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!