Capecitabine

[library2019]

Is anyone taken capecitabine I started 4-9 have slight diarrhea stomach pain mouth sores sore hands and feet lack of appetite tired Dr stopped meds Monday 4/20 til my tele conference Tuesday the 28th ended up in er on Thursday 4/23 with dehydration passed out twice got fluids cat scan I was previously on paclitaxel and also was on Ibrance with no side effects this is awful no life always tired can’t sleep at nite does it get better?

[Shelby4now]

Hi I'm so sorry you are experiencing such side effects

From this drug . I have been on this drug since last October. The only side effect that I experience is fatigue. I sleep a lot. I have had many issues with the other oral chemo drugs. My doctor only gives me 75% of the Required dose. I started at 50%. Perhaps your oncologist can lower your dose until you adjust to this new drug. Take care. I really hope that you can get this resolved quickly. Please keep us up to date on your progress . God bless 🙏🏻

[library2019 in reply to Shelby4now]

Thanks hope she lowers it

[Jerseygirl45]

Feel so bad for you. I did learn if there are no side effects it’s not working. On my third different Iv chemo drug. This one is abraxaine. Hair falling out again sores in mouth bad taste sore feet etc.

Maybe they can try a lower dose.

Hope you feel better.

Barbara

[library2019 in reply to Jerseygirl45]

Thanks if 10 days gives me so much trouble it's going to be a long summer

[Barbteeth]

Hi there

I started a different drug to yours in January...Afinitor

I felt awful...really exhausted and no appetite...I texted my oncologist about lowering the dose so she did and I feel the benefits

Don’t put up with feeling horrid...we have a life to live and to live well and happy

All the best

Barb xx

[library2019 in reply to Barbteeth]

Thanks I’ll have my call Tuesday with Dr I want it reduced or changed I have felt like crap since Monday

[Barbteeth in reply to library2019]

Yes you need to be assertive...you can’t put up with those side effects or you’ll just be miserable...it’s bad enough having mbc and all the worry that goes with it

Good luck

Barb xx

[library2019 in reply to Barbteeth]

You are correct my stomach is killing me I think I will call Monday to see what they can can give me for the pain I can hardly eat Thanks

[Barbteeth in reply to library2019]

I wish you well and hope you get some relief

Barb xx

[Stinsonmom in reply to Barbteeth]

I had a tough time on Afinitor, too. Until the doctor lowered the dose. I’ve been on it and the generic form now for 10 months with no progression. But it is a tough drug.

[Barbteeth in reply to Stinsonmom]

Yes I only took 10 mg dose for one month and asked for a lower dose....I’m now on 7.5 mg which is slightly better...Ibrance was easier for me to tolerate but stopped working and I was so upset to have to change but no choice

Barb xx

[Stinsonmom in reply to Barbteeth]

I hear you. I’m on 5 mg. Still have the mouth sores and fatigue. Also developed “crazy paving” in my right lung, which required referral to a pulmonologist. That has diminished, but leaves me concerned about COVID. The onc had wanted to take me off it entirely, but I intuitively knew it was working. Thank goodness she trusted me.

[library2019 in reply to Barbteeth]

Yes ibrance was easier no problems I’m on 330g twice a day it’s awful

[library2019 in reply to Stinsonmom]

It is they gave me on 3300 mg twice a day it’s a killer

[SoCalLady]

This is a question to all of you that are on oral chemo: How come when I was on infusion chemo with my original breast cancer, I never heard of anyone having red sore hands and feet and mouth sores. Is this just particular to oral chemo? I'm not "yet" on oral chemo, but it almost seems more harsh than infusion chemo.

[library2019 in reply to SoCalLady]

I was on infusion previous to this no problems I guess it’s just this one and it’s awful

[BangorBelle56 in reply to library2019]

Me too. I have been on three chemo infusions and these little Xeloda tabs are worse than anything.couldn’t even get out of

F bed yesterday as pains were so bad.

[SusieIM]

I am all too familiar with this, sorry that you are going thru this. I was on cycle 4 with this, beginning to experience severe symptoms like you. Doc gave me a two week rest, then I'll go back on a lower dosage. Bag Balm helps with the hand foot symptom; I put it on then put gloves on to keep it moist. I have stomach upset too, I have anti nauseous meds for it, I've had diarrhea, I take meds for that. Last two weeks my energy has kind of gone out the window but today and yesterday I feel better. I hope your doc gives you a rest, maybe lower the dosage. Sending a virtual hug

[Have-faith in reply to SusieIM]

Sounds like you could use a virtual hug too! Hope you both feel better! Faith

[Duffles]

I am on my 4th cycle (2 weeks on, 1 off) except for one extra week off while having some rads. Overall the side effects are tolerable. I don’t have the hand/foot probs yet (do use the Udderly Smooth cream recommended. I have had a few diahhrea issues (controlled by Immodium). Have had some neck pain after 2 weeks on cycle. I have concluded that everyone reacts differently.

My dosage is only 2 pills twice daily (2000 mg total). My onc said low dose might prevent extreme side effects. I was told to drink 2-3 liters of fluids! I hope you can figure out what works for you with less side effects...that’s so frustrating. Every new treatment brings new adjustments...I wish you well in this journey!

[BangorBelle56 in reply to Duffles]

Just wondering what weight you are that seems a incredibly low dose. I am on 4150 a day

[Duffles in reply to BangorBelle56]

Yes I am only about 90 pounds. I have lost way too much weight for me (tho Im only 5’ or less now after spine surgery!)

Trying to gain weight...may have to go on another med if I can’t!)

Another battle I fight!

[BangorBelle56 in reply to Duffles]

Wow you are so small, no wonder your dose is so low. Good luck x

[equavel]

My onco wanted me to take capicetabine

I talked with someone who was taking it and she described the side effects that were pretty identical to those I read about

On the fifth cycle her feet were so sore she could not walk

I have made a decision that I want to « live « and not to be kept alive. I will take the Fastodex that he prescribed... reluctantly... but not the capicetabine

Do you know why they put dead people in coffins?

So oncologists can’t give chemotherapy !!!

I

Good luck

[Barbteeth in reply to equavel]

Your post struck a chord with me

I feel just as you do...no drug is worth sacrificing your life quality for

Barb xx

[lynnhbtb in reply to equavel]

I love your post and especially your words "I want to live and not to be kept alive." Amen! I've recently decided to take a break from from IV infusions for a while, one cycle, maybe two. Just to see how I really feel without all the chemotherapy and supportive medicines to help prevent side effects, which have side effects. Thank you for posting this.

[Jerseygirl45 in reply to lynnhbtb]

I was off IV chemo for 6 months and felt normal. I just wish I knew how long is to long. My markers jumped up to 4400 is that bad? Does it mean anything? Who knows.

We just keep trying. To stay here and be with family and friends.

My granddaughter just gave birth to twin girls last week .

Barbara

[lynnhbtb in reply to Jerseygirl45]

Congratulations to you and your family on the twins! How exciting!

[Teddielottie in reply to Jerseygirl45]

Congratulations ! Lovely news ! xx 👶 👶

[Bubbles001]

I am on my third round of this drug and had terrible side effects when I first started it. I had chest pain, nausea, and constipation, among other things. I called my Onc after three days and he cut my dose to 75% for two weeks on, one off. The side effects slowly went away and now I feel they are very tolerable. Ginger tea helped my nausea a lot and Gatorade helps to keep me hydrated. I can’t wear my contacts during the two weeks on as my eyes feel very dry. It’s a nasty drug until they get the dose right. If you go online to the Xeloda website for physicians, there is a chart with side effects and guidance for doctors on their severity and when to cut the dose. They can also make the schedule one week on and one week off. The good news is I think it’s working for me. A lot of my inflammation and pain is gone. I have extensive liver and bone mets. Starting a new drug is tough. Hang in there!

[hope4mbc]

Good morning! I am sorry to hear about all of your symptoms. I started the same drug three days after you. I was told to drink 10-12 cups of water a day, and I measure everything that I drink each day and record it in my chart. I think this has mitigated some of my symptoms. I have had slight diarrhea and some stomach pain but it has been manageable. It is really hard for me to drink all that water, but I like to think of it washing all the bad stuff away. My oncologist also told me to put Udderly Smooth on my hands and feet several times a day, and I have been doing this a lot. I was also advised to try to keep my feet up some during the day, so I do this as well. I hope that you feel better soon!

[flowersinherhair]

I took that in pill form while awaiting approval of a clinical trial. it was a ten day cycle and I was only able to complete seven days due to the side effects you stated. however, it did shrink her2+ breast cancer tumors in liver

[library2019]

Thanks to all answers this am my temp is 100.1

[MacroMom]

So sorry to read that you have a fever now too. Is there a 24/7 nurse you can call? With the stomach pain and dehydration issues I hope you can talk with or see someone today.

I was on Xeloda for 7 months with only foot issues that were minor most of that time. I think dosage has a lot to do with the side effects. I was on a relatively low dose (1300 mg morning and evening), and took it 2 weeks on, 1 week off. If I had taken it 3 weeks in a row I'm sure my feet would have been worse. If you are on a higher dosage you may want to talk about lowering that. I do think it helped keep back my liver mets, at least for a while.

Sending healing sun from Oregon and hoping you get some relief!

Patty

[Carcinomacarolyn]

I started with 2 weeks on, 1 week off. I developed open wounds around my big toe nails that got infected and I could barely walk. My fingers started splitting open too. That was along with the very painful red hands and feet. The loose stools finally went away. I also had very bad tongue sores.

Solution: I now am 1 week on, 1 week off. I take neurotin and ibuprofen 3 times daily. If I don’t stay on my schedule the severe pain starts up. I soak my feet in water with Epson salts 2 times a day. I put Vaseline on my hands and then some surgical gloves. At night I put vaseline on my feet and then put plastic vegetable bags over them. My nurse said aquaphor (sp?) is best but I haven’t gotten any yet. You must keep your hands and feet hydrated all the time. I still have some hand and foot pain, but it generally doesn’t interfere with my job. My hands and feet peel. My tounge hurts for part of my cycle so I use oral lidocaine for that. My lips are almost always chapped, sometimes a little cracked. I need to keep lipstick or lip balm on them.

Uptick: This is the only therapy that has stopped my cancers growth. It was 9 months of trying other things that had no effect and I started to plan for my death. I now enjoy life and am grateful to the good Lord for keeping me around to raise my 15 year old daughter. Praise the Lord!!

[barbarac76]

I'm so sorry to hear you are such bad side effects. I am on the same drug. From the start, I have taken it 7 days on / 7 days off - that is the protocol at my cancer center. My original dose was 1500mg in the morning and 1500 mg in the evening. After six months, my oncologist reduced it to 1500mg/1000mg. Maybe you could talk to your oncologist about changing the schedule and the dose. I continue to have problems with my feet and hands, but I have a routine that seems to lessen the soreness and dryness - soaking feet and/or hands in cold water after friction causing activities, then apply a lotion ( I used Udderly Smooth - Extra Care).

I hope with some changes you can get beyond the side effects.

[library2019 in reply to barbarac76]

Thanks I’m talking to dr tomorrow

[Skcat]

Hi! Thank you for all your posts. I'm starting Xeloda soon so I thoroughly read all the comments. I've been on Ibrance and Faslodex for 6 months and scans last week show significant disease progression and lab work with increase in tumor markers. So stopping Ibrance. I'm a nurse and due to COVID-19 and my immunosuppression, I've been assigned a position I can do from home--calling patients to check on them. With the possible side effects of Xeloda, it'll be good to be home.

[library2019]

Update on xeloda I was on for only 10 days taken off bad stomach pains had ct 4/30 ended up with bowel blockage was transferred to Seidman center Cleveland was in until 5/4 had ng tube in nose not pleasant nothing to eat or drink for2 days had contrast put in tube xrays showed blockage released tube out liquid diet had diarrhea all next morning finally soft diet still can’t eat much had echo cardio gram starting adriamycin Tuesday once a week hope less side effects this is my 4th chemo