Xeloda for "Maintenance" purposes (not Stage IV)
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NorCalS - I have the foot pain, not the skin issues. The bones in my feet feel like they are breaking, especially towards the evening. I walk what I can, but the pain in the feet is bad. I thought that by being off of X for the last three weeks that it would've went way. I start next Friday, but on the 7/7. Hoping that the pain in the feet does not get worse.
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Hi Everyone and Mamacure,
I haven't started yet; I am in the process of getting first Rx and met with MO. The drug apparently has to go to a special pharmacy and not sure how long Rx prep will take. MO is a bit more conservative about the timing, said no less than 6 hours apart for each dose. Rx instructions say within 30 minutes after food (or during food?). She mentioned H&F & said hair growth might slow down.
I haven't seen anyone mention the whopping price of the drug, an approximately $200 copay. Dosage is starting at 1,500 per day (500 mg x 3 pills). From what I recall reading here,1,500 is the standard dose and that some ladies had to reduce to 1,000 mg due to SE's, if I remember correctly.
Sorry for all the SE's. I guess I will ride my bike if the foot issues pop up. Mamacure, did your mild nausea prevent you from eating at all and/or did you have to adjust your diet to help? I hope that won't interfere with my meals or with drinking water normally. I am always nervous before a new drug.
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Thank you Norcal, glad to hear that you were able to walk even reduced miles. I hope that rings true for me too. I heard that h&f can get really painful, especially on high doses. Some people start at 4,000+mg per day.
ACCREDO specialty pharmacy wanted me to pay $1,600 for 1 cycle. I went around and managed to order 2nd cycle without paying that. I hope that was an error. It should be $160-200. I saw that Amazon pharmacy also sold it but insurance wud be cheaper I think. My mild nausea went away thank God. I am able to eat normally and drink but need to drink even more I think. I stopped green tea during “on” weeks but still enjoy a cup of coffee. I am so looking forward to my week off next week, so far so good but scared for the next cycles. I am not needing to take pepsid yet. Anyone taking any stomach protection meds? I’m going to ask my naturopath about that. Trying to have yogurt to replenish my gut biome. Have a great week Serendipity, HopeHeal & Norcal
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Hi Mamacure, glad the nausea went away. I take Pepcid to help with reflux anyway so I hope that helps.
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mamacure - checking in to see how things are going. I hope you are all.
I seem to be tolerating Xeloda a better on the 7/7. Still having headaches, but wondering if it's due to the stress of all this.
Btw - had to create a new account due to the update, hoping to get my old account back.
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Hi All!
I'm Bree! I have done the AC-T, Lumpectomy, Rads route and started Xeloda due to residual after AC-T, on 2/27. It was Ok the first 5 days on 4000mg divided in 2 doses, 14/7 sched. just some mild nausea and mild heartburn- didn't need to take any meds for this. Then on Day 5 I go for my usual walk and the more I walk the more my upper left chest is squeezing and burning with contraction like pain. I had to cut my walk short because the more I exerted myself the worse it got. Over the next 24 hours this continued to occur off and on even at rest and esp. with exertion- so walks were painful and I stood in the street clutching my chest. Went to urgent care- had a cardiac workup- EKG, Troponin and D-dimer all OK! I was surprised how quickly it dropped my WBCs in just 6 days to 3.5 and ANC to 1.8. I was told it was not cardiac and likely heartburn- went on like this for 4 more days- taking liquid antacid and tums added Famotidine 10 mg twice daily 1 hour before Xeloda and it did not stop the burning, Squeezing chest contraction like feeling. So on Tuesday after my a.m. dose I called my oncology pharmacist and stopped it. by Wednesday morning the burning squeezing contractions were gone. Still have some heartburn but its much better and still taking the famotidine. I talked to my oncologist yesterday and she said she thinks it may be irritation caused by Xeloda on my GI tract resulting in Esophageal spasms? I asked for a DPD deficiency test and she ordered it but said usually that causes severe diarrhea. So I'm off for a week and we will restart at a very low dose 1000 mg/day for the first week and try to titrate up if tolerable.
Does anyone have any thoughts about this?
Thanks!
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Hi breedebra! Sorry you've had to join us, but welcome! I had the tight/burning chest pretty severe, along with really bad headaches and severe pain in the feet. My MO gave me a month break and changed my schedule from 14/7 to 7/7. The heartburn, if that's what it is, has eased up quite a bit, the pain in the feet not so much, but I'll deal with it.
I read somewhere on here, maybe the Stage IV Xeloda thread, that taking a Pepcid either right before or with X helps. I never did though. Do you take it half hour after you eat?
Hopefully the break and the lower dosage works for you. Maybe ask for the change in the schedule to 7/7. It really has made a difference for me. I'm on 3000mg a day (1500mg am/1500mg pm).
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Serendipity, I’m glad that the new schedule has been working out better for you. Hopefully, the rest of the cycles will be uneventful.
Breedebra, Xeloda knocked my ANC down to 1.0, so yeah, it’s powerful stuff. I was initially scheduled to have dosage as high as yours, but MO lowered it due to low ANC. Hopefully, the MO can figure out the right dosage and schedule for you
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hi everyone, glad to see you all on here with the site updates & all. Welcome BreeD, thanks for sharing your experience with us. I am now half way thru cycle 3. Last week off was heavenly. So far not bad, my wbc went up slightly to 2.3. Still low. Just a touch of nausea, need to drink more water. Still on 3,300 per day 2/1 off cycle. Did have weird heart feelings but it went away during the off week. Doc thinks heartburn. I don’t really take pepsid but have it handy. Moisturizing hands & feet, so far ok. Serendipity, 7/7 schedule sounds good, glad you are doing ok on it. Plz keep us posted everyone!
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Hi Mamacure! Good to hear from you. I'm glad that X hasn't been terrible for you. Keeping you in my thoughts!!!
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How are you doing Serendipity? 7/7 still ok? I am halfway done and so far tolerable but starting to get cracks on fingers and discoloration on the bottom of my feet and pinky toes. I mostly wear socks and Birkenstocks & moisturizing as much as possible. Just startedcycle five I am seeing my doctor this week so hopefully my white blood cells are OK it’s been in the 2.0 range take care everyone!
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Hi Mamacure! I've been thinking about you. I'm so glad it's been tolerable for you!!
I'm still hanging in there! I'm halfway through cycle 6 and then only two more after that, so more than half of what I was able to complete the first time around. My skin is ok, hands are very dry, but pain in the feet is an issue. I have a feeling MO will stop me after this cycle. I'll know next week. I'd like to stick it out for the last two, and want to try the 14/7 again to get it over with.
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Hi Serendipity,
Glad to hear from you! If you combine the last and this time, does that equal close to the full cycle? My wbc went down again so my dose got reduced by -150mg (1 tiny pill). She is rechecking my wbc again next week so it might get reduced again. I don’t like the cracking & splitting fingers & dry cuticles but could be worse. I was able to walk today wearing HOKA shoes. I feel achy & fatigued after dinner time so I like to get in bed early to relax. I hope you can continue and finish up your cycles. Please keep us posted. Take care! Thinking of you too
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My first go of X wast 11/20 and the MO took me off on 12/31/20, my recurrence happened after so we had to start from the beginning
I hope you wbc goes up. I too am wiped out by the evening so I go to bed early too.My fingers feel like sandpaper. I'm using beeswax salve, I believe I gave you the link or the name; Main Street Bee on Etsy. I love, it helps a lot. The owner is a gem.
I'll let you know what happens next week.
My best to you!
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Hi Serendipity, I ordered the new salve, excited to try it! Thanks for the reminder. With this cycle 5, the roof of mouth is sore & muscle aches around shoulders, neck & back. Very dry under fingernails. Still able to cook & wash dishes with gloves on. Take care
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Hi Mamacure! For the mouth sores I use Oral B mouth sore rinse; it has worked wonders for me. I started using it during my initial chemo and it truly was a saving grace.
I use the slave for under my fingertips and under the nails just to soothe them a bit.
My fingers look like prune within minutes when I wash dishes and take a shower.
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hi Serendipity!
My hands turn pruny too. Bottom of my feet are dark brown and both hand nails & toe nails are dry underneath. I like the Maine street bee salve, use it everyday now. I will get that mouth wash. Having diarrhea now, thrice now out & about had to run to the bathroom. Ugh. Also toe/feet hurt after walking today. Having a hard time opening jars & bottles & containers. Still way better than other chemo. This is my off week yay! 3 more cycles to go. Seeing my onc this wee. Hope you are doing well.
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Hi Mamacure!
So glad you like the Maine Street Beeswax salve. Same here, opening jars is impossible, I bought a round plastic jar opener, it helps.
I didn't have any issues with diarrhea. My hands and feet are a little pink, but no big deal.
I start cycle 7 on Thursday, 7/7 and will do the 14 days for cycle 8 so I can just be done. Sounds like we'll finish around he same time. So glad ou were able to handle the 14/7.The last one will be rough for me, but it'll be worth it to be done. My body is tired and I need a couple months off od treatment before having surgery in August.
We've got this!
Here for you!!
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Hi Serendipity,
I really hope to finish by early July, fingers crossed. 3 more to go. After reducing by 150mg last time my wbc really improved!!! It went from 1.8 to 3.2! Rich bone broth & new accupuncture also may have helped. I’ll take it. Next cycle Almost got delayed because onc Thought that I had a stomach infection based on my diarrhea. Test came back negative! I really needed some good news!! Take care keep us posted.
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How are you Serendipity?
I finished cycle 6, mild nausea not bad. 2 more to go…latest SE is body tingling. Started after being stressed, now happens daily. Have you experienced it? Thanks.
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Hi Mamacure!
Sorry for the late response. I'm ok. I start my final cycle today, thank goodness.
I don't get body tingling. I hope it goes away!
My hands and feet are in a lot of pain and headaches are bad. Since it's my last cycle, I'll deal with whatever SE' with no complaints so I can get this over with. I'm so over it.
Enjoy your weekend!
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Hi everyone, been so busy but now on cycle 5. Haven't had many symptoms except slight difficulty with fingers grabbing things, not really numb but kind of tingly. Also internal dryness causing increased heartburn potential and constipation potential, and external dryness around the lower face (looks chapped). I am also sometimes tired but not on every cycle. I find the greatest challenge is keeping the meds spaced apart, watching the 30 min post meal drug time, & spacing the Xeloda with the heartburn meds (2 hrs). Mamacure, so glad you are tolerating. Serendipity, congrats on last cycle! Healing dust to everyone.
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Hopeheal - thank you. So glad you are doing ok on X. I have found that the SE's are worse on my week off. This last cycle, even though I'm only a few days in, have really kicked my butt; cannot wait to be done as it's been a long ride.
I haven't been consistent with the 30 minutes after a meal. I do stick to 10-12 hours apart though.
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Serendipity, nice to see you again! That's great you area good about distance between the dosages, I try but many times I am less (not less than 6 hours which is MO's limit). I find, as was said on the threads, that the cycles are cumulative. I am experiencing progressive tingling in fingers this cycle (not numb though), very strange. I find I really have to self-care - sleep, stay hydrated - to keep tiredness & dryness at a minimum. But on my off weeks, it's getting a bit longer to recover with each cycle. I am sorry you are feeling worse during your off-weeks.
Xeloda rocks if it works on possible mets. I don't think my Phosphatase would be climbing if it were taking a met down though, most likely the values would be dropping. For all those who don't know, I posted on the possible mets thread: https://community.breastcancer.org/forum/105/topic...
Thanks for posting and staying in touch!
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Hi Serendipity & Hopeheal!
Serendipity, woo hoo lastcycle!! It definitely has been a long journey.
Hopeheal, cycle 5 already!! I have a hard time drinking lots of water I wish I can double my current intake.
Next week is my rest week then final cycle! After that no scans, just 3 months checkups! I have dry cotton mouth at night, some mild constipation with some diarrhea. Also fatigue, so after getting my son out the door for school, I like to linger in bed until 10:30-11 watching live with Kelly & Ryan . My hands & feet are dry & big toe hurts I feel like 90 yrs old but good some days. Mild nausea. Thinking of you two! Hang in there we got this!
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Hi Mama!
Yes, Thursday cannot come soon enough for me. it has definitely been a long ride. This last cycle has hit me like a ton of bricks.
I won't be getting any scans either unless something warrants it, with the exception of the CT scan to see the stomach blood vessels for my DIEP surgery. I see the MO and have lab work done on Monday. Then she'll see me every 3 months.
I hope your last cycle goes smoothly for you.
Hopeheal, hope all is well on your end!
Hugs<3
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Done with Xeloda!!! I was in bed all day yesterday as I couldn't walk due to bone pain and numbness. Saw MO today and she feels that three days is not going to make a difference. Time to heal.
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Hi Ivy!! I saw your post and had to say "YIPPEE!!!" I'm so glad you're done and I hope you feel much better soon. Sending love, hugs and caring throughts to you, MamaCure and others dealing with X!
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woop woop yay Serendipity great job!!!!! You did it! I’m sorry that it was so hard. You have been thru a lot. A big virtual hug for you. I hope Diep surgery goes well & you heal quickly. Keep us posted.
Thanks LW, I’m enjoying my off week before my final cycle.
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Serendipity, big hug for you. I know you’ve had a tough time on Xeloda and I am so happy you got through it. It is definitely time for healing.
Mamacure, so glad that you’re almost done as well. It really is a relief when the last cycle is finished. Let us know how you’re doing after you’re finished
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