All about Xeloda

Joy78

Birdlady,  It will be nice to be able to share our Xeloda experiences.  My friend has a small craft business and I think she sells her cream  along with other crafts.   So, not sure if she would share the recipe.   She, on her own, volunteered to send me a small sample.   I also have been on the phone this afternoon checking out some ideas for transportation.  I don't think the Cancer Society charges for rides, as it is mainly volunteers.  But, like so many organizations, they are short of volunteers.   I spoke to a lady who uses a transportation service and they are all volunteers, but they are short of help, also.  She takes her helper to lunch whenever she has to go out. I don't have a problem with paying a reasonable amount..... just finding somebody who does that kind of a service.   My DIL takes me to some of my appointments, especially out of my particular area.  I live about 35  miles west of Baltimore, and one of my doctor's is at a big hospital complex right in Baltimore City.  She has her own business, but there are times when she hast to be there for certain things that only she can take care of. My family is supportive, but sometimes I think that they really don't understand what all my problems are.  Kind of in denial, maybe.   I know that I will have to be having blood work done before I see the oncologist.   One of my son's or another DIL usually takes me early on a Sat. morning.  Our local Senior Center doesn't have anybody that does that.  I live in a Senior Housing complex and a lot of the residents don't like to be responsible for taking people out.  I have to use a walker and need help getting that into the car.  And, I sure don't want to be responsible for somebody hurting themselves.  Although I could probably put the walker in myself with a little bit of help.   I am hopeful that it will all work out ok.  Hope we can keep in touch.

Joy

GoldenGirls

Have any of you had a CT with contrast during your cycle (while taking your pills, not on your "off" days). My mom's been having pain and fears that Xeloda has stopped working for her. She had moved her CT scan up because of the pain and asked if the contrast used during the CT scan would interact with the Xeloda. Her team was not able to confirm that it would be safe so decided to reschedule her CT scan for a couple of weeks so that it falls during her second week off of the current Xeloda cycle just to be safe.

Any idea whether or not it can pose a problem? Has anyone had CT scans with contrast while actively taking Xeloda?

gciriani

GoldenGirls,

My wife has had both bone scan and CT scan with contrast on 2/20/15, which was her week off. I think it is more difficult to manage capecitabine (Xeloda), and also have the contrast, because you are not supposed to have solid food 4 hours before the test. However, it could be managed if the test is done in the afternoon: you eat in the morning, take Xeloda, wait 4 hours before drinking the contrast, and then take the test.

Joy78

Well, my Xelota arrived and the dosage on the bottle is not what I was told it would be.  I have been talking to the nurse navigator at the Cancer Center where I go, and she told me that I am to take 3 pills twice a day.  Morning and evening for 3 weeks.  The Rx is for 84 pills and that doesn't work out.  I have noticed that most of the ones on here seem to be taking the 6 pills for 2 weeks and then 1 week off.  So,  I was told I would be taking the 6 pills for 3 weeks on and 1  week off. So, that comes out to 126 pills.  I have a call into the office now and waiting to hear back from them.  I am just really confused now.   And, another thing that bothers me is the fact,  in the instructions, (3 pages) they recommend wearing plastic gloves when you take the pill.  Now, that is really scary. Putting something into your body and they suggest you wear rubber gloves????   Oh my,  this is really getting to me.  I honestly don't want to give up at this stage, but I am getting so nervous. 

And, I also would like to know something else.  I know it is a touchy subject, but do any of you take the Immodium before you go out,  just to keep the diarrhea in check.  That is scary for me to.  I am so afraid of getting out somewhere and having an accident.  I know I am going to be so afraid to go anywhere.  You are not always in a place where you can get to a rest room quickly.  I guess I am really jumping to a lot of conclusions, but I am really getting nervous about this.  Then I read where so many of you aren't that bothered by a lot of the s/e. And, that cheers me up.    And, since I do feel so well, I hate to think that I will be getting sick.  I mentioned this to the doctor and he said "it is hard to make an asymptomatic person feel better".    Guess I need to get myself busy with something and stop having a pity-party with myself.  I usually am a pretty positive thinking person.  Thanks for listening.

Joy

kt1966

Joy, it sounds like it's meant to be 3 pills twice a day for 14 days which works out to be 84 pills. Then you have 1 week off- which makes it a 3 week cycle, like I do. They obviously didn't explain it very clearly to you, which is not helpful.

Hope it goes well for you. I've been on it for 6 months now & it's not too bad. My tumour markers are going out n the right direction

All the best

kt

(So to be clear -6 pills per day all up! 14x6=84)

kt1966

Ps. I have never had diarrhoea on xeloda- maybe you won't too. Also I never use gloves to take my pills- that is overkill! I think it would have to very wet hands and held for a while to do any damage if anything.

Joy78

KT,  thanks for your encouragement.  That really means so much right now.

I did talk to the nurse and when I questioned the 3 weeks, she said, NO, 14 days, which is the 2 weeks.    Now, I know she had told me 3 weeks, because I was writing everything down while she was talking.  And, a second time,  she had said 21 days, which I also had written down.  I was starting to feel like I was going crazy.  But,  it is straightened out now..  3 pills morning and evening for  14 days and then a week off. 

And, I also had a call from the Social Worker at the Cancer Center, who told me that she can arrange for rides from the American Cancer Society.  Just have to let them know 5 days ahead of time. So, that is another worry off of me for a while, anyway.  She was very nice and very compassionate.  I am not so sure about the nurse navigator.   Not quite sure how I feel about her yet.  She just doesn't seem as caring as much as I would have thought she could be.  But, that could change. Right now, everything is just so overwhelming. 

Our area is expecting more snow overnight and most of tomorrow.  Might be 6-8 inches or more.  I am just so sick and tired of the snow, cold, ice and sleet.  Spring can't come fast enough. At least, turning the clocks forward this week end will help with the days staying lighter longer. 

Need to think about some dinner.  Have a good evening.

Joy

kt1966

Joy, I'm glad things are much clearer now.

Great that you have transport sorted too.

We're looking at going into autumn (fall) down here in nz. I'm not really looking forward to it, it has been nice having longer, warmer days

Take care

kt

KATE1974

Hello ladies! Question. I have completed three cycles and went to dr yesterday and told him I have pain and swelling under clavicle and yes this is one of the many areas I have node activity. He said if not better next week I have to have another pet scan. I just had one 1/22 and I feel we need to give the meds more time to work. Any advice or words would be great. Starting to get scared. (I have mets to sternum, multiple nodes and speck on lower left lung). Thank you everyone!

Joy78

Kate,   don't know how to answer your question, but just want you to know that my thoughts are with you.   I am just starting on the Xeloda on Sunday.  I can understand how you feel.  Hopefully, someone will come in that can give you some better information.

 

Joy

blondedoris

Hey Kate

I also have pain on and around my left clavicle, which is where my lung and lymph mets are, and I've just started my 3rd cycle too. Have a CT scan on the 11th so am hoping it's just something like tumour flare or the lesions reacting to the treatment....good luck with the scan! It's awful waiting for them but I'd rather know than not

x

birdlady222

Well, I got my first prescription late yesterday afternoon.  I called the nurse navigator this morning with a  bunch of questions because the insert with the Rx made me nervous.  My husband works a long day today to make up for all of the time he has missed due the snow and ice that we have had, so I am home alone today.  I have a history of having different reactions to medicines, so I was a bit afraid to take this stuff while nobody is here with me.  I stared at the bottle for 25 minutes, prayed, and then got up the guts and took the 3 pills as instructed.  My husband will be home at lunch to check on me, and I'm sure I will be fine. 

My oldest daughter sent me a sweet care package with cotton socks, several moisturizers, and some other little items that she saw suggested on a website.  I ordered some cotton gloves from Amazon.

Kate, I hope you are feeling better.

Joy, Here we go!   I have decided that we will be fine, and I am going to call my nurse navigator every time I have a question or something just doesn't feel right.  She is very sweet, and reassuring.  I know she will probably get tired of me calling, but it's her job and I really think she enjoys helping people.

Hoping for a se free day...

Birdlady

 

Kessala

Birdlady, I think you'll do fine on Xeloda.  Good for you for starting your medication right away. 

My first side effect after being on 4,000 mg of Xeloda per day was a pins-and-needles sensation on the bottom of my feet.  Since that didn't actually hurt I never told my doctor.  Two days later the "needle" sensation had become pain like fire!  Then I phoned Doctor who told me to stop taking Xeloda and after my foot pain stopped we would start Xeloda at a lower dose.

My foot pain lasted a full SEVEN days before I could walk normally again.  I ended up with blisters the size of silver dollars on my soles.  It wasn't fun.

My message isn't to scare you but to remind you when you notice any side effects from Xeloda CALL YOUR DOCTOR so they can at least note it on your medical chart. 

I've been taking Xeloda for 1 1/2 years now and I'm managing fine.  Xeloda has eliminated the mets in my liver.  I was so frightened to start taking chemo but Xeloda is very do-able.

Kessala

Joy78

Birdlady,  I am happy to hear that you started your Xeloda today.  AND, I know exactly how you felt when you read all the literature that came with the meds.  I, too, felt very nervous.  The most scariest thing when I read  you should wear plastic gloves when taking the medicine.  It dawned on me that if I couldn't touch it, what was I doing putting it into my body.  I mentioned it to the nurse and she said, "Well, it is chemotherapy."  But, then,  a couple posts above here,  Kt mentioned that she thought that was over-kill.  So, that kind of calmed me down.   That was sweet of your daughter to send you a care package.  I have ordered the gloves and socks from Amazon, also.  And, I also ordered 2 pairs of the Skechers (sp?) shoes from Amazon that were recommended by somebody on here.  I wasn't sure of the size, so I will probably send one pair back.. I have a terrible problem getting comfortable shoes,, so I am hoping these will work out.  I will be anxiously awaiting to hear how your first day goes.  My daughter-in-law thinks I should wait until after my  doctor's appt. on Monday to start, but I just don't want to keep delaying.  The nurse thought it was best to start on Sunday as that is the start of the week and would be easier to keep track of the weeks.   So, I do plan on starting Sunday. I will just hope I will not have any problems on Monday;.  My son is picking up the Rx for the nausea med this evening.  So, here's to GOOD LUCK for the both of us,  and also to all the other gals here.

Kessala,  Your message above is really encouraging.  Thanks for the suggestion about getting in touch with the doctor when you first notice any problems.  I will certainly keep that in mind.  I will be taking 3,000mg to start.  I have 2 liver mets and 2 spots on my spine.  I have done well since I was first dx in early 2006.  And, even now, I don't have any aches or pains.  Have trouble walking due to my previous spinal surgery. 

I hope and pray that Birdlady and I will do as well as you have.

Thanks again for your encouragement. 

Joy

birdlady222

Kessala, Thank you for your encouraging message.  It's a little scary starting on Friday, knowing that se can happen at any time, and become extreme(like yours did)  I'm glad you shared your experience, because I would probably do what you did.  I will follow the instructions and notify my doctor of anything abnormal.  My husband wants me to make him a "Call the Doctor" list for him, so if he notices anything he can take action.  I am so encouraged that you have been on Xeloda for so long, and that it eliminated your liver mets.  I have just been dx with new mets to the liver, and that freaked me out.  It's good to know that there are meds that can help us(if we can take them).  So far, today I am feeling well.  I was very concerned about nausea and vomiting, but that hasn't been an issue.  Joy, what did your doctor prescribe for nausea?  Just curious....

Joy, can you post a link for the Sketchers that you bought?  I couldn't find it in the posts above.  I hate shoes, and would love to find something comfortable.  Yes, my daughter is my angel.  She lives about 4 hours away from me, so she sends care packages. 

Thanks to all for support and encouragement, and suggestions.  It helps me so much.

Have a good weekend everyone!

Birdlady

 

 

kt1966

Thinking of you ladies just starting on X, wishing you few if any se's & that it kicks cancers butt

kt

Joy78

Hi Birdlady,   so glad that you had a good day.   The doctor prescribed Ondansetron  8 mg,  which is generic for Zofran.   1 pill every 8 hours as needed.  Zofran is a common anti-nausea med.

Here is the link for the Skechers. 

http://www.amazon.com/gp/product/B00I67TOLK/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1     They are supposed to come on Sunday.   They  just opened an Amazon distribution center in my area and I think that is why they will deliver on a Sunday.   I have so many pairs of good shoes that I just can't wear.  I wear an old pair of Easy Spirits that I am ashamed of, but they are so comfortable.  Or, I do go barefoot most of the time.  I also have a pair of Grasshoppers that I can wear when I go out.  I am hoping these Skechers will be comfortable.  

Joy78

I hit the submit button instead of the Preview button, as I wanted to make sure the link worked.

I did want to add that I hope you have a good night and will be anxious to hear how you feel tomorrow.

Have a good night.

Joy

Joy78

Birdlady,  I have been here a couple times today, hoping to find out how you made out yesterday and how you are feeling today.   I hope you are feeling so good, that you are out shopping.

I am going to a birthday party for my son this evening, so not sure if I will get to check in before I leave. 

Sure hope you are having a nice day.

Hope all the other gals are doing good and enjoying your Saturday.

Joy

birdlady222

Joy, thanks for checking in on me :-)  I have been doing fine.  I slept great, with no noticeable se.  My back hurt a little when I got up, but that went away once I got up and moved around.  My appetite is good.  I didn't go out shopping, but I felt good.  I hope this continues.  It's been much easier than other chemo I've had.  I always want to sleep, but nurse navigator says that's ok.  My body has to adjust to the medicine. 

Have fun at your son's birthday party!  Take pictures!  Good luck tomorrow with your first dose.  The first one is the hardest....

Thanks for the Amazon link for the Sketchers.  They are cute, and they look comfortable.  I can't wait till you get them.  If you like them, I will order some. 

I hope all of you Xeloda girls are having a good weekend!

Gentle hugs,

Birdlady

Joy78

Birdlady,  so glad that I checked one more time.  So happy that all is going well.   Thanks for the good wishes.

Joy

Joy78

Good morning.  Sure hope everyone is doing good this morning.

I got the first dose down and feel better now.  I don't know what I was expecting, but I know the next ones will be a lot easier.

I was talking to a nurse friend of mine last night, and she told me that her cousin has been on Xeloda for almost 5 years and has not have any drastic side effects.  So, that was encouraging.  I have good feelings.

Thoughts going out to all the other gals on this board.  Have a good day.

Joy

Joy78

Wondering where everybody is ?

Joy

mscal02

Hi Joy : I've been taking Xeloda since November last year. I haven't had any signs of hfs, except the darkening of my hands and feet.It is a pretty easy pill to swallow for chemo. For the first time since I've been taking them, I forgot to take my evening dose last week.I don't have much of an appetite, but eat because I know I have to. I haven't lost weight either.My tumor markers were down last month. I have another appointment tomorrow and I'll be able to see if the downward trend keeps going.

apackoftwo

Kessala - I am wondering how much Xeloda you are taking since they lowered your dose - I started with 3500 mg. divided in two doses - 2 weeks on and one week off - had severe hand foot symptoms so stopped for a month and am currently taking 2000 mg. divided - 1,000mg morning and 1,000mg evening, one week on and one week off and am worried the dose is not high enough - have mets to bones and liver and last scan showed no further progression and no growth of existing tumors but they are not going away either. I have been on Xeloda for about 5 months now. No side effects I can't live with - fatigue and muscle aches - so think I could tolerate a higher dose - keep wondering if more is better since it is having some positive effect as it is.

kt1966

Hi Joy- how is the xeloda going? Hope it's kind to you.

Mescal, I've been on it for 7 months & my last 2 blood tests showed the markers going down, hooray! I hope yours continue to head downwards too. Sound like your se's are very minimal- that's great

Apackoftwo, I remember reading somewhere that a lower dose still works...can't remember where unfortunately.. Mine was lowered too but just to 3500/day. I had been on 4000.

I'm having scans in 4 weeks or so to see how things are going.

Take care all

kt

Joy78

Gosh, I am happy to see you all.   I was beginning to think that something was wrong with this site.

I started the medicine on Sunday, and so far, I have not noticed anything any different.   I think I am getting a cold, but I don't think that has anything to do with the meds.  And, I have been taking it with a little demi-tasse spoon, so am not touching it.  When I read in the instructions about using plastic/rubber gloves to take it with, that really did me in.  The first dose was hard, but that feeling has passed.  I decided to keep a log of my days.     I am sure it will take a little while for it to get into my system, so I am giving it a week or two, just to see how I will feel.  So far, so good.

Mescal,  I have not noticed any loss of appetite.

KT, glad your numbers are going down. I have to have blood work done this Sat. but I think it is a little too early to see any change.  My numbers are not high to begin with, tho.  Last time I had blood work, the number was 51.  Good luck with the scans.

Apackoftwo,  I had read that same thing that KT told you.

Have a good evening.

Joy

 

 

 

 

 

Kessala

Apackoftwo, I'm currently taking 2,000 mg of Xeloda daily.  1,000 mg in the morning and 1,000 mg in the evening.  My hand/foot syndrome is always with me, sometimes worse than other times but it's never gone.

Joy78, I wouldn't worry about touching and handling your Xeloda tablets.  No medical person has EVER told me to avoid touching the tablets - no doctor, no nurse, no pharmacist.  If it weren't for the wording on the drug paperwork we wouldn't know about this.

I count out my Xeloda (and other meds) into a 7-day pill box, spill the tablets into my palm and count them out.  I just make sure my hands are clean and dry before handling my medications.  I don't worry one whit about avoiding touching the Xeloda tablets.  You will be fine if you simply dump them into your palm or pick the tablets up with your fingers.  You can skip the little spoon.

Kessala

Joy78

Thanks, Kessala.  I even mentioned it to the nurse and she said  "well, it is chemotherapy".   I know they have to mention all kind of side effects, even if it is only one person who has experienced that particular s/e,  I guess you could really drive yourself crazy, if you dwelt on all the stuff that they mention.   I know I was on Lyrica for a while, and one of those side effects is suicide.  So, I guess I will get over it.  LOL

I have been wondering about Birdlady.  She and I started on Xeloda the same time, and I have been wondering how she is doing so far.  So far, I have not noticed anything different.  I guess I keep waiting for the "shoe to fall".   

Joy 

birdlady222

Hi girls.  Sorry I've been absent.  This Xeloda is giving me a rough time.  I was OK the first couple of days, wanting to sleep a lot, but that was ok.  Then on day 4 I woke up vomiting.  I called the nurse navigator and she had me take Phenergan and a cracker.  Then wait 30 minutes and take the xeloda.  I kept it down, but I have no appetite and I just want to sleep all of the time.  I have an appointment with my onco Dr tomorrow.  This is not fun.  I am hoping that my body will get used to the medicine and it will work for me.  I have always been sensitive to meds, and had high hopes for this one.  Also, almost all of my eyelashes fell out in 4 days!  I wake up in the morning with them all over my face

Joy, I'm glad you are doing well.  I hope you are not getting a cold.

I'll let you know what the doctor says tomorrow.  Thanks for your concern,

Birdlady