I realized it’s time for an update… but confess I’ve started and stopped this one a few times. Somehow when things are going along somewhat easily it’s easy to do the updates.This is the first one I’ve had to discuss side effects and I hesitated a lot about what to write and whether to post it. I wasn’t sure about talking about these things lest they be seen as complaining. My goal has always been to educate and inform above all.
Friends on Twitter assured me that talking about the daily in and out of chemo treatment for metastatic cancer is important. Not only are they learning what it’s like, but it tells people what I’m dealing with and what activities might be hard for me on a daily basis. One Twitter follower also said that for those who have family members with this disease and might not be forthcoming with detailed information, some of these updates give them an idea of what it might be like for their loved ones. While treatments and surgeries vary so much, I thought this was an excellent point.
I also have decided to post this information because I know other metastatic patients will find it through search engines and maybe it will help them. So… I’ve opted to continue to share these things. It’s the reality of cancer. It’s the reality of MY cancer.
I’m struggling at the moment with Palmar/Plantar Erythrodysesthesia or Hand/Foot Syndrome (HFS). This is a common side effect of Xeloda, the chemo I am currently taking. In short, the capillaries in the hands and feet rupture and the chemotherapy spills into the extremities. Redness, swelling, burning, peeling, tenderness, numbness and tingling can accompany it. While it does not always start right away, once you’ve had a few rounds it’s likely to be a cumulative effect.
After receiving another monthly IV infusion of Zometa to strengthen my bones on Tuesday, I started a new round (#5 for those of you keeping track at home) on Thursday night, and had to decrease my dose slightly to deal with the HFS. Rather than 8 pills a day (4000 mg) I’m on 7 now. The hope is that the HFS will stay at its current level and not progress on this dose. This is what feet start to look like with HFS:
It can get much worse than this with blisters and ulcerations but mine is not at that stage. If it were to reach that point we’d have to stop chemo until it healed and then re-introduce it. Driving was one of the hardest things yesterday, the pressure from the steering wheel (or anything against my hands) was difficult to tolerate. I wear cushiony gloves most of the day now and follow all of the guidelines to keep it at a minimum. My hands are more sore and sensitive than my feet this week but not as red as my feet. Thankfully while I could not hold a pen during most of the day, I could still do some typing. A long-term side effect of this particular drug is the potential to lose your fingerprints. I see an episode of CSI coming on that one! An article about the difficulty traveling with such a condition appears here.
Loss of appetite continues to be an issue but my weight has stabilized after a 20 pound loss in the first 6 weeks. It’s weight I needed to take off anyway, actually. I must eat twice a day when I take chemo and once I start eating I usually do just fine. I do better eating in the evening. My blood counts remained fine even during the weight loss and my instructions have been to “keep doing what I’m doing.” The one thing I can’t do is exercise at the moment. Friction on my feet can exacerbate the HFS so for now it’s not happening. A soon as the rib in my shoulder heals I will be trying to get back to Pilates class.
I’ll be back at Sloan Kettering on Tuesday, 12/11 to meet with my oncologist. We’ll evaluate the HFS by then and talk about ways to help me deal with it and make me more comfortable. We will also then be talking about what dose I will take for my next round and also start talking about when my next PET scan will be.
That’s the update for now, I’m still doing everything I can and am out and about as much as possible. I still bring the kids to the bus in the morning and try to do errands like the grocery shopping as often as I can. I ask for help with things that really are tough on my hands like stuffing the holiday cards or doing laundry or dishes. Even small tasks give me a sense of accomplishment and normalcy so while the weather holds I continue to do them. Once ice and snow set in and my concerns about slips and falls and bone breakage rise I will get help with more of the outdoor things.
I’ll have more pieces coming out on HuffPo shortly; thank you all for the excitement and congratulations about that new venue. My piece about what to do as soon as you are diagnosed, especially in regard to children, will be the next one they post. After that I’m looking at writing on the topics of bravery/inspiration, the situation when people you barely know take your condition as seriously as if they were family members, and the story of how I found out I had metastatic cancer to begin with. If you have any topics you’d like to see a piece about leave a comment or email me via the contact form and I’ll definitely take it into consideration!
Thanks for all of the support this week.