All about Xeloda
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Is Grapefruit juice allowed? I know on Ibrance it was restricted, but Chemo pharmacy said all citrus was fine on Xeloda. I am hearing conflicting info on another site I am on.
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Is Grapefruit juice allowed? I know on Ibrance it was restricted, but Chemo pharmacy said all citrus was fine on Xeloda. I am hearing conflicting info on another site I am on.
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No grapefruit according to my label. A pity because I love to eat grapefruit. If you find out otherwise I'd love to hear it.
Leftfootforward, we were on La Pinta. We went to the north. This was the bucket list trip of one of my friends and we were invited along. My husband, who doesn't swim, didn't want to go so I went with our friends. How cool that you got to stay in the camp. We only visited the ranch. I'm not a bird person but the animals underwater are amazing. And I have video of two sea lions about 6 months old playing together and an even better video (and pix) of a one-month old baby sea lion. Cutest ever.
I was off Xeloda for the week (after only 5 days of a cycle). MO didn't want me to get into any trouble out of cell range. So I felt great and my feet are very happy. Tomorrow I start the next cycle.
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My tumor markers are back in normal range!!! I heart Xeloda.
Nel, it's fantastic to hear you are back to NED! Will you and your onc be considering a small dose reduction if your feet get worse? Stefanie, that sounds like a lot of good news: no activity in liver, reduced in single bone met, dropped CEA. Getting close to NED yourself. That is so weird about the tissue expander. I know nothing about it. I hope there is a simple solution. Not happy with that other imaging place at all. Pajim, what interesting places you visited! When you and leftfoot say you went underwater, do you mean snorkeling or diving? Shepkitty, we could argue in our spare time...
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Shetland, I am SO happy for you. Normal TMs...wow! Happy dance for you!!
💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻
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I started Xeloda a week ago, last Thursday. I was doing fine, no side effects at all, until last night. Horrible stomach cramps and blow out diarrhea. I took two Immodium and went to sleep. This morning I was fine until about 1/2 an hour after I took my morning dose - diarrhea again. Should I contact my doctor? Can they prescribe anything better than Immodium? Any suggestions?
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I had cramping diarrhea almost daily. I now take prescription Lomitil every other day, profilactically. It hashelped immensely.
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Minxie, what dosage are you taking?
It takes a while for the body to adjust. I had horrible diarrhea when I first started, too.
Stay hydrated...lomatil is a bit stronger than imodium. Zofran tablets help the stomach and they can plug you up, too.
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pajim - The clinic pharmacy where we get the meds from said grapefruit was fine, no interaction.
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2300 2x a day. I talked to my doctor and they'll prescribe Lotimil if I'm still sick tomorrow. Thanks for the help
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Minxie, 4600 is a really really high dose. I'm on 2500 per day and we decided today it was high enough. An oncologist friend of mine from London said they only prescribe 2000/day. (seems kinda low to me. At the Dana Farber the standard is to start with 3000/day). I hope they can get the diarrhea under control!
Shetland, congratulations on the TMs!!! We were snorkeling. It's unbelievable what you can see close to shore. That water is really clear. I didn't have an underwater camera so it's just in the memories.
My TMs are sinking like a stone. Down 2/3s from two months ago. Happy dance! My husband (who worries too much) will be thrilled.
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Apple pectin capsules helped me. But don't overdo, it can constipate too.
I am at odds with the dose I am on, oncologist said he judges toxicity of Xeloda based on hand foot syndrome which I don't have at all - BUT my hands and feet are treated twice a day with a super healing salve.
I feel exhausted, drugged, poisoned, weak, disoriented, sunken eyes, bloating in stomach.
I am on 2000 mg 2x day with the goal of 14 days on and 7 off. Onc doesn't want to change anything since CAs dropped. I know that once NEDs come I will want a change, cannot live like this at all.
All in all, am relived to be on Xeloda since it worked and it crosses both blood-bone and blood-brain barrier. So I have read, and hope that is true. With cancer up in neck and throat lymph nodes at highest level it makes me very nervous.
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Bluebird, I worry about brain mets all the time...good to know about X and the blood brain barrier.
Sorry to hear about all your other SEs. I DO have hand and foot syndrome...it's no fun. I've also had debilitating diarrhea and nausea, but lowering the dosage helped that. The dizziness and fatigue are giving me grief right now. Seeing the dr next week.
Leaving for Hawaii in 6 wks. Can't go like this...every time I stand up, I feel like I'm going to pass out and my head throbs. I've been trying to up my foods with iron intake so I can grow more red blood cells. I may need to take a 2 wk break before the next cycle.
Good luck on X.
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Thanks Lita - my DO is not so flexible.
Background: a bit of a rant too::::: Well he's not mine, my oncologist of choice left for Alaska for naturopathic holistic training to use with his oncology practice. We weren't doing so well before he left though. His team, the ones I am left with, missed a lot and did not relay proper messages and this cancer spread on his watch due to their failures. That was addressed and new staff hired, including a nurse navigator to find the holes in practice and patients not being heard. But I still needed Xeloda way before I got it, was on Ibrance Femara from Nov 2016 to April 2017 but that stopped working end of February and I could feel that happening. I said I was not getting better. I said. It spread again and had to use radiation to breathe. Then the lupus flare happened and cannot breathe right still. Right, because LUPUS patients are not supposed to get radiation. But they did not believe I had lupus since no dr had diagnosed it. I have since nailed that tidbit into my file, forefront! And learning more about lupus so I don't get treated when I should not be. I was in a wheelchair, too dizzy to walk due to pressure on ear glands and airways being blocked and superior vena cava vein to heart partially blocked too and collapsed upper lung lobe for about a year.
And this onc is a stand in for two months. Then two oncs will stand in during September before the new team takes over.
Anyway, I am on my own right now and being sent back to the drawing board on learning since I don't trust my doctor.
Back to Xeloda - so many questions. My liver area hurts today, is very slowly throbbing. Stinging, burning. Comes and goes but steady at it all day. Left side of neck and throat has swollen glands of infection or autoimmune acting up (lupus) or cancer lymph nodes, we always have to think cancer first and still hope the the least source of illness like infection.
I wonder if the Xeloda is causing liver to act up - or is it cancer cells dying off. Or more cancer growing because the Xeloda is not working already. Wonder wonder.
Lita, I feel for you with the debilitating health issues. And I know you, like me, don't want to make sudden moves lest the tx stops working. But like you said, I can't live like this.
Told the onc yesterday, I am taking it one month at a time. I am heading for NED. In my mind I said to me, I will make dose adjustments as I see fit, I am not ending up in the ER or hospital because you stand by your drugs and using the way of the first trials. He seemed very defensive of the chemo. And he kept saying, "I hear you, I congratulate you for doing what you are by getting to 10 days and 14 days." Then he would say, "But this is cancer."
Yes this is cancer. So what about the rest of me? But my resting heart rate was 126, way up. The nurse could NOT hear my BP and they never did come back to get that. And last month the nurse said my BP was extremely lowered and asked what I was doing. I said, "Taking chemo drugs, I suppose that would do it." This lab, RDW high, RBC low, bilirubin higher than ever for me but not high for abnormal lab.
I think all due to Xeloda kicking my butt too, not just the cancer.
When I am there I go in with questions and a list. I listen and take notes. But I am tired and disoriented and spinning so this happens. Sounding off, I feel like no one connects the dots and no one follows through. What I tell the nurse about what hurts right now, the dr doesn't read or know. He had the wrong labs - June. I had new from July and August, he was looking at the wrong ones and ugh just ugh. So they got the new labs. But he had not noticed, until he reprimanded me to get labs, those were from June. Last I will see him.
Maybe I will go to Alaska.
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Okay - question. anyone?
Please will you share what dosage you are on and the adjustments made to get you to the perfect dose --- while you were still evidence of disease especially --- but also when NED too.
Comparing a 14 / 7 day schedule at 2000 mg. to a 7 / 7 day schedule at 2000 mg.
3 mo on the 7 / 7 is 196,000mg at 7 cycles
3 mo on the 14/7 is 252,000mg at 4.5 cycles
Of note, 10 days... which I barely handle... is 6 cycles and 240,000 mg total.
(I used Oct 1, 2017 - Dec 30, 2017.)
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I'm on 2000/day (1000 a.m. & 1000 p.m.) I was titrated up to this over 2 weeks, starting at just 500 mg./day... then 1000, then 2000, partly because my counts were extremely low coming off Ibrance, and both of my oncs (UCLA and local) were concerned about them possibly tanking on Xeloda, which thankfully they did not. I'm stable and TMs have fallen dramatically.
There is a body surface measurement that gets figured into dosage, at least for most of us. In other words, someone petite, like me, gets a lower dose than someone a lot bigger. When you say 2,000 mg., is that your total for the day?
I'm not quite following your math above, but I'm also not sure cumulative mgs. are as important as how many days you are actually on the med. 7/7 vs. 14/7 would be only 2 weeks (approx) a month vs. three, right?
Liver pain and twinges. I get these all the time and think it's pretty common. Based on my scans, it's either the med working (tumor flare), or the med just irritating something in that area -- not progression.
Lastly, are you completely limited by your health plan or where you live to using this onc with whom you don't seem to click? It may be cancer (his words), but it's your body, and your observations and concerns about SEs should never be minimized nor dismissed by any doc. Deanna
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I'm on 2500/day. 1500 in the morning and 1000 at night. The usual starting dose at my cancer center is 3000/day but I have a heavy travel schedule this summer and fall. My onc didn't want me to get into trouble far from home.
An oncologist friend from on of the major London teaching hospitals says that they give 2000/day. Period.
No dose changes yet. It's only my 4th cycle. (not counting the mini cycle I had before I took a week off for my vacation).
Lita, Unless otherwise indicated, I'd suggest taking a week off before you go, and keep off the meds while you're in Hawaii. Enjoy life! I took an extra week off last week for my vacation and my tumor markers still came down nicely.
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Thank you for your congrats and good wishes, pajim and Stefajoy. Loved the line of dancers! Pajim, so glad to hear your TMs are also "sinking like a stone".
Bluebird, I agree with Deanna on getting a new onc if you can. Let that practice work out their problems without you being their guinea pig. That onc does not seem to understand that patients get to make choices for quality of life. To answer your dosage question, my onc chose to start me at 2500 mg per day. That is 500 under what the body surface calculation would say for me, and what appears to be a standard dose in some studies. I do 14 on, 7 off. I think my onc was right on for me, because my TMs went to normal in three cycles, yet I do not have severe side effects. I am pretty healthy except for you-know-what. What Deanna says about the days on the med being important seems to jibe with my onc's opinion that it was important in my case to choose daily Xeloda over a weekly chemo. She said that with a slowish cancer, we wanted more chances to hit it at the right phase of the cell cycle. Bottom line, you need a smart onc who will figure out the right dose and schedule for you.
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How interesting to know how they dose it in Massachusetts and London.
Like pajim's onc, my onc said to take 3 pills in the morning and 2 pills at night. But I asked if I could switch it and she said sure. Here are my reasons: 1. We have some evidence that cancer is more active at night, so why not take the stronger dose at night? 2. Pressure and friction on the hands and feet can contribute to hfs, so why not take the higher dose when I will not be using my hands and feet since I'll be asleep? 3. If X can cause nausea, why not take the higher dose before I go to sleep? (Peak levels are around 2 hours after taking it.)
I take my pills with breakfast and second dinner around 9:30-10:00 am and 8:30 -9:00 pm.This is to space them fairly evenly, and to give me the at least 13-hour overnight fast, which may be anti-cancer.
This may all seem like too much, but I feel better when I am doing little things that can't hurt and might help.
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Hi,
I am hoping to get some advice/opinions based on some of your real like experiences. I have been "hovering" here for a while, and the knowledge on this site is impressive. I've been doing a lot of research, and any additional feedback would be helpful.
I was diagnosed about 2.5 months ago, Stage IV (lung mets, small nodules on both lungs.) I started Tamoxifen 2 months ago, but results from my recent CT scan show progression, both in size of my primary breast tumour, and increased lung nodules. I am asymptomatic at this time. My oncologist is now recommending either Taxol or Xeloda as 2nd line treatment. (one or the other...not a combination of the two). I am pre-menopausal, and because first line hormone therapy (Tamoxifen) was not effective, these other options are being recommended at this time.
I guess I am looking for some information on how folks managed their treatments with either of these chemo drugs, and/or if anyone has any feedback that may help in my pro/con decision making process.:) Thanks in advance.
MissMonty
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I agree with everyone, Bluebird. DUMP that onco!
The thing about Stage IV is that they are not trying to cure it, but CONTROL it and slow its progression. If you can get to NED, great, but most of us have to settle for "stable" and just live with it. That being said, the onco is supposed to work with you.
When one is St 1 or St 2, the protocol is much different. The goal is to try and "cure" it if possible, and that's why women in that basket have to be willing to put up with a lot more crap and SEs. But us St 4 gals will be on some sort of Tx for the rest of our lives, and why should we be in misery all of the time?
My MO told me we'll keep pulling arrows out of the quiver and fighting this until I SAY STOP. She listens to me, and you need an MO who will LISTEN to you and be your partner in health when it comes to navigating thru this mess called cancer. Quality of life is paramount here. If your in agony all the time, you slowly lose your will to fight.
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Hi, MissMonty. Does your onc not give an opinion as to which drug would be better for you at this time? I don't think that decision should be all on your shoulders. My impression -- and check this with your onc -- is that Taxol is often used when a fast or dramatic response seems necessary because of significant progression or the patient being near the danger zone. It's big guns. And Xeloda seems to be considered a relatively easy chemo that is often used as the first chemo when a hormone-receptor positive cancer is not responding to anti-estrogen therapy. A different hormonal therapy like an aromatase inhibitor or Faslodex, plus ovarian suppression with Lupron, can definitely work even when Tamoxifen fails. But since there are lung mets, perhaps your onc wants to be a little more aggressive right now. This is just my (educated) speculation.
Personally, I found Taxol quite doable, and Xeloda as well, though I think X interferes less with normal life. With weekly Taxol, and the dexamethasone and benadryl pre-meds, I would have a very sleepy infusion day, then a steroid high day with energy, then a crash day or two where I felt slightly unwell and sometimes emotional, then three fairly normal days. And I lost my hair. Stopped before the neuropathy became permanent. With Xeloda, I just take my pills, take care of my hands and feet, and adapt to feeling tired. But it seems all my treatments have made me tired. I hope this helps. I'm sure more people will come along with good input for you. I'm sorry you have to be here.
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Leftfoot and Pajim ~ I sooo would get banished from the Islands! Never met a Galapagos Tortoise that I couldn't resist loving on.
Pajim ~ "The Challenge is On" excellent shirt! With your boonie hat and backpack you look ready to take on all those hills/mountains behind you. Great picture!
Xeloda Dosing ~ I was started on a dose of 4,000 per day, seven days on/seven days off. I was sick as heck. My MO dropped me to 3,000 and it made a tremendous difference. I'm midway through my 5th cycle and the only issues I have are numbness in my hands and the fatigue. Cymbalta helps with my hands. Still working on the tired part.
Minxie and Bluebird ~ Xeloda does cross the blood brain barrier. I had a golf ball sized brain tumor surgically removed this past February followed by two Gamma Knife surgeries in early March. I had so many brain mets it was fully expected I would need further Gamma treatments. The surgeries were successful with Xeloda playing a big part in my recovery. Almost all the brain mets are gone and the few that are left are dying.
I do wonder if the Xeloda is drawn to areas of more activity first? I've yet to see any changes in my bone mets. My team can only tell by scans as I haven't any markers that show in blood work. Last scans were in June, next will be in October.
Those of you with bones mets that have had such good results; how extensive were your mets?
So happy for all that are getting such great news from their latest tests!
Anyone with new or worsening symptoms or SEs should let their MO know as soon as possible. Living with a chronic condition(s), it is easy to blow things off. Better to pest the doc about "nothing" than to miss out on treatment for a "something".
Missmonty ~ So many of us are DX'd as Stage 4 right from the beginning. (sigh) BCO is a treasure trove of good information and advice. Unfortunately not everyone that posts gives accurate information. You are wise to educate yourself. Fact check anything you read and make your treatment decisions with your MO. Getting a second opinion from another MO would be helpful if possible. I'm not familiar with lung mets or chemos other than Xeloda. Luckily you have the detailed information ShetlandPony has shared with you. You'll get more good stuff from some of the other knowledgable folks too.
Until there is a cure for cancer, all of us are Sts/saints. Numbers don't mean a thing. It is the person, not the number or grade that is being treated. Cancer, is cancer, is cancer.
"Different Levels, Same Devil".
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Hi ShetlandPony and shepkitty,
Thanks to both for the response. I'm sorry any of us have to be here, but it is comforting to know there is such a great community of support and wonderful people here to discuss concerns with, and ask questions.
My Onc feels that Xeloda is a suitable and appropriate next step treatment. If it does not work, Taxol would be next. As the patient, I just question if Xeloda is "aggressive" enough. Of course all the people in my life feel that the more aggressive, the better. All of my research leads me to believe it is an effective treatment if one responds, and can be effective for quite some time. I am not getting any indication from my Onc that the situation is dire, at this point. Also, I would like to try to maintain as normal of a life as possible, for as long as I can. It's good to hear that you managed both treatments relatively well. That's encouraging.
Thanks again,
MissMonty
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My wife continually lowered her dosage while she was on xeloda. She also changed the interval to one week on, one week off. For her, it was balancing effectiveness with side effects. Eventually she went down to 1000-1150 2x daily, one week on, one week off, and it was still effective. We wish she had known how well it would work for her, and that she had started with a lower dosage. The xeloda worked almost too well, and she developed ascites as the cancer in her liver was being killed off. Perhaps an immune reaction to so much cell death. Who knows. So as the cancer died off, her symptoms got worse, then eventually after taking a break from xeloda, and lowering the dosage, the ascites got better and went away. If only there was a way to know in advance what minimum dosage would work on a person. We never found a minimum. Even at 1000mg 2x daily, it still continued to work, based on scans and tumor markers. Other women, not so fortunate, and they need higher dosages, or longer periods on.
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Shepkitty, you are a font of wisdom and inspiration. Always glad to hear you chime in. Glad the brain mets are getting under control.
Yes, I think Xeloda likes to whack away at the really active stuff first. My liver, pancreatic, kidney, and abdominal mets shrunk in a matter of months. Bone mets are another story. I also have activity in the bone marrow of my right hip and pelvis.
Hi to the new people. Xeloda is very doable, but never forget it packs a wallop and the SEs are cumulative.
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MissMonty, your family/friends' reaction of "Throw everything at it, be very aggressive!" is understandable. It can take a while to wrap your head around how treatment for stage iv bc differs from treatment for early stage bc. The best way I can describe it is, this is a marathon, not a sprint. Or as my onc put it, we want to give you the best quality of life and the most quantity of life. It isn't necessarily the case that the more difficult treatment will work better. We don't expect a cure, but hope for periods of remission or stability that will allow us to continue living life as normally as possible for as long as possible. You will see people here on the boards that have been doing that for a very long time.
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ShetlandPony. I am starting to get my head around all of this, so appreciate the feedback. Hopefully I respond to the Xeloda, and continue to do so for an extended period. Seems like quite a few members have had continued success with it. It would be great to have some stability, even if just for a while.
Lita57 and Husband11 thanks for your input as well.
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I wish there were like and thanks buttons here. Good information.
Everyone - the oncologist is leaving end of August so I won't see him again. I wouldn't go back if he was still there. No worries there, just blowing off steam. I don't appreciate power struggles and being stressed out by physicians. I held my own. : )
Deanna - Yeah, my math probably tanked anyway. But the point is there is not enough difference to base my fears by going into the more is better even if you end up in the hospital theory. I'm a large person, I would need higher. And that is 2000 2x a day so 4000 each day right now. You said, "Liver pain and twinges. I get these all the time and think it's pretty common. Based on my scans, it's either the med working (tumor flare), or the med just irritating something in that area -- not progression." Good to hear that. I am very nervous, the lesions were large. You ask about the health plan - it is good. I am thinking of Cleveland Center since I am dealing with both lupus and cancer and then there is the hypothyroid. Also considering Goshen Cancer Center near us. Lastly, this was the last time to see this doctor, the stand in. Then a new one September 11 then the new team a month later. So holding out to see where it takes me.
Pamji - Thank you for the details - especially the London teaching hospital limiting doses to 2000 / day. Very interesting. I read of a woman with BC then later she had brain mets being placed on 1 pill 3x a day and no breaks, she recovered nicely, a government study. My goal is 1500 at night and 1000 in the morning. If that will work once NED. Notable is the TM reduced well when I was on the beginning cycle dose, Started at 1 pill 2x day - 2 pills 2x day for 3 days - 3 pills 2x day for the rest of 14 days. And the TMs dropped.
Shetlandpony - I have the same reason for wanting to take less pills in the day. Two hours after taking I am zonked and have to sleep it off. I now take mine around 11 pm w a snack and around noon with brunch. But I am sick and sleep a lot right now. The time off for a real fast appeals to me, have always done that by going 12 to 15 hours without eating then with before the food would do something that cancer cells would not like. But now I take the Xeloda with the brunch since have to take w food.
Lita - I love what your MO said. "My MO told me we'll keep pulling arrows out of the quiver and fighting this until I SAY STOP. She listens to me, and you need an MO who will LISTEN to you and be your partner in health when it comes to navigating thru this mess called cancer. Quality of life is paramount here. If your in agony all the time, you slowly lose your will to fight." That is true, until this week I was losing the will all ove rthe place. But had to get back on bco regularly and gain the knowledge I need to make it through. My first onc was like that from the beginning. He worked with me on alternatives to supplement and help my health too. But he was overworked by the hospital and the staff went to hell and he didn't realize until my health tanked and Hubby called him on his private line since the messages were not getting through the staff properly. Hubby and I had a long talk today about moving to Fairbanks and being his guinea pig, he will be using oncology along with holistic measures.
MissMonty - I was stage iv with lung nodules from the beginning when I found the breast mass. There is hope- am still here and nothing in lungs now. But I too did not do well on hormone targeted therapy. Wish I had been on Xeloda from the very beginning really. THEN the hormone therapy.
Husband - I hadn't heard of ascites. Found this article. http://patients.gi.org/topics/ascites/ I have all the symptoms (trouble lying, sitting, walking) breathless, swollen bloated, sore, cannot seem to get more than a few bites down or even drink liquids like I need to, sometimes I can only take three swallows and am breathless, constipation........ and have been thinking it was the radiation and having lupus. But come to think of the timeline, I was starting to get these symptoms around radiation but they were full swing at beginning of second radiation - I couldn't even lie down on the rads table without great fanfare. Before at first rads I was fine except he cough. THANK YOU! It could just be this. Will knuckle down on lasix and talk to my DNP asap. Am all for some ultrasounds.
NOTEWORTHY: The Xeloda is powerful and needs to be respected as such by the doctors.
I have books to write and painting to create, things to do. Need to feel like I can accomplish more than walking to the bathroom and back and not being out of breath, trembling, sad, pissed.
Thank you to everyone. I feel better and more hopeful and know I am on the right tx for m right now.
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Hello all, I'd like to get your opinions. I'm nearing the end of my first cycle of Xeloda. Two weeks on this drug. I have suffered horrible diarrhea, haven't had a normal bowel movement in a week. The Lomatil is helping but it's still an issue. HFS has started, when I walk the bottoms of my feet feel like I'm on hot sand. If I am in such rough shape after two weeks, what does the future hold? Do the stomach problems abate after awhile? I know the HFS won't. I'm on 4600 a day and weigh 155. I'm hoping they'll decrease my dose. Xeloda seems to be my only option. ACT chemo failed me. I don't want to give up but I can't live with these side effects. Advice please
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