All about Xeloda
Comments
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I wasn't able to go to an important Graduation party last night because of my feet. Grrrr. I'm bummed about missing something because of a dumb SE. If I only knew for sure it's working, I wouldn't be so bummed. Effective TX is everything. This is the first event I've missed while on X. It wasn't only my feet, I was also feeling dizzy and soo tired. Maybe today will be a better day. I guess this is a wake up call, X has random bouts of SE that can slow me down for a few days. I cannot assume it's always going to be easy on me.
Joyner When do you start your voyage?💞
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I just got some great flip-flops by Roxy....very soft soles!
Just found my PET scan results on the Patient Portal, and all appears to be stable after 6 months. HOORAY!!
Grannax, we leave on Monday, July 8th on the boat to head north to Lake Champlain. We'll piddle around in the Chesapeake for a day or two and then on to Cape May and into the ocean for NYC and the Hudson River. Can't wait!! I'll send you a link to whatever journal and photos I do, as before. Thanks for checking!
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Yay for good news. Ill check out Roxy flip flops. I'll look forward to pics. Have fun.💞
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Good Morning,
Today is my 4th day on Xeloda. Awaiting side effects...stomach starting to get involved...hands and feet calm for now...
I must catch up on my reading so I can become smarter and wiser like you all here. Have been travelling and had no internet for 3 days. Good and bad to have no internet. Good to rest from so much information and (over)stimulation. Prefer to have it though, as I feel isolated when I cannot communicate at will.
Sending you All blue hydrangeas for great big beautful Tuesday.
Gumdoctor
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Gumdoctor I've always loved Hydrangeas, yours is gorgeously. My first week on X was hard with stomach issues, etc. But it went away and has not come back.
Joyner I ordered some Roxy flip flops. I think they are called Vista. They are black with colorful letters ROXY. I don't usually order shoes on line but these look like what I need. They have so many styles but many were very thin soles and others looked too thick. These looked just right. Hope they work, if not I guess I'll go to the grocery store in my house shoes. LOL💞
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Beautiful flowers! I am getting my landscaping done in a few weeks and I ordered 2 blue hydrangeas!
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I love the blue as well. Depending on your soil you might end up with beautiful pink or purple ones. My daughter did a science fair project about how Hyde’s Dias change color depending on the ph of the soil they are in. She managed to make them change color by doing things to the soil. It was a cool project, especially for s 3 rd grader.
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Glorious color, Gumdoctor! Wow!
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Grannax, I found mine by accident at a West Marine store in VA. Here's what these look like. Happy 4th, all!
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Liz is the gardener in our family but I'm 99% sure that if you use an acid fertilizer (I've heard Liz say this), it will make the hydrangea turn blue.
Grant.
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Joyner Those are cute I like the woven straps. I think the thickness of the soles are the same as mine, they have not arrived yet.
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grannax, I am so sorry you missed graduation. That really sucks.
I finished my first two weeks of Zeloda with the whole shopping list of se. I really preferred the Arimadex and Ibrance.
I thought, this is sooooo easy, how hard can the Xeloda be? It’s still just a pill!! Silly me!
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I love the hydrangeas! Here in Charleston they are typically blue because our soil is very acidic from the live oaks
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Good morning All.
Not surprisingly, my feet finally got the memo about HFS and have joined the party. Hands starting to feel different.
Interestingly, my lips are also involved...I have a lipstick allergy. After applying lipstick I am allergic to, they tingle and then swell. Same thing with X. I have looked like a Kardashian in the past...Hoping they do not swell that much...
Gumdoctor
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Gumdoctor, I am so sorry to hear that you’ve joined the HFS club. I just finished my first round of Xeloda on Sunday and today is the first day I have been able to walk comfortably since day 11. So, 10 days?I found cold water soaks gave me some relief from the pain. I did that while watching tv. I hope you feel better soon. Raine
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I got ha lucky break for the 4th. I wore real shoes for the first time in two weeks. I dressed up in all red, white and blue,even my Keds, and went to a cook out. It was a good day.
I wonder if I felt better because I'm in my off week? I know X keeps working during the off week but after having two days without X, my foot fire decreased dramatically. I'm on 2 weeks on at 3000 a day and one week off.
Only 7 more days till PET. The count down has begun.💞
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I’m so glad you got to enjoy the 4th, Granax! I know you must have scanxiety but we shall pray for good news !!! Have a beautiful day
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Hello Ladies
I am about to start zeloda for my HR/PR HER2 - Metastatic Breast Cancer I was wondering if anyone can give me any tips on lotions to lesson the Hand and Foot issues?
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Patti, I'll sent you a link fire a private message to a document I created for myself, including multiple comments from the Xeloda string.
Are you triple negative or ER/PR positive?
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Patti. I bought so many lotion but have not found then helpful yet. But, mine didn't start till the forth cycle. My feet got really red and cracked. It felt like they were on fire so I used an ice pack. Immediate relief. I also used cortisone cream to help with th inflammation/pain. I also take B6. For whatever reason the fire let up on my second day of my off week. I'm on 3000 a day for two weeks and one week off. Very thick, soft house shoes felt the best. And soft flip flops. They say keeping your feet from getting hot and sweaty helps.
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Hi RaineDrop and Grannax -
I had a tremendous 30 min cry on the telephone with my ONC nurse Fri. Substitute MO said I should skip last dose then do my week off. Incapacitated Friday. Improved this morning. When I have to walk, am walking carefully/painfully with thick rubbery flip flops. And slathering on the udder cream with thick socks when not walking.
It takes alot to get me to the point of crying...
ONC nurse said to expect a call on Monday with instructions of what the dose reduction will be. Start X again next Saturday.
So grateful you all are here to guide me and let me vent...
Gumdoctor
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Gum, what is your dosage schedule? My second opinion doctor at Sloan-Kettering in NYC put me on 7 Days on and 7 days off. There is a study that shows that that's just as effective as 14 on and 7 off. You may want to look into that.
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Joyner -
I am on the 7 on 7 off schedule. This was only week 1. This morning, my feet were a bit improved. I can actually hobble with the thick flip flops. Last dose was 730 am yesterday. Skipped 730 pm dose last night (as instructed).
Because they are improving, I am hopeful for a dose reduction...
Gumdoctor
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I was started at 3000 mg per day, 3 in the AM and 3 in the PM. When I reached grade 2 hand and foot, I was reduced to 2500 mg per day. 3 in the morning and 2 at night. For me, that has made things better. My hands have remained about the same, but my feet improved significantly. Good luck!
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I started at 3500, 14/7. I see my mo tomorrow and am hoping for a reduction in dose, either less or 7/7. I had most of the side effects and they were pretty bad.
I have trouble eating and the thought of cooking nauseates me, even on my week off. My hands and driving!!! I have taken to running the air conditioner at full blast to try to cool the steering wheel before I touch it. I will try some white cotton gloves.
I feel like such a whiny baby, but I am really freaked out about starmy next round.
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I'm on my second cycle, day 4 of 7, off week (7 days on, 7 days off).There have been no major side effects as yet, except quicksand-like fatigue. However, my eye has become an ocean of ongoing tears, so persistent and intense that I have difficulty seeing out of it. I'm calling to make an appointment today to see my ophthalmologist about it. And, I also have swelling in my lip like Gumdoctor, which my oncologist poo-pooed when I mentioned it. I'm applying Aquaphor every night on my feet and hands, and Udderly Smooth in the morning and throughout the day on my hands after they've been wet. When I underwent radiation during my first bc diagnosis in 2004, I applied both Aquaphor and Udderly Smooth before and after, and, although it was expected because my skin is so fair, I never had any kind of pain or skin reactions. My oncology radiation nurse asked for the names of these two creams so she could advise her other patients. And so far, these creams seem to be working at keeping h/f syndrome at bay. I'm enjoying the lovely photos here, and am sending a photo of beauty from my garden that I hope you enjoy.0 -
Kendrasue There is a mouthwash that my MO RX for me. You, too Joyner. Oh you're leaving today. Have fun, send pics.💞
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Does anyone know if X can cause a spike in Bilirubin levels? My wife just started X and after 2 weeks (her week off ,I noticed her eyes were slightly yellow) so she took a trip back to the office for blood work and they said her bili level went from 1.6 to 3.4 in 1 months time. I am cross posting from the Liver Mets thread.
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I know it can cause upward spike in all liver numbers. I haven't had all of mine spike only alk phos. You did say they took her off of Xeloda, right? Maybe that will help. Is her belly swollen? She may need to have some fluid drained off. Also a scan could show that she needs a stent placed if there is blockage. It's a simple endoscopic procedure.
If her belly is swollen or if she's uncomfortable/pain, take her to the ER They could tell you what's going on. They could drain if needed, do a scope if needed. It seems like I remember you said you're not getting much, or slow response from MO. You do not have to have MO permission to take her to the ER.
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Hello all,
I am trying to do my research for my mom. Dx with Stage IV breast cancer w mets to liver. After completing chemo in 2018 and a "clear" scan chemo surgery radiation she was put on hormone therapy pill and after 6 mos another scan showed the liver(again) and bone mets. She then started Ibrance and faslodex 3 mos later her tumor markers have went up and they now want to start her on Xeloda. I have read a few things online about your heart with this medication. Has anyone had any heart testing prior to the start of Xeloda?
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