All about Xeloda
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Husband11 - thank you for the details, it is always encouraging to understand the process of others and details on protocol and results.
Scwilly - I feel the same. I keep thinking I will take it tonight then think, what if I have a reaction like I did w the allergy to whatever that was an allergy to. So I am waiting for a day and making sure I will be by an ambulance center or hospital and not out here in the middle of nowhere.
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Hi Everyone
I'm on my second day of the X so I thought I'd come join the party. I had 0 success with Anastrozole (10/16-12/16) and a short run with Ibrance /Faslodex (1/17 - 8/17). I had one stable scan after moving to the Ibrance combo (extensive bone mets) but my August scan showed bone progression, something funny going on in my left lung, and some enlarged lymph nodes in my armpit. I'm a big girl so my dose is big - 5 in the morning, 5 at night for a daily dose of 5000, 7 on and 7 off.
I am concerned about the hfs. I'm a barefoot person, wearing shoes only when I have to. Because I live in Florida, shoes means flip flops most of the time. Do I socks and lotion now for prevention or is that something I do to treat it after I start having issues?
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Dianarose - here is a link from a lab resource, there are lists. It may help. https://labtestsonline.org/understanding/analytes/ldh/tab/test/
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Hi Bonniemen,
I love being barefoot too. I think if you are doing any walking of any length shoes and socks are important. Start creams right away. It really will help.
Take good care
Mary
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Hi Sarah, I felt the same on Sunday last week. This time has been better because I know the ropes a bit more. Just one more week for my feet to hold up. They were already terrible this time the first cycle and are in pretty good shape now- a little sore but not bad.
Mary
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Husband, very interesting about the ascites! What did the onc think about it? I never would have considered it was the dying cells but it makes perfect sense. I would have been like oh God this is it! Lol!!
Also interesting about the med being trapped against the feet by calluses. I am prepared with urea cream and being almost obsessive about it. I haven't even started X yet but it wil be here any day. That cream really does make the feet soft! Also using it to soften my big thick toenails, which is working well.
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BonnieMen, I don't worry about wearing socks during the day. But if I'm having any HFS, in addition to slathering cream on my feet, I will put on a pair of socks (just the little socks you wear in tennis shoes) over the cream at night, to keep it there. I also live in a hot area (near Palm Springs), and we have brick floors in much of our home. What I've found is that any shoes with harder innersoles are the worst (like most flip flops, although there are exceptions), and that a good cushy innersole makes all the difference in the world in both comfort and cutting down on impact to your feet. Look for shoes with foam type innersoles. Many women swear by Skechers, and they have both sport and slip on styles. I also picked up a pair of cushy slippers, because our brick floors kill my feet when HFS flares its ugly head.
My TMs actually went up with my first round of Xeloda, but not nearly as significantly as they had been rising each of the previous few months. Then they took a whopping nosedive -- from a high of almost 800 (CA27-29), down to under 300 over a few months. So don't let a rise the first month throw you. It happens.
And I wholeheartedly agree with Husband re. many women being on unnecessarily high doses. If your HFS or other SEs are affecting your QOL, talk to your onc about lowering your dose. Here's one study re. dosing. There are quite a few more out there that come to similar conclusions about the efficacy of lower doses. Of course, your onc knows you best, but don't hesitate to question him or her, rather than suffer. If they don't specialize in mbc, they may not be aware of these studies. https://academic.oup.com/annonc/article/16/8/1289/...
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I'm almost at the end of my 2nd cycle of Xeloda. What a DIFFERENCE this dose reduction has made!!! Not a single episode of diarrhea (compared to 8x a day at the crazy high dose), my feet aren't even sore. I hope it's actually working! I do know that my plueral effusion is gone. Before I could hear a gurgle in my left lung when I laid down. No more. Wish I knew what the bad lymph nodes were doing, hoping they've shrunk. I should be due for a scan soon.
Ladies, don't let them throw you on a super high dose to start. It's bad news to get severe toxicity from Xeloda, and it seems fairly common at those high doses. After my hospitalization I was so ready to bail on Xeloda, I called them death pills and never wanted to see them again. I'm so glad I gave it another chance at the lower dose.
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Quick question for all.....My MO may start me on Xeloda. Have any of you had decrease in bone pain on it? That actually is my main priority right now. The radiation I had 2 months ago has not given me any relief.
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MInxie, thats a woo hoo! Bonniemen, welcome to the party! If your flipflops are cushy, you're OK.
I was reading an article about diabetic foot ulcers (for work -- I'm not diabetic). Seems to be it has great application to us as Xeloda users. See below:
It's not exactly the same but the article recommends lotioning feet to keep them soft.
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Hi all, I started taking Xeloda last week on Wednesday and ended up in the ER Friday afternoon from chest pains. Has anyone else experienced that? I'm really iffy on taking the medication now. I know it's supposed to help with recurrence but as I'm reading more about it I'm on the fence. I really don't want to do anymore damage to my body. Anyone else stop taking it and been fine?
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Gwen - what dose were you told to take? Your weight / size? Your health condition prior? Getting enough sleep? Drinking enough fluids? All this will give a clue to what hit you.
Me, I had a hard time with the dose of 2000 mg AM and 2000 PM. Always felt like a truck ran me down. I have to take a dose and then sleep within the hour - it runs the course within a few hours after each dose but builds.
If you have recurrence, then something is needed to get that backed down. What were you on prior?
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I ordered from the CVS Specialty pharm my next cycle. The heat is high lately, over 90 most days. They realized I needed to begin right off (3 weeks hold after prednisone allergy hit before my cycle was to start last week). The package came UPS overnight from IL to IN. In a cooler with ice bags / dry ice or such.
Starting my next cycle this afternoon and hoping the swelling at my supraclavical where two lymph node masses were in Spring will go back down, it has been increasing in last two months. Even on Xeloda.
Brain and body PET CT Oct. 2. Onc Oct 3.
I am going to try 4 and 4. And when it gets tough on me then 3 and 4. Hoping to get in 10 days again. I take the higher dose because I am a very large woman. BUT my body is also hypersensitive to drugs.
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While I do wear cushy shoes and socks to help prevent friction and pressure, I find my feet can feel burny and get red in shoes, so I take the shoes off if I will be sitting for a while. I do a cold rinse and lotion every night. I have not altered my walking or dancing.
Deanna, thank you so much for the link to the article about dosing. It makes me feel that I needn't be afraid when my dose gets reduced from 2500 to 2000, which I expect will happen eventually. My onc said hfs is cumulative, and that I will eventually need a dose reduction, but I'm not there yet. So why did my onc start me at 2500? Reading table 3 in that paper, I see that while the average time to progression was similar for 2500 and 2000, 2.8 and 4.6 months, the range for median time to progression for 2500 was bigger: .7-19 months for 2500 and 1.4-9.4 months for 2000. Of course this is a retrospective study, and the data in table 3 is from just 105 patients. But interesting food for thought. The conclusion of the paper is "This retrospective analysis supports a starting dose of 2000 mg/m2/day because of its superior therapeutic index; however, patients may still have toxic effects and individualization of dosing is necessary. A phase III, multicenter, randomized study to establish the safety and efficacy of different doses of capecitabine is urgently needed."
Yes, Photogirl, it looks like we started X about the same time; glad it got you to normal TM, too! I like to think of you working with all the plants. I love plants and gardens, though I don't have the resources to do much about it right now.
Minxie, that's so awful that the high X dose landed you in the hospital. Will your intestines heal? Glad you decided to give staying on X a try. Sounds like the lower dose is a very different experience, thank goodness. Scwilly, you too. I'm glad your onc took your SEs seriously.
Kaayborg, all I can contribute to answering your question is that my X flare happened the first week on it. It was two or three days of a very big liver ache, then small aches that gradually stopped. Given the character of the cancer you are dealing with -- its tendency to take big leaps fast -- I would really ask to start doing monthly tumor markers to see if they will be helpful in your case. I don't like to hear, "My onc doesn't use tumor markers. Unreliable for many..." Well, what if you are one for whom they are reliable? The more info you can get, the better.
HLB, I like your slip when you typed, "I Ned to order some socks."
Bluebird, please tell me what you meant by "But last Oct the TMs were in normal range and cancer was having a party."
Hello and welcome BonnieMen.
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Blue- thanks for posting the article. So many things affect the LDH. Will have blood work again on Friday. Hopefully all is good.
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Sending hugs and good wishes, Dianarose. You deserve a break.
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LindaLou ~ Yes! once it "kicks" in, The Xeloda will start working on easing your pain. I have bone mets just about everywhere. My hips have always caused me the most pain. I had rads 3 times (?) without any relief. Now I am maxed out for radiation in those two places. For 4 years the pain was sooo bad. Pain meds were no help at all. Last December it go to the point where I could only take a few steps before getting overwhelming, crushing pain in both hips - it felt like I was trapped in a giant nutcracker!
At the beginning of cycle 5, I started noticing pain in one of my ribs feeling like it was worse. I concentrated on that pain, trying to sort out exactly where it was coming from and what else was feeling bad. It was at that point I realized my hips did not hurt. They didn't even have a twinge of an ache! The other pains had been there all along - the pain in my hips had been worse, so I barely had payed attention to the other sore spots.
Xeloda is a true miracle drug. I'm midway through cycle 6 now. Hoping that we all get wonderful, permanent results.
Yay Shetlandpony! So happy for you! You and the other ladies who have had such good results give the rest of us such a positive boost. And yes, shoes and socks are ucky! I live in Skechers and rarely wear socks. Sam's Club and Costco sell them for under $30. I bought two pairs with the thick soles and memory foam liner, love 'em!
Husband11 - Fascinating info about the feet .
BlueBird - Do you think your rash could have been triggered by one of the dyes used in your meds? I am horrifically allergic to Red dyes. I had a very bad reaction from a medicine that had red ferric oxide. Benadryl only made it worse because it has red dye in it too! My doc had me take the same antihistamines you are taking , I also took dye free Benadryl and the hives went away. I've never had a bad reaction to the IV dyes used for scans, but I do take the dye free Benadryl beforehand just in case. I was in a panic when my generic Xeloda was red. The dye used is a synthetic version of the ferric oxide. So far, no rash, phew!
About the high cost of Xeloda if not covered by insurance... My cancer clinic has their own specialty pharmacy and is able to get very low prices for their meds. I pay $16 a month for my Xeloda. Another option is to call your insurance company and ask for compassionate consideration. I was able do so for a non formulary med that was too expensive to pay for out of pocket. My PCP filled out some papers explaining why that particular RX was a necessity. The request was approved and now I only have to pay a co-pay of $3.
Best wishes for Xeloda's super powers to heal us all
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News from my MO office: TMs are down down down. He says whatever I'm doing, keep doing it. My weight is up up up. Ugh. What are you guys doing for exercise? I can't use my feet too much or I get blisters. Swimming??
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I was told by 2 nurses to start lotion when you start medicine. And to try to keep shoes on. Not a very good shoe person but am trying to use slippers when walking around house. Started xeloda on Sunday. Seem tired more. 5 pills 500mg2 x a day
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Hi everyone
I was just wondering whether you continue to use moisturiser on the 7 days off. I have been using sorbelene while taking the xeloda tablets but stopped. I can buy udderly smooth online, but as far as I can tell it's not sold here. (Australia) Is this what is best to use? Any advice is appreciated 😊
Pajim so pleased for you about your TMs. 😊 I also would be interested in what exercise everyone is doing
Thanks
Jennie
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I have an itchy, blistering rash on one foot. Mostly on the top. Doesn't hurt though. I also have it on the same leg under the naphostomy bag. Not sure what it is. Ugh !
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Shepkitty - it is possible. Except the prednisone was a white pill. I know I am allergic to dextromethorphan in Musinex / Tussin products. And decongestants cannot be taken, bad bad deal there.
Shetlandpony - October 2016 I had labs and a PET CT. The cancer was everywhere, closing my bronchial airway on right, in all my types of lymph nodes throughout chest and shoulder area. The PET CT showed that BUT the labs were perfect. My TMs were in mid-normal range too. Only clue was a slowly rising RDW over the course of March, April, July, October. And of course, I was a very sick woman in wheelchair. The staff at cancer center really let me down when I called for earlier scans, not getting the RIGHT message to my oncologist who freaked when he saw the PET CT, demanded a nurse navigator be hired and had staff meetings special for the problem of namely me not being taken seriously or something. They will never admit what happened. Anyway, the TMs did not go up to high range until February. That was after Ibrance / Femara had worked a few months and VERY WELL then stopped. And the cancer spread like fire once they stopped. So now when the new oncologists are celebrating that my TMs are falling and in normal range I remind them of my past. They get serious real quick. Another clue for the cancer for me seems to be a high RNP, but that remains to be proven.
That said, Pajim - glad to hear your markers are down down down. For most people, that is a good sign and can be trusted. I am happy for you.
Started Xeloda last night, 3 pills. Today 3 and tonight 4. Doing all right, expected to feel rough but it is the beginning.
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Bluebird-DE my dose was 7 total 4 in the AM and 3 PM. My weight has been steady at 150/153. Great health prior and I drink plenty of water with lemon throughout the day. I've been advised to stop taking the pill for now and still waiting to see what else my oncologist thinks we should.
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You had chest pains and your heart was fine at the ER? Gwendolen? I hope it was.
When I started Xeloda my oncologist wanted me to slowly increase the dose, watching for allergic reaction and toxicity. He had me do 2 pills 2x a day for 3 days, then 2 and 3 which was the 2x day for 3 days,, then 3 and 3 for the 2x day for 3 days. Ending of course at the 4 and 4. I wish all oncs would start slowly to get us where they want us to be.
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scan day tomorrow. Brain MRI Monday. You would think after 5 years I'd be used to this.
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I forget who mentioned that their MO doesn’t test TM. While I agree it’s silly not to, since it’s just blood work. My TM have always been totally normally. VERY weird....
I just finished 14th day of my first cycle. 3000 a Day. I did ok, a little queasiness but because of lung Mets I’ve been really taking it easy so maybe I wouldn’t notice feeling more tired etc.
My hands and feet just started to hurt last night, just when I thought I was getting away with no SE! Good advice to baby your feet last couple days of cycle!! I have been doing creams religiously (I also hate socks and shoes) so no blistering. I have been trying to be as preventative as possible, although I’m already going crazy without cardio due to lungs... I must be able to walk or I’ll lose my mind!
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leftfootforward, there's always anxiety. Always. Hang in there!
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Suslev - my onc I did have when started Xeloda told me to use the preventative from beginning and I have. i have used a healing salve called Ojibwa Tea Salve. And some others that I cover w socks since I cannot stand the smell of them though they probably small very good to most.
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Hi folks!
been on X for three days now. i havent noticed anything different. Just so tired from the disease spread and recent operation. Actually, six weeks ago they put a titanium rod in my thigh that got chewed up from CA. I knew it was cancer ages ago but didnt show up on scans til it chewed almost all the way through.... though TMs were steadiky rising.
left foot i have been managing this disease for eight years and i dont know how anyone gets through mist parts of it without anxiety ! its all new to us and so much of it is hit or miss. Lots of it seems to be putting out fires and enjoying the time in between!
hope all remain as well as can be expected! V
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I have one more day of my first cycle. On riday my tumor marker was up 14 points and LDH is high again. MO is having me come back Monday for labs. She said I might have to go back on A/C. When I got off the phone I had a total meltdown. It just doesn't make sense when all my other labs were good and I feel ok. I think I have another kidney infection so started back on antibiotics. With the naphostomy tubes and bags I don't get any symptoms until it's bad and has a bad odor. I'm praying that it's the cause
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