All about Xeloda
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Just had TM draw this a.m. I have been on a 2 week drug holiday. My HFS was severe and my TM's crept up a few points. After discussion with my MO we decided to take a bit of a holiday to give my hands and feet some time to heal and the inflammation to go down and then redraw markers. If the TM's come back elevated we may actually have progression. Based on tumor genetics we may have to move on to the A train. Seems most treatments are failing every 3 to 4 months...sheesh.
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Intothewoods, I had Taxol (same family as taxotere) in 2014 and Xeloda 2017 to the present. Both got me an amazing response. They are different kinds of chemo. I’m curious to know your onc’s reasoning for keeping you on taxotere rather than simply switching.
Husband11, thank you very much for the info and links about X dosing. Very interesting. I will save this for reference.
Booboo1 and Twirp26, welcome and nice to meet you! The main points are to avoid heat, pressure, and friction on your hands and feet; moisturize; and tell your onc about your side effects.
Snowfall, about the shoes and orthotics. I figure that since feet get hot and sweaty with these, cold water rinses and fresh socks once or twice a day might be a good idea. Presumably the chemo is coming out in sweat and sitting there on the skin.
I have been on Xeloda for nine months at 2500 per day, 2 weeks on 1 week off. Hfs is not severe or limiting, and tumor marker is normal. I sleep better than I did on anti-estrogen therapy, and have fewer aches, pains, and injuries. So I kinda like this treatment the best.
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NO-1, ugh it’s hard to be in that wondering what’s going on place. Your onc seems prudently cautious. But wouldn’t you want to recheck the marker after going back on X for a cycle in addition to immediately after extra time off? If the cancer has been Her2 negative (you don’t show your stats), have you tested to see if it has changed to Her2 positive or has a Her2 mutation that would explain the series of treatment failures?
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Shetland, thank you for pointing out that my treatment info was not showing. I had everything set to private within my settings.
My TM markers are just up a point or two which my MO likes to call floating. If they are the same or up just a point or two we will probably decrease the Xeloda and draw again in a month.
I was scheduled for a liver biopsy in December just after I started Xeloda. I literally was on the table and prep'ed when the IR called for another IR to come to the room. Ha, the Xeloda worked so well and so fast the IR asked me what I was on because the liver tumors had shrunk to the point they could not biopsy them. He wished me a very merry Christmas and left the room.
See MO on Monday and we will go from there.
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Ha, what a great story. It must have felt great to be excused at that point. SimilarIy, I was in the IR’s office planning my liver radioembolization and biopsy when that day’s TMs came in on the computer and we cancelled because of the fast, dramatic response to Xeloda. What marker, NO-1? CA 27.29? CEA?
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Hi, I posted this on Abraxane, but think I should post on xeloda group too because my consin was on Abraxane/xeloda and now xeloda onl. Has anyone have fingernails problems, such as smelling funny, fluid, and painful? What can we do to make it better?
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Shetland,
I am really glad to hear you like Xeloda. I am very nervous to try this one because of all of the ugly side effects I’ve been reading about. So it’s posts like yours that are so important to us newbies. I’m hoping I have a good response on this one, as none of the hormonal treatments have worked for me. Thanks for posting
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I had great response to xeloda (nov-fen) and got to drop to two pills day! My hands and feet are dry. My feet get sore if on them all day.
It makes me not hungry and that's it's own worst enemy. As long as I eat I have no digestive issues. I did have diaherra the first round but OTC immodium took care of it. And I've added a yogurt drink every day.
The hormonals didn't work for me either. My tumor mutated against them.
I still have fatigue but two young kids keep me busy. If I could sleep better I think it would make a difference. I just have to pace myself.
I have noticed my nails lifting and some peeling underneath but no smells. I'd really really really like a mani and pedi. My cuticles are so rough and dry. But afraid of germs and scaring the tech with my peeling feet.
Have you tried soaking them briefly in Epsom salts? My feet swelled worse than my hands. Just don't make it very warm.
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Kidmanlianag, I’m no expert but I wonder if there is some infection with the nails. Have you shown them to any doctors? I have partial lifting of by big toe nails that corresponds to the Xeloda red area on the side of the toes. (There was already a smaller lifted area from Taxol.) But there is no smell or fluid. Zills, is it both finger and toe nails lifting for you? I paint my toe nails myself sometimes to hide the odd look. And I blow dry them after a shower to help prevent a fungal infection.
Booboo1, it seems Xeloda is the favorite first chemo when anti-estrogens stop working. It actually is somewhat targeted in that it is more active in cancer cells than in normal cells. How long have you been on it? Or are you about to start? Be sure and take it after a meal. Wishing you a super response!
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Shetland,
I am due to start it on Wed. this week. I have also been on Taxol, but my onc wants to try Xeloda because she said it's a 'better quality of life' and I 'probably' won't lose my hair. I have tried two anti-estrogens, neither of which worked. Taxol worked pretty well, but is hard to tolerate long term.
How many pills do we have to take with Xeloda? It sounds like a lot. Also, do you need to get blood work done weekly like with Taxol
Thank you again for your response. I really appreciate it.
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booboo- your dose is figured out by your weight. Once my MO knew Xeloda was working I only get my blood checked on my week off. Pills are much nicer then infusions. Just keep your hands and feet well moisturized. Soft socks help too. I came off A/C six months ago and have about an inch of hair now. It grows back on Xeloda just slowly. I hope Xeloda works wonders for you.
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although all the side effects and pain in your posts but your posts gave me hope that all this suffering won't be for nothing .
I'm on xeloda for 20 days now I'm on the last day of 7 off of the first cycle I had very traumatising week since last Saturday till last Friday I was hospitalised (first two days in the ICU) i had severe dieahrrea with melena ( due to severe gastritis ) and vomiting that left me totally drained and complain of electrolytes imbalance. Now I'm better still don't eat anything only drink clear fluids which keep me low battery all the time, but I'm better no vomiting and only normal frequency of defecation (liquid stool due to no fibers and clear fluids only diet)
I'm afraid that when I start x tomorrow again I would go through the same suffering I hope not , if there is any hope tell me and if not warn me to be ready .
N.B my hands and feet didn't hurt as my stomach okay there was tightness and redness but that wasn't my complain at all the GIT seems to have the worst reaction in my case
glad to hear from you all that it might be better later on , and you all accommodate with the awful side effects and many of you had great response to that drug , wish you all better scans next time and less suffering from medication
oh BTW I also trying some of the alternative therapies beside the conventional one 🙂
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Havinghope, that sounds awful, and I’m sorry that happened to you. Because you had a severe reaction to your first cycle of Xeloda, I suggest you ask your doctor to see if you have DPD deficiency. Show him/her the source below. If you do continue, be sure to eat a meal before your pills, have some loperamide (Immodium) on hand for diarrhea, and ask about reducing the dose.
“True deficiency of DPD affects approximately 5% of the overall population. In these patients, the lack of enzymatic activity increases the half-life of the drug, resulting in excess drug accumulation and toxicity. [1] In addition, 3% to 5% of the population has a partial DPD deficiency due to sequence variations in DPYD gene, which potentially limits their ability to fully metabolize the drug, thereby resulting in toxicity.“
Source: Medscape article
Fluorouracil Toxicity and DPYD
Updated: Jan 05, 2016 Author: Fazia Mir, MD; Chief Editor: Karl S Roth, MD
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Regarding hair on Xeloda, my hairdresser and I both think mine has gotten thicker now that I am off anti-estrogens, and it looks pretty good, and has a normal or slightly fast growth rate (as it did pre-cancer). Dosing is interesting. I have read articles that question the dose by weight plan, that suggest that there is a lot of individual variation in drug metabolism, and that lower doses can be just as effective. See posts by Husband11 above to start. It seems like in parts of Europe they do not go by weight, but in the USA they do. My onc put me on 2500 per day, which is two pills plus three pills. I think it must be a good dose for me because it is effective, and I do have some hfs but it is not severe. I might worry if I had no side effects at all. I get blood drawn once a month, and don't concern myself with what part of the Xeloda cycle I am in because the results are always acceptable. Booboo, your plan makes sense to me. Some people stay on Taxol long-term, but for most it is used when “big guns” are needed to get things under control, then they switch to something else. It can stay in your arsenal for later if needed.
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Thanks Shetland, She did show it to her doctors and they recommended putting a few drops of iodine in the gaps, so yes, it might be infection, hope that works.
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Thanks Shetland. I appreciate your response. There's no opinion that I value more than someone who is already taking a drug I'm about to take! I also feel more hopeful that X will help.
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Shetland, thanks for all he great info. My onc said there's data that shows a synergistic response with Xeloda added to Taxotere. I know he wants NEAD. The last scan did not show progression but the CA-15 is now in the 600's. I'm on a little "break" from the Taxotere to do two weeks of Xeloda to see how I do on it. I'm on 2500. We'll start the Taxotere again after the week off Xeloda. I'll see him before the infusion and discuss his thinking re not using as a single agent because I am growing quite weary of the Taxotere side effects.
havinghope I hope you will do better with this next cycle. Gosh your last one sounds rough to say the least.
I hope all of us newbies to Xeloda get good fast results!
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I saw your post. I'm 75 and Stage 4. Been on Ibrance, Taxol, Gemzar and Halaven. Second time around with cancer. Now Stage 4. Getting ready to start Xeloda once it's approved. 3 pills am and 3 pills pm. What should I expect? And is there anything that Will help with Nausea. So far, that has been my worst side effect. Lost 30 pounds after radiation hit my esophagus. HELP! Very worried.
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Woot, woot! Saw the MO on Monday. My tumor markers dropped 10 points in 2 weeks. They are now deep into the normal zone. The 2 week drug holiday worked. I had severe HFS and the MO thought my slight up tic in tumor markers was possible caused by inflammation and what appeared to be an infection of the great toe. Started antibiotic and stopped Madame X for 2 weeks. Will continue with a few more weeks off until the HFS clears and than back on X but at a reduced dose. Current dose was 3000 mg per day.
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No1- great news on your tumor marker. Normal range is hard to achieve! I ha e been stuck st 55 for two cycles. Will hsve it checked again next week. I don’t have HFS but instead an itchy rash on my feet. They don’t hurt so I’m not going to complain.
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NO-1, that's great! I'm also glad to hear that drug holidays aren't harmful. I'm on the road and now realize I don't have enough pills for a 14 day cycle. 11.5 days it is. . .
I hope your feet are getting better.
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hello, ladies - for those of you that have tumor markers in the normal range, can I ask how high they were to begin with? I just finished my 1st cycle of Xeloda...5000mg a day. I had to stop after 11.5 days because my feet were getting super red, and painful burning. I just started my 2nd round yesterday, at 4000mg a day. My MO just called with my TM, and they nearly doubled after the first round...from 425 to 818. She claims she's not concerned—it could be the cancer cells dying off. I'll have a CT scan in 2.5 weeks, which will tell the real story. I feel really good since starting X...my liver pain has subsided, and I really feel like it's working. However, the TM's have me freaked out!
THank you for your guidance and support.
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KC, I think the fact that your pain has subsided and you feel X is working bode well. It is true that TMs can rise when a new med is killing off cancer. Keep calm and carry on.
NO1, congrats on normal markers! It sounds like you have a sharp onc. (Btw, I just now decoded your screen name. It's like a license plate.)
Pajim, I like your attitude. I can see that you are in charge of Madame X and not the other way around. My hands looked so good after my 2 weeks off and first week on, I feared this year's pharmacy had sent me faulty pills. But no worries! Fingertips are peeling and sore again. If it worsens...dose reduction.
Dianarose, ok. Stuck at 55 is not too bad. I'm glad your feet do not hurt!
Very interesting about X and taxotere, intothewoods. Thanks for explaining. I suppose the taxotere can be stopped when necessary and you can continue with just X.
Havinghope, how are things going?
WarriorG, not everyone gets nausea on Xeloda. Be prepared, but don't expect the worst. Eat a good and easy-on-the-tummy meal before you take the pills.
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Into the wood, i didn’t know there’s a report about xeloda and taxotere combo, I’m going to look for it. My cousin was on Abraxane(similar to taxotere) then added xeloda for 6 months. I thought it was just her doctor being creative. Her CA153 dropped from 700-800 to 35 now, but she had to stop Abraxane because of side effects, she continues taking xeloda and added letrozole. I heard Abraxane is more tolerable than Taxotere, if side effects are bothering you too much, maybe Consider switchin to Abraxane?hope the combo works for you .
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Thanks kidmanliang and shetland. The drop in your cousin's TM is encouraging- mine are in the 600's. I'm getting ready to email my onc about these side effects in preparation for my visit with him on the 27th! The fatigue is much much more than it had been since adding the xeloda and I have some nausea and more acid reflux which had been better with Prilosec. No h/f so far but with the change in taste, and constant watery eyes from Taxotere and all the rest, I don't know. I don't want to be a baby, and I want to get the most out of every option but QOL is important. It's even hard for me to meditate unless I'm lying down because I get dizzy. We shall see.
Best to all,
Lisa
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Thanks dlb and husband. I am doing okay so far with just mouth sores and nausea.
I am also on the FB Xeloda group-love the frequent posts!
Intothewoods-I am on Xeloda with Herceptin IV weekly at 1/3 of the usual Herceptin dose. I used to get Herceptin every 3 weeks.
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I might be coming back.
Turns out Kadcyla is great for shrinking my liver mets. Unfortunately it doesn’t cross the blood brain barrier so my brain scan sucked. 17 lesions.
Trying to formulate new plan which might be return to Xeloda and add back herceptin and perjeta.
TB
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When I was on Kadcyla, there were several of us ladies on it at my chemo center. One lady had great success with Kadcyla and her brain mets.
What about the Super Kadcyla? D-8201A? Still in phase 1 clinical trial though.
Xeloda with Tykerb is also an option. But Perjeta is also good. I can't have it though, so far.
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LFF, I'm sorry to hear that. I hope Madame X can give you another long run. It will be interesting to see if it goes back to working after going off of it. You had quite the run with X didn't you?
Congrats NO1. My TM's have never been in the normal range. Mainly around 100-150. It blows my mind to see when others are in 4 digits! Does that mean that the cancer is quite aggressive?
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