All about Xeloda

Does anybody else get body tingling/paresthesia with this drug - particularly in the back, arms, and legs? I'm on the last day of my current "on week" and have been getting increasing tingles all week long. There are other possibilities for this tingling (bad muscle strain about a week and a half ago, bad sleeping position, rain and osteoarthritis, and possible low electrolytes), but since it's been increasing all week, as I've taken the Xeloda, I'm wondering if there is a drug side effect/toxicity connection. It is listed as a possible side effect on published drug information lists. I'm going to see how it goes now with the off week coming up. I'm also seeing my oncologist next week for a routine follow-up and I might ask him what he thinks, but I'd like to know if any of the rest of you are familiar with this possibly being a Xeloda thing, as I pursue the possible cause. Thanks much!

hi @denny123 thanks for the high folic foods reminder! I didn’t know that it made the Xeloda less effective. I hope you are doing ok on blood thinners and that is working for you.

I have been very random on my communicating lately. I’m on my off week and feeling a little better. Glad you are able to garden. I love to get out in my yard and garden but Florida summer heat only allows for a bit in the morning. Let’s enjoy what we can!

@cookie54 sounds like X is working great for you. I love to hear that! Keep going!

Hi ladies, I saw a post but cannot find it - Someone was asking about tingling sensation. I get it in my feet only. Mainly on bottoms and not too bad. I rub my feet and hands regularly with Udderly Smooth for all of the hand / foot issues. I also have blisters now because I refuse, while I can, to not give up on my walks! Also the info I saw on special socks is good to know!

Two random questions: 1) does any one know of another website where I can find info on women dealing with mets spreading to the peritoneum? It’s not very common at all and I unfortunately am one of the few to develop it. Lucky me. There was a thread here but no posts recently. It is a not so great prognosis so if anyone has info on other sites sharing this not-so-fun prognosis would be appreciated greatly!
2) is anyone else on this thread on 14 on / 7 off schedule? And anyone else on Xeloda only; no other meds?

Thank you all for your help here. I’m beyond grateful.

Marcia

Has anyone had a UTI on Xeloda….

@bigred62 , @marcials1 - Many thanks to both of you for the information re your tingling. I think the tingling, mainly in the feet and hands is some kind of peripheral neuropathy from the drug. I get that a little bit too. I have been experiencing tingling in my back muscles though, and then sometimes down my arms. Also, down my legs, but after I've been sitting, so maybe sciatica? I've been reading that the tingling can be from muscle strain (which I've had) - all the way to spinal fractures, so hard to know. I'm thinking that mine has been primarily from muscle strain - they say it presses on and irritates the nerves when muscles are inflamed, hence the tingling.

Another factor that I've become much more aware of has been the weather changes. Apparently atmospheric pressure, incoming rain storms, low barometric pressure, etc. can really wreak havoc with your muscles and joints. I have so many old fractures in my spine, ribs, and sternum, that I think that's having a lot to do with it. We've had some real unsettled weather here the last couple of weeks, and I think it might be a big part of my problem, along with the drug, as I understand it can exacerbate already sore joint and muscle pain. My whole rib cage has been sore, and after driving to the clinic for a blood draw on Monday, I got out of the car and became real lightheaded and spacey, with lots of bad aches and pains. This morning is calmer and more stable here weather wise, and I think I can already feel some difference. Not quite as achy or tingly at least so far, but I've only been up for a couple of hours.

I'm seeing my oncologist later today (a friend is driving me thank goodness) and I'm going to ask him if he has any ideas about this stuff. Scans would show new fractures, but I don't get those until mid July, unless the oncologist decides to change that due to what's going on now.

Re Xeloda, my blood draw on Monday showed continued stability so far.

Hi @aj

My tumor markers fluctuate up 5 down 7 up 10 down 1 etc, etc, so they call me a flucturater, it can be caused by many things like inflammation in the body or things like endometriosis which I have. My scans are steady with no progression and my Onc says they look at that and bloodwork like nutrifils that are a better indicator of how well the drug is working so try not to stress about fluctuations. 💖

@airlinegal I have not had any UTI issues. But we all seem to have some quirks along with the ‘routine’ side effects. Have you talked with your oncologist about this being routine or something else you need to follow up on? Let us know how you are doing. Wishing all the best to you.

@bigred62 Thanks for the schedule / dosing info. I didn’t know what was considered normal dosage. My oncologist suggested I may go up to 3600 but wanted to start me lower and work up. If she does that I am hoping for 7/7 versus 14/7. In the past she has started me high on other treatment and then lowered (Verzenio) so decided to be kinder this time around! I have bad nausea and chemo brain so hope that does not increase. Thanks again for your info I really appreciate it.

I know that tumor markers are not the most reliable but they’ve been accurate with my scans until now. They’re not going up and down but creeping up. But I guess I shouldn’t worry too much about it. I’ll send a message to my oncologist after I get the results of my brain MRI

@marcials1 - Wishing you lots of luck for your scan!

(I'd write more to all, but I'm having some chest muscle spasms after a big coughing fit, and lack of PT, so will write more when I can. It gets even worse when I type. Thinking of everybody here. It's a beautiful day here in Seattle and I hope it is wherever everybody else is too!)

hi @threetree no worries getting back to me. When you can always works. I hope you are feeling better.
Hi @chico I don’t have the rash that you’re talking about. I have the discoloration and super dry palms of my hands and bottom of my feet but I can keep that under control. Sorry about the rash. I hope you have figured that out.

Hi gigil I’m a newbie to X having just completed my 1st month 7/7 and 1500x2 per day. My Onc said a gap of 10 or even 9 hours is ok between doses. I also did this when on Capiversatib which has a suggested 12 hour gap between doses. I am in the U.K. so can’t speak to your separate locations sharing scans etc however here we I certainly have that as I travel between homes. Also I always get a copy of blood and scan reports which I carry with me when necessary. Good luck to you.

Hi threetree! Good to hear from you. These darned meds make me want to sleep,so late in the morning. Today I forced myself up at 9:00 a.m. if I sleep in I have to take my second dose after a yogurt snack before sitting up late to take my pills and wait out the time until I can take my anti-reflux meds and finally go to bed.

I am definitely going to consult with my doctor in Florida. She is very patient and logical. I like that. I hope you are doing well and summer is treating you kindly. Love, GiGi

I've been having a rough couple of weeks (one week on, one week off) and I'm wondering if any of the rest of you have experienced anything like this or maybe just have any comments or suggestions. During my week on, if was feeling a bit low and tired, like the last 6 months of this drug had been cumulative and was just making me more and more tired. I was also having more muscle and joint aches and pains. Then this past week (the week off) I got even more tired and would have to sit or lie down after standing for a usually reasonable amount of time (about an hour doing things in the kitchen, etc.). The feeling that I just had to sit would come with heavy limb feelings and just an overall wiped out sense, and often come on suddenly with drowsiness too, along with an occasional headache. I also got really depressed and my mind would seem to wander to missing people who are no longer here, and the general not so great things in my life, and I would start crying, seemingly out of nowhere. Yesterday was the first time I took a fairly routine walk (it takes about 40 minutes), but halfway through started having to stop to catch my breath, and then this sudden feeling overcame me, that I just better get back home right away before something really bad happened. I got home and even after 2 hours of sitting up in bed, just scrolling on my phone, I didn't feel much more energized and found that really hard to believe.

I looked up the drug and things like anemia (I've never had it ), along with things like just the general fatigue that this can cause, and I couldn't pinpoint whether I might have become anemic or if this might just be "normal" super fatigue from the drug. All my symptoms overlapped with all kinds of things. I also thought about the possibility of a migraine, as I used to get them with the Verzenio/Faslodex combo, but had not with this. The headache sure seemed like a migraine and fit the bill when I looked up typical symptoms. Apparently those can cause mega fatigue and sometimes a need to catch your breath, and the depression, etc. As of yesterday I chalked it up to migraine and figured it would just go away in time. Just to cover my bases, I also ate a bunch of clams both yesterday and the day before, because they are loaded with vitmain D, B12, etc. and I thought that might help if it was anemia.

Well, this morning I got up and out of the blue started to wonder if anemia couldn't be a migraine trigger, so googled away, as I am very wont to do, sometimes unfortunately. Sure enough, I read that migraine and anemia are very connected and that many people find that if they solve the vitamin D problem, etc. the migraines improve tremendously, become less frequent, etc. I also noticed that I had more energy this morning (still not what I should have) and did some "extra" things that I hadn't had the energy to do over the past many days. Now I'm back to wondering if this was an anemia problem. I don't want to call the onc's office, as they will more than likely tell me to just go to the ER and I don't want to. I'd rather try to tackle this on my own some more if I can, plus there's always urgent care which I find much more palatable than the ER.

Sorry I am rambling so much, but focus and concentration are two of my issues also. What I am basically wondering is if any one else has had anemia problems with this drug and if so what were they like? Has anybody else had any sort of headache/migraine issues with this drug? Do you find the side effects of the drug cumulative over months that you've been taking it? Have any of you tried to distinguish what might be causing any fatigue you've had, e.g. was it from anemia? a possible migraine?, or "just" the overall side effects of the drug, or any other cause? So far all my labs have shown "low, but OK" numbers. Next scheduled labs and scans are in mid July and I'd prefer to wait until then before seeing any more doctors!

Again, I apologize for the long post. I'm just pretty much a mess these days and can't just zero in and make my point. Thanks so much!