Xeloda Group - Jan/Feb 2018 (Early Stage)
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I took 3 big pills / 2 small pills twice a day for about half the rounds then dosage dropped to 3 big pills / 1 small pill twice a day because my hands and feet were getting numb. Although that could have been residual SEs from docetaxol. The good thing with Xeloda is that you can reduce or suspend your dosage as you go along to address SEs. Given how bad my feet got with round 7, I was worried about my last round. My MO gave me a dose reduction plan in case things got too rough. I managed without changing anything but it’s nice to have some notionalcontrol.
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IntegraGirl - congrats on finishing! Did I read your post correctly? You did half the rounds taking 10 pills a day? Just trying to grasp what I'm in for.
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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 ormal 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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Walkingintheclouds, congratulations on getting over another hurdle! Thank you for sharing your experiences.
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Walkingintheclouds
Thank you for your post re symptoms.
My SEs have been very similar. I also added probiotics and believe they are helping. And I agree re drinking lots of water. Someone on this post suggested that earlier and I am glad I took her advice!
I would add to your recommendations using lots of Eucerin lotion on hands and feet. I’m on round 3 and so far only a little peeling on hands and feet. Sorry to hear you have had to reduce your exercise. I have learned from MO that these side effects are not cumulative like some of the SEs from AC/T IV chemo and that was good to hear.
Best wishes for all of you on this journey we are sharing. 💪0 -
Thanks everyone for posting the tips, much appreciated! I received a message today from a specialty pharmacy saying they are working on my prescription, I'm assuming that's my xeloda. I thought I was going to be scheduled for a hysterectomy first, but haven't heard back from the Dr. Anyone know if you can have surgery while on it?
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Hello, joining this thread as my first day on Xeloda is today. I am doing 6 pills a day for 14 days/7 days off regimen due to a high oncototype score. MO also recommened Gemzar but I have held off on that to see what if any side effects I have on the Xeloda.
I was glad to see this thread since its seems difficult to find many on Xeloda her are still early stage.
Happy Mothers Day
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Hi Opt4Life,
I am on the same dosage now and am doing fine. My MO had to lower the dosage twice due to severe diarrhea...TMI *smile*
I hope you do really well.
I echo the suggestions made by others here:
Drink lots of water, rest when you are tired, Use tons of Euceryn lotion on your hands and feet throughout the day even if you don’t think you need to, call your MO right away if you have any extreme side effects. I tried to just be tough with the diarrhea side effect but landed in the hospital for over a week. That was round 2. I’m in the middle of round 4 now and doing much better
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Hi Opt4Life,welcome here. I hope you recover well from your recent surgery.
Chelsea, sorry to hear about your hospital stay and glad you are doing better with lower dose.
I am about half way through radiation therapy. I am happily surprised that I am feeling so well without the side effects of Xeloda. I expect to finish radiation in early June and I am not looking forward to going back on Xeloda.
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Hi again everyone,
I am starting Xeloda again on Monday after a break from it due to surgery. I am also starting radiation on Monday, so I will have a reduced dose of Xeloda during rads: 4 pills per day, Monday through Friday, with weekends off. Before surgery it was 6 pills per day, two weeks on one week off. After rads I'll go back to that schedule. I hope it goes ok! I'm not looking forward to doing chemo and rads at the same time, but I do trust my MO so I'll give it a try.
Beauz, best of luck to you when you go back on it. Opt4Life, I hope Xeloda treats you well - the suggestions here have all been helpful in my experience. Chelsea, glad you are feeling better now, that sounds rough!
Best wishes to everyone here - this has been a helpful thread.
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Hi buttonsmachine, nice to hear from you again. Interesting combination of rads and Xeloda at the same time. I do remember my MO told me that Xeloda and rads are compatible. I just didn't really know what it means exactly. How many rads will you have? My schedule is 25 rads of whole breast and collar bone area plus 8 boosts on scar line. Best wishes to you.
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Good morning ladies, hope you all had a great weekend and a wonderful Mother’s Day!
Day 4 on Xeloda and so far I feel fine...but my heels look terrible and are all craacked. I just got a pedicure a week ago that usually leaves me with soft heels for about three and half weeks as long as I moisturize. Though if this is the only side effect, I can certainly deal
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Opt4Life, I took my first dose this morning. I can't believe its affecting your feet already. Eeek! Better get the lotion applying started.
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Hey Beauz - My first dose of radiation was this morning, and my first dose of the latest Xeloda cycle is down the hatch too. I'm having 25 radiation treatments total. My RO is undecided on whether to give me a boost, and she said it partly depends on how my skin holds up. My case is a little different due to having previous radiation and my very thin skin graft. I will have Xeloda and radiation five days a week, and then I'll have the weekends off. However, the priority right now is to get me through radiation, so they said if they have to hold the Xeloda until after rads they will. The nurse practitioner also said not to get attached to my finish date, because they expect me to need breaks. I'm hoping for the best and trying to take it one day at a time, although sometimes I wonder how much my little body can withstand! One day at a time...
Opt4Life - What kind of lotion did your MO suggest? I hope your heels get better!
And Jennifer - Best of luck, and I hope the Xeloda goes well for you!
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Lotion Lotion Lotion Lotion *smile*
I have three more days of Round 4 (3 pills 2x per day).
Side effects are extremely tired in afternoon and needing lotion lotion lotion on my hands and feet.
We can do this ladies!!!0 -
opt4life, I had cracks on my hands and feet during dry weather and low humidity. Yeah, definitely lotion lotion lotion and drinking plenty of water.
Jennifer, best wishes to your Xeloda course.
Chelsea, yay! You are nearly half way through!
Buttonsmachine, glad to hear your team has many backup strategies to help you go through treatments. My radiation nurse put thin films on my collar bone area, under my breast and scar line to help with possible skin reactions to radiation. The film has been on since the second week of rads and will stay on until two weeks after my last rads treatment. She also gave me lotion to put on radiated area that not covered by the film. I think the film will be perfect for your case. I post the following pictures .Hope it will help you.
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Thank you beauz, that's great! I'll ask my RO about it this week when I see her. I hope radiation is going well for you so far - are you about half way through?
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hi, Gals! Although i finished my Xeloda treatment, I cannot help coming back to check
hope everyone’s doing well! Opt4life, sorry to hear that you feel the HFS so quickly. Hope Lotion and ice willl help.
Jennifer, good luck on your X journey!
Chelsea, hang in there!
Buttonsmach, you are taking radiation and Xeloda at the same time! Hope you have the minimum side effect. I heard it might be more toxic than one treatment at a time. Good luck!
Beauz, has your Xeloda done or you are going to continue after radiation?
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Thanks walkingintheclouds! Congrats on finishing the Xeloda, that's wonderful! :-)
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Walkingintheclouds, Thank you for staying in touch and cheering us on!! Congrats in finishing. I’m finding my groove. Round four of eight ends tonight. 👍🏻0
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How is everyone doing with side effects? I just finished round 1 with almost none. I did have to ice my feet a couple times after being on them all day, but I think it was more preventative than anything. Sounds like most people hit a rough patch around round 3. Oh, I'm also having some bone pain in my hips. Anyone else? I hope it is just a SE.
Rebekah
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walkingintheclouds, always nice to hear from you.
Resides, did you experience any bone pain in your previous chemos like a lot of people have? I hardly experienced any bone pain in all my chemos. I would mention it to my MO. All the best.
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Hi rseesides. I had intestinal issues almost immediately also discomfort with hands and feet and very tired. The side effects have not worsened for me, but my MO did lower my dose from 5000 mg to 4000 mg and now 3000 mg. The severe intestinal troubles finally went away with the lower dosage. I just finished round 4. I don’t feel my tiredness is bone pain but I do feel “bone tired”. Truly wiped out after about 2pm. If I am on my feet a lot they become really sore. Also my hands ache if I spend too much time on the computer. Sounds like you are off to a good start. I wish you well as you complete each round.0
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Hey there Rebekah! I am on my first off week after finishing round 1. Just had an appointment with the Onc on Wednesday and he asked about my side effects - and I didn't really have any. I have been having some back pain - but, I can't say it's from the medicine because I've been doing ALOT of heavy lifting lately...so I just kept that to myself, lol. The pain did start the week before I started taking the medicine and seems to be getting better. I guess if it gets worse when I start the medicine again on Monday I'll know it's partly to blame. No issues with either my hands or feet - yet. Meet with the surgeon next week to schedule getting my port out. Keep us posted here - and everyone else currently on this medicine - on how you're doing. Hope everyone enjoys the holiday
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I start to take Xeloda today and it's going to be 8 cycles. I learnt exercise is very important during/after cancer treatments and I usually do walking. I wonder what exercise can I do if the hand foot side effects started? Any suggestions?
When I met my oncologist last week, he said several times he is not convinced Xeloda is a good treatment. He mentioned there is only one small study suggests Xeloda is effective and the benefit is only about 3-4%. But for TN and who has a residual tumor after chemo, it's the only treatment option right now and that's why I am going to take it. I wonder if other oncologists have the same opinion? Can anyone share their doctors' advice? I feel a little discouraged since Xeloda is also a chemo drug with many sides effects and in the end it may not help much.
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Hi EWU,
In response to your question, my MO has a positive opinion of Xeloda. With improved prognosis based upon documented studies he finds validation for behavior changes in treatment.
My opinion is if the side effects are debilitating your MO can reduce the dose without unfavorable results in the course of treatment.
My dosage had to me lowered twice during the first three rounds.
I am grateful for Xeloda, as I believe it is a final punch to any possible booger cells that may be wandering around.
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Thanks Chelsea, I am also grateful to have Xeloda as an additional treatment. I am taking 3000mg a day which seems not a high dose to begin with. I guess I am just scared after finishing the standard treatments there is not much I can do.
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ewu, I totally understand. After neoadjuvant AC/T then surgery, then radiation, then Letrozole, I was really surprised when the MO said next step was more chemo. I was like, Whaaat? Bit it is going fine, and I’m past the half-way point. Walking through it one day/step at a time with gratitude to be alive. I think we that are fortunate enough to have more time to live definitely come out on the other side as changed people. 💕0
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Hi ewu, I didn't have great luck with the standard treatments either, so I know how you feel to an extent. Even though Xeloda is not a definite fix, there is recent data that shows it's pretty effective. And actually, there is some evidence to say it benefits TNBC even more than ER/PR+ BC. There is a good summary of the Create-X trial here:
It's always hard to know what to do with treatment decisions - even though statistics say one thing, we as individuals don't necessarily fit into the statistics. There are always outliers. At the end of the day I think we have to find the balance between killing cancer cells and maintaining quality of life, and that's different for everyone.
So far I've found Xeloda to be easier than other chemo regimens, and I hope it's the same for you. :-)
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Hi Buttonsmachine, thanks, I hope Xeloda has minimal SEs as well. I am still in the mental state I want to throw everything at it. So even there is only a small benefit I want to have it. Hope Xeloda wont affect my daily life like that other chemo drugs did. I take the advice of many people here to have cream ready for hand/foot syndrome and drinking lots of water.
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