All about Xeloda

Hi Eleanora I am a newby to X & only on my 3rd month although I am over 10 years MBC. I am also a vegetarian and still eating folate but avoiding folic acid which is added to all enriched white flour commercial breads, cereals, grains, pasta, biscuits, cakes and many other foods. I have carried out a lot of research on foods and as folic acid is not always printed on wrappers etc so I have asked in store for clarification. I do think we are all different and that some people will tolerate things that others don’t and age, weight and dose probable also need to be considered. Hot weather and the wrong shoes also has an affect on our feet. So far my s/e’s are limited to a bit of tingling of my feet. Good luck to you.

@chico

So glad to find another vegetarian! It's been easy to identify fruits that are okay to eat, but struggling with vegetables. Are there varieties of lettuce that you find acceptable? Have requested a dietitian consult but haven't received a call yet. Will continue to search.

Glad that the se's are mild for you so far. May they continue that way! What dose are you on? Is your schedule 14/7 or 7/7? I am starting at 2500mg/day, 14/7. Have you modified your daily activities? I was given an information sheet from my MO that said not to use garden tools, screwdrivers or anything that would put pressure on my hands. Unrealistic for those of us without household staff. 😂

The fact that you have succeeded in fighting MBC for 10 years is very encouraging. I have managed 4+ years so far and would welcome another 6.

@denny123 I have to say the only time I had pain in my bones, was at the very beginning when I was looking to find out what was wrong with me and then the diagnosis of stage IV BC. Since then, with all of the meds I’ve been on I have had no pain at all. I feel pretty lucky about that. Having the mets spread to various abdominal organs has me somewhat freaked out, but I’m trying to remain calm. Thanks for your response and I wish the best for you.

@elanora I love that you ride your stationary bike everyday! That is awsome. I need to get on my treadmill more! I live in the south as well and it is absolutely way too hot. And it’s been raining like crazy for the past week or two. Luckily, knock on wood, I do not get the hand/foot syndrome bad. Just a little bit and manageable. Good for you on travel plans ~ Enjoy your trip!

@marcials1 Folic Acid causes the burning and infections in your feet and hands. When I was OD'ing on folic rich foods, I didn't have nausea or vomiting. But my feet were terrible. There's a scientific reason for it, if you google.

@denny123 Thanks for that info.
Marcia

@eleanora I have been on Xeloda for 8.5 years and hve never taken a cold shower. They are always comfortably hot. In my opinion, I would hold off on the Voltaren since it can be harmful to the liver. And it is supposedly to help with the burning feet. But since my diet consists of low-folic foods, I don't have burning.

I will try to post the foods that I eat. And although I am eating less folate, my folate blood levels are always normal.

Sorry for the big font, but this is how it shows up from my documents.

@threetree

have been watching the news about the fires in the PNW and hoping that they are nowhere near you. Please check in and let us know if you're okay.

@eleanora No way in he** would I have survived on X taking a cool/ cold shower lol. I take my usual hot shower but when I do have a flare up I will turn the water to cold and rinse my feet at the end. Glad you are receiving all your requests as you deserve it. I have used many creams all which have been listed here previously and I think you will have to see what works best for you! Who knows you may not even have any signs of HFS.. fingers crossed. You’re very welcome, our summers are spent boating and I would hate to give that up to X. One step at a time, you’re armed with lots of valuable info and we’re all hoping you too can ride the Xeloda wave for a long time!🤞🏻🌊🤗

@eleanora Meanwhile, women are going to have additional health problems from the overuse of Voltaren. Goodness knows what would happen to me if I used Voltaren for my 8.5 years of Xeloda. For my first 2 years, I bought several of the ice socks and gloves to ease the pain caused by my overuse of spinach.

@eleanora - First, I just want to wish you all the luck in the world as you start Xeloda, and I hope your first day yesterday went well. Please keep us all informed as to your progress.

Apologies in advance for the long post:

I also want to thank you for your message about how I'm doing with the fires, etc. The fires are east of the mountains and I hear it is really bad for people over there. Countless had to leave their homes on a moment's notice, and don't know what they will return to. No one has died, thank goodness, and they also say there are no known cases of any severe responses/illnesses, due to all of this. Some of the smoke has of course travelled over here to the west side of the mountains, and it is a bit problematic, but not what they are dealing with on the other side. This is the 4th day of smoke for us over here I think. The first day seemed like no real big deal to me; air quality was in the "moderate" range and I took my walk and even sat outside on my balcony quite a bit, as usual. By late afternoon however, I did start to get a bit of a runny nose, dry cough, and sore eyes, but I didn't think too much about it, as we've had smoke here before. The next couple of days though, the air quality went into the "unhealthy for sensitive groups" (east of the mountains it's just plain "unhealthy"), and I did notice a lot of fatigue, some headache, and a continuation of the runny nose and cough. I've been just fine breathing wise though, thank goodness, because my last scans showed some residual junk in my lungs from the RSV I had in April.

As the days have gone by, I've been fine by most standards, but I have noticed I've gotten progressively more and more tired, so haven't been able to post all that I've wanted - especially on this thread. The air quality is ever so slightly better today (back to "moderat" this morning), and the temperature is a degree or two lower. We've been in the mid to upper 80's, and now today, lower 80's. As I type this, I am getting a headache, more fatigue, and sore eyes, but I also just took my first pills of an "on week" for Xeloda, so who knows? All I know is that I am so dog tired these days that I can hardly do anything. I have all sorts of things I want to pay attention to, and take care of, but just can't. I did manage to walk every day this week, but have decided to skip today. The fatigue caught up with me, and there is still some smoke. I went over to our farmer's market yesterday (about a 4-5 block walk) and was extremely tired when I got over there and figured it wasn't the wisest decision I'd made in a while. Wasn't sure I had the energy to buy a few things and walk back, but lucky me, I spotted an ice cream vendor and got a dish of some good ole plain vanilla; sat down on a curb in the shade, and got cooled down and energized enough by that ice cream, that walking back home wasn't a problem. They say the smoke will clear gradually, and the temperature should go down a little more too over the week-end, so I'm not too worried. I just feel so very badly for all those people directly affected. There are fires in Eastern Oregon too, doing the same sort of stuff there. I read that our smoke and Oregon's are travelling down to the Bay Area even. The eastern parts of Washington and Oregon are much different than the western sides - they are very hot and dry over there, so they get more of this fire business, although one of these fires at least, was deliberate arson.

Well, I decided to skip my walk this morning, so maybe that same energy is what I am able to put into this unfortunately long post here. I will still try and get back to peope who kindly posted information for me way up the chain here now. My apologies to so many, but I just got way too tired and brain foggy to respond as I would like to have. My onc has offered a dose reduction and I am still trying to decide whether to take it or not.

@aj -Thanks so much for the Voltaren/ASCO link. Also, how are you doing with the smoke? I know it's not too bad for us here on this side, but it still does have an effect. Really hope you are doing OK with all of this - hanging out by the beach and pool would really help get better air. Maybe that's what you're up to? ☺️

We had some smoke here and yesterday I stayed inside all day. And it was hot so the house was stuffy. Annoying. Today was better, smoke is lifting. A few days ago I went with a friend to Mt Rainier and the smoke really affected the view. Then yesterday I read that that whole area is closed because of fire danger. ( Sunrise and White River). I feel really bad for the people living in the fire areas.

I use Voltaren every day.

@aj

Sorry you're having some bad air from the fires, but glad you're generally okay.

I need to ask for some help from my "advisory board" here (you, @threetree @cookie54 @denny123 @soldanella @chico ). For those of you who have been on Xeloda for a while, can you remember the side effects you experienced in the beginning and how long it took you to adapt? When I started Kisqali 4 years ago, it took about 3 months before I felt "normal", but the only side effect was intestinal cramping and diarrhea and I learned to manage that with Immodium. This time I have severe fatigue to the point that I accomplish nothing. I got up at 11:15 this morning and my eyes are closing as I sit here at 2:00pm trying to type. Last week I was riding my stationary bike for 45 minutes each morning, walking outside and cleaning the house, Yesterday the nausea became so intense that I couldn't even sip water and was concerned that I wouldn't be able to eat enough to take the evening dose. I took 4mg Zofran and another dose 4 hours later, but the nausea didn't resolve. Luckily, I was able to reach my internist at about 7:00 pm and she told me to take 8mg of Zofran every 8 hours. She also recommended that I get scopolamine patches. About an hour after the 8mg I was able to eat some applesauce and plain crackers and take the Xeloda.

I slept 12 hours, although woke up several times feeling unwell. I'm trying to get some perspective as to whether I should just persevere with the hope that the effects will lessen or whether I will always be this way. I asked my MO about the experience of her other patients who have been on Xeloda and she shrugged and said "everyone's different". Please tell me there's hope.

@eleanora - Oh, I am so sorry you are struggling so soon - and on 2500 mg also. Off the top of my head, I would say give it some time. I have found that the side effects from this come and go and they are highly variable and erratic. You might have one problem one week, but not the next; but maybe something else. I sure wish you could have started with 7/7. I wonder why they had you start with 14/7? I do 3000 mg a day 7/7 and do not think I could have done 14 days in a row at all, but many have. My worst side effects so far are the fatigue and just some bowel cramping and erratic bowel behavior. No real diarrhea, no real nausea. I think my lack of some of those side effects is due to eating 6 oz of plain probiotic Greek yogurt every day, with a banana, and having a good serving of fresh probiotic sauerkraut every day too. I usually have the sauerkraut with lunch, and the yogurt as an afternoon snack. I also didn't have a lot of nausea and bowel trouble with Verzenio and Fulvestrant, and I think it was for the same reason.

I did have some gastrointestinal trouble on my last "on week" and I just did a couple of days of broth and applesauce, etc. and then started adding things back, as I moved into my off week. That seemed to have helped. Now I'm 2 days into my current "on week" and not having trouble except for the fatigue and a little cramping. It's been about 7.5 months since I've been on the drug now, and again, some weeks are better or worse than others, it doesn't settle down into anything predictable like it was with Verzenio and fulvestrant. I totally understand the "eyes closing" as you were sitting and typing. That happens to me too, but it's another on again, off again thing that I cannot predict. I am starting to connect it to an after eating thing (post prandial hypotension) where my blood pressure drops a bit, and I feel like I'm going to drop, after eating. It eventually goes away. Sometimes I sit at my computer and feel like I'm "really" asleep, but just somehow sitting up. That has been happening less though.

My walks too are different since Xeloda. I used to go for over an hour and could bound through them at times. Now I go for more like 30 minutes and I trudge through it. I'm just glad I can do a meaningful walk of any kind right now. I know exactly what you mean about the stationary bike and house cleaning. The fatigue is the biggest problem for me and I have yet to figure out a way to really tackle it, except by pacing myself. I take shorter walks, the come home and sit up in bed for like half an hour, then I get up for something like half an hour and do a few dishes and make something to eat, then back to sitting either up in bed or at the computer; then back up to clean the bathroom a little, etc. It goes on like that and at least I get a little done.

You might see if you can switch to 7/7, as that week off, while it isn't great and you don't actually feel a lot better, does let you keep from getting worse, so to speak, and you can re-set a bit.

Well this is getting too long, so I will stop here, but am also sending encouragement, hope, a "hang in there", and a hug!

(Also, just a little side note - I'm so sorry I didn't bet back to you sooner after a previous post about how you were going to be starting Xeloda and had concerns as a vegetarian. I was going to tell you to check with @chico, but she thankfully beat me to it and got in touch with you. This fatigue has prevented me from being up on all of this and keeping up with posts, etc.)

@eleanora - ThreeTree here again; just wanted to add that my understanding is that they like to give this about 3 months at least, and then do scans to see how well the drug is working, so if you can, I think it would be worth your while to keep at it. I also agree with @denny123 about the CBC and metabolic panels getting done. (I'm sure your onc will have this planned on a schedule.) The drug lowers red blood cells so you get really tired. You can become anemic, but you can also be super tired and not anemic, according my onc. He says that even if your red cell count is low, you are not anemic as long as the hematorcrit and hemoglobin labs are in the normal range (as in my case). They say that the generalized mental and physical fatigue is due to your body having to put so much of it's energy into metabolizing the drug. Apparently it takes just about every ounce of energy in our bodies to process the drug, so there isn't much energy left for anything else. More good wishes for improvement, and more hugs!

And me again. I forgot to mention about my post-prandial hypotension, like threetree. After I eat a meal, my BP can go as low as 70 systolic and I can barely move. I have learned to eat less per meal, which is really hard for me since I am still hungry. But I am working on it.

My PCP does a very extensive bloodwork test every 6 months and she often catches things that my oncologist doesn't think of.

I have been drinking Ensure daily, but I don't know if it is really helping me.

I don't know if you all are aware of this….but on your off week, you should feel worse. That is because you then have the full dose of Xeloda accumulated in your system. So actually during your "on" week/weeks, you should feel a little better. And you should definitely ask to go onto 7/7.

One of the studies that I read stated that the high-folic foods actually make the side effects worse since they enhance the efficacy of Xeloda. Another reason to watch your folic intake.