All about Xeloda
Comments
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@ailurophile I just saw your message right after I sent mine. Sorry for overlapping. I’m glad you got a reduction and hope that works for you. I have noticed for myself that even at my 3000 dose, the 7/7 eventually settles in where not all of the bad days are for as long of a time. Mine has got to the last 2-3 days on and first 1-2 days off are the only bad days. At least that is the current situation for me. As we know, things change!
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Well darn it on your oncologist not being on board with the 7/7 dosing but I'm glad you got your overall dose reduced. I'm on my week off now but last week I did the total 2000mg dose and didn't experience any ill effects. Next week I'm going to try 2300mg dose but my oncologist and I already discussed if I start to feel any side effects I will resort back to the 2000mg dose right away. I so far seem to be tolerating it really well, maybe just a wee bit of fatigue but since I am doing my daily bike ride again it increases my overall energy level I think. I feel good on my week off and I really think it is attributed to the 7/7 cycle as my dose is higher than when I started. Please do keep me posted and I hope with each day and the reduced dose you will feel better. Take care. Sandra
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Thanks for checking in and I'm so glad your tumor marker is still going in the right direction. I'll have labs next week and we'll see where my white cells, rbc's and neutrophils are this time. A month ago, although my dose was lower they were still reasonably good. My hemoglobin is always low these days and stays around 100. I am totally pissed at your oncologist for you. I can't imagine how insensitive you have to be to cancel an appointment to someone that is driving hours to see you….unless she had a family emergency I will continue to say she is totally disrespectful. Definitely find yourself a new one and hopefully you can connect well with them and establish a rapport.
I'm on my off week but last week I did a 2000mg daily dose and all was well. No ill effects. Hopefully that will continue. According to what was established for MBC at the 2023 ASCO Breast Cancer conference as well as from the 2025 article posted in the Journal of Clinical Oncology the 7/7 dosing is a positive step.
My oncologist and I discussed that the maximum dose I would probably do is a total daily dose of 2600mg so I'm getting close to that anyway.
Please keep us posted and I hope your flu-like feeling goes away. Onwards we go. Sandra
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Hi Ladies! Just checking in here. I had my CT scan on Sept 14 but it was never recorded online as it has for so many years. They are changing over to a new system, so maybe that's the reason. But my scan was OK. I have had a suspicious spot in my liver for about 2 years and this tech marked it as significantly abnormal, which is scary. But my oncologist said that the radiologist says that for all of the scans she reads. It hasn't grown at all and I do have the option of getting an MRI, but he doesn't think that I really need one. So I will go with that.
So I will stay at 2,000 at 7/7 since my mouth sores are now gone. Next scan will be in 3 months, which will bring me to 9 years of Xeloda.
@aj Sorry that you have to change to Doxil, but I have heard good things about it. It could be my next option.
@girlsptz I assume that you have read about avoiding the hand-foot stuff by lowering the folate and folic acid intake?
@ailurophile I was on 2,500 for over 8 years and sure don't want to go higher.
@marcials1 sorry about your cancellation. My Sept 11 appointment wasn't scheduled but I did show up. They blame the new system. But I only drove 8 miles to the chemo center. I didn't check my schedule paper since my treatment has always been every 3 weeks for 24+ years. So that is my fault.
@chico thanks for the good wishes
@cookie54 thanks also for the good wishes
@vajra13 did you get the silicone socks?
I hope that I didn't forget anyone!
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I’m glad your tumor markers are still going down, but I’m sorry you’re feeling so lousy. I really hope you can find a new oncologist soon, especially after that awful experience.
And thank you for sharing your 7/7 experience. That actually gives me some hope that things may settle down over time. I’ll see how this dose reduction goes and keep you posted. Take care of yourself too.1 -
So glad your scan was OK and that the spot hasn’t changed in two years. I can totally understand how scary it must have been to see “significantly abnormal” though. And 9 years on Xeloda is amazing! I hope the 2,000 mg 7/7 continues to work well for you with no more mouth sores. Keep us posted!
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@denny123 - Real glad to see that your CT showed "stable". The way those radiologists word things can be very strange, and varies from radiologist to radiologist. My oncologist told me that what he finds important is the length of their reports. He told me I can usually rest assured that things are good, as long as the radiologist's report is short. We both had a bit of a laugh over that, but it does seem to be true for the most part
@ailurophile - My oncologist also cited the 2025 article from Journal of Clinical Oncology that @girlsptz mentioned when he put me on capecitabine last January. He said the 7/7 schedule was looking just as good or better than the 14 day regimen, so I too feel really badly for you that yours didn't go for it.
@marcials1 - That's a long time to drive to your onc. Can you fine one closer to you?
@cookie54 - Hi, and hope you are doing well!
@chico - How are you doing? Hope all is good and that you're enjoying the beginning of the new season.
@eleanora - Please let us hear from you if you can/want to. Thinking of you and sending a hug!
A happy fall hello to all. The fatigue from this drug has really cut into my ability to post and/or reply back a lot, so I show up here when I can. I did have a follow up with my onc last Thursday and things seem stable. Labs all came back looking good. He messaged me this afternoon saying that my tumor markers were "looking well suppressed" for now, so that's always good. No scans until mid October. I'm still in the process of trying to notice any differences between my original 3000 dose vs this one I'm on now of 2600. I too find the last half of the "on week" and the first few days of the "off week" to be the worst. I'm thinking they might be a little less worse now, but I'm not real sure. Same pattern, just possibly a little "lighter" overall.
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@denny123 what great news re your scan and that in 3 months you will have achieved 9 years on X. Your post really gives me hope for a long run on this.
@threetree great news that things seem stable and that labs and TM’s are looking good. However I am so sorry that you are still experiencing fatigue and hope that you may get a bit more energy with the change of season and as your body adapts to the lowered dose..
Wishing everyone in our little X team gets to do as well as @denny123 and as for as long.
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@threetree Hi there😊So glad to hear your markers look good! Hoping you start to notice a little less fatigue in time. Agree about the time frame when I start to slow down a bit also. Status quo for me, heading to MO today for usual monthly appointment. My labs were a little wonky last month ,heading toward anemia but I have had that with X in the past….nothing a little iron can't fix! Thanks for asking💕
Hi to all here, may everyone have a peaceful day.
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Congratulations on your stable scan. A spot on a CT that hasn't changed in years I wouldn't worry about, just like your oncologist advised. One thing to remember that often radiologists look at scans from us MBC patients differently and are just assuming that any suspicious spot is likely mets. I have been fortunate to have had the same radiologist read my scans over the many years but the occasional time when another one does they will alert a small spot in my lungs and call it suspicious. My oncologist and my radiologist friend always laugh because that spot has been there since 2018, same size with no change so clearly benign or not something that going to kill me anyway. It's just the nature of reporting.
As for the importance of avoiding added folic acid and folate rich foods yes thank you I think I may have seen a post about it someplace else and here previously too when I started reading the Xeloda posts. My oncologist actually told me to stop my multivitamin as I was beginning because she had me screenshot a picture and of course it contains added folic acid as I think they all do.
You have done so amazing on your long run with Xeloda. I'm tolerating it well so far too but my dose has been increased very slowly as I tested positive on the DPD deficiency lab test. I'm on a 7/7 schedule and last week was up to 2000mg daily. I will try going up to 2300mg next week and see how it goes. That is very close to the maximum dose that my oncologist thinks is safe for me. Sorry about your fatigue but just having cancer causes us to be fatigued and then add in all the treatments you have had over the years and it's no wonder. Keep on pushing forward. You are a true inspiration. Take care. Sandra
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@girlsptz Hi Sandra, good luck with your labs next week. I don’t typically get concerned with the low white & red counts and neutrophils have been good until this last lab visit. Do you get concerned at a certain low number(s)? Yeah I’m pissed at my oncologist too. I have 5 calls in and a message through the patient portal regarding this mess. I asked for an explanation on not receiving a heads up on the appointment change. I understand emergencies but lack of communication is not acceptable. I offered to keep the time slot for today as a telehealth but they ignored that. I gave them a week in Oct I am able to drive there and they said no availability. So I now am waiting for a patient advocate to help me with my transfer to a new oncologist.
Happy to hear that the 2000mg dose gave you no bad SE’s. Thanks for the info from ASCO Breast Cancer conference and Journal of Clinical Oncology regarding the 7/7 dosing. That is some encouraging news. Do you have a timeline with your possible increase to 2600mg? Depending on labs and scans? Keep us posted and I’ll do the same. Oh I am still achy but other flu like symptoms are gone. Thanks for asking. Marcia2 -
@ailurophile Sorry you did not get the schedule change to 7/7. What is the reason for not being able to change? I think I know the answer in general but just curious what your oncologist said. Keep me posted. Since I did get the reduction with no battles it makes me wonder. I am on 3000mg and no chance on lowering so maybe that is part of it. I hope this reduced dose is your answer.
@girlsptz I see now looking back that you are going to try going to 2300 next week. Glad you have a plan and hope the increase behaves for you! And I agree getting some exercise helps with energy level. And attitude.
@denny123 Glad your scan was good! Relief! Seems the techs or radiologists have their own language and each one words results differently. Sort of frustrating; just another thing for us to keep on top of. I wish I could blame a new system for this appointment mess up. I should have just gone to my 2:00 appt and pretended I never saw that they changed it! I am working on changing oncologist and new closer location. @threetree unfortunately in north central FL I don’t have many options. Hope you are doing well. Glad your labs came back stable. Happy Fall to you too! I am not as responsive on here as I would like. My brain fog is getting better though.
Hi to @chico @cookie54 status quo is good to hear! Hello to all of the X gang. You are all the best. Marcia
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Well I hope the patient advocate gets you sorted out quickly and finds you a compassionate and reliable new oncologist because you are definitely being treated poorly. Nobody deserves that least of all a person with Stage 4 cancer. Geez.
I don't really watch any particular number per se with reference to my CBC panel but I do like my RBC's to be good so that I know my body is oxygenating well…..especially when I go for my bike rides. I say that because in early May while bike riding with my hubby I all of a sudden blacked out and crashed into a old wooden fence. I ended up with a very deep lower leg wound but overall I was lucky as if my bike hadn't swerved that way I would have ended up going over a big ravine and would have been toast for sure. Turned out that my Iron and Ferritin had gotten dangerously low and I wasn't aware of it. I have a oxygen saturation monitor at home that my oncologist asks me to check levels periodically but I hadn't done it in a very long time so it caught me off guard.
Yes next week I will start the 1150 twice daily and if all goes well when I see my oncologist the following Monday she will ask me if I want to go up to the 2600 mg dosing. I'm still waiting for a PET scan date as there are only 2 machines where I live and one is broken down. I fear that because I have MBC I probably are not being prioritized as important. I'll lay low for now and get it sorted at my oncologist's appointment. I will demand a liver MRI if they can't get the PET scan sorted within the month of October. MRI's are also very difficult to book here so it's not an easy process to get sorted but I'm also not the type of patient that will give-up.
Agree that the bike rides are really beneficial for both exercise and mental health. I will ride daily as long as I can but winter will arrive before we know it here. I will have to switch to indoor cycling then which I really have trouble getting myself motivated to do honestly. please keep us posted on the new oncologist search and I hope your achy feelings improve. Take care. Sandra
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@girlsptz Hi. Happy Saturday. I’m still working on oncologist transfer. I’ll spare you the details. They have assured me it will all be taken care of. Geez for sure. But I know there are patients with more difficulties so I’ll deal but with persistence.
Blacking out is scary! And on your bike. Yikes. Do you remember it happening at all or complete blackout? I’ve had a few falls while walking. Partially my clumsiness and partially brain fog. And I have absence seizures also. On meds fir that too but don’t think they contribute to my brain fog. That is all due to X.
How has the 2300 dosing been for you? I know you have DPD so hoping all is well. Going to increase? Also status on PET or MRI? MBC not a priority? How is that so? Because we “have time”? I hope you get scheduling taken care of soon.
Walking more outside coming for me. Being in FL our nice weather is just about here. Sick of the treadmill although pretty lucky to be able to just jump on it. Oh one more thing. My new oncolgist they are trying to get me in with is a DO. I’m pretty excited about that. I’ve been wanting to go to a DO for my primary care for a few years. So for an oncologist I am pretty happy. Being a former nurse what are your thoughts? Curious…..Thanks for checking in. Hope you are enjoying your weekend. Marcia
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Thanks for your update and I'll trust that your new oncologist situation will be rectified shortly. I'm not that familiar with the DO physicians as there isn't such a program here in Canada where I live. Most are widely respected though from what I have read about them. I'm sure there are many practicing in Canada but I'm just not aware of any and in order to practice here they have to meet provincial licensing requirements and certification standards which means writing many extra exams here so it is not easy. Saying that though I would think a DO that has specialized in Oncology would probably provide a much more holistic approach to your MBC. You'll have to keep me informed as I'm intrigued.
Yes my bike incident with the blackout was scary. In answer to your question I only remember feeling weird as I veered off the path and then the next thing I remembered was hitting the fence. It had never happened to me before so it was very scary. Funny thing is I have been on iron pills ever since and just had my iron level rechecked this week and now my iron level is way high outside of normal parameters. Of course I have since stopped the iron pills which I was happy to do.
Today is my 2nd last day of the 2300 dose of my every second week of Xeloda and all is well. I haven't developed any side effects so I am pleased. I see my oncologist on Monday so we will have the discussion as to whether I want to jump one more dose up or not. I called her booking clerk last week as I didn't want to bother my oncologist about the PET scan booking problem but wouldn't you know as soon as I talked to the clerk she said that my oncologist has a note on my chart to refer any inquires from me to her directly….so a few hours later my oncologist called me. She hadn't been aware that there was an issue and said she would call them directly and get it dealt with. About an hour later an appointment appeared in my patient portal that I have an appointment on October 26th.
We are having a great weekend of weather but definitely the fall chill is in the air. I'm still able to do my daily bike rides outside on my ebike and hope I can continue that at least until the end of this month. Once it gets below freezing or snows I usually call it quits for the season.
Enjoy your walking outside but please do be careful. Have you thought about using walking poles. They are quite common here and great for stability. Just a thought. Take care and thanks for checking in. Hope all the other ladies are managing well too. Sandra
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Just wondering if you are doing better with your reduced dose? If it hasn't helped be firm with your oncologist that you want to try the 7/7 schedule rather than keep reducing the dose. I don't understand the reluctance to try something that has proven in literature to be effective. Afterall the goal is to keep us on the drug as long as possible and that having to change should be due to progression not side effects if possible. I hope you have been able to enjoy some time out in sunshine. Let me know how you are doing when you are able. Take care. Sandra
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Having bowel troubles lately, and have no energy. I continue on the dose reduction to 2600, but not sure yet if it's really helping or not. I've had far more constipation problems than diarrhea with this drug, and now I seem to be having troubles with slow muscle movement or something. It's been a week since a bad and very difficult constipation episode. I did a day of clear liquids then and that seeemed to make everything worse, by causing lots of diarrhea the next day. I gradually started adding food and am almost eating normally now, after a week, this morning I felt that same "muscles not wanting to do their job" again feeling, now that many things have improved and are getting back to normal. I've been in touch with my oncologists office, but they don't seem to think this is any big deal, if their attention to this matter is any example. I first got in touch last Wednesday when I had a horrible time with a diffficult bowel movement that caused sweating and a terrifying feeling that I was going to faint. They didn't get back to me until the afternoon and then didn't seem all that concnerned. Friday a nurse did call with what seemed to be real concern about what might happen going into the week-end, and I was really glad to have her call. She arranged to have another nurse call me yesterday (Monday) to follow-up. I messaged that nurse early in the morning, and she didn't get back to me until mid afternoon, said she was going to speak to the doctor about my situation and then call me back, but never did. I had told her that I'm now wondering if this isn't an electrolyte problem and we discussed the possibility of doing labs, but no further info from them. I think they are really short staffed lately, as this is not typical of them. It's been a week and I have gotten a little better, but have only added solid food gradually over all these days. I ate the most so far yesterday, and sure enough this morning, I started to get some of those feelings again about my bowel muscles not wanting to work proper;y.
Has anybody else experienced a lot of bowel difficulties with this? Not just diarrhea, but a whole range of difficulties? Have any of you encountered electrolyte issues while on this drug? I've found that a lot of the Xeloda side effects resemble the symptoms I have with electrolyte issues, but my labs haven't been all that bad.
Sorry for the long rambling post, but my brain is not working properly and I am extremely fatigued.
I also hope all of the rest of you are doing reasonably well and I care. Thanks very much.
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@girlsptz still nothing on DO/oncolgist appointment. Called them again and they told me they are working on it. Not happy. I am sort of surprised that Canada does not have DO designation because Canada seems ahead of us in healthcare. In my opinion.
How did your oncology visit go? What’s the update for you? I am glad you got your pet scan scheduled. Hoping the absolute best for you.
Funny you mentioned walking poles. I have some really cool wooden walking sticks that I just brought back out to use. They do help with the balance. Let us know how your visit went yesterday when you get a chance.
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@threetree I am sorry you going through this bowel episode. I am with you don’t feel alone. Since I have been on X I have had on/off constipation. Occasionally, it relieves itself by diet, and then I sometimes go through days of using lactulose, but my former oncologist was hesitant to let me stay on that. Her nurse kept telling me to use OTC stool softener, but that does absolutely nothing. So I just keep dealing with it the best that I can. It’s not a solution but it’s all I’ve got. As with you, they do not seem at all concerned about it. That makes me feel better on one hand, but also annoyed on the other hand. Also, as you said, it seems to be a bowel muscle issue, not a blockage or softener issue.
I have electrolyte issues as well. But not bad. Labs have been good. I drink as much water as I can and occasionally I do add a powdered electrolyte that does not contain sugar or fake sweetener. I also have been drinking some kambucha. That seems to help with the electrolytes and the bowl issues. I can say that the bowel movement problem has gotten better over the last six weeks. It’s a very slow improvement but I’ll take it.
Unfortunately, I totally understand your lack of response from your oncologist and their team. I am going through the same thing trying to switch oncologist at the same . I am getting no response. Literally after two weeks I am getting nowhere. I believe my area population is growing rapidly and cancer along with it. Under staffed and overworked. But we shouldn’t have to pay the price. Just my opinion. I’m thinking about you. Please let us know your situation when you can. I know the energy issue takes a lot out of you. I get it. So only when you feel like it, let us know how it’s going. Best to you always. Marcia0 -
@threetree I am no longer on Xeloda but am having the same bowel issues on Taxol and am really struggling. It is why I broke my leg—I passed out after straining. I almost passed out again on Sunday morning and ended up laying on the floor half-dressed instead of passing out. It took me a good 20 minutes before I was able to get up with help. I agree it feels like things are slowing down in that department. When I discussed it with my PA she told me I could take 3 Colace. (I see my MO every-other visit) but that is all the help she gave me. I do that now before I go to bed but still struggle. My cardiologist told me to increase my salt intake so my body absorbs the water I drink instead of just letting it pass through which is why electrolytes work, and I am working on adding fiber to my diet, but it is still a strain. It took me 30 minutes this morning to complete my morning routine. There has to be an answer somewhere! I thought about trying a liquid diet day but am hesitant, and am glad to read your results.
@girlsptz My PCP is a DO and I really like her (I live in the USA.) I am surprised Canada doesn't have that designation but I don't really understand your healthcare system. So I have a PCP that is a DO, an MD oncologist/hematologist for my cancer, and additional specialists depending on what I need. I am on Medicare which means I am over 65 and have paid into the medical system all the years I worked (since I was 17.) I still pay a monthly Medicare "fee" but my care and medicine costs much more than my fee. I have no idea which system is better, but mine works for me.
Thanks everyone for allowing me to still linger in this forum.
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@threetree I am sorry you are dealing with this. I have had on and off constipation since I started X in May. It is definitely a muscle issue not a blockage or softener issue. Mine has gotten better in the last six weeks. I was taking lactulose, but my former oncologist did not want me to take it continuously. Her nurse. constantly told me to take a stool softener, but that does not help. So you are not alone. And my oncologist and team had the same response as yours. They do not seem concerned about it. On one hand I take that as a positive and on the other hand, I find it very annoying that they don’t seem to have an answer. But I just go with it. Diet doesn’t seem to have a real impact, but I do try to eat well. Salads seem to help a bit so I eat them even when I don’t feel like it. And I do add an occasional powdered electrolyte to my water. It is sugar-free and does not have an added sweetener. Like forgotten you, my laps have been pretty good.
I’m having a problem from my cancer center as well. I’m trying to change oncologist and have been working on it for two weeks without any resolution. The population in my area is growing rapidly. And within that population, there seems to be plenty of cancer. So what used to take me a day or two now it takes me weeks. It is frustrating. I am guessing they are understaffed and overworked. But we shouldn’t have to pay the price. I’ll keep trying. And don’t you give up either! Check back with us when you can and let us know how you are doing. I know you are exhausted.. We all get that. Wishing all the best to you. Marcia
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Hi @threetree I have sent two messages to you and they do not show in this thread. Can you or somebody please let me know if you saw them? I am baffled! Marcia
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@intolight - Thank you so much for your response. I think it's lovely to have you continue on this thread with us. When I first read about your troubles, and then I had mine, I had wondered if it wasn't essentially the same issue (thank goodness I didn't break anything!), and I think it's because both Xeloda and Taxol are officially "chemo" drugs. Things like Ibrance and Verzenio and casually be referred to as "chemo", but technically they are not. I'm reading more and more about how all of these offical chemo drugs can do a lot of the same things to us, no matter which chemo it is. Also, there is something called "chemo belly" kind of like "chemo brain" that is supposdly a group of digestive symptoms that are caused by chemo, and I think we both might be experiencing that. I had never heard the term until recently. They call that sweating and fainting after bowel movements a "vasovagal response", as the pressure in that area apparently hits the vagus nerve and causes all those problem. Both my nurse and what I've read (and experienced) say that a vasovagal response is terribly frightening, as we both found out. I actually wasn't straining, as I consciously try to not strain. It was just the general pressure from "going" that seemed to set things off for me.
One of the reasons I'm waiting for the Nurse Coordinator to call me back, is to see if they recommend anything like your PA did. I'd rather not take anything, but I would like to know what they think. A lot of my liquid diet day consisted of electrolyte drinks, along with broth and ginger tea, etc. Turns out all that liquid didn't agree with my gut either and it just gave me a whole next day of diarrhea, so I wouldn't do it again. I also read later that clear liquid diets don't do anything for constipation itself. I've been much better just eating small, bland, and generally soft food, instead of anything else.
I'm not surprised to see what your cardiologist told you about the salt and electrolytes. I do a lot of reading and that's essentially what I read too, i.e. that the salt holds in the water so bowel movements don't get too loose or too difficult. Sodium is often low on my labs and I'm one of the rare people that's been told to add more salt, not cut back. The electrolyte drinks have sodium and I also add lots of salt to already salty things like canned soup and broth. I still wind up low when they do labs. Sometimes I need to get an IV drip, and I've been wondering if that isn't part of my issue here. I won't know until they call me back.
I'm really sorry about your troubles in this department too, and I'm just so glad your leg is getting better with no complications. It reminds me a lot of when I fractured my shoulder 2 years ago. It wasn't a bathroom issue, but I tripped outside on a sprinkler head, and then when I tried to get up I started to faint, and that of course was frightening. 911 had to come, but they did let a friend come and take me to the hospital, as they said I wasn't so bad that I had to go with them. I too didn't need surgery and things started to heal pretty quickly and smoothly. The orthopedist didn't even want me to do PT for fear they would get overzelous and mess up what was a good thing at that point. Your leg issue seems to be following a similar patter. I wish you the best of luck with that, as you continue to heal.
@marcials1 - Marcia hi - I don't know anything about any other messages. It's possible that I got them, but just wasn't able to respond due to feeling awful, but if you can't even find them on the thread, then maybe they just didn't post for some reason. I'll think some more and look around a bit.
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@intolight - Here's an AI general overview of "chemo belly". I think this could be our basic problem, with probably other involved factors:
AI Overview"Chemo belly" is a non-medical term used by patients to describe a group of gastrointestinal side effects caused by chemotherapy, such as stomach bloating, gas, pain, cramping, diarrhea, and constipation. [1, 2]What Causes Chemo Belly?
- Cell damage: Chemotherapy targets fast-growing cancer cells, but it also harms fast-growing healthy cells that line the digestive tract.
- Microbiome disruption: The drugs can destroy beneficial gut bacteria, leading to poor food digestion and increased gas.
- Digestion speed changes: Chemo can cause digestive muscles to move food too quickly (causing diarrhea) or too slowly (causing constipation and bloating). [1, 2, 3, 4]
How Long Does It Last?
- Short-term: For many people, symptoms improve and resolve shortly after chemotherapy treatments end.
- Long-term: In some cases, gastrointestinal issues or mild bloating can persist for months or even years post-treatment due to prolonged nerve or tissue sensitivity. [1, 2, 3, 4]
How to Find Relief
- Dietary adjustments: Eat smaller, more frequent meals, and avoid high-fat foods, carbonated drinks, chewing gum, and drinking through a straw.
- Gentle activity: Take short walks after eating to help stimulate digestion and release trapped gas.
- Medical consultation: Speak with your doctor or oncology care team before taking anti-nausea medications, anti-diarrheals, or probiotics to ensure they are safe for your specific treatment plan. [1, 2, 3]
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@threetree YES! Chemo belly describes my issues exactly. Thank you. I try not to strain but sometimes it hurts so badly I just want it out…
I have already given up fried foods and eat small meals. I know I need to walk more. Now that my leg is almost healed I can increase my walking. The problem is the cold and snow are coming (I live in Colorado at 7000ft) but we do have a rec center in our housing tract and I know I can get my DH to go with me since I no longer drive. I could probably drive that far, but would rather not…
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@marcials1 Thanks for your update and all I can say regarding your waiting for a new DO/Oncologist is 'Patience is a virtue I guess' but I certainly hope they come through very soon and keep reminding them.
My appointment with my oncologist yesterday went well. We had a discussion about whether to increase up to the 2600 mg dose and after much thinking I said I would try it as I haven't experienced any side effects up to my last dose at 2300 mgs. She told me that if I start to feel anything off to simply revert back to the 2300 mg dose. So I'll start the 2600 mg dose after this 7 days off and go from there. I asked her if she had a maximum dose for me in mind and she said technically it would be somewhere around 3800 mg but I quickly intercepted and said that in my mind my maximum would be 3000 which is in line with the literature from the ASCO conference sharing regarding MBC. She respects my opinion so I'm not worried about disagreeing should that time come. However let's be realistic, it really depends on what the upcoming PET scan shows. I also discussed that I wasn't impressed that my PET scan was so late being booked and neither was she. I have stayed at the center that I always went to for scans since 2018 as I know all the staff there but we opened a new cancer center in October of 2024 and for my end of January PET scan my oncologist and I said that we should plan to attend the new cancer center scan department. The machines are brand new so I shouldn't have to deal with them breaking down(well at least hopefully not).
Glad you pulled out your walking sticks and are using them. It really is better to have safety on our side and realistically nobody questions anything these days not like years ago when someone you knew might ask why are you using those? Onwards we go.
Sandra
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Gosh I am so very sorry to hear all that you are going through with your bowels. Sounding truly agonizing and I feel for you. I know @intolight mentioned taking Colace at bedtime and that is a great suggestion but I didn't see either of you mention that you took MiraLAX. If you don't I would highly recommend it as it is a safe osmotic laxative that uses the water you drink to pull it into your colon to soften stool and help it pass easily. It is safe to take both of them concurrently. I am so concerned with both of you mentioning straining so hard that you have passed out or feel like you will. Your medical team should show more compassion about this issue.
Sandra
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@intolight - "Chemo belly" it is! I've actually had small here and there episodes of this kind of stuff ever since I started the drug, but last week was the worst, and even after a dose reduction. I know what you mean about just wanting to strain, but so far I've not done that. I get the feeling that my muscles just don't want to do their job and are working at half speed or something.
I'm continuing with the small meals and electolytes and that does seem to help. I actually had a fairly good walk just before I got back here and saw your message. I didn't get as far as I usually do, but it was still substantial and I also stopped in a grocery store for a couple of things, so better again today.
I also came back to a MyChart message from the Nurse Coordinator and she says they want me to come in for labs today, but I told her my car needs to go to the shop and I'm dependent on a friend who's not available today, so maybe I'll go get those labs tomorrow. I'm wondering now if I won't keep getting better and the labs won't show much. Oh well.
Wow, I knew you were in Colorado, but not at 7,000 feet. That seems quite high to me. I'm in Washington State and I think Mr. Rainier here is a little more than 12,000 feet or something , and 7,000 is more than half of that! Half way up Mt. Rainier gets pretty snowy and blowy. I hope your efforts to get some walking and other exercise in this winter pan out. That rec center sounds like a good safe option in the winter weather.
@girlsptz - Thanks for your thoughts. I have heard from doctors, etc. that Miralax is probably the safest and gentlest option, but I've also read not to take anything before checking with the oncologist. I might be doing that tomorrow. Also, straining isn't really my problem, it seems more like very sluggish muscles that can't handle anything more than a little bit at a time - to much info, I know. I really appreciate your concern and suggestions.
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@threetree Interesting— I was told Colace was the safest. Perhaps it is because there are a couple of versions of the meds. One is a stool softener only and the other has laxative in it. If you are going to ask tomorrow, see if they will differentiate between the two versions. I have taken Miralax before and felt it was harsher, but now I don't know which version. I will ask my MO when I see her on the 22nd. I don't see my infusion nurse for another week as this is my off week of chemo (2 weeks on and one week off.) I usually get any answer on my portal so perhaps I can message the nurse also.
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