All about Xeloda
Comments
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Lynne,
I am sorry to hear that MadameX has failed you. Good luck on Ibrance. Wasn't the drug for me, but I bet you get much time!
*susan*
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MameMe,
Wonderful to see you back on the boards! Sorry to hear about your progression. I've been on Xeloda for almost 2 years. My MO told me we could switch to AIs but I told her I wanted to stay on X for as long as possible. She said that was fine. When my HFS gets really bad I take an extra week off. Hope getting back on X works for you!
Hugs, Susan
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How is everyone's platelet counts on xeloda? Bev is experiencing low platelets and her treatment has been delayed twice now.
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I am at the start of my third cycle of Xeloda on a 7/7 schedule (so one cycle = one full month) and just had blood work done on Monday. My platelet count was 147 (normal range for a healthy person is 160-400). So a little on the lower side, but definitely not too far off normal.
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Timothy, I have have somewhat low WBC, RBC and ANC but my platelets are normal. How is your wife doing with the Differin? Is she finding that her HFS has improved?
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JFL, her feet have really improved, but its hard to sort out whether its due to the nightly application of Differin, or due to time off xeloda. I'm reluctant to call it a success, as that would be guessing. We have been going for hour long bike rides, but she doesn't like to walk much. Different kind of friction and pressure.
Bev's platelet count has been steadily falling since she started treatment with xeloda back in May. She started out around 140 or so, and its been falling steadily and went as low as 49 two weeks ago. I'm not sure where they consider the threshold for resuming treatment.
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Hello I was wondering if anyone lost their hair on Xeloda? I am on my second cycle and I feel like my hair is really thinning out. I have thin blonde hair anyway and I don't have much to spare. I have really bad days around day 4, 5, and 6 then go off on day 7. then I am off a week then start again. I feel so tired and nauseaded. I cant work those days at all. so far not much on hands and feet mostly fatiue and sick and now my hair. I have no idea if it will work or not. I forgot how awful chemo is. I have been on hormone therepy for so long I was spoiled. I have had cancer since 1995. went to my lungs in 2001 and now bones in 2013.
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Wanted to report my status on Madame X. I've been on for almost a year at a very low dose (2000 mg a day) and it's stabilized my spinal mets. Actually I'm not sure that anything is lighting up. I had a pet/ct at a new place and the report is so cryptic I could barely read it. The radiologist is measuring schlerotic lesions and I don't even know what that means. Anyway, the MO just says my disease is stable.
No HFS, no GI issues. 14/7 schedule. I'm happy. (Just wish I could read that report)
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krhoards,
Mine did thin, first on the Ibrance and then Xeloda. However, 3 weeks ago, it filled out, the curls came back, and it started to grow like crazy! I am baffled..... this was cycle 10 for me. Hope this gives you some hope.
*susan*
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ok I am having one of those I can't stand being on my feet weeks. What are your best ways to deal with it. Obviously I'm trying to stay off them. Just wanted to see if anyone had any ideas that I haven't thought of.
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Left, I don't have an answer but am feeling the same. I have had a lot more trouble with my hands until now. I am currently in so much pain on my feet. My hands are better than they have been in months and my feet are now terrible. I recently switched from O'Keefe's foot cream (for hands and feet) with urea (not stated how much) to a stronger 20% Excipial urea cream. It has substantially improved my hands. Hoping feet will follow suit in a few weeks. They are currently shedding all the dry, cracked skin due to new lotion and are raw. My hands went through the shedding/raw process a week or more ago and have been great since. I am on vacation and doing as much as I can but everything hurts. I hate this because the rest of my body feels great. Depressing. Also, I don't want to be a downer and spoil the vaca for my family.
Hope you find relief soon!
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Left and JFL I am using 0.05% clobetasol foam and 6% salicylic acid and my feet are MUCH improved. Hands not so much since I can't keep applying it during the day and I am constantly using my hands at work. Both are prescriptions that the term at MSKCC gave me. You should really try them!
Babs0 -
Thanks, babs, for the names of your prescriptions again. Like leftfoot and JFL, my feet are now terrible and are so red and painful. I've been on Xeloda for 1 year 3 months, and my feet have never been worse. I haven't found any lotion/cream that has helped these past few weeks. Otherwise, the rest of my body feels pretty well but not good when it just hurts to walk!
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Babs, my oncologist emailed your dermatologist to obtain more info on the combo you take. Unfortunately, he didn't respond. My MO was at MSKK for a long time. He is now head of the Mount Sinai CCC in Miami Beach. My MO is open to it but I don't think he would prescribe it without speaking to your dermatologist or another doctor who uses this combo first, especially since it is not commonly used. I also mentioned Differin to him. He hadn't heard of that being used yet either. May push more in the future or try to get up to NY for an appointment with your derm. With a baby, that is harder than it used to be to take a trip by myself
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JFL. Sorry my derm has been non responsive. I'm seeing him on Thursday so if you PM me your oncologist's name I'll ask him to answer and explain why
Babs
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That would be great, Babs! Will PM you. Thank you.
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My wife has added in salicylic acid for her feet at the suggestion of a dermatologist. Her feet look perfect, but she suffers from nerve pain. She is currently using differin at night and salicylic acid during the day. We've been doing a fair bit of bike riding as she isn't up to walking far.
After 4 weeks off xeloda because of her low platelet count, her platelets are now up to 88 and she has resumed treatment. It's amazing, but both of her tumor markers continued to fall between 1 week off xeloda and 4 weeks off. They fell 22% during that 3 week interval while off treatment. Much better results than we expected or feared. She is feeling super, and not producing much ascites fluid during weekly drainage.
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Great news Timothy. May she continue to feel better.
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I have just finished round 11A. My feet didn't heal during the week off. I admit, I have not slathered them with stuff consistently. I walk. I stand. I have a life to live. Tonight, as I walked up and down the stairs, I heard a squeak. Squeak? Damn, it was the sound of the bottom of my feet sticking to the hardwood floors. Need to be careful for the next few off day and hope that they rejuvenate themselves.
Markers are inching up. Next blood work in September will determine if I need to do another set of scans.
*susan*
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Thank you Timothy, leftfootforward and Babs!
Lynne
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Thanks, Susan!
Lynne
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My wife wears New Balance flip flops around the house on bare feet. They are very padded. She finds the padding very comfortable and thinks that without socks or walking on floors bare foot it keeps her feet protected. Socks for some reason bother her. She has a second pair for outdoors. Not sure what she is going to do once it snows.
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I found that ankle Uggs were very comfortable during the winter. Better than flip flops. Of course, you are not supposed to wear them in the snow, yada yada, forget that. I am about to purchase another pair for this winter. A small price to pay for my feet being happy.
*susan*
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Susan, just as a note, you can winterize your Uggs. They make a spray that you can use that coats them and protects them from the snow and rain...
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Becs, Yes they do, but the spray has cancer-causing agents! :-)
Two steps forward, one step back. I have taken my Uggs to our local dry cleaners, and they do a great job. Mostly, I don't care if my shoes are clean. After all, they are shoes! *susan*
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Went back to derm at MSKCC yesterday. While my feet are so much better my hands are not. So he prescribed 2% mupirocin on the skin breaks ( antibiotic) and then at night to put Desitin extra strength ( prescription) over it as a block so germs don't get through. Plus he wants me to wear cotton gloves at night. My left hand is worse than my right - that's my original bc side. They're concerned that I don't get cellulitis again. I'll let you all know how this works!
Bab
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Hello Ladies, haven't been on a while. I am actually in Germany for 12 days. I had to figure out did I want pain on the trip or fatigue? So I am taking my Xeloda while I am here. Missed a couple of tourist sites due to fatigue, but didn't need the 500 steps. I actually have the terrible side effects when I am on my week off. I am still on the 4,000 mg 2 weeks on and 1 week off since 11/15. For the last three months my CA 27/29 scores have been creeping up and last month jumped 21 points so something was cooking somewhere. I did my Pet/CT scans before my trip and found out I have 3 new spots on my cervical spine and T10 reactivated. My liver lesion, left arm lesion went down in size and my neck lymph node went down in intensity. The other 10 spots are still NED. How does that happen? So I want to have an ablation on my liver with radiation to my cervical spine, left arm and T10 to kill the little bastards. I have one more trip planned in a month, so going to stay on Xeloda until I get back, then will decide on new medication to try with MD. Babs, my insurance approved the foam - it was $465 before my $5.00 deductible. Was yours that high? Anyhow, I won't be finishing it so if anybody wants to try it, pm me and I will send it to you. Stay strong and positive! The next great drug may be around the corner and we need to get there! Thanks for all the helpful advice and just knowing those of you who have lived on with MBC against the odds! Will be moving to another thread in a bit! You are all true Warriors! Good Luck
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Mediclisa. I actually was told the foam would be $500+ Because I'm on Medicare. But if I were not on Medicare it would cost $10. So crazy and unfair!!!! Sorry that X is no longer working for you. How long were you on it?
Babs
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Babs, I was on Xeloda for almost 1 year. I was hoping to be on it as long as you! It is so weird that some lesions are NED yet three new ones popped up. Craziness I won't miss the side effects, however I'm so used to them and know when they are going to strike! Do you have to pay the $500 out of pocket? My Xeloda is $2850/three weeks. Luckily I only have to pay $5.00. I work full time as I need the insurance. Sucks! Let know if you could use the extra foam!
Take care and keep moving forward!
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Mediclisa. I started X on 1/1/16. I hope I get at least a year with it working. I get my X from MSKCC where I don't pay anything for it. With the foam I asked a dr friend to send a RX of it in my young friends name so it only cost me $10 instead of the $500+. I just couldn't afford to pay so much!!!
Wishing u luck on your new treatment!!
Babs
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