Xeloda and TNBC
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Day 9 today and as the blisters just starting to form on the bottoms of my feet didn't get any better yesterday, I called my onco nurse. Dr wants me to take a three day break. I'm a bit frustrated as otherwise I feel perfectly alright. Have any of you had to take breaks like this? Do I just skip them or does my schedule get pushed back three days? I think the cause was my continued cardio work outs, which will now stop. Guess I'll try yoga and weights for a while instead.
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Hi!
Can I ask how you are doing? I start on Xeloda on June 19th. I'm really nervous about taking it. I had a brain aneurysm in 2013 and the chemo drugs really mess with my body. I took AC and alright except my left arm got tremors. I had a stroke when I had the aneurysm and chemo drugs mess with that. I had a reaction to the Taxol I only got 3 rounds out of 12. I just finished radiation and I had the full amount plus they did 5 days of just the scare area as well as the underarm where they took the nodes. Theytook 21 nodes and 2 had microscopic cancer cells. The breast had no tumors it was all clear.
Thanks for your insight!
Hugs and Prayers,
N
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As of June 8th, my feet were so much better, but I still had a lingering blister. Turns out I have some pealing on my index finger of my dominant hand but it doesnt hurt. So onco says stay off until Sunday, then resume at full dose. Essentially my schedule just got pushed back a week. Nurse said they want me to be able to continue to exercise including cardio, so if HFS comes back again, then they'll consider lowering dosage. Otherwise, I'm doing great - a little fatigue, a day or so with D and a day or so the other direction. I was anxious when I started but this is a drug that seems "doable" and also glad it's only until Sept.
I'd love to hear how others are doing, too!
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I started back 6/11 at full dose of 8 pills/day but by 6/14, I was back to painful walking and burning feet. Dr has taken me off again, and as I had a trip planned from 6/17 to 6/21, I won't start up again for another week. Thankfully when I do start back up, they want me on 3 pills x 2/day or 3,000 mg. Hopefully that will allow me to continue taking the meds and to walk. 😊 Otherwise, I still feel good - a smidge of fatigue and some not quite D.
Hope you all are hanging in there and doing well!
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So sorry, SuprSurvivr, that you are going through the hand/foot syndrome and off and on the Xeloda. I understand that changing the cycle to one week on and one week off or lowering the dose usually helps a lot. Hopefully this will for you! Meanwhile it is confirmed that I will start Xeloda on Tuesday. I had to order my udder cream with 10% urea and it will be here tomorrow so I will start using it early. I'm following your tips! My doctor was quite impressed that I seemed to know some of the best tips for preventing problems with Xeloda! Thanks to you and this chat room!
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Great! Hopefully being prepared will help lessen any anxiety and make the path ahead more smooth. Be sure to check back in! ✨🙏🏻✨.
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Hello all, first time to post here. I've been on xeloda for 2 1/2 months per my onco's recommendation. So far, so good. The goal is 6 months and then my onco wants me to take place in the immunotherapy clinical trial. Does anyone have any experience with this?
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Hi, abwatford! Welcome to this page. I am relatively new here, too - I did some lurking and reading and then posting in preparation for my taking Xeloda. I started today! I've had one dose and so far, so good! (hehe) I, too, have 6 months to do. My doctor did mention an immunotherapy trial but I know nothing about it. There is one out of John Hopkins in Baltimore, MD.
Blessings and peace to all! This page has already helped me so much! I felt so prepared for this round of chemo.
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First cycle, 2nd week of Xeloda. The nausea hit the end of the first week but Zofran is controlling that. Sunday I started to get tired and I just feel so different. Yes, manageable but I was hoping not to get any side effects right away. I should have figured I'd be nauseous because that's just me - most antibiotics, so far all chemos, stress, and more always make me nauseous. Oh, well, here we go again...
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Warrior206 - try taking a Prilosec first thing in the morning before your breakfast/dosage. I was nauseaous like you too and it did the trick!! I stopped two days into my week off, then started again with cycle two. Now that I'm down to 3,000/day, I'm not as nauseaous and have stopped the Prilosec. I'm going into week two of cycle three. So much better on lower dose!! No HFS, not as much fatigue, etc. Hope you feel better soon. Happy 4th of July, everyone! 💥
Ps - it also helps to keep a little good in your stomach, so small carby snacks helps with the nausea.
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Thanks, SuprSurvivr! I had extreme nausea with my other 2 rounds of chemo and this isn't as bad. I do take Zantec150 and have been looking for the info that says do not take it within 2 hours either way of chemo. Maybe I dreamed it as all my chemo papers are in one section of my notebook and I can't find it. I've been taking the Zantec a few hours after the Xeloda. I am soooo tired, though, but I need to remember it's still nothing like the other chemos! I can do things; I just tire out more easily and need naps. Before I was pretty much a couch potato.
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We finally got the call with the results of my wife's latest PET scan. She was ER+/PR+ Her2- then it changed to triple negative with numerous mets to her spine. My wife's been on Xeloda and started out 14 days on 7 off 8 pills per day. Now she's on 7 days on 7 off with 6 pills per day. Also with Zometa bone strengthener.
Finally after several months of this her Oncologists nurse called to relay a message. The best two words ever spoken by an Oncologist to his patient, "It's working!"
Appointment Friday to fill in the details.
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That is wonderful news, Mike3121! I am so happy for you and your wife and, I must admit, it gives me the extra strength to continue with this chemo!
Blessings to both of you!
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I finished the first set of 2 weeks on and 1 week off. I'm doing okay I am really fatigued and my lips are really dry my mouth is itchy. I have been doing pretty well with my feet and hands. I notice sometimes they get red and my feet hurt if I stand for awhile.
I have a question I read that the 7/7 is better. Any thoughts on that also that we should be taking B vitamins but I don't know how much of the B I should take.
I have had the red devil 3 treatments and I was due to have Taxol but I only got thru 3 before I ended up in the hospital so they waited a bit and I had a radical mastectomy on the right with 21 nodes taken on right side I also had my left breast removed. Two of the nodes showed microscope cancer no tumors or nothing in the breast tissue. With the 2 showing cancer and having TN next step rad/Xeloda. Took a break and had radiation 30 treatments and then took 7 days off and now on Xeloda till December.
Hugs and prayers,
Ni
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NKS- I just finished my first cycle of Xeloda, too. I was to start on my second cycle yesterday but the doctor postponed it a week. I've had the nausea, tiredness, irritated mouth, and sore feet but I thought it was all manageable until I got diarrhea like I have never had before. I am presently being tested for e-coli but since it seems to have subsided I'm sure the results will be negative and the culprit is the Xeloda.
I have heard of doctors switching people to one week on and one week off when the side effects were too hard to manage. Or sometimes they lower the dose.
My doctor said nothing about B vitamins but I'm already on a B complex for the neuropathy. I take so much stuff it's unbelievable but a lot are supplements. Anything to help counteract this damn poison I'm also putting into my body.
Blessings to you and I hope your second cycle goes as well as the first.
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Warrior 2016
Thank you for reporting back, this is in my future, but I don't know when or how long. I hope the diarrhea does not come back. My MO always says that Xeloda doesn't have too bad of side effects, but he of course has never tried it.
Gentle Hugs to you.
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I hope the side effects start to subside for you. Most of mine seem to be not as severe as yours. Have they told me that if things get worse to call them and they would lower the dose. I take 3 pills in the morning and two at night that's total dose of 2,500. I met with my Oncologist today and said he felt good about how I was doing so I go back in 4 weeks unless I call with issues. I found the crystallized ginger helps with the nausea. I hope the diarrhea gets better!
Hugs & Prayers for all
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Hi all!
I had a lumpectomy and it was then that the 1cm TN tumor was found, so doing chemo prior to surgery was obviously not possible! I'm starting AC and T 7/24.
Because my other tumor was ER+ the MO has talked about tamoxifen, but nothing about Xeloda.
I guess I could push for it, because I don't think there is a way to tell if my cancer will have a complete response to chemo since I've already had surgery.
I just want to make sure I use every weapon in the arsenal
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VL22- Tamoxifen is hormonal therapy. Xeloda is chemotherapy and you won't hear about it till down the road if you need it. After chemo they will most likely do a breast MRI to see if you have had a complete pathological response. You still have your breast for the doctors to monitor. Hopefully they will find no cancer cells. (My tumor disappeared during the first 2 round of chemo but I still had cancer cells according to the breast MRI - within 10 days I had a new 2 cm tumor.) There are other chemos you can do, too. You've got a ways to go before you get prescribed Xeloda.
Blessings and best wishes for you during your round of chemo.
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On a post earlier on this page I said something about not taking any antacid medication before Xeloda. I finally found it and you should not take anything like Prilosec or Zantec within 2 hours either way of taking Xeloda. I'm guessing it intereferes with the effectivemness of the drug, how it's assimilated, or somethng like that.
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Hi, all, checking in. Sorry to hear about those SE, Warrior2016! The big D is a tough one! My 3rd round at the reduced dosage of 6 pills vs 8 pills was uneventful with minor fatigue and HFS. I'm half way thru round 4, and like that I'm on the downward countdown. My feet have been peeling, but it doesn't hurt. I have some minor nausea after the breakfast dose but I have some almonds and it goes away. Some fatigue as well, but I'm back to work full time and I'm traveling a lot, so some of the fatigue goes to that. I think my worse days are 4 and 5 better things settle into a routine. Ihope you all have successful treatments. God bless! ✨
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hi all, I just finished yesterday my 6th and last Xeloda cycle. Side effects became worse starting from cycle 4, nausea, fatigue, feet peeling. I asked my MO to continue xeloda for 8 cycles but he doesn't agree he wants me to have a pet scan firstin 2 weeks. I hope it will be clear.
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Congrats on finishing up your 6 cycles of X, Momy4ever! I'll pray that your PET gives you good results! I just finished cycle 4, and my feet are back to feeling hot, tingly, tho peeling has subsidied. I used some steroid cream last night, but the feet discomfort has woke me up the last couple nights. I hope I can heal up in these next few days off before round 5. But, I think Momy4ever is right on the accumulation of the drug in our systems as the cycles progres. Only 28 more days of taking it tho! Hope they go by fast. Take care, all you X ladies! 🙏🏻✨
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Hoping the PET scans come out all clear Mom forever! Like you I don't want to stop my treatments. I was so hopeful since my 1st cycle went well overall.
I have now finished 2 cycles and having issues. I can learn to deal with being tired. t's the digestive issues that have had made me stop. They want to test for CDIF but if that was the case my whole family would be having issues by now. After that they said we talk about lowering the dose or stopping. I'm not wanting to stop but they say sometimes the body does not metabolize.
Looking for any advice or information anyone has head about the body not absorbing Xeloda.
Hugs and prayers to all!
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thanks ladies, will inform you as soon as I have the results, I will have the pet scan on the 6th of august.. I'm so scared but hopeful.
NKS, I hope your digestive problems will be solved soon without the need to stop treatment.
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NKS,
I don't know why you think your family would have c-diff if you have it, because that's not necessarily true. I had a case of antibiotic caused c-diff a couple of years ago and no one else in my family ever had it. As long as you practice good hygiene it probably wouldn't spread. And if it is c-diff, the sooner you get it treated the better. A course or two of Vancomycin and you're good to go!
Trish
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I was tested for C-diff few weeks ago. I went into the oncologist's office on day #2 of diarrhea and they knew it because I had been in contact with them the day before. The next thing I knew I was told I needed the C-diff test and that when I left they were going to sterilize the exam room because it is so easily spread. I didn't have it, but they scared the hell out of me!
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You're right, it is easily spread to people who come in contact with your bodily fluids. That includes doctors, nurses, nursing homes, day care workers. But in a family situation, it doesn't spread as easily because most of us, especially us cancer patients, practice good hygiene. Plus, most of our family members are not immune compromised. That makes a huge difference in it's likelihood of spreading. I had c-diff for about ten months, and none of my family got it. I was, however, advised to avoid contact with my Fil, as he was undergoing chemo for prostate cancer at that time.
Trish
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Hi, all. I'm just dropping by to post a note for those following SE progression. I totally read this site before I started to see how others' SE went, so I want to do that for others. My burning, peeling feet at the end of cycle 4 (1,5002/day) cleared up after two days on theoff week. I'm religious about lotioning them every night. I also soak most days in cold Epsom water. I find that enclosed shoes/socks during the day make things worse (hot). I have some fatigue but getting off the couch to do weights, stretches, yoga helps a lot. I drink tons of water, eat a banana every day, and take Vit D, B6, B12, and biotin. Good luck everyone. May God give us peace, patience, persistence, and healing.
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Thanks for the info on SE's, suprsurvivor. I'll be starting Xeloda in the next week or two, and was wondering what to expect.
I see you're doing 6000 mg a day. Is that an unusually high dose? Most of the times I see women who are taking 4000 mg to 4500 mg daily. My MO is starting me at 3600 mg per day, and working up to 4500mg if I can tolerate it.
Trish
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