All about Xeloda
Comments
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Hi DP,
I usually take my X shortly after eating- I certainly don't wait 30 min or I might forget!
No issues with stomach, but I also take omeprazole every morning & I think that helps.
Hope it goes well for you
kt
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Hi, I just started Xeloda yesterday after failing taxol.
I have been reading through this thread for your experiences and gleaning advice. One question I have is that my hands always sweat when I wear gloves for cleaning, is that something I should worry about because of the risk of HFS? I worried that it will encourage the development of this side effect or make it worse if I do get it. I have had all the advice about moisturising my feet and hands but nothing beyond that.
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Some degree of HFS will always happen. The researcher's consensus is that capecitabine (the active ingredient of Xeloda) transforms and leaches through capillaries at the extremities (hands and feet), killing skin cells (shortening their lives). Therefore, whatever you can do to minimize stress, rubbing, pressure on hands and feet will help keeping these cells alive a little longer. Even long walks are bad: we went on a two-mile walk in Central Park a couple of weeks ago, wearing just sandals, and my wife's feet were all full of ulcers at thee end; we learned a lesson!
All remedies described here are palliatives, meaning that they do not prevent the occurrence of HFS, but try to soften the blow, making HFS bearable. I have to say after having researched the literature extensively that most are ineffective. The only one that seems to make a difference is a uridine based cream which I started preparing at home because it is unknown in the US, and undergoing clinical trials in Europe.
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Thank you Xeloda! Just got the results of latest PET scan on My Chart and all but one liver met have resolved (radiolologists term) and he did not mention bone mets at all. This is not the usual radiologist who reads my scans but I am putting faith in him and being very thankful. I will put up with the SE of Xeloda for these results. Wishing and hoping for these same results for each and every one of you.
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Hey guys
Anyone over emotional? I have nearly finished two cycles and so far so good physically, but taken with the steroids for the mets in my eye I am so emotional, happy and angry and energy like an energiser bunny. My husbands 5 year affair is now infuriating me (we are living in different countries at the moment as I am setting up my kids in the UK, which is working out really beautifully), but I basically accosted a rude security guard yesterday for messing with me.
What's happening????
heheh
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Hello Crone,
My recommendation to you is to not wait for side effects with the intention to put up with them, but to be proactive.
If Xeloda is working well for you, you don't want anything to change that. My understanding is that side effects can be so bad that your physician may decide to take you off the drug for several weeks, or switch to another drug altogether. This is what happened to my wife. The researchers I've been corresponding with, recommended a proactive approach, starting an effective counterattack of the HFS side effect, even before any symptom appears.
HFS (hand foot syndrome) may appear a few weeks up to two months after starting Xeloda. They go from reduced sensitivity, to itching, burning, ulcers and in the most severe cases to infections that may be life threatening.* For my wife we have used a uridine-based cream which she applies on her feet twice a day, and she has been able to resume Xeloda.
Note*: Hand-Foot Syndrome in Cancer Patients: Concepts, Assessment and Management of Symptoms; 2013.
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CT scan today. Hoping for good results (onc appt in 2 weeks)
Want the fatigue, HFS & forgetfulness to be worthwhile
Glad you had good results Crone.
Hope everyone is going well
kt
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Sammiryan, I'm not on steroids but I find I have less patience with everyone now & 'lookout' at the end of the day when I'm really tired!
I'm glad settling in the UK is going well
kt
(Edited for spelling
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I would love some hand foot syndrome advice. I was wearing the wrong shoes today, and have some blisters on the bottom of my feet. Not huge, but there they are.
What have you guys done to improve this situation? How long does it take the bottom of the foot to heal? I don't really want to take a break, as the Xeloda is really doing a job on the c-buggers.
Jennifer
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Blainejennifer, I reported in the previous page about the effective remedy that I have been using for my wife for 2 months now: twice a day. It's a topical cream that I prepare because it's not available on the market.
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Thank you, dear. I can't lay my hands on your remedy, sadly. I will be trying the henna maneuver.
I remain very interested in how long it has taken to heal, for those of you who had this side effect.
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According to this article*
- International guidelines and articles cite the topical use of DMSO or the application of henna(Lawsonia inermis) as options for managing HFS symptoms, but the few published studies have yielded inconclusive results and a low degree of evidence.
Note*:
Hand-Foot Syndrome in Cancer Patients: Concepts, Assessment and Management of Symptoms.; 2013.
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Had a phone call from my onc yesterday with the results from my first CT since starting Xeloda- everything is shrinking!! (In lungs & bones- apart from L1/2 but that may be healing bone?)
So well worth the fatigue & mild HFS. Had a few blisters on my feet Blainejennifer, but they disappeared pretty quick (& some splits on my thumbs). I've just been using Udderly Smooth & Moo Goo multiple times a day.
Hope yours resolves soon
kt
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Hi Jennifer! I am now on my 5th cycle of Xeloda (Femara sadly stopped working). Onc told me to hold off for a week if HFS gets really bad. Vitamin B6 is also suppose to help but I refuse to take it based on the many things I have read against the Vitamin Bs while taking Xeloda.
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Jennifer,
My oncologist referred me to a dermatologist at my same cancer center after my HFS was so bad after the first round I could hardly walk. She gave me a prescription for urea cream and a steroid cream that I mix together and use twice a day. While I didn't have any blisters, it has made a world of difference. Hope they find something for you!!
Lisa
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teen22 what are the negatives of b6 with xeloda? I am taking b12.
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Hello everyone, just to let you know a few things about Xeloda that I have checked with the pharmacy that supplies my tablets. The pharmacist kindly rang the company that makes Xeloda and came back to me with these answers to my queries:
Firstly, I noticed in the accompanying leaflet that it is advisable to to drink fruit juice to wash the tablets down. Answer: The company said best to avoid drinking orange or grapefruit juice with the tablets as the extra acidity can interfere with absorption and thus efficacy of the medication.
Secondly, I eat a lot of fruit and asked if it was ok to eat fruit (i.e. breakfast of apple or blueberries and yoghurt with granola) as opposed to a glass of juice, and then to take the tablets with water. Answer: Most fruit is OK to eat with a xeloda meal but best avoid orange grapefruit or very citric based meal if taking Xeloda after eating a meal.
Thirdly, It says on my tablet boxes to take within thirty minutes of a meal. Answer: Take after eating, do not wait thirty minutes. The thirty minutes is the time it takes for the stomach to empty after eating. Xeloda is best taken on a full stomach for maximum absorption of the drug into the body. Carbohydrates help absorption. So don't wait for thirty minutes and then take it. Take it once you have eaten breakfast or dinner while food is in your stomach.
I hope that this information is helpful.
Best wishes, Boo.
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Lurkingnomore,
The researcher with whom I corresponded, who has been working for several years on an HFS-effective remedy, says that B6 and corticosteroids do not work. I would ask the dermatologist what experience he/she has had with other cases of Xeloda-induced HFS: I'm suggesting that, because they believe they are dealing with a regular HFS, and do not understand the difference. That's what happened to my wife. After spending a couple of hundred dollars on expensive creams similar to what was prescribed to you, we were back to square one.
That was until I found the studies on the uridine-based cream we are using now.
The steroid cream prescribed by your dermatologist may temporarily decrease the inflammation, but it is counterproductive and not alleviating the root cause of HFS.
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Oh my gosh - I'm sooooooo behind on this thread! Pages behind. Wanted to pipe in about Xgeva and Xeloda together. I had about 4 Xgeva monthly shots in the beginning (almost 2 yrs. ago now). I had horrific pain with the Xgeva - also felt "out of it" for a couple of days each time. Most notably - I had terrible, terrible pain in my face/jaw. It happened from the 2nd through 4th shots, and got worse every time. My face was so sensitive, when I walked - took a step, I felt that I could feel the reverberation of that step in my jaw. I told the onc about this - and he said - ok - no more Xgeva for you! It worried me to go off of it - but honestly, there was no way I could tolerate the pain. It was a 15 on a 10 scale. My bone mets have remained stable on their own, with just Xeloda and my AI. I will say my AI (first Arimidex, now Femara) both cause terrible, terrible joint and muscular pain and joint stiffness like crazy. I can sit still in a chair for 20 minutes, and have difficulty standing up because my knees and hips are so so so so so so stiff and painful. If I hold my iPad in my hands for a few minutes, my fingers and hands ACHE when I let go of it. It feels like I've been white knuckling it for like 2 hrs. straight or something. BUT - it helps keep the cancer at bay, so I will keep swallowing the pills. I take Vicodin occasionally when I just can't take the pain. My latest tumor marker is 14. Oct 31 will be 2 years for me on Xeloda, and I am so grateful.
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Delirium Pie,
My MO confirmed that taking folic acid and B complex medicines will increase the SIde Effects of Xeloda. I mentioned this to her after I watched a youtube clip titled: Understanding your therapy (Xeloda) at 14: 14. There has been several discussions posted regarding the B vitamins and Xeloda in this forum. If you type in B12 or B6 with Xeloda in "search"...you'll come across several of them.
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I'm new to this thread, but very encouraged by the results most have had with Xeloda. I am only on my third day on Xeloda and no se's yet other than a little nausea when I ate fruit with breakfast. I'll avoid that for now. No HFS yet, but am using Working Hands proactively twice a day. Thanks for posting all the information regarding dealing with se's and may we all have good results with Xeloda!
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Yay, Chichimaine. You have a great attitude
I hope it goes well for you for a long time (& all the rest of us)
I'm finding the fatigue most frustrating & not being able to do quite as much with my hands due to risk of HFS, but its quite doable really
kt
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Giavonni,
Thanks for the info. So far the urea cream and steroid cream is working very well for me. Just completed the 2nd round and no HFS problems. And, yes, my dermatologist knows that my HFS is from the chemo. I'm at Stanford and she is the go to person for cancer related side effects. On my first visit she had another doctor with her from Isreal who is considered one of the top dermatologist for cancer side effects. She approved of my regime.
I'm happy that you found something that worked well.for your wife. She is lucky to have such a strong advocate!
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Thanks, kt1966! I continue to launch my Xeloda torpedo's directly at all those little C buggers! Helps me to think of targetting them directly...
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I like that analogy
kt
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So I had an interesting experience with the HFS. I started using foot cream as soon as I started the Xeloda. I had a bit of redness and a feeling of my feet being hot but not burning. Then I didn't use it for a few days and my feet got VERY red and the heat feeling was now burning. I returned to using it and OVERNIGHT the redness went WAY down and they don't feel hot or burning The cream I use is Ahava Dermud Enriched Intensive Foot Cream. I will NOT go for a few days without it again!
Lurkingnomore, do you know if the Israeli doctor is at Stanford permanently or is she there temporarily? In other words, is she staying to take care of you or returning to take care of me? (and if she's returning to Israel, what''s her name and location?)
Leah
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Leah S,
Was the initial redness caused by the Ahava cream? I'm asking because according to the literature, HFS symptoms may start days or months into taking Xeloda; my wife's experience has been a mild itch a couple of weeks into taking Xeloda, and severe HFS effects interfering with her daily life two months into it.
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thanks for the info teen. I'm going to stop taking the b12 as an experiment I guess. I had to stop my first cycle of xeloda yesterday, 5 days early. I was so weak that I could barely walk or stand. My counts kept going down despite daily neupogen shots. Tops of my hands are so burnt. I am hoping that the next cycle won't be as bad. I have such high toxicity levels right now due to not having a break between wb rads and starting ixempra and xeloda. That's my hope anyway because I'll never be able to stay on xeloda if it's that bad every time.
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Sorry you're having such a hard time on xeloda DP. I hope a break sees you bounce back & that the next round is better.
I'm tired & flat but doing ok really. If it's working I'll stick with it.
Hope everyone else is doing ok
kt
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Gciriani, the redness/heat/burning WAS the HFS. As I said in my post, it got much worse the few days I didn't use the cream, then got better with its use.
Leah
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