Hi there. I've popped up a few times whilst making the difficult decision along with my wife, Susie (TNBC, with mets to lung) to start Capecitabine. We are just having the DPD blood test. Susie is really struggling, constant cough, always tired and can't breathe properly now, it's horrible. So we need to do something and Cape it is!
Please share any recommendations on making Cape more effective, reduce side affects that really worked for you. We have creams for hand and foot condition which I know is a thing on this one. TIA, a scared husband and carer. X ❤️
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Winner123
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It's always scary to start a new line of treatment, but Capecitabine is quite tolerable. I also have lung mets (not triple). Susie may want to be checked for pleural effusion. That caused my coughing and sob. They can drain the fluid.The dosage of Capecitabine can be adjusted based on side effects. Also the initial schedule of two weeks on/one week off can be adjusted to one week on/one week off, (which works for me) or even 5 days on 2 days off. All depending on the side effects. The side effects for me are fatigue, hand and foot syndrome plus I noticed some memory loss. But I find capecitabine well tolerated and hope it will also work for Susie.
Thanks for being her advocate!
Anja
Ps just like me the picture❤️
in reply to
That should read...I just love the picture (it's early here 😊)Anja
What a lovely husband you are and such a wonderful photo! My husband ran out and emptied the shelves of every hand and foot creme on the planet. I find I cycle through them all based on how I feel.
Right now after completing my 9th round, my feet hurt the most. I out lotion on my feet, out on socks, then out my feet on an ice pack - bliss!
My hands are fine so long as I don’t get them under hot water so my 30 years of doing the nightly dishes has come to an end. Hubby to the rescue again.
I keep a journal of my side effects as does my husband. I am tired and deflated at the end of the dose but by the end of my week off I am ready to go.
God bless you and your lovely family and thank God for wonderful husbands! 🙏❤️
Hi! I’ve been on Xeloda since May 2020 - and most of my liver Mets are gone!! Amazing. I still work full time. 2 weeks on , 1 week off. At the end of my two weeks I’m tired, but it’s very tolerable. I’m in 2000mgs twice a day - but this month my hands and feet have cracked snd peeled so much I’m going to ask if my oncologist can review. They base on weight and I’ve lost 10 kgs (went vegan snd started intermittent fasting!) so I feel I need a dose reduction. Ask any questions you want x
Such a lovely picture. I can't help much because Xeloda didn't agree with me at all. But never mind there are other treatments. Don't be afraid to ask for a dose reduction if the side affects are to much. Very often these drugs work at the lowest dose. Glad you are writing here. Great place for information and consoling. Nice of you to be such a great support to your wife.
That's a wonderful photo! Beautiful mother and daughter! One thing to keep in mind is that we each react individually to each new med. So reliable predictions are impossible. Onc nurses are often great sources of information, and I've found both WebMD and Mayo Clinic websites to be helpful, too. I've not been on capcitabine myself but I know alot of us have a good response from it. Also, there could be "puffers" that could help Susie's breathing. Ask her onc if it would be a good idea for her to see a pulmonologist, the doctors who specialize in breathing. There are meds and breathing exercises that can help sometimes. The fatigue can be rough. Getting a good night's sleep can be helpful, but not always. I've found melatonin to be really helpful and most doctors okay it. I take 10 mg at bedtime. Would probably be better if I took it about an hour before, but I can never remember to do that! Sending healing thoughts your way......
I see you have a LO, how old is she? My daughter is 3 and half. What a fun age!
I have started Xeloda in April. I was in a bad place (Mets on liver have doubled in size in not even 2 months and my liver was not functioning properly anymore). Also I was going through a lot of pain.
After one month of Xeloda the pain was almost gone and liver functions were back to normal. I was scared to start Xeloda but my new oncologist said « we don’t have the luxury to do a clinical trial and see if it works and we should go for chemo »
Except for the hand and foot syndrome (and the fatigue but the fatigue I believe will always be a side effect of the heavy treatment we are having) for me Xeloda has been tolerable. I started at 3000mg 2 weeks on/1 week off but after 2 cycles went down to 2000mg a day. At the 6th cycle I have started 1 week on/1 week off because of neuropathy. I wish Susie the best with her new line of treatment.
Thank you Helen. We have two kids, Edith pictured is 3, Albert is 6. We need mommy around for many years yet! Susie is in a bad way today. She's struggling for breath, coughing, no appetite and we suspect cachexia now. We really do hope Cape does some good stuff! Fingers crossed, as always. Thank you for your reply. X ❤️
I’ve been on xeloda for 6 months. 2000 per day. Other than fatigue I have minimal side effects. My numbers have come down. I’m 78 and long retired.Cannabis helps with stress. If you have access to a pool - jump in. That is my greatest joy. And take the little ones with you.
Xeloda saved me. The Ibrance stopped working and my 27-29 cancer numbers went way up. I started on one week on and one off. It was too harsh on my body. Then one week on and two weeks off. Now we are trying 10 days on and 11 days off. When I got off after 10 days, I slept for a whole day. The next day til 2:00, and the third till 11:00. I am still on my 11 day off cycle. I have fair amount of energy. I spoke to the pharmacist about when and how to take the Xeloda. I am not a breakfast person. I was told to eat a meal and a full glass of water with the pills. For breakfast at 10:30 I eat a fruit (banana) crackers and cheese.
I have my 10:30 pm Xeloda with a large snack and dill pickle. Fermented food is good for you, but I don’t like sauerkraut.
I drink lots of ice tea without sweetener.
My cancer is in the lining of my stomach and I have a structure in my rectum.
I have loose bowels every morning. I bought large ice tea bags and thick pads. They can’t remove my hemorrhoids because with the cancer they won’t heal. I remove the tea bag string, put it in a bit of warm water in the sink and fold it the long way and put it on my tush between my butt cheeks. The thick pad absorbs and excess water. I wear the tea bag all day and my hemorrhoids and tush feel much better.
I also have several heating pads in the house.
I am in New York and I have a Marijuana card and take a pill at night. The pills make me loopy during the day.
Good luck with your treatments. My oncologist says this is a chronic problem and there are many treatments. I see him every three weeks.
I am in Rochester NY and have also gone to Sloan Kettering in NYC. Sloan works with hospitals world wide. A second opinion is normal.
I am sorry to hear about your lovely wife's symptoms, and it is very loving of you to reach out on her behalf.
Has she been checked for pleural effusion? That could be causing shortness of breath. Also, if a patient is experiencing shortness of breath but the doctor cannot find anything in the lungs that is causing it, the patient should be checked carefully for blood clots as well as for cardiac issues. Either of these issues may cause symptoms that appear to be lung related problems, when in fact they are not. Additionally, a condition called "pneumonitis" (inflammation of the lung), can cause shortness of breath and coughing. Since pneumonitis can be caused by cancer treatments such as chemotherapy and radiation, MBC patients may be particularly susceptible.
Cachexia is of concern, and I hope that the oncologist has spoken with you both regarding options. One might be Megace: recently a meta-analysis of 35 trials, comprising 3963 patients, for the effectiveness of MEGACE was conducted, demonstrating a benefit of MEGACE compared with placebo, particularly with regard to appetite improvement and weight gain in cancer. Higher doses were more related to weight improvement than lower doses. ncbi.nlm.nih.gov/pmc/articl...
Regarding side effects of Xeloda, the main issue is Hand Foot Syndrome (HFS). Below from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf is a list of mitigation options that are fully described in the book. For information about approved treatments by subtype, contending with side effects, and cutting edge research, visit insidersguidembc.com
I have your book, thank you for it. I just lost my copy so had to order another one immediately, so technically, i have two copies! I've just checked on the cachexia reference. Thank you for your response. Leo and Susie. X
And sorry, she has a few tumors in the lungs, we know that's causing the breathlessness, we need to tumor to shrink to help that. Fingers crossed as ever for the Capecitabine to be effective. X
Beautiful photo to treasure forever. I have no experience of Xeloda, just Ibrance so far, but I am praying and willing the meds to work for Susie and all of you to be able to get over this really hard period and for Susie to be able to enjoy her days again soon. It’s a nightmare disease at times but can be so changeable when the meds kick in. Love to you all.Debra xxx 🥰
Leo, since the Guide is continually updated as new research unfolds, you'll have the latest information!
I'm glad to hear that your wife got the DPD test. Hopefully it will put your minds at rest!
You may be interested in some of the studies below regarding the efficacy of lower doses of Xeloda.
Xeloda (Capecitabine) – Support of starting patients at lower dosages:
An analysis of dose modification and outcomes from four Phase II capecitabine monotherapy trials, one Phase III capecitabine/docetaxel combination trial, and an analysis of consecutive MBC patients who received capecitabine outside of a clinical trial concluded that reduced capecitabine doses were associated with a lower incidence of treatment-related adverse events, specifically hand-foot syndrome, diarrhea, and stomatitis.
Furthermore, time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. Together, these data support the practice of dose-reducing capecitabine, including the possibility of starting at a lower dose (<1250 mg/m 2 twice daily), to reduce the incidence of adverse events without compromising efficacy. clinical-breast-cancer.com/...
At the University of Southern California (USC) hospitals, capecitabine is routinely prescribed at dosages as low as 600 mg/m2 twice daily, with a majority of MBC patients receiving a flat dosage (not adjusted for BSA) of 1000 mg twice daily. In a review of 84 patients who received a median capecitabine dosage of 565 mg/m2 twice daily, the median PFS among the 62 patients with measurable disease was 4.1 months), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the two major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy. gotoper.com/publications/aj...
At MDA, clinical data were available for 113 patients (105 for response, 106 for toxicity). The mean capecitabine starting dose was 2220 mg/m2/day. Forty per cent of all patients required capecitabine dose reductions; fewer patients treated with 2000 mg/m2/day required dose modification (28%). Patients started at the lowest doses of capecitabine did not have poorer response rates or shorter time to progression. This retrospective analysis supports a starting dose of 2000 mg/m2/day because of its superior therapeutic index. sciencedirect.com/science/a...
No experience with cape. I just have to say you have a lovely family and I can tell how very much you treasure them. Even with this horrible disease, it’s great to be lucky in love. Sorry you and Susie are here, Leo. This group though is very supportive!
I am almost through my 4th cycle of Capecitabine (each cycle is 2 weeks on, 1 week off, with 1000mg dosage after morning meal and evening meal.
At the end of the first cycle, I developed a very sore mouth and tried a variety of treatments. The inside of my mouth felt like it was burning no matter what toothpaste or mouthwash I tried. But I eventually discovered the BEST treatment if your wife develops mouth ulcers. Tell her to try Squigle Toothpaste and Prevention Mouth Rinse—both of them are available on Amazon; and they were lifesavers! Your wife should always take the pills within one half hour of eating; it not only helps to prevent a queasy stomach but (I have read) helps the body to absorb the medication. The toothpaste and mouthwash should also both be used right after she eats.
I do not suffer from the hand foot syndrome so don't speak from experience, but I would definitely use Bag Balm if skin starts to redden on feet (also available on Amazon.)
Many prayers for you, your wife, and your lovely daughter. That photograph is precious!!
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