Xeloda: A Great Drug

Author: Gloria Dunetz
January 30, 2010

January 30, 2010 — I’ve been traveling the road of Living with Cancer for almost 6 years and for 3 1/2 of those years Xeloda kept me stable.  It is a wonderful drug that is taken by mouth not IV so the chemo lab is not in the picture.  This gives you more time to enjoy your life without Cancer taking up all your time.  Unfortunately, it’s not all good, as is the case with all chemotherapy.  The side effects of the drug can be a nuisance or in some cases debilitating.  Every person reacts differently to any chemo drug used, consequently side effects differ with all patients but the following is what I have experienced.

1.  Hand and foot syndrome is almost always present while taking Xeloda.  That is when your hands and feet get beet red and dry.  There are different degrees for different people.  I found that the only way to get some relief is to use a lot of moisturizing substances.  I can suggest the use of A & D ointment or Eucerin Aquaphor before you go to bed.  If it gets really bad where you feel your hands or feet are painful you need to call your doctor and he or she will either give you a vacation from the drug or lower the dose.  Lowering the dose can be the timing of taking the drug.or the dosage  i.e. 3 pills in the morning and night might be reduced to 2 twice daily  Sometimes the doctor will suggest a longer period of time between cycles to give your body time to heal.  I had some relief from this side effect by soaking my feet in cold water.

2.  Mouth Sores had been a problem for me but I’ve discovered through my dentist that dry mouth and acidic foods are what exacerbates the production of these sores.  You must make sure that after you eat you use a pick to clean the food from your teeth.  The presence of the remains of food evidentally irritates the dry lining of your mouth.  He also suggested that I use a product called Biotene, both toothpaste and mouthwash to keep my mouth clean and free from debris.  Some people don’t experience the mouth sores so it’s not a given that you will get them.  In addition my Dentist said that I had to be very vigilant with my dental care while taking any form of chemo because the toxicity of these drugs can cause many dental problems.

3.  Dry eyes can be a side effect with all chemo so you must use drops to moisturize your eyes.  See your eye doctor every year.

4.  Sometimes stomach problems occur.  The problems could be bloating, diarrea or constipation, depending upon the person.  It is important to keep Gas X products and Immodium or Pepto Bismal handy.  Either one of these side effects could conceivably be bad enough that you need to call your doctor.  He may have to lower the dose.   When I was taking 3 pills in the AM and 3 pills in the PM, my stomach was terrible.  Consequently he changed the dose to 2 & 2 and I didn’t have that problem anymore

5.  Body aches are a problem for some people. I am a very well exercised older woman so I never knew when it was the Xeloda or just being old.  Advil does wonders.  Keep yourself as comfortable as possible.

6.  Nose bleeds can be a problem because of dryness.  I’ve used a nettie pot to irrigate my nose cavity and have been successful in making myself breath better.

In a nutshell, Xeloda is a great drug and you should want to take it for as long as it works.  You do not get the fatigue that is generated by IV chemo thus your quality of life is much better.  Having said that, it does stop working like all the other drugs you take for Metastatic Breast Cancer and that’s where I am now, looking for a drug that will arrest the growth.  I am awaiting a tumor biopsy profile to determine what drugs will work.

Please feel free to email me at any time if you have any questions.  I’m a well traveled Cancer patient.

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Comment


  • Joan Chatfield-Taylor

    My daughter made a surprising suggestion that helped me a lot with hand-foot syndrome. She recommended Lansinoh HPA lanolin, which is a nipple cream used by nursing mothers. It is the most powerful cream I’ve used, particularly if you put it on before bed and wear cotton socks or gloves (available at medical supply stores) over it.

  • kate wood

    My sister is taking xedloda for pancreatis cancer. She can not each more than a tablespoon at a time and she is throwing up. Is there anything you can suggest to help keep fluids and food down? Thank you, Kate

  • Julie Matthews

    Hi Kate,

    I would contact your sister’s doctor to let him/her know that your sister is unable to eat and drink. I am not a medical expert, therefore I can’t offer any advice except to reach out to her medical team. They may need to reevaluate your sister’s dosage or add/change an anti-nausea medication. They will also be able to give you good suggestions for foods or supplements that will make it easier for her to eat and drink.

    Julie

  • Susan Hey

    I’m on m y third treatment of Xeloda, have experienced all of the side effects to varying degrees, and each time my dosage has been reduced. Currently on 3 and 3, and waiting to see if things improve from last time. My question is I have quite severe red,itchy, peeling (though not as bad this time) skin on hands, arms, shoulders and legs, all vthe areas that have been exposed to the sun over many years – I have tried various creams,ointments, oils to stop itchiness and improve redness. Any ideas?
    regards
    Sue

  • Angela Ver Ploeg

    Kate,
    Take nothing with citric acid or any other kind of acid — no spices, but you probably have been told this, already. Drink lots of water. Eat nothing while it is hot. Don’t overeat. Don’t wait until you are hungry to eat. Go by the clock, but by your appetite. Don’t take iron or Vitamin C pills. Scrambled eggs work well — and custard– but keep sugar low. No orange juice, lemonaid, or tomato juice.
    –Angie

  • kisi

    Hi

    My bro is on the drug so his forever askin me for ice cream or he wants cheese on his bread, can I feed him all this???? And for the hand-foot syndrome thy gave him some cream with the xeloda drug calld milk cream, how is it used? Plz help me

  • Diane Jones

    I am new to Xeloda, its being delivered today. What I don’t understand is why I am taking this and still having chemo treatments at the center scheduled?
    I have pancreatic cancer stage 3
    Age 64 yrs

  • Julie

    Hi, I’m Julie I just started xeloda again but few years I have tried the xeloda but dr have to stop it due to swollen of my finger so now we start it back again coz my cancer still growing. I just want see any improve or stop the growth of the cancer. My question is I have neuropathy will this affect the feet syndrome or my neuropathy will get worst? And I’m planning to travel to Hawaii this first week of dec should I go? Please advise

  • Zelda

    I have this pain in my arm and shoulder and sometimes in my chest. Will advil work for me. Strangely I get all this at night and not during the day.

  • Ceede O

    hi Gloria, it’s so good to read your post. i have been taking xeloda since august and my last treatment ends the end of january [can’t wait]. i found u looking for inform on interaction of xeloda w/Goldenseal. basically xeloda’s only conventional medicine i take. i keep getting sinusitis and cold like symptoms. it’s so annoying. i work out a lot and since it’s getting to be winter in cincinnati…, well. i had surgery to remove a small rectal cancer in May and have done great befoe and after. however, now i’m experiencing this unusual knee pain, swelling of left leg. oncologtist doesn’t seem too concerned, but i am as it seems to interfer w/my tai chi and walking. i read your post…6 years, ur a couragous womun. thanks for sharing your positive experiences w/xeloda.

  • Ceede O

    my xeloda dosage is 2 & 1 because it lowers my white blood count. i haven’t had too many of the side effects other than this and the dry skin. there’s a natural skin softner called “Shitiake [sp? will get correct namel]. it’s used to treat ezcema and cradle cap for babies. really good. also natural shea butter has helped. the worst i have w/the hand foot is the dark spots or discoloration and [whew] too much flatulence, arthritis and sciatica. i am also a non meat eater so this could have an impact. anyway i’m just glad i’m taking the xeloda and not the IV.

  • Pat

    Good to read comments—will just be starting xeloda this month for pancreatic cancer–helps to increase knowledge.

  • Wanda Johnston-Webber

    Hi Angie,
    My husband was diagnosed with 4th stage cancer two weeks ago. It started in his colon, is in his lymph glands, liver and lungs. I am so sceptical (and afraid) for him to take xeloda but the oncologist has made it quite clear that is will not cure him but slow down the rate of the spread. Is it worth his while to take this medication as I do not want to put him through unecessary pain and side effects. He will just be postponing the inevitable.
    Kind regards,
    Wanda

  • Jo

    I am on Xeloda and the hand and foot syndrome looks worse than it feels. I have found Waxelene, at Bed, Bath and Beyond and since it has no drying ingredients, alcohol, etc. I am giving it a try. The ingredients are organic soy oil, bees wax. natural vitamin E oil and organic rosemary oil.

  • Eilene

    I have stage 4 colon cancer and have been on Folfiri infusion for 2 years and have stabilized enough to try Zeloda now. Did you have any prob s with muscle weakness or excessive tiredness? I am a very active 55 year old woman and my kayaking/biking/horse training etc is imperative to keep me sane. I did find that on the infusion (which is horrible) atleast I felt good enough within 2 weeks to do these things. I guess I’m wondering if it is worth it to take Zeloda or go back to the horrible infusion from which I did get a break for 2 weeks from?

  • Angela Ver Ploeg

    Wanda,
    The “inevitable?” From the day we are born, death is inevitable! How old is he? I was diagnosed with stage 4. 5 years ago, I am 78 years old, and I WANT TO LIVE. I’ve been on Xelolda 18 months and the side-effects are very tolerable for me. I love the convenience of the pills. I am still working part-time as a school psychologist in rural Alaska. (I fly to work). We are ALL postponing the inevitable, from the day of our birth. Obviously I vote in favor of his trying Xeloda. What does he want to do?
    Angie

  • mb

    Hand and foot syndrome – the following will work immediately.

    my first batch of this cream was. follows:

    grind 75 grams of dried calendula and soak in 500 ml of 99.9 alcohol for 30 to 40 days

    then strane with a coffee filter. then, evaporate it at very low heat until you reach 75 ml of volume of tincture. warning, this is very flamable. have a towel handy to cover it if it catches fire. do not blow on it, it will make the fire higher. do not allow it to boil.

    Tis calendule will fix the problem. now, in order to make it spreadable, you’ll need to mix it with beeswax.

    I melted beeswax, coconut oil, grapeseep oil , sunflower oil and melted it at 50 to 75 degrees F until it became liquid.

    then mix in some of the calendla tincture. the goal is to get as much tincture as possible and have a spreadable cream, so dont dilute it too much with the beeswax.

    the aalcohol will cause the beeswax to soften and make a nice cream.. this works immediately on the redness and swelling oh the hands and feet caused by the xeloda. it also works right away on other skin parins or rashes, such as burns, or painful rashes. the antiinflamatory and pain relieving properties of the calendula are very effective and act fast.

    Cheers,
    MB

  • The Bobs

    After two days on Xeloda I was so sick I wanted to die. The vomiting and pain and nausea were almost unbearable. It didn’t work for me. The worst experience ever.

  • ariel louis

    I have stage 4 breast cancer from stage 2 15 yrs ago first diagnosis – treated with chemo and radiation
    Xeloda is working very well for me – the few side effects are bearable – the pain from the spread of this cancer to my liver and back has been alleviated using Xeloda for six months. My fear is that I will grow resistant to this drug – it is wonderful to be free of pain, have cancer marker #s go way down and finally less fatigue. I;m 78 years old and will need to be on chemo , one kind or another, for the rest of my life. I don’t want to grow resistant to xeloda. /Even my hair grew back after using two other chemos before xeloda. good luck all…

  • ariel louis

    I have stage 4 breast cancer from stage 2 15 yrs ago first diagnosis – treated with chemo and radiation
    Xeloda is working very well for me – the few side effects are bearable – the pain from the spread of this cancer to my liver and back has been alleviated using Xeloda for six months. My fear is that I will grow resistant to this drug – it is wonderful to be free of pain, have cancer marker #s go way down and finally less fatigue. I;m 78 years old and will need to be on chemo , one kind or another, for the rest of my life. Even my hair grew back after using two other chemos before xeloda. good luck all…

  • Marie

    My name is Marie I am 54 years old I have been taking xeloda sence march 2011 so for so good I have stage 4 colon cancer it went to the liver to the lymph nodes and now I am in remission my doctor gave 33 months now he said that I am doing very good and now he is giving me 5 years

  • Barb Currie

    In Australia – try MooGoo – Udder Cream – for hand & foot they told me this at the unit

  • Dan L

    Have stomach cancer have been on Xeloda since Sept 2012 along with infusion, only problem I had was initital dose too strong 3 moning 3 evening. Reduced dosage to 2/2 and have no problems. Developed a skin rash but it is managable. My cancer is stable

  • Linda Anderson

    Thanks very much for all the information you gave about this drug. It was very helpful knowing in advance what I will be facing. I will be going on it after seeing my oncologist this week because the estrogen blocker I have been receiving for only 4 months has already stopped working. My first case of breast cancer was in 1999 and I was cancer free for over 11 years. The doctor said it was very unusual for a patient to get a second case of breast cancer after being free from it for so many years (11). Oh, lucky me. Once again thanks for your experiences and good luck with your new treatment.

  • Dina

    Helo. My father has got cancer of intestine.We live in Armenia and it very hard for us to buy the drug. I’ll be very thankfull if someone would give us Xeloda. Probably someone has more of the drug or doesn’t need any more, or something else, please help. Thanks. My email is armenians@yahoo.com Thanks!!!Thanks!!!! Thanks!!!!

  • Ms. M

    I was treated with rad/Taxil for Stage 3 nonHER, non small cell breast camcer 8 years ago. It suddenly came back recently and and I had 6 more infusions. I am in the small percentage who have a reoccurance of this cancer after such a long remission stretch. It is treatable, but not curable AT THIS TIME.

    For the past few years hip, thigh, ligament pain makes walking often painful.

    Now I am on oral Xeloda and tumor size has reduced
    significantly. Side effects of hand-foot syndrome are very
    uncomfortable and I am not able to do much. After 8 weeks we
    plan to lower the dose.

    Does anyone else wonder where all the research money raised by all the “non profits” is going? I’ve seen little improvement in treatment modalities in 9 years.

    Please join me in praying for an innoculation, like that for polio, to be found against this disease.

  • Dennine

    38 yr old and been taking Xeloda for 5 months now. Original breast cancer (2006) has spread and counts were high. Xeloda has been bringing the counts down more and more every month. I take 2000 AM and 2000 PM. Some tingling in my hands and feet and a bit tired from time to time but other then that it’s been great.

  • Wendy Chung

    Wow! The comments on this post are quite encouraging. I started taking Xeloda two days ago (1000 twice daily) and I am anticipating the side effects, but so far…none. I was diagnosed in 2007 with Stage 2A early stage breast cancer, and now it is back in my liver! I am somewhat depressed today but have found some comfort in these posts. I am concerned about the prognosis for Metastatic Breast Cancer. Does the end begin when your the tumors resist your current therapy until there is nothing else that can be used?

  • http://Xeloda;agreatdrug antoinette cutajar

    Hi I `m a 31 year old diagnosed with metastatic breast cancer. I ve been treated with chemo since july till present and there were no improvements. So my Dr suggested me Xeloda which is a new drug in my county. I ve started Xeloda for the very first time this morning and I m very concerned about the side effects. It seems that the most common is the hand and foot syndrome .
    Do this impede you to carry out daily stuff ? is it too painful?
    Does Xeloda let you live a normal life?
    is it as good as they say, cos after two chemos I m loosing faith.

  • Lyn B.

    Hi, I’m 67 years old and have been diagnosed with metastatic breast cancer. I had breast cancer in 2006 (lumpectomy and radiation) and in 2011 it metastisized to the bones (sacram, spine, femor, groin)–more radiation to the sacral tumor. My fingernails have gotten so soft they easily get nicks and are splitting well below where the nail meets the skin. I have to be very careful not to brush against anything with my hands, i.e.when getting something out of my pocketbook, I have to do it very gently. The skin under my fingernails has been turning white starting at the cuticle area and now extending halfway up the nail. Has anyone lost their fingernails while on Xeloda?

    The good thing is my tumor markers have been reduced while on it. I had to be off Xeloda for a month since I developed eye problems and had to have a chalazia (blocked gland) in my lower left eye lid removed surgically. My tumor markers shot up during that time and once I was back on, they went down again :) Now I have eye irritation in both upper eyelids and several more chalazia forming in my right eye lid. My ophthalmologist will consult with my oncologist about putting me on a very low dose of doxycycline which will act as an anti-inflammatory.

    I see my oncologist next week and hope he has a solution since I have to be on the anti-cancer meds permanantly. I make green juices every day and that helps energy-wise. The alternative Dr. at Memorial Sloan Kettering recommended that I take scutellaria barbata an herbal product that has proven to be effective against breast cancer. I haven’t been able to start it since my meds have changed frequently and if I started 2 at the same time and there were side effects, I wouldn’t know which one was causing them.

    I’m still working and thank God that I can do so!!! Best of luck to all of us. Thank you for all of your helpful comments.

  • Nathalie

    After taking Xeloda for two weeks I developed blisters between my toes, which are now starting to bother me a bit. The oncologist also seems concerned about this, and has now reduced my weekly dose.
    Besides this, I feel more fatigue than usual, but that is manageable. Hope my toe blister will not stop me from going to the gym and doing my usual daily work.
    If anyone has similar side effects and knows how to fight them, please let me know.

  • Jody

    I just wanted to give everyone some positive results about Xeloda. My mother has stage 4 metastatic breast cancer that has spread to her bones and liver. She started Xeloda 3 months ago (after going through traditional chemotherapy and radiation). She had her first scan since starting the Xeloda and her liver tumors have decreased by more than half in size and her tumor markers have also decreased by half. She has had some mouth sores but has NOT experienced the hand and mouth syndrome. She uses the udderly smooth udder cream every day and I believe this helps. Actually, if you go to the Xeloda website, you can order a FREE starter kit that includes the udderly smooth udder cream, some drug info, and a pill box to help remember to take your pills. Here is the website to order it (my mom’s took about 2 weeks to come): https://www.xeloda.com/registration.aspx
    My mom has had a few days with an upset stomach over the past 3 months and a little nausea (get a nausea pill from your doc to take with the Xeloda as this helps). It is nothing like the pain she had from the traditional chemotherapy and her hair is growing back. She has been able to do some of the things that she hasn’t been able to do in a long time. This pill affects everyone differently, but our experience has been pretty good. I, too, am praying for a cure, but until we have one, the Xeloda is what is keeping us positive. Thank you for writing this blog Gloria!

  • Cely Anne

    I started Xeloda 2 days ago. 1500 mg twice a day. When do the side effects generally start? I will be 14 days on and 7 days off for 6 months. Thank you.

  • Tom M

    Hello
    My name is Tom. My wife Donna was diagnosed with breast cancer in March 2012. She went through the chemo and radiation, mastectomies and breast expanders. Was doing her fills when she began having severe headaches. She was diagnosed with metastatic brain disease approx. 3 months ago.
    Since then she had received 15 shots of radiation to the head along with numerous medications. She has 3 tumors on her brain with the largest at the right frontal lobe. The tumors have shrunk due to the radiation and she was 4 days away from getting Cyberknife to remove the tumors. Yesterday her doctors found lesions on her spine. Now her doctor wants to put her on Xeloda. I am reading these stories and for the most part it sounds like it works.
    Please get back to me to let me know how effective this drug is. I would greatly appreciate any information.

  • jo

    Iv been on/off xeloda for a year,works for me,but skin irritations,fatigue & feet swollen ,hard to walk,until I take my 2-3 month chemo breaks
    then cycle repeats

    as a vegetarian,im baffled by some strange comments,ie (not to drink OJ or vit C)

  • Agustin Henriquez

    Great reading and huge findings in these posts.
    I was diagnosed 1 1/2 yrs ago with gall bladder stage IV tumor w liver methastasis. I was told quimo will not cure my dicise, but I started Xeloda 13 cicles ago and my methastatic tumor had reduced at a rate of 20% each 4 cicles.
    I am a 44 male. I have 8 yr old triplets and I decided to stay alive.
    Xeloda is a great drug but have very terrible side effects. Hand and foot syndrome was my first and only side effect at the begining, but now Im am experiencing a more terrible one: accute abdominal pain due to constipation and therefore hemorroids during first week of each cycle. Hand an foot symdrome had been controlled by using Aquapore ointment and lowering dosage at some cicle stages. Does anyone can help with the costipation isuue?
    Thanks,

  • Philippa

    .Thank you all for sharing. You are brave positive and courageous people who are each making this journey with faith and courage. I am stage four colorectal cancer with Mestasteses to my lungs. I have been having Oxalaplatin infusions plus 2 and 3 xeloda pills daily for two weeks, which produce nausea, lethargy, sore joints,diahhrea, and now dizziness. Then I have a week off from meds, but side effects continue. I am76 and formerly extremely active and fit, and trying to make adjustments to my daily life. My Oncologist is considering infusing Avastin next time, but I’m nervous Thank you all so much for your strong attitudes and your upbeat approach.

  • AnnaKate

    I am about to start taking Xeloda. One thing which may help with skin and hand and foot problems is Oil of Emu. I used it for radiation skin problems and have recommended it to others who have had positive results. It is very greasy — so keeps skin well moisturized — and is better applied before bed. I used it several times a day and dabbed excess grease off in daytime.
    I ordered it on line at Purple Oil of Emu

  • B. Freund

    I am about to start on Xeloda which I ordered from Canada Drug Pharmacy for a 10th of the cost,, since I do not have drug coverage. My stage IV breast cancer has spread to the bone and Femara is not working anymore.
    The side effects of Xeloda do not sound so bad and I hope I can still exercise as I presently do.

  • http://www.georgewilkinson.net George W

    Hi, I just started X for metistatic squamous cell carcinoma and i suffer with psoraisis. Is there anyone out there with similar diagnoses?

  • Carol Teeters

    I’m so happy to have found this website. I will be starting on Xeloda this week. I have been fighting metastatic breast cancer for almost 4 years. I have metastases in my lung with pleural effusion and a couple of cancerous nodules in my liver. My lab work comes back normal but my markers have shot up so high. CT scans aren’t showing much change. I have been on exemestane and affinitor and now have to switch to Xeloda. I was pretty depressed today after getting this news but hearing how well some of you are doing gives me some hope. Hang in there cancer warriors!

  • Liz

    I’ve been on Xeloda now for 1 1/2 months. 1 week on 1 week off, 4,000 mg a day.

    I noticed 1/2 way thru my 3rd dose, discoloration of the tops of my hand, especially near the knuckles. Also some skin darling on my face. has anyone else experienced these symptoms??

  • HR

    does anyone have any suggestions for what t do when Xeloa causes PAIN in the feet every time I put weight on my feet. It is painful to walk.

  • HR

    has anyone used this for cholangiocarcinoma?

  • Doreen Maria

    I have been fighting this geezer since 2007 first time lumpectomy Then another lump in the other breast. Then double mastectomy then it went into my lungs ,my back and some lesions in my peritoneal cavity. After radiation,different types of chemo over the years I ended up presently with xeloda . I have had every side effect from this drug some of it quite severe however, my doctor reduced the dose to 2600 mg daily 7 days on then 7 days off it seems to be doing the job as the cancers are gone from my lungs my back and tummy area. my side effects now are: insomnia for the first couple of days nails are brittle , some peeling of the skin on hands and feet , neuropathy in my hands and feet reducing the dose took care of the pain experienced in my extremities. i have also combined alternative medicine with the conventional and iI truly believe that i am alive today because of it. Eating the foods with a lot of anti oxidants works. Juicing and above all else accupuncture but make sure you get someone who is well qualified, not a therapist with a weekend course. I hope this was some assistance to the lady who has the pain in her feet. Also use undderly smooth cream frequently it works great,!,
    Good luck everyone and may you receive strength from God Angels and the great universe.

  • Jody

    My husband was diagnosed in 2010 with colorectal cancer. He did Xeloda and radiation before having a colostomy, very good results, however the cancer came back in 2011 in his liver. He had a liver resection and xeloda again and was good until the fall of 2012, which the cancer came back in his lungs and liver. he has been doing treatments at the cancer treatment center by Chicago of Irinotecan, Avastin and 4000 mg of Xeloda 7 days on 7 days off. The side effects from the Xeloda have always been very minimal, he thinks it is a wonderful drug and hopefully we will get his tumors shrunk enough to just do the Xeloda as a maintenance drug. Xeloda seems to be able to let him enjoy a normal quality of life.

  • roderick

    my mom’s tumor marker went up after first wee of xeloda .. is this normal from 357 to 1357 ca 153. Is this normal? please of anyone who knows ..pls reply .. email me roderick_e_lorenzo@yahoo.com

  • lois

    I have been on xeloda and have the sore feet but bought a lubricated sock from bath and body and it is really working well to keep my feet moist

  • Connie

    I am going to start xeloda next week and am thankful to hear your stories. How about hair loss, what should I expect

  • http://None Lois Knudson

    I have been fighting cancer for 37 years. Started in the left breast which was removed as soon as diagnosed. Through the years since I have been on numerous drugs, had radiation quite a few times, and most recently due to severe stomach pains had two biopsies and the breast cancer has spread to my stomach. I’ve been on Xoleda since then and the latest C-Scan shows some improvement. I have received wonderful medical care – and daily give thanks for that. I have had no reactions from Xoleda that I can report – so if it’s new to you – “nothing ventured – nothing gained.”.Best of luck to all you “newbies”!

  • Claudia

    This is very helpful and God bless everyone here! Your stories are so inspiring. I am currently on Xeloda, one week on and one off and I am finding that it is pretty easy to tolerate. The hand/foot thing is a bit of a nuisance and I use African shea butter that I bought on Amazon to rub into my hands and feet several times a day. I have been on it since April and this round I felt tired and a bit nauseous but it’s been a good drug for me with stage 4 breast cancer with brain mets. This is the 7th drug I’ve been on in 3 years and for the most part I am doing well.
    For constipation: eat a lot of fruit and salad.
    I am so inspired that Xeloda as worked for so many!

  • Dad Itoh

    Very informative site. I’ve been diagnosed with cancer colon stage 4 last January 2013. Endured 12 chemo sessions of Avastin & Folfox that lasted for more than seven months. Underwent three CT Scans within this period that yielded very positive results. Got my PET/CT scan two weeks ago and I’am declared now in REMISSION. So glad, however my oncologist is recommeding a maintence treatment of Avastin and 3000mg of Xereloda at every two weeks interval. I am about to start this regimen and I’m nervous of the side erffects.I am suffering from feet/hand numbness & irritaing tingling sensation and I am afraid taking Xerloda will worsen this sie effect. I am also suffering from dfiabates type 2, does anybody experience side effect on blood sugar level from taking Xeloda? Thanks

  • MammaVic

    I’ve been on Xeloda for a week now, 2300 mg 2x daily, I’ve had alot of nausea already and the Dr doesn’t seem to want to lower my dose, but got a second opinion and that Dr said he WOULD use a lower dose for my height and weight … does anyone know how to calculate what you SHOULD start out taking? Also, my Dr has NEVER talked about tumor markers :( what is this and what questions should I be asking him … I was originally diagnosed with TNBC Stage 2b in 2010 and now have stage IV gone to my nodes and lungs. I really need some advise, the Docs are really confusing me … THANKS Vicki

  • WJ

    Invasive breast cancer in 1991. operation followed by low doses of chemo. no problem for the next 17 years then after having a chest x-ray it was determined that I had an recurrence[lungs]
    Started receivng hormone injections.to make a long story short I have alow tolerance to most meds. Lungs cleared however a PET SCAN showed mastication in my bones.
    I began xeloda 3pills twice a day[every other week] I do have
    foot/hand syndrome mild with discoloration[no discomfort]
    apply AVEENO moisture cream daily.Also have toenail lifting from nailbed-need to have big toenails cut back often.
    This med have worked well for me,MY CA markers have remained at a stable level.
    SORRY BUT MY DR. STATES THAT RECURRENCE MAY
    OCCUR AT ANY TIME
    WITH ALL THE WISDOM AND WEALTH WE HAVE IN USA
    IT IS TIME TO HAVE A BREAKTHROUGH !!!!
    FORGET BIG BUSINESS!!!!!!!!!!!

  • Faysal Abukhadra

    I am 79 now and started chemo and radio since one year, made 4 pet-scan 4 times and the the last one showed excellent result
    Of complet metabolic recovery, this lat pet I had after my Dr.
    recommended 2000mg daily for three months. Uptill now
    thank God I dint have side effect, my cancer is in the neck and
    Spread in left shoulder , aurotric and above stomack,
    If any one had nearly same case pls. Give me an advise thanks,
    I am a Lebanese national

  • vanessa

    Hi im 52 with stage 4 breast cancer that has spread to the liver!

    I will start Xeloda i think around Oct 21st,when i also start my new chemotherapy.! Ive already had 6 cycles of taxol, i thought i was done, chemo every three weeks,gradually but daily taking Xeloda my doc wants me to eventually take 4 500mg in morning. 4 500Mg at night, is this too much? I had no side affects with taxol other than hair loss i quess my luck runs out here!
    Cancer sucks! Tear!

  • http://sideoutfoundation Mary Johnson

    I am a 60 year old female who was diagnoses with Stage 3B colon cancer in June of 2013. I had surgery to remove the 5cm tumor on July 11th, resulting in an ileostomy (temporary stoma) because of issues reconnecting non diseased colon to non diseased. I am planning for a reversal of this in March of 2014. I started Xeloda on August 19th. I am presently halfway through my fourth cycle (2000 mg. morning and night). My first 2 weeks on 1 off was rough. Felt nausea, a bit of the hand foot syndrome, tiredness, itchy skin and dizziness.

    Mostly I sat around (don’t have to work) and waited for the next side effect, put nothing n my calendar and mourned the loss of the life I knew. Somewhere towards the end of my first off week, I had an ephiphany. I needed to change my attitude. I was not ready to give cancer the next 6 months of my life (at the least) and went back to living my life. The next 2+ cycles have been great! I planned a trip to Disney World with my grandkids, got marijuana in pill form for the nausea and loss of appetite, got Noxema Swedish formula cream for my hands and feet, forced myself to get out everyday, even if just a piddly errand. What a difference! I did not want my dose lowered for any reason, and it hasn’t been. I still have some dizziness and itchiness, but jeez I can live with those.

    My advice is don’t sit around and wait for the next side effect/shoe to fall. You can make a difference, just by changing your attitude. I also have an oncologist that I love and is my partner in this cancer episode and very supportive.
    Good luck all.

  • Josephine

    I started my Breast Cancer journey with stage 0 DCIS in 2004. I chose prophylactic double mastectomy; unfortunately a micro invasion was missed and in 2010 the Cancer returned to my clavicle area wrapped around Brachial Plexus nerve bundle; the severe pain in my arm luckily let me know the Cancer had returned. I went through 8 rounds of dense dosing Chemo & 32 rounds of radiation. Just returned this June, 2013 on a Paratreachial lymph node. However, after just two cycle’s on Xeloda my PET& CT scans indicated the tumor essentially vaporized. I do a lot of research on my triple negative breast Cancer, and found an article on Read Cube that a breast cancer cell line study was done and it determined that taking Xeloda in combination with the Indian spice Curcumin reduces the toxicity of Xeloda & doubles it’s efficacy as well as assists in reducing the incidence of its losing its effectiveness. My oncologist doesn’t believe in alternative therapies, even though MD Anderson and other respected Medical centers have been testing Curcumin in varying doses on a variety of Cancers and has reported success. My doctor was very surprised about my result and just says how well my Cancer seems to respond to Chemo. Purchased at the Vitamin Shoppe, I take 900 mg 3-4 times a day and my side effects with the Xeloda are fairly mild. Mostly hot feet occasionally, thinned hair, and fingernail and dry eye problems. I am now 63. I wanted to pass on this information about Curcumin in combination with Xeloda as I truly believe it is successfully assisting in keeping my Cancer at bay. I hope this information may help you as well. Take Care, stay strong and believe you can concur this scourge.

  • Angela

    I am now on Xeloda for the second time since 2010. It took 5 onths to get me clear of the cancer but now 2013 it is back so far been on Xeloda for 2 weeks had 1 week rest and start again tomorrow. No side effects so far. But it is early days. Last session in 2010 I had bad burned feet got blisters and my finger tips were raw from loss of skin also had bad diaohrea. It really is good to take tablets rather than Chemo.

  • Maggie

    Re: Hand-Foot Syndrome
    Aveeno, is the best for hand-foot syndrome, caused by xeloda tabs. My husband is on xeloda for colon cancer, but my daughter used it throughout her cancer (Hodgkins) treatment, for her skin.
    Has never let us down!

  • Susie

    I have been taking Xeloda for a few months now. I have the same problems with my hands and feet. My doctor prescribed me some cream called Lac-Hydrin 12%.

  • Robin

    Dose anyone know if it’s been used on stage 4 squemas cell carceona of the neck and has moved to the lungs and has had all chemos for the last five years and has doubled in size in 3 months

  • Diane

    I will be starting on Xeloda next week and scared out of my mind. I’m trying to prepare myself as best as I can. Please help. I’m a wreck.

  • Sue Fischer

    My husband was diagnosed with stage 4 colon cancer mets to Liver extensive. Gets 1500 mg of Xeloda twice a day. He is
    75. He is bothered by the foot swelling and tomorrow we will need to contact his oncologist. He was told he had 6 months to live without the Xeloda or one year with the Xeloda. Seems his dosage is rather low compared to many on this site.. Why would that be? Anyone know how they decide on the dosage for patients? He was told he would be given this med for palliative care. Sure hope this works for him.

  • Leidybug

    I am Advanced Stage IV cool rectal cancer, diagnosed on January 22 2013. I have since had 4 major surgeries. 1st. February 4 2013, They removed all my female organs, part of my colon, part of my rector and other rumors that were operable.2nd. August 12 2013, Theybremoved half of my liver, gallbladder, appended and a small section of my small intestine close to my my stomach. 3rd. April 2 2104, Theybremoved part of my right lung. 4th, Februart 9 2015, They removed 1/4 of my liver. Seems the Cancer just does not want to stay away. A lesion shows up ever 6 to 8 months and they have to remove it. My Oncologist, Surgeon and the tumor board decided that it is best to put me on Xeloda as a maintenance. I am on my 2 nod cycle of Xeloda and I have just started to get the side effects. The hand and foot syndrome is worse when you have Neuropathy from previous Chemo treatments. It seems to be more painful and makes it really hard to sleep. My skin is really dry and I am also experiencing cramps in my calves and upper legs. Anyone else having cramps.
    I am so afraid that they put me on the Xeloda because I don’t have to much longer to live, but my Doctors aren’t telling me this. It’s just a gut feeling I have.


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