All about Xeloda
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brain scan this morning. Hoping Xeloda is doing its thin
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Nicci, the longest I've been off Xeloda has been 14 days and by the end of that time my Hand/Foot syndrome had not gone away.
I have no idea how many weeks off Xeloda would be required for our skin to really heal.
I experience a one-week delay in my side effects with Xeloda. My skin feels as good as it can on the week I'm taking Xeloda and feels the worst on my week off. For instance I'm on my second day off Xeloda right now and my hands are cracked and bleeding. They're too painful to make a fist. All last week while I was on Xeloda my hands felt halfway decent. Still red, peeling and painful but not bloody. It's like the build up and the let down from Xeloda is delayed one week.
Kessala
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Left foot so hoping scans are good and that Xeloda is still working for you!!!!
Babs
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brain scan was clear. Thanks everyone. And thank you Xeloda for holding down the fort
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Great news! Leftfoot0
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Left,
That is great!
*susan*
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Leftfoot, wonderful news on your scan!
As of yesterday, I am on an unplanned Xeloda break. At routine MO visit, liver enzymes were off the charts, double normal limits, out of nowhere. The doctor said it might be caused by Xeloda. After a day of freaking out, wondering if I was suddenly, unexpectedly facing the end, we have determined it is likely due to a recent stomach flu I had a few days ago. My tumor markers came back in normal range, lower than last test. These have been reliable for me so I may even cancel the impromptu PET scan scheduled in a few days. Although I am relieved it is probably not progression, I also really hope it is not caused by the X. I don't want to take breaks if I can avoid it or be forced to abandon the X ship.
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Awesome news Leftfoot!! Hope you did something fun to celebrate...
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JFL- hope you feel better soon. And I really hope it's not the Xeloda. Take car
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patti- today is my oldest son's birthday. He's 14. So I am celebrating; Celebrating that I am here to see it.
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Mandi, I'm sorry that Madame X has quit working for you, but you have to be happy with the 44 months she gave you. I wonder if anyone has moved on to something different, and then came back to X, or something else? Whatever happens, I hope you find something to work.
Nicci, I've been off X for almost a month now. I still have dry cracked feet, dry skin, eyes still burn and water, drippy nose, bowl movements still loose, but trying to "form".
Kessala, I agree with things being delayed. The drug is still in our system on our week off, therefore we still have the SE's.
LFF, hip hip hooray! You go girl!
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Leftfoot. What great news!!! Happy dance time!!!
JFL. Hoping you can stay in X and that this is just a small blip in the road
Babs
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Good morning ladies! My cancer progressed on my last clinical trial and my onc is putting me on Xeloda as soon as my counts go up. Whoever came up with fhe Madame X nickname is brilliant! This thread has already been extremely helpful and I'm thankful for everyone posting.
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Harrysmom. Welcome to madam X. I hope it works as well for you as it has for me. Here's to reaching NED!!!!!
Bab
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left foot. How exciting ! Another year with mom for your son. 14 is a bIG year for teenagers in general but esp boys. What did y'all do to celebrate ? Is he back in school yet ? Mine go back next Monday.
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patty- not much as he had soccer practice that night. I made a breakfast, we went out to lunch. He opened his big present an x box 2. Then had practice. Night was capped with my homemade Oreo cake complete with ganache. He was happy., it was nice to celebrate being with family.
Up next- my youngest turns 6 on the 19th. She was 3 months old whenbjbwas initially diagnosed so her birthdays mean so much to me.
So greatful for every day I get to spend with my family.
Thanks for asking
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Welcome, Harrysmom! I hope X does right by you for a long, long time.
Left, I so want a piece of that cake! Looks amazingly indulgent. I am impressed you can make that. It looks professional.
Good news about my liver enzymes. They are still pretty high but have decreased significantly since Tuesday. MO said I can resume X tomorrow. Also, was able to cancel the PET and wait until the normal 3-month scan date arrives next month. I have aggressive cancer that can grow VERY quickly. I didn't want to take the PET while off meds. Might light up in ways it would not while on X.
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LFF. Great looking cake?
JFLso happy you can resume yourX
Babs
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jfl. Glad you are back on X. Great news on liver enzymes
Lff. Sounds like a good bday for DS. That cake looks delicious. I want a piece. What is ganache ?love the DD story. Thanks for sharing. You must have been exhausted withnew tx and a 3 month old. Wow. And now she's 6. Awesome. Hope you get another 60 years with them both
Hugs
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cake definitely in the cancer diet but boy was it good.
Ganache is basically chocolate and butter melted together. Again not on the cancer die
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chocolate and butter ??? And then what ??? How do you eat it ! Italian ?
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Are there any triple negatives on this board? My doctor is going to have me start Xeloda if my next scans warrant it. How effective has it been for you? I had a lung lobe removed in June, and the met tumor with it, but there was some cancer in the lymph nodes.
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Anyone experience low platelets (<50) from xeloda? Bev was at 49 last week and they have delayed her restart of treatment until it recovers. She's getting her blood tested again today, one week later.
Edit: Platelets up to 55 now. Awaiting the opinion from her Onc as to whether she is clear to continue.
2nd Edit: Onc says platelets still too low, must wait another week. Bummer.
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Hi Lynn,
I too had the peeling on my feet after my first cycle. I couldn't walk without being in a lot of pain. My oncologist lowered my dose, and they peeled a little a few times, but nothing like the first time. They told me to use "Udderly Smooth" cream or "Bag Balm" ointment. I used the Udderly Smooth during the day and Aquafor (an ointment) at night. I also put socks on immediately after putting the stuff on my feet. I wore them to bed and during the day (if it was summer), I wore them for a couple hours, till my feet absorbed the cream. I also take B6 (100 gm) daily, and it helped with the peeling.
Good Luck!
Lynne
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Hi Everyone!
Xeloda has stopped working for me after 2 years. I've started on Ibrance/Femara.
I wish you all good luck with this drug!
Lynne
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Sorry to hear that Lynne. I wish you success with the new treatment plan.
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sorry Lynn. May your new treatment treat you well. Best wishes
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Hi to the Xeloda gang, I have been away from the boards for awhile, so need to catch up a bit with what,s going on for everyone. I have had two years on X, and no progression until now. I took a six week break from X over the month of June and a bit of May, so that I could go on a walking trip with my husband and feel less fatigue. It was pretty amazing to gradually get back to how I felt before treatments began. The trip was a success, and I resumed X in July. Now I am having increased cutaneous mets on my scalp, and am waiting for another cycle of X to see if it whacks them back. If not, I will be on to another treatment. I knew there could be some consequences of stopping X, but discussed it with my onc. team and together decided it was worth a shot.
I super hope the X will work again, but am realistic about knowing it might not. I can manage this drug, but am not sure about new ones. Whaaa!!!! What a pain. My huge sympathies to those who have had to switch.
xo Mame
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Mame- please don't feel bad about taking a vacation from meds to live life. I did the same thing and was holding my breath the whole time.
I hope the next round of Xeloda will do its magic.
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Lynne. Sorry X stopped working for you. Two years on it was great. Hope your next txt is as successful
Mame. Hoping X resumes working for you again!
Babs
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