat, and then taking a 3 hour nap at our hotel, I was feeling much better!  We went over to the house that the Scott's were renting and enjoyed some pool time with Char, Jeremy & Regan, Sandy, Dave & Jeremy, Kathy & Ginny. 

We got an early start the next day, arriving at Magic Kingdom just before opening.  The park truly is magical, seen through the eyes of 3-1/2-year-old Regan and 2-year-old Jeremy.  The characters, the rides, the music, friends, family... it was an incredible, magical vibe of love and laughter.  We took a mid-day break and headed home for naps (much needed) and then re-assembled at the park for the evening.  Parades, fireworks... we did it all! 

On Tuesday, we spent the morning at Hollywood Studios before heading back to the airport and back to NJ.  Our entire trip was just over 48 hours long, but it was worth every minute...

For as Jiminy Cricket says... "when you make a wish... and hold it deep in your heart... it just might come true."  We made many wishes over the course of those 2 1/2 days.   For good health... for healing... and for a lifetime of childlike love and laughter for all those who shared this experience with us.

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing
Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true