Xeloda break

I'm on the one-week break between rounds of Xeloda. I take it twice a day for 14 days, then get seven days "off."

I've been quite fatigued so have tried to only take on one activity per day. Last Friday I cooked dinner for friends; on Saturday Dunava had our last recording session in the studio; Sunday I visited with a friend and then could barely get off the sofa to eat dinner in front of the TV while watching the Academy Awards.

Yesterday I took my first walk with Bobka in several days. We managed to get around the block, and somehow I dragged myself to and from the grocery store. I crashed for a short nap and later some friends came over to visit.

Today Bob and I went for a longer walk, and I have a meeting of my support group for young women with metastatic breast cancer. I imagine I will crash on the sofa again this afternoon. Hopefully the fatigue will ease up in the next couple of days.

Top breast cancer blogger

I've been named one of the best breast cancer bloggers by Empowered Doctor (note the new logo/link at the top right of the page). I received this message a few days ago:

My name is Michael Foti and I am the Director of Business Development and Syndication for Empowered Doctor. Our company, Empowered Doctor, focuses on the latest healthcare news. Currently, we are news affiliates of The Chicago Tribune, Arizona Central, and CBSNewYork, supplying their website's health sections with the latest advances against cancer. Over the course of our extensive research on the topic of breast cancer, we came across your blog and I found it to have a plethora of great information and I believe it would be very appealing to our readers. We've recently launched a program to identify and publcizie someof the top breast cancer-related blogs on the web. As such, I'd like to congratulate you as your blog has been selected as one of Empowered Doctor's Top Breast Cancer Blogs. Again, I'd like to congratulate you on your selection, and if you have any questions, please feel free to contact me. Additionally, be sure to visit both CBSNewYork.com/health (on the right hand side under advances against cancer) and ChicagoTribune.com/health (and then click the cancer central tab) to see the continuous work we do for the fight against cancer.

One of the perks of being selected an Empowered Doctor Top Blog is being featured on a dedicated page on our website, as well as being profiled in upcoming articles. We would greatly appreciate you displaying your award badge.

Again, congratulations on your selection and if you have any questions please don't hesitate to contact me.

What next?

Mi shebeirach

This is what Dr G sang to me today:

Mi shebeirach avoteinu
M'kor hab'racha l'imoteinu
May the source of strength,
Who blessed the ones before us,
Help us find the courage to make our lives a blessing,
and let us say, Amen.

Mi shebeirach imoteinu
M'kor habrachah l'avoteinu

Bless those in need of healing with r'fuah sh'leimah,
The renewal of body, the renewal of spirit,
And let us say, Amen

They were singing it at home when his daughter suggested that this would be a good sing for him to sing to his patients. His reply: "I know just the person who will appreciate it."

Then he paid me the loveliest compliment, saying that I reminded him of Debbie Friedman z"l, the composer of this song. Not so much in the singing, but, I gathered, in the spirit he thinks we share. 

I was very moved, and we both teared up.

More on Xeloda

It's day 12 and I'm experiencing more of Xeloda's side effects. I've been more fatigued than usual, my hair is continuing to thin, and the soles of my feet are red but not yet too tender, today I had a little diarrhea. The neuropathy continues as well in my feet. My tumor markers are stable (they dropped by eight points.)

I saw Dr G today and he calls this drug "just tolerable." He examined my feet and hands (no redness on my hands now) and told me that he was more concerned with my ability to tolerate any discomfort than with any particular degree of redness. He was pleased that I'm using Udder Cream® and was even interested in the new socks I bought at REI which have built-in sock liners to reduce friction.

Dr G told me that the first round of a new chemo is the worst, because one doesn't know what side effects to expect.I am going to try another cycle of Xeloda and see Dr G again when finished.

Xeloda so far

I've been taking Xeloda for one week and already the soles of my feet are red. After showering, I noticed that my toes, balls of my feet and heels are more red than usual. Even though today is Valentine's Day, that's not the kind of red I hoped for!

I've been using Udderly Smooth cream day and night on my feet. I'm taking lukewarm showers. I've asked for input from friends. I'm not sure what else I can do except report this potential hand-foot syndrome to Dr G before it gets worse.

Happy Bob day!

Today Bob the dog turns eight years old. That's 56 in dog years. We all took a long walk, he has eaten several treats and chewed on a cow ear. Now Bob is taking a nap. What could possibly be a better way to celebrate? Maybe cuddling on a lap... but not much else.

Xeloda begins

Yesterday my mail-order pharmacy called to confirm shipment of my first cycle of Xeloda (capecitabine). I asked to have my signature required because if such an expensive package should disappear from my front door, I would be hard pressed to pay the full amount to replace it. This is a very expensive drug. The pharmacist was delighted to hear that I made this choice.

I've corresponded with my list serv, Club-Mets-BC (found at www.acor.org), and received some excellent advice on hoe to deal with side effects. Many people have done well on this chemo, and taken it for months. Hand-Foot Syndrome is common, which I've had before when I was taking Doxil. My list serv buddies recommended using Eucerin lotion with 10% urea for my hands and Udderly Smooth cream for my feet. (I could have used Bag Balm, which was developed for cows' sore teats, but it's very sticky.) Everyone recommended starting these lotions now to help prevent hand-foot syndrome if possible.

I take 1500 mg of Xeloda morning and evening, either with food or within 30 minutes of eating. I have portioned out doses for the rest of this week and will take my first dose tonight at dinner.

Let's hope Xeloda will be very effective for many cycles, with few and tolerable side effects.

MRI results: quick update

Yesterday's head MRI showed mixed results -- the old mets are stable or reduced in size, but two tiny (3 mm) new ones have appeared. I will start Xeloda as soon as the drug ships from my pharmacy.

The good news: Xeloda is a pill I take twice a day, so I'm not tied to the chemo chair every week. I'm starting at a reduced dose. We'll see about the side effects. The 21-day cycle is two weeks on the med, one week off.

I'll continue on the same other meds (Avastin, Aromasin and Faslodex). Dr G may add eribulin back in, depending on how well the Xeloda works.

Why no gamma knife? If any of the brain mets begin to bother me and cause symptoms that interfere with daily living, we will look into targeted radiation therapy. But if we used gamma knife now, there might be more damage from radiation scarring than benefit from the therapy. And Xeloda is his "go-to" treatment for brain mets.

I had a realization this afternoon while talking with Dr G. I can keep chugging along, even with new issues coming my way, as long as my quality of life is this good. I can cope with new stuff while living well with cancer. And when that changes, I'll deal with it as it comes along.

Head MRI

This morning I had a head MRI. Thanks to T for driving me so that I could take Ativan and relax in the MRI tube. I actually think I fell asleep for a bit!

This diagnostic tool might help Dr G figure out why my left eye was twitching, why I have a numb spot on my chin and why I have been "stretching" to find the right words lately.

Now, the funny thing is that except for the numb spot on my chin, all the other symptoms have disappeared. But Dr G wants to see me tomorrow anyway, to give me the results of the MRI. He also does not want me to have the scheduled eribulin chemo tomorrow.

My guess is that he looked at the digital images from the head MRI and saw something concerning. It could be more brain mets. If that's the case, I'm sure he will change treatments pretty quickly. We've talked about two possibilities already, but I will wait until I see him tomorrow before speculating more here.

Either way, I have been through much of this before. That doesn't mean it's not scary! But at least it's a familiar fear.