A few Xeloda bits and pieces

Illustration by Joanne Negro from Wonder

Books' Let's Give a Party

I've obviously been thinking a lot about Xeloda these past few weeks.  "Thinking about" mostly means incessant Googling, worrying, wondering, and guessing.  But it also means talking with my oncology team and doing what they say.  So, and this is mostly for those of you who find yourself on Xeloda, but it's sort of a progress report, too, I have a few Xeloda related thoughts I'd like to share.

30% - Assuming I'm reading things right, Xeloda works in only about 30% of women with metastatic breast cancers.  That sounds terrible in real world stuff ("here, take this pill, it has unpleasant side effects and less than 1 out of 3 people found it either helped or at least kept things from getting worse"), but that's how these things go when your dealing with cancer.  I know I'm not going to convince anyone I'm made out of luck since I have this cancer thing plus I never, ever win raffles, but I feel like blessings are raining down on me that the first preliminary indications are that I'm one of that lucky 30%.  And the side effects haven't been so bad all things considered.

Fatigue - That's one side effect I've been feeling but I'm actually finding that in addition to early bedtimes and resting when I can, surprisingly a little moderately paced walk helps.  Well, that and sometimes coffee.  I'm finding that I'm having more trouble sleeping during my 7 days on weeks, so that might play into it, too, hard to say.

Nausea - This was hard the first week.  It wasn't the terrible all consuming nausea like I had the first day or two in 2012 before we got the right mix of antiemetic drugs during my stage III chemo, but it was happing a lot and it was unpleasant.  But I think I posted about my oncology nurse practitioner's advice to try taking a daily Prilosec (or 2 a day if it sort of helps but not all the way).  I thought it sounded a little unlikely to help since I wasn't having reflux or acid-type symptoms, but given that she's a) smart, b) experienced, and c) trained in oncology, I gave it a shot.  Besides, as she told me (and as I remember from 2012), traditional antiemetics tend to have more unpleasant side effects (sleepy, jittery, foggy, twitchy--tons of fun!) and if the Prilosec doesn't help those are still on the table.

And, I'm happy to report, I'm glad she's on my team because the nausea was much, much better the 2nd and 3rd cycle where I was also taking Prilosec.  I had a few waves of it during the week, but not so bad that I wanted to reach for my Compazine and not enough to impact my life.  I'm calling this a win!

Hand and Foot Syndrome - This side effect has been tricky.  I've been moisturizing all the time and had even taken to gooing up my hands and feet with Aquaphor ointment at night and walking around in white cotton gloves (think Mickey Mouse or a butler) to protect them, but was still finding my hands hurt and I was developing some raw spots on my hands and hard callus-like patches on the balls of my feet.  They seemed to be getting slowly better on my off weeks of the 7-days-off-7-days-on Xeloda cycles but starting up again quickly just a few days later when I was back on the on week.  It wasn't, so far, bad enough that I would need to cut back on the Xeloda but since the H/F thing is cumulative, it was a worry for me.

But, talking with my oncologist this week, she suggested trying 20% urea cream.  She mentioned Udderly Smooth Extra Care 20 as a good one, but the 20% urea was the important part rather than the magic of udder cream in and of itself.  As it turns out, my older brother (who, to the best of my knowledge can't predict future oncology recommendations, but I may need to rethink that one) gave me a tub of that at Christmas, so it was easy to give it a shot. 

One of my sisters-in-law always says to make sure you have the smart people on your team, and I'm glad I do because at least for me the 20% urea cream made a big difference.  The feet are better and the hands are a lot better in how they look and feel.  Everything isn't perfectly normal, but much easier to live with. 

I couldn't find the 20% urea Udderly Smooth in my local drugstore, but I did pick up some Excipial brand 20% urea cream to keep in my purse and desk because, like the Prilosec, things that are working without much downside are worth keeping on with.

Moving Forward - Well, first and most constant prayer is that the tumor markers continue to drop and future scans show things getting better or at least not getting worse, and that those things will repeat over and over again for a long, long time (or forever, because forever would suit me just fine). 

The fact that Xeloda seems to be working for me so far is a big win and the fact that the side effects are so far very manageable is also a win. As is the fact that, so far, there's no reason to need to drop down the dose or take and unscheduled break from it as has been my recent experience with the last few cancer drugs.

And honestly, for me, with the right steps, the side effects have been really manageable.  I'm able to work and cook, clean and take care of my home and family, do normal things without a whole lot of changes.

It seems from breast cancer forums I read that a lot of women are starting Xeloda recently.  It may be just that I wasn't paying attention before, or maybe it's that a lot of women started Ibrance when it was first approved and if you gave that the required 3-4 months and then a different antihormonal like Faslodex or Afinitor another 3-4 months, that brings us to now and Xeloda as a good first line chemo to try. 

If you're one of those women trying to find out what to expect with Xeloda, hopefully this will give you at least one snapshot of what at least the first 5-6 weeks of Xeloda can be like.  Not as good as not having cancer or not being on chemo, but not that bad, either.

And now I'm off to do the breakfast dishes (yes, it is after 12:00 noon now) and then I'll take down my Christmas tree and pick up some groceries.  Because I'm feeling well enough to do that sort of thing.  And that, to me, is exactly what winning is made of.

To exhale

Caspar David Friedrich's Wander Above the Sea of Fog 

I feel like I can finally stop holding my breath for the first time in 5 weeks.  Or maybe the first time in 9 months.  Whichever.

This evening I got a note from my oncologist with results of my latest tumor marker test and my tumor markers are actually down.  From 157 to 127 in  the past 5 weeks, just like that.

Finally another drug that's started out by working, thank God.

It's been a while. 

Except for a 1-time dip in June, I'm pretty sure this is the first time the tumor markers have been meaningfully down since July of 2014.  Even for most of my time on Faslodex, they were mainly holding steady.  And then, as regular readers will know, 2015 was a year of multiple failed drugs, ever increasing tumor markers, and scan after scan showing things going in the wrong direction.

It's a great relief to have some good news for a change.

I promise I really do understand that the expectation is still for the cancer to work it's way around Xeloda sooner or later, at which point we'll move on.  But at least Xeloda isn't another total failure (yes, Ibrance and Letrozole, Afinitor and Aromasin, I am looking at you). And even if Xeloda does punk out sooner rather than later, I figure we'll still be dealing with growth from a better point then we've recently been at.  At least that's something.  And you never know, maybe Xeloda will just keep on doing this beautiful thing for a while and exceed expectations.  It could happen just that way.

For me, for today, I will celebrate this little victory. Tomorrow will bring what tomorrow will bring whether or not I dance and cheer tonight.  And especially after 2015, where this cancer is concerned I'm glad to finally have something to cheer. 

And I can finally stop holding my breath, stop waiting and wondering whether Xeloda is going to do anything at all.

Nice start, Xeloda, thank you.