All about Xeloda
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Lynnwood, that looks very painful! I had started hfs the first round, then they dropped to 3000. Am still having is the the burning and cracking, but it's not nearly as bad! I'm on 3000, 7 on 7 off.
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Joyner What is atac-tane?
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Goldie has pictures at the end of page331 of this thread showing the conditions of before and after using the cream Atrac-tain. It looks a very good cream for HFS.
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That's amazing. I guess she got it online. I don't have HF yet but I'm writing all this info down.
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Grannax, it's smart to keep a list of what you think you might try in the future. I've just started using the Atrac-Tain, and it seems as though it might be helping. I'm putting it on my feet and hands at bedtime and putting those cloth footie/envelope things on my feet and nitrile "doctor" gloves on my hands. This will only be my third day, though.
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Lynnwood-I use embroidery snips, which are small curved scissors. Easy then to not cut too close.
Joyner...3 am? ugh. No way would I get out of bed to do that. Wouldn't 8 am and 8 pm be the same?
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Lynwood - I'm so sorry about your peeling feet! Your dosage does seem high. I was started on 3500/day (3 pills morning, 4 pills at night) 14 days on and 7 days off. After the first cycle I was reduced due to hand/foot syndrome to 3000mg/day. Both my UCSF and Stanford oncologists even suggested reducing further. I'm 5'9" 138 lbs.
Unfortunately, my PET/CT scan this past week revealed my first liver met (1.6 x 1.2cm) and progression in a met at the center of my chest (on sternum). My small bone mets and small lung mets were stable to regressing, so Xeloda was most likely still work in those areas. My oncologist wants me to change treatments and is suggesting a Phase 1 trial of an Oral SERD from G1 Therapeutics called G1T48. I'm concerned that an oral SERD monotherapy will not be aggressive enough given my tumor burden and scary liver met. She also suggested A/A or alpelisib/Faslodex. I'm struggling to choose. If anyone has an opinion, I'm interested...
I made it 9 cycles (27 weeks) on Xeloda and my first 3 month scan was great. Despite the hand/foot syndrome, I'm very sad to be leaving Xeloda. On a positive note, after 12 days off Xeloda, my feet are looking almost normal.
I've REALLY appreciated all the support and tips on treating hand/foot syndrome that I've learned on this thread!
I wish you all a long, effective and gently side-effect run on Xeloda!!Theresa
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Oh, Theresa, I'm so sorry that you have to move on to something else! Good luck with your choice! I have learned since having the Foundation One test done how very closely drug choices are tied to genomic make-up of the tumor now. I read excitedly about new treatments and then realize that the mutation for which it is appropriate isn't a good match for my genomic profile. So confusing. I hope that whatever you choose is both effective and good to you....
xoxox
Denny...sorry to be confusing! I meant 3 pills in the morning and 3 pills in the evening when I said 3 am and 3 pam. Love the idea of the embroidery snips!
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Theresa, I’m so sorry you are off Xeloda. I hope you get your new tx quickly and that it works a good long time for you!
Joyner, I sure wish my onc would get my foundation one testing done! I keep asking him about it and he keeps saying yes, we will be doing that but so far nothing! It’s frustrating, because I really like him
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Gracie, my onc ordered the test when I progressed on Ibrance. He said that when I progress on Xeloda, he'll re-order to see if there have been changes in the genomic make-up of the tumor before he decides on the next treatment..
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I guess I should really push for that to be done
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Yes, Gracie, push. It takes weeks to come back and then some MO don't give I t much credit Grrrr. My new one does and I'm pleased with that. There are other places besides Foundation One. Mine was done at Tempes, much easier to read.
Theresa, I can easily imagine how you feel about progression and your first liver met. One idea might be to ask for a liver BX before changing to a different TX. It's possible your pathology will show your tumor has changed, the receptor studies have changed and a different TX might be indicated. Also, your MO could send a sample for genomic testing, which also might indicate mutations or alterations.
I don't have anything good to tell you about my experience on AA. I know nothing about the one she wants you to try. But, it might be really good. If you really trust her, go with her gut instinct. Liver mets also respond well to local treatments like y90.
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Hi all,
I'm just done with week2 of X (4000 mg). I've got 2 weeks off (because we have a planned vacation in in a few days). I'm super happy about the extra time off as I'm not very comfortable with the X SEs. It's not as bad as Adriamycin, but it's kind of rough. Feet not too bad -- redness and tenderness showing up in last few days. One bought of diarrhea -- yay Immodium once and now I'm more on the constipated side. Mouth sores and nausea. Using Ativan for nausea, but mostly it's for this horrible sense of agitation and irritability. I'm already on Celexa (since my 40s). But I just feel edgy and unpleasant and unwell. Don't want to eat. Don't want a glass of wine.
Anybody deal with this at first?
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Sorry Theresa! I am all for the new tx, since Poziotinib got rid of my chest nodes in only 8 days!
Faslodex didn't work for me and I had it with Kadcyla. But some ladies have great success with it!
Joyner-thanks for clearing that up- LOL. I was worried about such a weird schedule! I was wondering, too, about what testing I would have if new mets show up. Foundation One showed my tumors changed. But who knows????
Pearl-hang in there! I have been on chemo for 17 years and I just keep thinking how blessed that I am to still be here.
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pearltears. Yes, I had some severe SE when I started my first cycle. It wiped me out for a few days, diarrhea, nausea, fatigue, no appetite, etc. But, all SE went away. Seriously, I still cannot believe it. I'm in my third cycle of 3000 twice a day for two weeks then one week off. Who knows why some of us react so differently. You might consider asking your MO to drop the dose. Having an extra week off sounds good, too.
I've bought so many creams, expecting HF to appear at any moment, but it has not. WHAT!?!? Am I super woman? NO. Maybe, since I'm type II Diabetic the tingling in my feet is so normal I don't feel any different? Who knows, but I've got every cream on earth just in case. My MO said to take B6 for HF and I am doing that. 💞
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I've started taking ranitidine 2x per day and feel much better. Thank you, women, who encouraged me in this posting. (I think it's my first ever! Maybe second.) Appreciate knowing that I can make my way through X SEs and adapt. Really wanting this to give me more time. I love my life.
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Pearl, what is ranitidine? We're behind you, girl...good luck with the SE. Grannax's experience is surely encouraging.
Girls, I have had a bit of an epiphany, though you may not want to go to the trouble to do thhis. We are planning to go off on the boat for a month long trip north. My old Ibrance friends are familiar with my boat trips, especially Grannax! In any case, it occurred to me that if I keeled over during the trip and needed to be "rushed" to the hospital or whatever, my husband would be at a loss to explain all of the details of my situation and current and past care.
I have created a "Cancer Emergency Kit" to take with us wherever we go. It took a while to compile, but my onc loves it! She said that often out of towners end up in their office in bad shape, and no one has access to or knowledge of much of anything.
Here's what's in it, and it will travel with us:
~All ID info, to include emergency contracts and all insurance info
~Physician contact information and contact info for all physicians to be copied on any reports, etc
~Medical history related to BC, in bullet-point form for ease of catching up on the big picture
~Current medications, medical devices (stent), surgeries, and allergies
~All pathology reports
~Recent blood work
~History of hospitalization for hypercalcemia in November
~Copy of advance medical directive
~ Actual scan disks with copies of all miscellaneous scans (I get two disks every time I have a scan: one to save in my own permanent file, since Sloan Kettering almost lost all of my disks once, and one to travel in the emergency kit
All of this is in a "leatherette" portfolio I bought at Walmart for less than $20. All documents are laminated in plastic.
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We all need one of these, Joyner. Very clever. Glad you'll be back on the boat soon. I'm hoping you don't keel over. Keep us updated on your trip, it was fun last year to hear about all your adventures.
It's finally June. It seems like May lasted forever. My MO appointment is June 12, hopefully my PET will be in June. I want results, good results. I want to stay on X for a long time, for that to happen I must have good results on my PET. I can be pretty demanding, as you can tell. I don't do well with waiting. Grrrr
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Brilliant!!
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Your'e amazing, Lynn! Thanks for sharing your brilliant organizational skills! Theresa
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Just started Xeloda last week after Doxil stopped working.
Glad to meet up here with some old friends that are on this same journey.
I started 3500 mg/day last Wednesday, so today is Day 6 of 14 on, 7 off. I am breaking out in a rash, that seems due to photosensitivity, but I’m not certain. Will call Oncologist and his PA today, but was hoping to not yet “make a scene”. It does appear to be growing worse even though I’ve been staying out of the sun.
It’s also on my feet (where sandal didn’t cover it on Saturday) but also above ny knees where I had shorts on 10 days ago (haven’t worn shorts since!)
Has anyone else had experience with this? I think it’s rare, but I really have no idea.
Hoping to stay on it to see that it works for me.
Thanks, girls!
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Miriam- I did get s rash with my first few cycles of Xeloda. Benadryl cream and pills helped some. I did have to keep out of the sun and always was covered in clothing to avoid sun exposure. My body adjusted after the first few cycles so most of the rash went away. If I was in the sun it would cone back. Keep an eye out. Talk with your team. See if they have any suggestions. I am hoping the rash settles down with less sun exposure and with time after your body adjusts.
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Thank you, Leftfootforward;
I needed some reassurance!
And I appreciate your good advice
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Thanls AllyBee! I hope that’s all mine is too
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I had the rash too, and it itched like crazy. Had it on 90% of my body. Still had it with 3000 mg, so I cut back to 2500 and it went away. You can do that and increase later if you think you could tolerate it.
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Yes, that is bad and I am sure they will give you a chemo break and then lower the amount.
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Hello, new friends! Well, I'll be ordering Xeloda tomorrow, and my first chemo day will be Friday. I have a few questions regarding preparation.
Regarding what to eat for breakfast (prior to taking pills) and dinner (prior to taking pills) the first day, and beyond—might someone be able to suggest foods that are low or devoid of folate? Should it be a high-calorie meal or a light meal. I'm hoping to use nutrition to keep the intensity of side effects on the lower side. I have to admit, I'm terrified of vomiting and nausea, and of diarrhea, too.
Also, I've just picked up my prescription for Zofran, which I think I take an hour prior to eating to hopefully prevent vomiting and nausea. Does anyone else take Zofran in this manner, does it work, and are there reactions from Zofran? I chose Zofran over Compozine. Additionally, if I react with horrible diarrhea, will taking immodium right away make me feel better and reduce the diarrhea?
Should I begin now using Aquafor on hands and feet before bedtime and Udder Cream during the day, or wait till symptoms appear?
Would cotton gloves purchased at the drug store be adequate to cover hands at night, as I see many of you wear the non-latex disposable gloves. And, would cotton socks be satisfactory on my feet, as I see many of you wear gel products.
I looked at the Sketchers "Go Walk" sandal that a lot of people recommended, for relief in walking from HF Syndrome, and would like to order a pair. They don't make the shoe in a narrow width—should I stay away from ordering "too loose" or " too snug"? My nurse practitioner said don't get blisters by wearing too snug of a shoe, but someone here once mentioned not to get shoes too loose, as they would rub and create blisters.
I've read about products to massage into fingernails and toenails to prevent infection and worse. Betadine and Tea Tree oil (which I think might be too strong for me), and are there any other good alternatives? Again, begin that proactively, or wait for symptoms?
We’re opening our pool Wednesday, and I’ve been waiting eagerly. However, I just read that someone got a really bad rash all over their skin, and they think it may be from exposure to the sun. What measures do you take regarding being out in the sun, pool gardening, etc
Any hints or tips and information would be so greatly appreciated. Thank you!
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I spoke too soon about not getting blisters. Today I have blisters on both feet. I think the shoes I wore Sunday rubbed in the same place on both feet. They are on the outside part of my feet not the bottom. So, which of my five creams do I use first? The UREA one that my MO said to use or O'Keefe? I see my MO tomorrow so I think I'll use the 40% UREA one. I'll have to confess to her that I didn't use it everyday to help prevent it, like she told me to. I did take the B6.
So, I've joined the HF club. Grrr
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Grannx2: don’t jump into HFS conclusions too fast. Several weeks ago, I had a blister one day, and I thought the sky was.falling and it was the beginning of HFS( after a walk with bad shoes). Several days later, the blister (on middle toe) went away, so the sky cleared!! Unless your hand and foot showing reddish, the blisters might be just caused by improper shoes. But do keep applying cream every day on feet and hands as often as you can.
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Hi KendraSue!
Like you, I researched the thread and stocked up on everything from multiple creams, new shoes, ice packs, etc. You may find that you don't need all of them, so try not to anticipate that you will get all of the possible side effects. I can say that for me Xeloda has been one of the easiest drugs I've been on since starting MBC treatment. I've been on it for six months.
My only side effect is my nails have thinned/broken, my cuticles have sort of disappeared and I'm more likely to get hangnails now around the fingers. I do not experience nausea, vomiting and have not experienced HF syndrome. I don't take Zofran. But I do put cream on my feet and hands periodically to keep them moisturized. I can walk with no problem. (I do like the Skechers for cushioning.) My blood counts are only slightly less than normal, but nothing like they were on Ibrance.
I eat a little or a lot before I take my pills and it doesn't seem to make any difference for me. I feel completely normal. I know others have struggled with their feet and we are all different in how we respond to each drug. The length of time on the drug and dosage all all factors. Some find it a fairly easy treatment though. I really hope that you have minimal side effects, but if you do experience issues, you know that the dosage can be reduced as needed. Best wishes!
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