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Xeloda Group - Jan/Feb 2018 (Early Stage)

Hi, gals, I'm starting Xeloda today as adjuvant treatment due to unsatisfactory response to neo adjuvant chemo. Although I was told the pill is tolerable,I'm anxious about the side effect. Hope we can use this place for information sharing, encouragement, spiritual support!

Dosage:

Weight 94 lbs, 1500 mg/day, 7 on /7 off, 6 cycles

Start date: 1/23/2018

Clarification:

The post is originally created for early stage Breast cancer patients with no complete pathological response after neo adjuvant chemo. But welcome all those on Xeloda journey.


Tips


4/18/2018

Hi, Gals, I've completed my 3 months' Xeloda journey. And here are some tips I feel helped to alleviate SEs for me, hope my share would be helpful to others.

Many of us have experienced IV chemo, I am not going to list out the tips that overlap with IV chemo. There is a post summarize useful tips for IV chemo in a thorough way. I highly recommend ppl to check out that post in case you haven't gone through IV chemo —- a lot of tips will also help when you are on Xeloda.


Good Luck!



1. Drink a lot of water

Xeloda tends to dehydrate human body, which will lead to headache, fast heart beat, fatigue ... I had fast heart beat for the first several days after I started Xeloda. I began drinking large amount of water afterwards and the symptom seems improved by a lot. I usually drank 3 bottles of water along with each x intake and kept hydrating myself by drinking all kinds of fluid such as juice, chicken broth...


2. Limit the movement that would worsen the pain

HFs is the most common SE of Xeloda. No later than 2 days after I stared Xeloda, I felt pain in my feet while walking (which reminds me of mermaid ... )the feet got all red and sensitive. Besides immediately cooling the feet down, I tried avoiding any extra movement that will put extra pressure on my feet. I stopped daily 40 min walk, tried putting my feet up ... all these efforts have successfully reduced the feet pain for the rest of the journey.

Besides HFs, I did have body/muscle/joint ache. I found out that as the body becomes super sensitive, any normal muscle sore caused by a slight stretchwill be amplified to an intolerable muscle pain under the influence of Xeloda. Stopping exercise, avoiding lift heavy(or even normal weight) stuff ... did help me go through the last three cycles much easier. During my on-weeks, I dont even touch the cookwares — thanks to my husband for making meals for the family and taking care of me


3. Gastrointestinal issue

GI didn't bother me too much on Xeloda, most probably I've already learnt good lessons through last year's IV chemo. To me, abdominal cramp and slight diarrhea were my biggest concerns, in a manageable way. Here I highly recommend probiotics to prevent/ alleviate GI issues. Bio-K is the one helped me go through both IV chemo and Xeloda journeys https://www.biokplus.com/en_us

I used to have diarrhea for over a week on the first cycle of Cytoxan/Taxotara and constipation for the second cycle... Bio- K saved me!

Nausea is not a major concern, however it hit me sometimes especially in the morning. Saltene crackers do help. And remember, don't leave your stomach empty!




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Comments

  • proudtospin
    proudtospin Member Posts: 4,671
    edited January 2018

    hi, been popping this dang pill for several,months. Guess the only side effect is extreme tiredness. Just had some scans and expect to talk,with onc on friday

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    Hello, Walkingintheclouds. Would you clarify? From your opening post it sounds like you are thinking of this thread as a place for people being treated with Xeloda for stage III (or lower) breast cancer. If this is the case, you might ask the moderators to help add "stage III" or "early stage" to the topic title, to clarify. Now that Xeloda is being used for early stage, I think it is a great idea to have a thread devoted to that.

    If you are looking for Xeloda for stage iv, there is a very active stage iv Xeloda thread called "All about Xeloda", so if you are stage iv you might want to pop in there, too.

    https://community.breastcancer.org/forum/8/topics/...

    In any case, may you have great success and no hfs trouble!

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited January 2018

    Hi, ShetlandPony, thanks for the information. I opened the post for early stage patients who don’t have complete pathology response and are put on Xeloda as adjuvant treatment.

    I’m trying to figure out the way to change the title to clarify the focus.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    I think the mods may have to do it. You can send them a private message. Glad to hear you are early stage and not iv! And that you have this drug available to you. Xeloda has done great things for me, and I bet it will for you, too.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited January 2018

    I’m so happy to hear that the medicine has done great things for you! I hope it will do the same thing to me! Praying for min side effects and Max efficacy

  • beauz
    beauz Member Posts: 113
    edited January 2018

    Hi walkingintheclouds, I had unsatisfactory post surgery pathology results after neoadjuvant chemo. I did a bit of research here about my options before my appointment with my MO. When he suggested Xeloda before radiation and hormone therapy, I agreed without hesitation. My dosage is 3300mg per day, a little less than what I should have, half in the morning and half in the evening. Full course is 8(or 6) rounds of two weeks on and one week off. I just finished my first round tablets. I will do blood test next Monday before seeing MO. So far the SEs are very mild, a little change of taste buds and a little less energy. Wishing for min side effects and Max efficacy!

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited January 2018

    Beaus, I’m glad the SE is mild for you! Can I ask what will you check for your blood test? CBC or any other items? My oncologist doesn’t feel the need for me to do then CBC until the completion of two cycles as he thinks the impact on WBC isn’t as dramatical. Also, my dosage is low

  • beauz
    beauz Member Posts: 113
    edited January 2018

    Walkingintheclouds- the blood tests includ CBC , liver and kidney functions, the same as I got during AC+T. How are you doing? It's good you don't have blood test as often. I don't like my blood being taken too frequently.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited January 2018

    Celebrating the completion of my first 7 day Xeloda journey (actually I have one more pill to take tonight). Feeling not too bad except experiencing exhaustion and fast heart beat for the last two days. I hope my body will take the following 7-day break to recover! Please pray for me

  • beauz
    beauz Member Posts: 113
    edited January 2018

    Walkingintheclouds- praying for you. Met with my oncologist this morning. My neutrophils is 1.4, just holding on this time…. The skin on my hands and feet peeled a bit. Starting the 2nd round tomorrow.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited January 2018

    well it seems after couple months of this, i realized my ankle was sollen, seems i have a blood clot, yummy, now on blood thinner

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    proud, so sorry to hear that you need to use blood thinner. I read that certain blood thinner will interact with Xeloda. Hope the med you are taking is working but not interrupting xelod

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    I’m on cycle two and sound my skin significantly darker than before ... I was tanned during the course of CT regimen last year but recovered 3 months off chemo. Now the skin darkening effect comes back ... feel sad about it

  • kmajor
    kmajor Member Posts: 68
    edited February 2018

    Hey everyone,

    I met with my oncologist today and he wants me to start on Xeloda on Feb 26. My surgeon got clear margins and my nodes were clear. I had a little bit of cancer left that the AC and Taxol didn't kill completely. He wants me to do the Xeloda and then radiation. My question is has anyone else done it that way? I thought it would be the Xeloda after radiation.

  • beauz
    beauz Member Posts: 113
    edited February 2018

    hi kmajor, Well done on your clear margins and zero positive nodes. I am on my 2nd round of Xeloda. I will do radiation after completing Xeloda. My MO said either way is alright. I like this way because I have more time to heal from my surgery.

    Yes walkingintheclouds, the skin on my face , hands and feet became darker as soon as I took Xeloda. My 2nd round has been alright so far.

  • kmajor
    kmajor Member Posts: 68
    edited February 2018

    Beauz ~ Thank you 😊. I was so disappointed today when he told me that I didn't even think to ask him. How are the side effects for you so far?

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    kmajor- I’m taking Capecitabine prior to radiation (I feel there is a need). Capecitabine is much tolerable compared to ACT. The major side effect I’m experiencing is fatigue, darker skin, joint pain — but in a manageable way so far.


    Beauz- I’m glad the second round has been tolerable on you :) I feel super tired on capecitabine.

  • IntegraGirl
    IntegraGirl Member Posts: 48
    edited February 2018

    I am half way through round 6/8. I did 2 rounds, took a 3 week break while I did radiation in November then went back onto it. So far, SEs are pretty mild. I've been tired for a year so not sure how much is attributable to X. I have some tingling and numbness in my hands and feet.

  • beauz
    beauz Member Posts: 113
    edited February 2018

    kmajor- in regard when to take X, I consider following 4 cases.

    Many of us have surgery first followed by chemo prior to radiation.

    Some of us have chemo first and then surgery followed by X prior to radiation.

    Some of us have half chemo first and the then surgery followed by the remaining half of chemo prior to radiation.

    Some of us have chemo first, then surgery followed by radiation prior to X.

    3 out 4 of above cases have radiation last. So It makes a lot of sense to have X prior to radiation. Just for your peace of mind.

    I felt a drop of energy level on the first round. But I haven't felt that much on the second round. Maybe I am used to the new energy level. My neutrophils was low at 1.4 after 1st round, but I don't feel the effect of it. Taste buds changed a bit. A little bit of hsnds and feet skin peeled. My face looks tan. A lot of brown and purple spots on my hands and feet. Overall no major problems.

    Walkingintheclouds- with young kids at home, you will feel tired for sure. Hang in there, you will finish X long before me.

    IntegraGirl- glad to hear you have been through 6 rounds with only mild SEs. How was your blood counts? Best wishes to you.

  • kmajor
    kmajor Member Posts: 68
    edited February 2018

    Thank you beauz and walking in the clouds 😊.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2018

    Hi everyone, I am also taking Xeloda to prevent recurrence. My dosage is 2500 - 3000mg per day, two weeks on one week off for 6 cycles. I am actually on the last cycle now, gladly so far it has not been too problematic for me. I did have hand-foot syndrome for 2-3 weeks during previous cycles and taking big dosage of B6 really helps! I will have DIEP Flap reconstruction at the end of March so I am thinking about coming off it early to have better blood counts for surgery.

  • IntegraGirl
    IntegraGirl Member Posts: 48
    edited February 2018

    Beauz, WBC is a bit low but nothing worrisome.

  • beauz
    beauz Member Posts: 113
    edited February 2018

    integragirl and stephilosphy, glad to hear you are doing okay with X.

    Stephilosphy, wishing best for your upcoming surgery.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    stephilosophy, congratulations to the completion of Xeloda! Best wishes to your surgery!


    I have a question for all of you — I had really bad should pain towards the end of my last cycle, does anyone else have such experience? Is it normal

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi walkingintheclouds- I have had pain on my surgical site since surgery. At first I know the pain was from the wound. 4 weeks after the surgery, I started to have sharp shooting pain on my right breast which doctors said was nerve pain…. ? After I started X, the pain became pins and needles like…. So far the pain hasn't bother me much, but I do take notice of it. I think as long as the pain does not get worse, I shouldn't worry too much.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    thank you Beauz, my shoulder pain relieved a lot once I’m off Xeloda. Guess I have to tolerate it as a side effect for 4 more cycles

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2018

    Hi, I do have some aching almost everywhere of my body, but I believe they are from Aromasin instead of Xeloda. Medicating

  • LeahBarrett1
    LeahBarrett1 Member Posts: 4
    edited February 2018

    Hi Stephilosophy00 and gang,

    I'm just finishing my 2nd cycle of xeloda (3,000mg/d) and set for a total of 8 cycles. I see many of you mentioning taking b-6: what dose? I am also curious about the dose of xeloda women are taking? Do you mind sharing your dose schedule?

    Any suggestions for managing reflux/nausea? This drug is definitely affecting my taste and I'm concerned about mouth sores. I was really hoping to cruise through this drug since carbo/taxo and a/c were hard to say the least.

    Thanks ahead of time,


    leah

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi Leah, I just finished my 2nd round tablets of X (3300mg/d). My dose seems heavier than most people here and I am very small(153cm, 47kg). I am not taking any vitamin supplements and MO hasn't suggested any. My taste buds changed a bit, but hasn't bother me much. My way of preventing reflux/nausea and mouth sores is to eat good breakfast (before 8am) and lunch(aound mid day), then eat very light and early dinner (most time fruits before 5pm), go to bed by 830pm. I never missed breakfast and lunch during chemo, didn't have much issues with nausea and mouth sores. I didn't take any medication for nausea after each infusion. I did have fatigue during chemo. Best wishes for your X treatment.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2018

    Hi, I take 300-400 mg of B6 daily!