Fed ex was supposed to deliver my Xeloda Wednesday morning. That's what the specialty pharmacist and my onc's nurse had told me, and I even got an email saying it was out for delivery that morning. My husband put off some things he'd planned to do so he would be here to sign for the first delivery. It didn't show up until after 4 pm. I couldn't reach anybody at the cancer center to tell me if I should start it Wed pm or Thursday am, and hadn't heard if my blood work had given us the green light to go ahead with it. I was more frustrated than I've been since I was first diagnosed! Thursday, I had to phone 3 times to reach anybody that could tell me to start it.
I'm on 2000 mg twice a day, after a meal, with plenty of water. Thurs evening and yesterday I took the Rx anti nausea meds I was given. Very mild sense of digestive trouble. But yesterday and so far today I've not felt a need to take it.
My first real "chemotherapy" since diagnosed with denovo MBC in March 2004, almost 19 years ago. I've done so well and feel really fortunate!
I'm still having to use a walker to get around. I have neuropathy in my lower legs and feet (and hands as well) from damage from spinal stenosis. My balance is off! I'm still going to PT twice a week and it helps some.
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PJBinMI
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I've run into somewhat similar problem with my Ibrance in the past year. Only been talking it for a year. AND I am also on a walker for a different medical problem (I have several actually) so I sympathize PJB! Hang in there! The knot doesn't stay tied forever. I've had more good days than bad. Hope you've been getting some relief & feeling better.
Hi PJB- I’m in awe of how well you have been done all with MBC! In Feb 2004 was when I was dx’d with BCa… and after treatments had 16 blissful years on no worry… but of course it was there growing slowly. And now we are both here on cape with in one month of each other. At Xmas, I started on 3000mg/ day and blistered in first week so they cut me down to 2000mg/ day until I am better. Please Do get the 40% urea cream for your feet at night and maybe in the morning. My mistake was too much walking and playing sports during that time… then had to be off my feet while it healed up. But now I am ready ti go back up to 2500mg/ day as advised after my next 7 day off period. Good luck and let’s compare notes!
So you know, if I’m not going to be home, I write a note to FedEx and put it at my door that they can leave the package, and they are allowed to leave it. You may want to ask your specialty pharmacy if you can do the same. Sorry you had issues.
That's great news about your journey. Follow Bettybuckets' advice. Also, if your feet start to get the hand and foot syndrome, tell your doctor ASAP. Try to get your dose lowerd.
As for signing for your drug, I didn't have to. If coming by FedEx, you can sign up through them to leave special instructions about your delivery.
I'm confused about hand -foot syndrome. I thought it meant neuropathy related to chemo bbut so many here mention dry skin... I have neuropathy but not from chemo, from spinal stenosis that puts pressure on the nerves to my hands and feet. I've had PT and OT. I have almost no feeling in my feet and my balance isn't good. On a day to day basis, it's my worst symptom.
hand foot syndrome is different from neuropathy. It is when your hands and feet become dry, red cracked and sore. I think it’s because the medication gets into the capillaries of your hands and feet but that is not a medical definition.
For some people it’s just minor dryness where for others their hands crack and peel, and their feet get blistered, this is why it’s recommended to use a good quality moisturizer on your hands and feet several times a day.
You might also lose your fingerprints. This makes your hands a bit slippery. I have become a total Butterfingers !
all in all it’s more in the category of annoying vs a huge deal for me. But for some women, it becomes hard to walk or use their hands. Dose reduction seems to help with this.
Hand-foot syndrome is a side effect of certain kinds of chemotherapy. Some common chemotherapy medicines used to treat cancer can cause short-term damage to the skin cells and tiny blood vessels in your hands and feet.
What are the symptoms?
Symptoms can occur on your skin, most often on the palms of your hands and the soles of your feet. These symptoms may include:
Pain.
Redness.
Swelling.
Tingling or burning.
Tenderness.
Severe cases can cause the skin to crack, peel, or have blisters. Symptoms can sometimes occur in other areas, such as the knees or elbows, but this is less common.
Hand-foot syndrome can make it hard to use your hands and feet to do daily activities. Symptoms usually go away after chemotherapy treatment is finished.
How is hand-foot syndrome treated?
To treat hand-foot syndrome, your doctor may recommend lowering the dose or changing the schedule of your chemotherapy. In some cases, chemotherapy may be stopped until the symptoms get better.
Medicines may be used to help relieve symptoms. They include:
Medicines you put on your skin to reduce inflammation, such as corticosteroid creams.
Medicines you put on your skin for pain. These may be given as a cream or a patch on the skin.
Pills for pain or inflammation, such as ibuprofen or naproxen.
Moisturizing creams. Your doctor may prescribe a cream or recommend an over-the-counter (OTC) cream.
Placing ice packs or a cool, wet towel under your hands and feet when you get certain chemotherapy medicines may help. Always put a towel between the ice pack and your skin. Talk to your doctor about this treatment.
How can you care for yourself at home?
You can do things at home to relieve your symptoms and keep them from getting worse.
To help protect your skin:
Don't expose your hands and feet to hot water. Take cool showers and baths instead of using hot water. Rinse dishes in lukewarm water. When you dry your hands and feet, pat your skin gently with a cloth or towel.
Avoid being exposed to the sun for long periods of time. And avoid other sources of heat, such as saunas.
Don't do activities that cause rubbing or put force on your hands and feet, such as tennis or jogging.
Avoid using household tools that rub against your hands, such as screwdrivers or garden tools.
Avoid contact with household cleaning products, such as laundry detergent.
Wear loose-fitting, comfortable clothes and shoes.
Try to avoid walking barefoot. Wear soft slippers with non-slip bottoms around the house.
To help soothe your skin:
Cool the palms of your hands and soles of your feet with ice packs or cool water. Do this for about 15 minutes at a time. Put a towel between the ice pack and your skin.
Gently apply skin care lotion to keep your hands moist. Avoid rubbing or massaging lotion into your hands. This can cause friction.
Be sure to let your doctor know about any new symptoms or changes in your skin.
Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.
While I was on capecitabine, I lost my big toe nail. It did come back but it is ugly. Since I am not a sandal wearing person, it doesn't matter.
Oh boy! Does it! Nobody ever told me about this stuff or how to deal with it! Never even heard of it. Thank you!!!! & Here I just thought "it is what it is, deal." Way to go Photo-Bug. 👍
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