All about Xeloda
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Thank you, Friends, for the congrats. It's so good to be able to share here.
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Shetland, I'm my 8th round of Xeloda, blood work completely normal. TM finally in normal range too. Only thing low is red count and platelets but I can deal with that. I think we are both on the same page with this med😅😅😅
Keep going and enjoy the peace of mind while it lasts!!!
Anita
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photogirl- that's great !!
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Hello Ladies! I will be starting xeloda soon (generic) so I've been reading and saving lots of info from this thread. Thanks for all the helpful info. I am prepared with some urea cream, both 40 percent and 10 percent. There is a Palmers body Butter that has urea in it too. Hopefully the 40 will not be too strong because after I ordered it I read that Dr's use it to debride toenails!
What is the avg cost you guys are paying for ☓? My copay is $200 and there's no copay card for the generic. I know there's assistance programs but I hate to waste the time because I probably make to much $ to qualify.
I'm a little nervous because I work FT and I cannot afford to have periods of time that I can't walk due to the foot thing. I really hope I can avoid it. I am starting with 3000mg 14 on 7 off. I weigh 126 lbs. Does that sound right? I would rather not be slammed with too much and reduce. I would like to go the opposite way but I know from experience my onc is not to flexible about me "treating myself" lol.
I hope everyone is feeling okay. Heidi
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HLB - I just started and am doing the 3000 also. I weigh between 118-120, varies. So far I have a ton of nasal congestion and runny nose. Taking Claritin to see if it might help. I also went to Marshals and bought some super soft socks
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I've just finished my first round, at 5000. I had quite sore feet and hands, getting a couple of blisters on my feet. Also nausea and diarrhea and stomach cramps. These lasted for about 4-5 day after I have finished my last dose. I also got a couple of mouth ulcers and felt v tired.
I took Zofran for the nausea, which helped with the diarrhea - but then I that caused its own problems (TMI to give you details!) I moisturised my feet and hands and treated blisters etc., and also didn't walk about if I could help it as it was too painful.
To be honest it was horrible, wasn't sustainable at this dose and doc agreed. So I'm down to 4000 mg, and an extra few days to help me recover. My MO has said I should take probiotics as a supplement and recommended 'Udder Cream' - which I should use as often as possible even if I don't have symptoms to pre-empt issues. She said I should stop X and get in touch with her if I get blisters again (I think I can avoid that as it was because we walked to a restaurant in comfy shoes but with a small heel - If I walk again it wil be in good trainers) We talked about the DPD enzyme - and she feels I would have had a more severe reaction (and not just bad) so at the moment s not concerned.
BTW - my liver markers were up and I saw these just before I saw my doc, so was worried. But she said these were because I had reacted to the drug, and she wasn't worried. In fact, she said she knew before she saw me by looking at my bloods that I had had a hard time.
HLB - I really hope you don't get as strong symptoms as me as I definitely could not work through this. I don't think this is everyones reaction. Doses are based on surface area. and I am heavier than you so thats why I was on 5000. See Dose and Body surface Area
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HLB, my [generic] X is covered. $200 seems like a lot for the generic version but I admit that I don't know what X costs.
I've discovered that you just have to 'baby' your feet. On the last few days of the cycle I make sure to wear cushy socks and sneakers (to heck what they might think in the office). Or if I'm going on a trip and going to walk a lot, always the same. If I'm mostly going to sit at my desk all day I can wear any shoes I like.
This past week I wore sneaks and cotton socks but walked 6 miles a day 4 days out of 7. On the seventh day blisters developed. But the 8th day and 9th day I kept my feet up off the ground and the blisters went away. Lesson -- Just baby them. We'll see what happens on the 4-day golf vacation next week.
I've had zero trouble with my hands but I don't use them for anything but typing LOL. I think it's the chafing that does you in. No trouble with my digestive tract but I can sympathize.
I take 2500 a day and weigh 180 pounds. But that's a purposeful decision by me and onc because I'm on the road a lot this summer/fall.
Wish I was slim like you guys. I haven't weighed 126 since I was about 15 years old. I'm built like the Dutch/Germans.
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Thank you all for the very helpful info! I wear gowalks which are the comfiest I've ever tried, but I really hate wearing socks. I will just have to wait and see what happens and put this cream on every day/night no matter what. I am irked by the $200 but what can I do? I know it could be a lot worse and my rent and car are cheap so oh well! If I get bad SE that keep me from going to work I will just reduce it if it's before my next appointment. I will get mad and blame my onc whether justified or not, and that will be like defying him which is silly but makes me feel better lol!! I always get a little worried about what to expect but so far I have not had many side effects from anything. I hope you all have a nice evening. Heidi
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Scwilly I hope you are feeling a lot better. That sounds like you definitely had too high a dose! Why do they put us through that kind of nonsense when it always seems that the lower dose works just as well? I'm not sure I'm buying the body surface/weight thing based on what I am reading. It looks to me like high dose means bad se regardless.
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Scwilly and HLB,
I'm on 3000 a day. My weight is around 155. Before they gave me this drug I had to have a conference with a chemo nurse. They said to use Utter Balm on my feet and hands. They also told me ONLY cotton socks. I had to order Buster Brown pure cotton socks from the Vermont Country Store. No one sells pure cotton anymore. I work on my feet all day on cement I wear hiking shoes with lots of cushion and these unattractive socks every day. I have not had one blister or soreness at all. I sort produce and handle lots of fruit and veggies and plants and my hands get red but no problems at all. Keep the "cow cream" on. It works!
Hugs to both of you.
Anit
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anit, thank you very much! I have lots of the cream but looks like I Ned to order some socks.
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Had my first labs since starting Xeloda. Everything was stable except LDH was elevated. When this has happened in the past it was bad news. Does anyone know if dead cancer cells can cause this. So bummed out about it. I just want this chemo to work. Running out of options.
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Scwilly, my first round of Xeloda was at an insanely high dose of 4600 a day. Based on body surface area. I weighed 155 at the time. Now thanks to what Xeloda did to me, I'm 147. I never heard of anyone else with so high a dose. It wrecked me, I ended up in the hospital with damaged intestines. A horrible experience. Now I'm on a much reduced dose and symptoms so far have stayed away. I don't understand why they start people out on these sickeningly high doses. Of course people will have side effects! In my case very severe.
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Thanks all for the advice and encouragement. I am going to start again on Monday with my reduced dose. I feel fantastic now and so am going to enjoy a 'normal' weekend. It looks like its prevention that is the order of the day!
I wish everyone low side effects and treatment success! Heres to another week - enjoy your weekends!
Sarah
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Thanks for sharing everyone. My team waited for second week of radiation to start X so I'm not starting until Monday. I got totally freaked out by possible side effects today because my only experience with chemo was early on with Taxotere which was horrible. Reading these posts was reassuring... Mostly...I was wondering DianaRose why you thought you were running out of options? I think there are quite a few more to try!
I'm starting on 2500 ...I thought split into the doses. Does that happen?
Have a good weekend all! Valerie
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Valerie- I have done CMF, Taxol, A/C three different times, Ibrance and now Xeloda. It seems like the only one that works is the A/C and there is a lifetime limit on it. I'm not giving up on Xeloda just yet, but if my LDH keeps going up she will pull me off it. I was wondering if anyone knew for sure if dead cells can cause this.
She did send some tissue samples to see if I qualify for Keytruda but there is only a six percent chance I do.
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Minxie, I agree, it makes me mad when I hear about them doing that, like who cares what we have to go through. I saw my onc today and he said he prefers to start lower than some others do because at certain doses there's too many who cannot tolerate it. I was relieved to hear him say that.
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Valerie YES, split your dosage. That is how it is supposed to be taken. 12 hours apart basically. Take with food and lots of water.
Scwilly, 5000mg a day? So 5 pills twice a day? When I first started my dose was 7 pills a day 3/4, I could not tolerate that at all. Onc dropped me down to 4 a day, then we worked our way up to 6 a day. I think going low and working my way back up was a big help.
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Anyone hear have any clue when one might expect to notice that Xeloda is working or not? I am just finishing my 2nd week so I know it's early. However, after just one infusion of gem/carbo, the symptoms I feel now melted away in a week's time. Just getting worse on X but I also try to remember there is flare to consider as well. How long does that last? My guess is no one can be sure but your case by case examples would at least be something. I will have blood tests Tues and she may order scans early but even that I question. Last scan was Aug 16. I didn't start X until Sept 12. Growth in that month could make it hard to tell if I am progressing still on X or not. Wish there were clearer answers.
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Kaay - I'm almost a week into my first cycle. Haven't had side effects that I've noticed but after coming off five weeks of A/C Xeloda is a treat. My blood work on Friday was stable except for my LDH which was elevated again. I hope this is working for the both of us. Did your MO do a tumor marker before starting so you would have a baseline
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Hi Sarah,
I'm almost through week 1 cycle 2. I was able to convince doc to stay at 3500 for at least one for cycle if I can keep my feet in decent shape. Since the lesion in my tibia is huge and grew significantly in the past 3 months I believe we need to be as aggressive as we can be.
The doctor's pharmacist told me they had a patient who had the same foot issues that I have had - terrible pain but intact skin. They sent her to a podiatrist who said that the thick calluses on her feet were trapping the effects of the xeloda between the callous and the underlying skin causing greater inflammation and pain. He recommended using Amlactin cream (an alpha-hydroxy cream). It significantly softens the calluses. You can only use it if you don't have open sores. I got it on Amazon and have used it this week. My feet are bright red but don't hurt. Big win.
I'm glad you are feeling good this weekend. Enjoy it and rest up!
Mary
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My onc doesn't use tumor markers. Unreliable for many though I do kind of wish I had them now, supposing mine were helpful. I know my liver numbers will be up. No way they won't be as it's obviously increasing in size. But how do I know if it's just flare or if I just haven't given X enough time? I suppose it's possible we'll just have to switch to something faster acting if the liver is too upset. Is that even accurate? Does Xeloda take longer to work than IV chemos?
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Kaay- I don't know much about Xeloda. Not sure if it takes time to kick in or not. MO didn't explain much at all. She does watch my tumor marker as they have always been on the money when they start to climb. My blood has always told what was going on much better then scans. Stupid lobular!
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Valerie, with 2500 take 3 pills in the morning, 2 at night. Supposed to be within 30 minutes after a meal. I've done it with just a muffin and not had any trouble.
Xeloda is transformed by the body into a chemotherapy called 5-FU. [it's an old old drug] So it should work pretty quickly. I don't have symptoms from my cancer so I can't speak about flare. 6 weeks after I started my TMs were down by half. I go on Wednesday to see whether that is continuing.
4600 is the dose that is FDA approved and on the label, but it's insane. My onc says that no one gives that. It's inhumane. Witness what happened to Minxie.
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Kaayborg, I know that a lot of oncs don't use TM's. For me they are rather reliable, I get them every 6 weeks. But if your insurance will pay for the labs, my gosh, it's just blood work, what's the big deal? If it brings you some comfort, insist on it!
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My TMs were always on target. But last Oct the TMs were in normal range and cancer was having a party. By Feb the TMs were high but that was also when the lymph node masses were very large, so I guess it was reading the "tumor" size and not the cancer our lymph nodes themselves.
Dianarose - it is not good news to have the LDH climb - it can also be sepsis and infection and other health issues. So to my thinking, cancer cell die off could be like an infection or sepsis, our bodies are screaming for it to get out of us. The scans know for sure, of course, if they are read right.
RNP also tells cancer tale - I had a complete lupus / autoimmune panel done in early September. My anti-RNP was 671, off the charts. I started to question, can that be high BECAUSE I am on a 5-FU chemo - esp one that is "fluorinated" and came up with the elevated RNP can be active cancer and in MBC the prognosis is not so good. Well sh*^. When I told my onc he made no comment, but today Hubby said he had a look on his face that said, well sh*^. We have surmised that the onc was allowing me to stay in naiveland since a PET CT was due the next Monday. Then we would know for sure. But the PET CT had to be canceled due to a drug allergy that is just now cleared up though the outline of the rash still shows. The PET CT is now Oct 2 and onc appt is Oct 3. I have been off Xeloda since Sept 7th. Scary for me. Was told to resume once rash is cleared. I think tomorrow at noon will be best. While we are near the ambulance center. Bcz trouble breathing has not cleared so much, cough, myositis of trunk,
DOSE - I was increased up from 2 pills 2x a day to 4 pills 2x a day during the first cycle. Then hold. 14 on 7 off. So I have been on 2000 mg twice a day. Fro me it has been hard. I am heavy, but I am also highly sensitive to all drugs and such. I got to 10 days and had a lot of issues even w breathing. Sooooo last cycle I took 3 at noon and nap then 4 at midnight and to bed, sleep after each dose helped me. Th little less in day helped. But now I am afraid the cancer is active again, lymph mass in supraclavical, possibly throat again at base of thyroid. Want to go at this w Xeloda at a high dose but sometimes I think slow and steady may be better.
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Bluebird- I didn't know an infection could cause LDH to elevate. I had just had both naphostomy tubes changed out which always causes some inflammation and was on an antibiotic for infection which is chronic with these dam tubes. Words can't express how much I hate them! Will have blood work again on Friday.
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For my wife, her first cycle on xeloda produced only a 10 percent drop in tumor markers. The Onc said that was the minimum change he would consider as evidence of some sign of efficacy. Her second cycle however produced a 30% drop in tumor markers, and that rate of 30 percent in 30 days continued for 8 months or more. Her first MRI at around 3-4 months showed just a little regression of the cancer, once again sort of non definitive. Hers is hard to read, as its both small discrete liver tumors in one area, and a separate large area (lobe) of diffuse cancer. Her second scan at 6 months showed more clear signs that it was working. By then, her tumor markers were way down from the starting point, like only 1/4 of what she started at. She had to reduce her dosage many times, and almost always take an extra week, or two, or three off. As well, something very scary happened at about two months into her treatment, she developed severe asctites, accumulating 5 liters of fluid in less than a week in her belly. With time off the drug and reduced dosage, it eventually slowed and stopped. My theory is that the dying cancer cells were plugging up her liver, because it only came on as the drug began to work. My personal thoughts are to give this drug time, and beware of too high of dosage. Many women get good results on lower dosages, and many women suffer from side effects that may not be necessary.
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Hi everyone I have just finished day 14 of my first cycle on xeloda. I have been very lucky with s/e only having some mild tummy issues, no trouble with my hands and feet. I did however start on only 3 tabs morning and night (3000). I am overweight but my oncologist said she would start at a lower dose and see how I fare. I'm guessing that this will probably increase when I see her on Friday.
My tumour markers are accurate for me but don't rise super high, my last blood test they were 89. (ca15.3). This is only the second time I have had progression previously they only got to 66.
I don't write often but read every day and would like to thank you all for the advice that all of you post.
Jennie
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Marylark - thanks for the tip regarding feet and the theory the Xeloda and inflammation could be trapped by calluses. Going to give my feet a good go over tonight. I feel like I am on the eve of a battle - with my next dose starting tomorrow! lol
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