All about Xeloda

@threetree Sorry—slow brain. I live at 7000ft on the eastern plains out of Colorado Springs. Denver is is actually lower than us, at about 5280 ft. We don't feel high unless you try to run (LOL) but I am on oxygen 24/7 because my body is just too tired to pull enough O2 out of the air at this elevation. There are a lot of us cancer patients at the cancer center with our little machines. I don't need it at sea level, but we choose to live here because of family and my DD's job. I am so used to it I tend to forget about it at times. One of the reasons the Olympic Center is here is because the athletes can train at this altitude and it gives them endurance. I can see the Air Force Academy, Pikes Peak, and Norad from our back patio.

@threetree

Absolutely I should have mentioned to of course check with your oncologist before adding anything new to your routine. To me that is a given statement but sorry negligent of me not to mention. You are correct Miralax does not address improving or strengthening sluggish bowel muscles if that is the case. Since Miralax is gentle and works by osmotic action it doesn't cause bowel muscle peristalsis. Often a prescription motility agent may be needed short-term. All these questions can be addressed to your oncology team or if you have access to an oncology pharmacist they can be a wealth of information as well. Good luck and I hope your situation resolves soon.

Sandra

@cookie54 - I was hoping this would be an easier treatment too, and during the first few months it was. I've been slowly on the mend here, doing lots of Pedialyte and smaller amounts of mild, more bland foods. Wouldn't dare do any fresh fruits or vegetables at this point, or anything spicy, heavy, etc. I'm gradually getting better, but I still don't feel "normal" yet. I'm supposed to go get labs later today and we'll see if they say anything. Now that I'm getting somewhat better, I'm not sure just what the labs will look like. It has seemed a lot like an electrolyte problem, that's been causing the digestive problems, but who knows? The staff at my clinic seem to be super busy and overworked these days, and it's taken a few days just to get this appointment for labs going. Since it's not an emergency, I think I've been lower on their priority list, which is OK, but …

@intolight - I know what you mean about doing better, but still not being up to par. Like you say about how things might go as the day goes on, I have found that sometimes after I'm up and around for awhile, I do better. I hope you're able to get your errands taken care of - oh, finding that energy can be really hard and even impossible sometimes! Wishing you luck.

@intolight - That sounds like a real good idea. I've never had the patience to try and journal/diary all this stuff to note patterns, etc. I'm sure it would be a big help though. I've been feeling better the last couple of days, but have still stayed away from a lot of the usual food I eat, and I'm afraid to start adding it (fresh and raw frutis and vegetables, whole grain bread; higher fiber stuff). I think a journal could help sort that stuff out, but again, I just can't concentrate and focus enough these days to keep something like that up. I commend you for having the energy and attention/focus to do this. I really hope it helps.

I had labs today and just like I figured, at this time, the electrolytes are not that bad. The sodium is still on the low side, but not concerningly low, but I've spent the last week downing electrolyte drinks, and eating very lightly all day every day. I think it had a positive effect on my electrolytes and digestive system, and that that is likely why I've been feeling better the last couple of days. The nurse called and said things looked fine so they don't think it had anything to do with my electrolytes. I asked her about the fact that I had been overloading myself on Pedialyte and coconut water, along with drinking all sorts of salty soup and broth, and adding a lot of additional salt to it all for a whole week. She just said, "We'll never know if that was the problem, but just keep monitoring and let us know how you are doing." I'm wondering if I wouldn't have done better just going to urgent care a week ago when I had that really bad day. They just jump on things, whereas messaging the oncologists office always turns into this drawn out ho-hum sort of thing, over a number of days. I'd really like to know just what the original nature of my troubles has been, but since they took so long to do anything, and in the meantime, I did a lot for myself, I think the nurse was right, and I will likely never know just what happend. I'm still not tip top, but I'm a lot better yesterday and today, and very glad for it.

@girlsptz I am wishing you the best on the increase to 2600. Please keep us updated on how that works for you. I am hoping 3800 is not in your near future. I’m on 3000 and I feel like that is enough for me! However, of course if they do recommend higher I will give it a try. I’m just grateful to be on the 7/7 versus 14/7. Game changer. Until I can get a new lab work date and a new oncologist, I just have to keep taking the meds in hope that they are doing their thing. About those walking sticks….I am sure in the past I would be stared at or asked Why are you using those sticks?! Now, even if somebody did ask me, I wouldn’t care. Getting older has it’s good points! Take care. Marcia

@girlsptz hi there. I just sent you a quick message and it’s not showing up on this thread. I am having issues with getting posts through and I don’t know why. So in any case, I am going to try to resend tomorrow. Have a good evening. Marcia

@threetree

Glad to hear that you have been feeling better the past few days but it sucks that you can't enjoy some of the foods that you love. I think we can all appreciate being scared to reintroduce back foods that caused you to have so much distress. Good news on your labs but as you say unfortunately it doesn't help giving any information as to what caused your issues and doctors in general tend to just move forward if issues have improved. Having a low sodium at least means you are keeping yourself hydrated despite all that you were feeling. I hope you continue to improve day by day. I'm rooting for you. Take care. Sandra

@aj - That's interesting, because I have wondered about the diverticulitis issue too. My scans always show that I have those pockets, etc., but I've never had a known flare up. I don't know if my oncologist considered that as a possibility when I complained about my symptoms or not. I am getting more scans next week, so maybe they will show something. I'm going out to lunch tomorrow with a friend and going where I can get some soup. I'd love to get a salad to go with it, but like you, I am also terrified to do anything like that.

I"m very sorry that you got that diverticulitis and I'm really glad to hear you are doing better, but what an awful thing to have to experience. I've heard it can be very bad. Here's to continuing to get much better real soon! Please stay with us here on the Xeloda forum if you want to - it's always so nice to hear your thoughts.

@aj - Interesting about the familial thing with the diverticulitis. I remember my father said it showed up on his scans too, but like me so far, he never had any kind of actual flare up. I don't know about other famil memebers. I seem to have gotten a lot of my father's genetics. Re the salad seeming scary with digestive problems, I ventured out for some yesterday. I went to Ray's (you probably know of it) with a friend and we both got clam chowder and ceasar salads. I only ordered a small one and only picked at it, but as of this morning just that little bit hasn't make anything worse. I brought the rest home, and might pick at some more of it today, again just to see how things go. That chowder though, really hit the spot! Really glad to hear that you are back to eating regular food and that you're planning to stay with us here on this thread. Good news all around!

@threetree

Same problem with bowel movements! My GI doctor suggested taking Citrucel, and it really helped. It takes about a week to feel the relief. I hope you feel better soon!
I should mention that I had a full two weeks of constipation and severe diarrhea during my rest week. My GI doctor said Citrucel works for both conditions, but for me, it only helped with getting things moving. I managed the diarrhea with Imodium.

• @marcials1

Hi Marcia. Hope things are going well for you and that hopefully there is some movement on them getting you a new oncologist. I'm midway through my first week of the 2600mg dose and so far everything is good. No side effects to speak of and I'm vigilant with my hands and feet moisturizing. Have been out daily for my bike rides and trying to get to the milestone of 16,000 kilometers. I think I need about 13 rides to accomplish that so I have to hope the fall weather holds up for me to get it done. Hope you are still getting out for your walks as well. Looking ahead to my PET scan on October 26th and just hoping so much that Xeloda is working and I can continue on it for a long time. Fingers crossed. Update me when you can as to how you are doing. Sandra

@aj

I was happy to see with your last post that you were feeling better and your GI issues were resolving. I hope that continues to be the case. Diverticulosis is very common and especially as we age. Diverticulitis though isn't as common and definitely is something that runs in the family. Something you have to try and keep on top of so again good fiber diet(I know easier said than done when chemotherapies interfere) and always stay well hydrated. Have you started your Doxil infusions yet? If so I hope they are going ok and if not I'm sure you have a start date as to when you will get your first. How often is each dose given? Curious as to if you have gotten a implantable port for the infusions to preserve your veins? So many questions…sorry but I just generally would like to see how you are doing since you stopped Xeloda and I am glad you are staying on this forum too. Best wishes. Sandra

@threetree

Hoping your bowel issues are more controlled for you as well. May I ask what dosage of Xeloda that you take? When I read your post about the clam chowder and Caesar salad it made me very hungry. I'm glad you enjoyed it. You also mentioned you were getting some scans soon. Hope the results are what you had hoped. Take care. Sandra

I have been taking this form of Vitamin B12 in a supplement form since I was diagnosed in 2018 on the recommendation of my oncologist. I've only been on Xeloda for just around 3 months yet but I certainly am happy to read your comment. It makes sense because methylcobalamin is associated with nerve health and neuropathy. Often prescribed and targeted for peripheral neuropathy, diabetic neuropathy, and nerve regeneration because it is already active and does not require bodily conversion. Always great to hear I am doing something positive already without knowing it and I certainly am doing everything I can to avoid HFS. Thanks for sharing. Sandra

@ailurophile - Thanks so much for the info about Citrucel. I generally try to stay away from the OTC stuff, and the prescription stuff, if I can, but I do have some stuff around here like Pepcid, Gas-X, Tums, Imodium, etc. and will take them if it just seems like nothing else will help. I can add Citrucel to the mix. I usually try to just do things like ginger tea, soda crackers (saltines), dried fruit, and things like that for any digestive issues, but sometimes they can get to be just too much and that stuff doesn't work. So glad to read that the Citrucel worked so well for you. Interesting, my worst trouble all started during my week off also. I gradually improved a little on the next week on, and now I've just finished another off week. This one has been much better, and the digestive issues are better, but I still can't quite eat what I was eating. I need to do a lot of bland stuff and well cooked vegetables. The only fruit I've been comfortable with so far are bananas and applesauce. Tried to do a small amount of blueberries today, but they sent me to the bathroom. Overall though, I am much better. I sure hope you get to do the 7/7. I honestly don't think I could take this drug for 14 days straight!

@girlsptz - My dose is currently 2600. It started at 3000 last January but by mid summer I was having some issues, so I've been doing this dose reduction for a little more than a month now. Not sure that I notice a lot of difference, except for a little with my feet, and actually they've never been real bad. Just a little red, and some dry calluses that crack, but no major peeling. They do get sore sometimes when I take walks, but it's "doable". It's even a little better now with the dose reduction, but my fatigue and digestive issues aren't noticeably different. I'm not sure it's been enough time yet to really know. They say this is all cumulative, and it took about 8 months to get to the point where I needed the dose reduction, so it wouldn't surprise me if it takes some time to get to a place where the side effects are noticeably less too. Wishing you some clam chowder and ceasar salad!

@cure-ious - Very interesting about the methylcobalamin. Is this a prescription only thing? I eat lots of fish and go out of my way to get a lot of B12, but I'm sure the form here is different and probably not accessible just via food? It sounds like something well worth exploring more.

I've got scans tomorrow morning and am of course hoping for nothing but the best. Oh the scanxiety is awful!

have a good evening everyone and also a good week-end. I'm really enjoying the change to fall and hope the rest of you are too. It's just so pretty out there!

@cure-ious thank you for sharing about the B12 and effects on reducing HFS. Do you remember the trial you read on? I was hoping to ask my Oncologist and Chemo Pharmacist if this is something I could take to help manage HFS. Thank you!