All about Xeloda
Comments
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@threetree What dose are you on? And on our week off, we are hit harder since that is when we have the maximum amount of the drug in us.
Did you ask your PCP for an extensive bloodwork? Be careful with D3 since too much or too little can be harmful.
I think that I wrote on here that I have post-prandial hypotension that causes my BP to tank after I eat. And that makes me horribly tired. But it took my research to figure it out.
My platelets and red cells are always very low too. But I don't have anemia. You need some testing done to figure it all out.
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@denny123 -Thanks very much for your response; and for your wading through my mess of a post (brain fog). You've highlighted some very good points, and I might be getting a better handle on all of this.
I'm on a 3000 mg dose. Until this past week, the first 2-3 days of the week off were not so great and often worse than the week on, but the last 2-3 days of the off week, were pretty good. This surprised me when every day of this last week off seemed to get worse and worse.
My onc does blood work once a month, and no, I haven't asked him for more. I try to do what I can on my own in between the monthly follow up checks. My red cell counts are always low, but the hemoglobin is always in the normal range and my onc says it isn't anemia, as long as the hemoglobin is normal.
I agree about vitamin D. I only take 1000 mg twice a day, as recommended by my clinic. I've read that high amounts can actually promote metastases, and that Vitamin D is definitely one of those things where you need some, but too much is detrimental. My understanding is that supplements in particular need to be watched, but that your body can pretty well naturally handle what you get in food, and is adept at eliminating anything that might be "too much", if it's from food. I generally try to get nutrition via food and not supplements.
Re the post prandial hypotension, I'm glad you brought that up. I didn't realize it could make you feel so tired like you noted. I have noticed that happening to me too, i.e. right after I eat, I get a blood pressure drop and then can feel really drowsy and tired, but I hadn't gotten anything like I've had this past week where I would just "hit the wall" when I was doing things around the kitchen and had no choice but to sit or lie down right away. I think the post prandial hypotension might figure in here. This is something I never experienced until I started to take the Xeloda, and I find it interesting that you too, being on Xeloda have that problem.
Well today was my first day of the new "on week" and sure enough, I actually seem to be better after taking my pills today. I just don't understand all of this, and it's so hard to figure out what's what.
I really appreciate your input, thanks!
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It's interesting that you also get the drop after eating. My systolic has gone as low as 75. But I can feel the drop before it registers with my BP cuff. What we have to do is eat less and more often. But I have such a hard time doing that since I am still hungry. If you google PPH, it says that it is common among the elderly. And I am 77.
My PCP runs fasting bloodwork and checks all of my vitamin levels. That is really helpful.
I am glad that you aren't into the alternative supplements, since none of those have been proven to be helpful or even safe.
I am now drinking Ensure daily for the protein, and am eating a bit more red meat, etc. I don't know if it is helping though.
Good luck and keep us posted!
Denise
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@denny123 - I too have read that it's an "elderly" thing, and I'm 73. Still, it never happened until Xeloda, so I have to wonder. Sounds like your BP goes lower than mine has. I get down to things like 103/62 or something, but that will be a "plunge" from more like 125/76 or so. I also read that the solution is the small meals several times a day, but it's just not me. Doing that and juggling times for pill consumption can really get crazy sometimes. I like to do overnight fasting too, and that shortens the overall time frame for eating and pill taking. I might look into a dose reduction at some point, but just want to give this 3000 a good try.
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@denny123 I sure I hope I do not get increased dose! I can barely tolerate what I am on. And 14/7 is not fun either!
@threetree i have only been on Xeloda for about 2 months so not sure if my issues are comparable. I just started my 3rd off week today since starting on May 1. I do 14/7 and by the end of my 14 I am a miserable old goat! I do get extremely tired to the point of having to stop whatever I am doing. Like right now it is 1:20 pm and I am fighting to stay awake. I seem to get the urge to nap almost every day at 11:00 am then 1:00 pm then 3:00 pm. I fought off the 11:00 today and going to nap as soon as send this off. And this continues on my off week. The only thing that seems to improve on my off week is nausea. And I am so grateful!
I wonder about anemia also. Met with my onc a few weeks ago and she did not seem concerned with my low numbers. I used to ask so many questions now I am too tired or the chemo brain fog takes over and I just forget. I only get occasional headaches and they are so random I cannot relate them to anything. And on top of the side effects from this drug, my cancer causes extreme fatigue as well. So I just do what I can do.
I try to get all my vitamins and nutrition from my diet. Supplements bothered me even before cancer. I just could not take any. My body rejected every single one! Oh a question for anyone: does anyone have a hard time getting water down? I used to easily drink the 64 oz needed now I can barely get 30 in me. That might be my cancer not Xeloda. Ok so now I am going on too long. I hope you get some more energy and less fatigue and headaches threetree.
Best to you,
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@marcials1 - Marcia, thanks so much for posting; yes I think your issues are comparable, and I can relate a lot to the sleepiness and trying to stay awake. Also interesting to know that you have had those moments of complete shut down, where you just have to sit or lie down. Personally, I've never been a napper, so really fight the urge to sleep/nap. I know they are very refreshing and helpful for many, but whenever I do take a nap, I wake up feeling discombobulated and like I've lost the whole day. Even with this Xeloda, I try to stay up all day, and usually do. I might just sit for awhile and read, but I'm awake. I even sit up in bed sometimes and just read or listen to the radio, etc., but I stay awake, if at all possible. I too try to get the bulk of my nutrition from food. I used to be kind of fascinated with supplements but not anymore. I do still take a couple just to help with my joint pains.
My oncologist also seems unconcerned about my low numbers, and has not said anything about anemia. Just in case though, I have been loading up on seafood for the B12 and iron in it, and I think it has helped. I have more stamina after just a few days, and took a good hour long walk this morning. I haven't been able to do that for a couple of weeks or so.
I haven't had a hard time getting water down specifically, but I have noticed, since starting Xeloda, that I can wake up some mornings with a tight throat and can have some initial swallowing problems (food, drink, pills), but that usually subsides, after I've been up for awhile.
Very good to read what you've had to say. It's a big help.
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@threetree I agree with the idea of getting extensive bloodwork from your PCP. Then you’ll know if you are anemic and what vitamins you’re lacking. I find my PCP to be more willing to listen and try to solve problems. I also prefer to get my nutrition from food. My palliative care doctor told me to increase my protein intake too. I get that swallowing thing too. It’s annoying. And gastric reflux. Yuk.
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@aj - Thanks very much for your thoughts. They are very helpful. I get blood work done once a month, but I'm wondering about the times in between those once a month checks. Oncologists are usually also hematologists, and certified in internal medicine, so you'd think they'd be real savvy about the blood work; especially anemia. I've chalked the onc's seeming lack of concern up to him being an expert in this area and really knowing what he's talking about. None the less, I think I will ask him at the next follow up about all of this. I've been told before that a lot of this is "just" the fatigue from the chemo, but I never understand what it is about the chemo that causes the fatigue, i.e. does the chemo cause outright anemia? I've also been told that the fatigue can come from just the energy it takes for your body to process the drug, i.e. that it's just a real energy sapping experience, but that it doesn't necessarily mean anemia. I can never seem to get specific answers.
Re checking with the PCP, I think you brought up a good point. I personally really like getting the perspective from different doctors. I have brought some of these issues up in the past with my PCP and get genuine concern, but sometimes mixed results. Sometimes the PCP will order more tests, but at other times, he asks me what they think at the cancer clinic, and seems to defer to them. I also go to urgent care sometimes with some of these issues, because when I go there, I also get the opinion of other doctors. Again, some of them have some good and different perspectives to offer, and once in awhile, they just don't really want to deal with a stage 4 cancer patient and suggest that I go to the ER. I find a lot of help at urgent care, generally. My PCP's office is located in the same space as an urgent care (one check in desk for PCP, one for urgent care), so sometimes that's helpful. I can see an urgent care doctor, and then my PCP is right there if they think he needs to be pulled in.
I also recently saw something where someone on one of these threads was saying she'd been told to get more protein, and it's interesting that you've noted that too. I'm going to give that a try, along with the B12 and iron filled seafood. I'm not a vegetarian, but at the same time, I don't eat all that much meat, but I think I'll start trying to include more, and see if all of that doesn't help. Odd, my palliative care NP told me I don't need her right now, because of how well I've reacted to this drug. I wouldn't mind seeing her though, just for another perspective and thoughts. All these thoughts and ideas from others are just so helpful to me, and that's why I love this group!
I'm sorry that you too get the swallowing thing, and I hope you find a way to deal with the reflux. I find that saltines and ginger tea can help with some of that - I try to avoid the Pepcid, etc. if I can.
Anyway, I'm rambling again. This brain fog is just ridiculous!
Really nice to "see" you. Thanks so much.
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I get bloodwork done every month too but they don’t check vitamin d levels or b levels, thyroid or iron through oncology. Regarding protein, I’m trying to lose weight and palliative care doctor said that it’s extra important to increase protein intake too. My eating had gotten out of control because i thought I was going to die so I might as well eat whatever I want. Well I didn’t die so I decided to clean up my diet and have lost 11 pounds so far. My blood pressure has gone way down too!
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@aj - Hey, congratulations on both the weight loss and lower blood pressure. That's an accomplishment to be celebrated! Very sorry to hear about your thoughts of how you'd just eat what you wanted, because you were deemed so likely to die, but I totally get it too. I have a feeling you're going to continue to be here for a long time yet. 🤞 You've been pretty darned successful with most of your treatments. You've also been a big help to me and others for sure.
My palliative care NP told me that the doctors just do the once a month blood work, and that if they see something in any of it, that suggests they should look more, like at vitamin and mineral levels, then they do. I had asked her about why they don't look further, and she said they know what to look for and when. My assumption, and the oncologist's comments have had me believing he just isn't seeing any signs that he needs to look further, but again, I'm going to ask him about some of this when I see him in July. I can see where on one day out of each month everything looks fine, but what about a week or two weeks later? I wonder if some of those vitamin and mineral levels don't fluctuate maybe, throughout the month, and you could have a bad week or two, and then recover by the time you get the next routine blood work done. Who knows?
I did just read an AI overview about capecitabine fatigue, and it mentioned a term I had never heard of before. It was "metabolic exhaustion". The article claims that since the drug destroys so many good cells in our bodies, those bodies have to keep working super hard to repair the damage, and that causes the super fatigue. It's about the rapidly dividing cell issue, when the drug not only attacks and destroys cancer cell, but also healthy ones too. The article stated that the work the body must do to repair all that damage constantly, is simply overwhelming to our energy stores, and subsequently the cause of the exhaustion. It sound like this could be separate from anemia or vitamin and mineral deficiencies, which can still also certainly figure into things sometimes. I'm thinking this is probably what my onc is referring to when he says "just the drug" can cause this overwhelming fatigue, when I've asked before about things like anemia and electrolytes.
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@threetree that makes sense. My fatigue comes and goes with no real pattern. Today is a tired day.
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@threetree , and thanks for the kind and encouraging words. When I was first diagnosed I thought it was over. That was 3 and a half years ago. I get lots of information from you too!
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@aj - Glad my thoughts were meaningful to you. I became stage 4, 3 years ago, so I get where you're coming from. Looks like you had quite a bit of time before that though, where things stayed stable/steady. My original stage 3 diagnosis was in the fall of 2018.
You bring up a good point about the randomness of the exhaustion days (sometimes just hours), and I think it probably does reflect a lot of fluctuation of a lot of different things (vitamins, minerals, red blood cell numbers, cell repair needs, and more). My days can really vary too.
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@threetree @aj just wanted to let you know that your latest conversations have been very helpful to me and gave me some hope and good info. I am not feeling well lately at all and may not be back on here for a bit so thanks for what you have shared. This thread sometimes feels like someone threw me the lifeline 🧡
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@marcials1 - Oh my goodness, so sorry you are feeling that badly. Please let us know if we can help in any way. Maybe a dose reduction is in order; or even just switching to the 7 on, 7 off schedule? Many seem to take the dose reduction well and don't progress. In the one case where I did see that someone said they progressed after the dose reduction, they just went back up to the 3000 and stabilized again, and seemed to have stayed that way for a good while, at the time of their post.
I honestly don't think I could take these pills 14 days in a row, so I can't help but wonder if the 7 on, 7 off wouldn't be the answer to a lot of your troubles?
Sending good wishes and hugs, Marcia. Please keep us posted if and when you can. I'll be thinking of you.
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Hello everyone, thank you for your very helpful discussions.
I've been taking Xeloda 7 days a week, 3000 mg/day, for a year and a half.
Indeed, I think there's a cumulative effect on the body. Fatigue comes and goes, and I allow myself a nap after lunch whenever possible to feel better for the rest of the day. I often get migraines during my week off, as if I'm going through withdrawal from the medication. I also have more joint pain than at the beginning of the treatment. It's different each cycle: sometimes in my shoulder, then in my feet, and sometimes I have hypersensitive gums. Some cycles go very well, and I have energy, while others I'm completely wiped out.
My doctor does blood tests every month and has never noticed anemia; I have the impression that my fatigue comes from my liver struggling to properly metabolize the medication. My bilirubin has been very high since the beginning of X.Regarding brain fog, I've noticed that I struggle to find the right words or the last names of certain people, feeling like I'm stumbling around a bit.
All these are the negative points, but having said that, I'm very happy to be on a treatment that has been working for so long with few drawbacks, and that allows me to live a decent life. Having to take chemo at home with spaced-out checkups at the doctor's office is truly a luxury for me right now.
I wish you much strength and courage to support you through this ordeal.
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I agree that this an inconsistent drug. For me the side effects come and go. Sometimes it’s digestive issues, sometimes fatigue, sometimes headaches, sometimes it’s terrible hand foot. I never know what to expect.
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@soldanella - Thanks so much for posting re this interesting conversation that has been going on. I can relate to so much of what you've mentioned; the fatigue, the migraines, the joint pain being in various parts of the body at different times. Also the hypersensitive gums, and some cycles going better than others. I get the same brain fog issues also. I totally agree that in spite of the negatives, it's far better than the alternatives, so I'll take it! I've only been on this drug for 6 months, so I'm still learning a lot about it, and your comments add a lot to my knowledge base here. The randomness of all of this and the way the cycles can vary from bad to not too bad, are all the kinds of things I'm still learning about, trying to understand, and get used to. It's so hard to know when it's just some "passing pain" that will go away on it's own, or if it's something serious. Same with the fatigue and all the other negative symptoms. When are they just "passing" and when are they indicating something more serious that needs more attention? I guess I'll get more and more down and understand more, as time goes on, and maybe not get as panicky as I can with all these side effects.
Soldanella, you've been through a lot and the way you have handled things is quite admirable. Wishing you all the best and thanks again for your comments here. They are very helpful. It's so good to feel like I'm not alone in all of this.
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Yes, it's true that we don't really know what to expect from one cycle to the next, and it's sometimes difficult for me to know whether I should take a symptom seriously and talk to my doctor about it. I confided in my husband at the time, then 2 weeks later I felt fine and had nothing more to tell the doctor. I sometimes feel a bit silly, but I'm also learning not to panic at the slightest discomfort.
We are put to the test with our treatments which force us to approach life, pain and plans in a different way. Our exchanges give me strength. Thank you for reminding us that we are not alone on this path.3 -
Just got my CT scan results and there's no sign of cancer! So hopefully I will make it to 25 years of MBC de novo.
My scan shows a lot of other problems like severe mitral calcification. But my new cardiologist says it's ok??? Enlarged heart and spleen, bone degeneration, etc. Not a good read.
But no new tumors is the good part.
I hope that all of you start to feel better. I have been asking about fatigue for over 24 years and my nurses just say it is because my body has to fight so hard now.
And then there's my postprandial hypotension that tanks my BP every time I eat.
It has been so hot here in PA and this week will be in the 90's. My garden requires a lot of work, especially fighting the bugs and critters. But I do kind of enjoy it!
I also have been trying to increase my protein, but don't really notice a difference.
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@denny123 That's such good news for you...no signs of cancer, that's wonderful.
I hope that the symptoms for your heart are not too bothersome and that a solution will be offered for this valve, if necessary.
We had a major heatwave and the vegetable garden suffered a bit despite intensive care. The temperature has dropped this week thanks to the storms, we've had rain and the vegetable garden is recovering.
The latest scan now shows 3 new small metastases on my spinal column; According to the MRI, we can wait before considering radiotherapy and I can continue with Xeloda,phew!
I wish you equally good results with your next scans and a bountiful harvest in the vegetable garden.2 -
Congratulations Denny123 the lack of cancer news is wonderful. Looking forward to congratulating you for surviving 25 years MBC.
Good news for you too soldanella getting to stay on Madam X and not rush into radiotherapy.
I am looking for some advice please. I am on 7/7 and was on 3000mg for the first month but my Onc reduced my dose to 2600mg for this course because I mentioned that I had a bit of fatigue. Anyhow it has certainly made a difference to the fatigue however my arms have lots of red marks and are a bit itchy. This started during my first month and is getting worse. I have not really used sunscreen and we have had very hot sunny weather so that is probably the reason but I fear I may be taken off X. Has anyone else experienced this?
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@soldanella Thanks! My cardiologist isn't worried about the mitral valve. Maybe because all of the other results are really good? I will see him in October.
I am sorry about your new spots and I hope they disappear!
I plan to pick my first cucumber tomorrow!!! Nothing else will be ready for a long time.
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@chico - So good (and interesting) to hear that your fatigue is notably better with the dose reduction. I had recently read somewhere that a dose reduction helps things like diarrhea and hand/foot syndrome much more than it does fatigue, but you are causing me to take another look at that notion. I've considered asking about a dose reduction, but I want it really just for fatigue. So far no other side effects have been nearly as bad, and I can generally put up with them.
I don't know what to say about the red marks and itching. I am sometimes hesitant to tell my onc about some side effects, because I'm afraid he'll stop the drug. It's a dilemma for sure, deciding what to do. How bad do the red marks and itching get? Is it just "annoying" or something that seems more concerning, and maybe even intolerable? You mentioned not having used sunscreen. Could it be a sun sensitivity reaction to the drug? I understand it causes a lot of sun sensitivity. I don't use sunscreen either, and right about the time I started, my very old, usually faded, and mostly invisible freckles came out in a big way. I didn't mention it to my onc, but I have so far chalked it up to being a drug side effect. Separately, and not necessarily related to the freckles, I also get "itching spells" from time to time. They can range from no big deal, to quite bothersome, but they always eventually go away.Just some random thoughts here as I ponder what you wrote. I wish I had more knowledge and info to share. Sending good wishes and best of luck in finding a solution (or learning that the marks might be bothersome, but not serious).
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@denny123 @threetree@cookie54 @aj thank you so much for coming back to me and sharing your thoughts. I will mention this to my Onc however he has told me that X causes strange things to happen to the skin and to use a high factor sun screen - advice I have stupidly ignored. I like to walk so am outside quite a lot. So far although my feet feel a bit different (tingling) there is no peeling so that’s something. Further to my dose reduction the fatigue, which in 10 years I have not experienced on previous meds is much reduced.
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I have been on chemo for over 24 years and have always been told to use sun screen, but I don't! I don't go to the beach or lay in the sun, though. But I do gardening and yard work.
I am part Italian, so maybe that helps. I am lucky.
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