All about Xeloda
Comments
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Lynn, I have the spots too on my fingers and feet-- even one between my toes! It's a pigmentation thing that is a side effect of Xeloda. I also have tons of freckles and sunspots on my face that have come out. And I live in Seattle, so they aren't from the sun! My face looks totally different. I'm trying one of those "skin brightening" lotions from Origins, but I don't know that it will do anything.
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My fingers and feed are starting to do something, I am in the 3rd round I assume all of this is next time. I remembered from the last time to make sure I keep my mouth moist via gum or taffies and I am not much of a drinker so am forcing myself to drink!!
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Hey Divas! Just popping in with a quick update. Finished round two last Friday and am enjoying my off week. Had a little tingly feeling in my hands and feet over the weekend, but it has gone away. Other than that, still no real problem with HFS.
Now the real reason for my update...I know this drug isn't that much fun, but I just have to tell you, it seems to be working. Had my ca125 (only marker that works for me) done today after 2 cycles of our lovely Vitamin X and it dropped all the way to 13.2 from three weeks ago of 37!!! My scans were clear after surgery, TM was 42, now that they are normal, I'm thinking that has me dancing with NED!!!! I love NED. I know the true test will be scans in October, but I'm going to dance with him right up until I can't any longer!!! WHOOOOOO FREAKIN HOOOOOOO!!!!
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That's awesome Mustang. Sounds like you can get past the tingling and enjoy life. That's what it's all about. K
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petjunkie - I noticed the same thing when I was on Xeloda, I would be slightly hungry, but then I couldn't eat and would get sick. anti-acids worked like a charn! I know it was the Xeloda because I'm off it shortly thereafter, and haven't needed it.
I'm not currently on Xeloda, but I'm still intersted in hearing about Side-Effects. My feet are peeling from it, still. I just cut off the dead skin at least once a day and it helps, but this is gross!!
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Kathy: sorry to hear the diarrhea has started. I hope your BRAT diet can stop it quickly!
Suze: What type of exercise are you going to do? I need to get back at it myself, but I'm worried about aggravating the HFS on my feet.
Renee: I am so sorry to hear about your pain. What hurts? Also I couldn't tell if you were being sarcastic at the end or not...do you feel better today or still lousy? Hope things are better!
Petjunkie: thank you for letting me know. While the least of my issues right now, it still sucks. Guess I had some awesome timing on trying a new cream that is supposed to reduce spots. Hope it works!
Mustang: Wooo hoooo! That does sound very promising! Hope your scan in October confirms your relationship with NED!!!
I'm still lucky in the peeling department for now -- very little.
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Lynn - I'm going to swim!! My BFF is a swimmer, and she is going to help me with my stroke and training. I'm also going to try the recumbent bike and see if it is okay. I'm really feeling the joints, so I hope it works for me.
Mustang - yay!! Oh that makes me smile
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Renee - boy those down moods sound familiar. I hope you weren't being funny and really do feel better!0 -
Mustang, That is great news. Even if I do start getting SEs with this, it will be Ok IF it works....that is all I am hoping for, a treatment that works since nothing we have tried in the past two years has.
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I'm so grateful for this thread as I've picked up 3 good tips (bag balm, working hands and lidocaine patches). I'm on my 7th cycle (I think) and thankfully the Xeloda appears to be working but I must say juggling side effects really wears me out. I have the runny, drippy nose issue, the watery eyes that get crusty in the morning, diahrrea which I control with pills, hand/foot syndrome big time and severe fatigue.
I must say my feet are so tender that I can't imagine using a pumice stone or anything like that. I lost both my big toe nails so that's another sore area. My hands are just like some of you described--no fingerprint lines, fingers like sausage links, peeling, cracking and just very tender yet numb at fingertips.
I'm sorry that we all are in this difficult treatment but it sure helps to read this thread and know that I'm not alone in what I'm experiencing.
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OMG no pumice stone! Aiyiyi! Just keep your skin cool, smooth, wet, soak in cool water as cold as you can stand, and be gentle with yourself! No abrasion AT ALL!
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I really do feel better. The pain was really just that bad. My Rib & stomach were killing me. I was popping oxy, but no relief. Now it is 4 days later and I haven't even had to think about taking break through meds.
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Suze: Ah, swimming! Wish I had somewhere I could do that. No pools anywhere convenient to me. Let me know how the bike goes if you try it. I've got to do something....I miss my exercise! Not exercising is making me grumpy and flabby!
Spoon: Welcome! Glad you found us too! Zyrtec is helping my runny nose. Still runs, but not as bad.
MJL: You really did have some terrible issues with the HFS! And again, I'm so sorry it didn't work for you after all that torture. It's just not fair!
When my feet were so tender and sore during the 1st cycle, I would have never even considered using a pumice stone. I wore bedroom shoes to work because regular shoes hurt. But now, with the reduced dose, the HFS is much better and I have been using the pumice stone each day when I shower. So far, it has not caused any issues with the HFS and I'm hoping to get rid of these calluses!
Renee: I'm so glad you are better now!
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SpoonC, all those things, the watering eyes, drippy dose, toenails falling off.....are those from Xeloda!?!? Yikes, those were things that happened to me when on abraxane. So far I am having no SEs really...sometimes my fingers look red, but in the AM they are perfectly normal after sleeping with my gloves and either bagbalm or workman's hands. (although I just looked at them and they look sort of red and shiny, especially around my nails) Today is day 14 and then I am off for a week. They really did not tell me a thing yesterday and decided I didn't even need to see a PA or anyone since I was just there for blood work and had no complaints. The only thing that is off is my INR is too low to be therapeutic....it was 1.2 so I have to increase my warfarin. Here I was worried about bleeding to death, but guess it has the opposite effect. And they did tell me that any chemo can cause vision changes so I don't think I will be getting my new Rx for glasses put into frames just yet. I know I should be thankful, but I am worried that I am not having SEs. I do notice more neuropathy in my feet, but that's about it. It will be interesting to see what happened on my week off.
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Lynn - that stinks about not having a pool around. I'm lucky that I have two YMCA's within 30 minutes of me, they just built a lovely one with a great pool. I'll keep you posted on how the bike works out, definitely.
Spoon - I'm glad this chemo is working for you! I love to hear it working
.Marybe - I know all the SEs sound scary - I have the drippy nose, but attribute that to the Avastin - but for me this chemo has really been so much easier than the AC/T+Carbo I did. There is no guarantee which effects you'll feel - I have zero hand/foot issues - so hang in there!
Renee - I'm glad to hear you are feeling better. I've had a lot of joint pain on Xeloda - my right wrist is particularly bad - so I hear you on that. I hope the next round is gentler for you.
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Hey Mary, Yes, all those side effects I mentioned are from Xeloda :-( They started at different times and they didn't start until about my 3rd cycle. I've finally gotten to the point where I have tools to manage them as best as I can. Problem is that the tools I use don't take them away, they just make them a bit more managable. At times however, nothing seems to work and I'm in pain--in feet and hands.
I do watch "The Big C" and I really enjoy it. Seems to be better this season in that it seems more realistic as to what we go through.
Hugs to you,
Teri
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Spoon: Oh dear...those all started around cycle #3?! Here I thought I was doing ok, but I'm only on cycle #2. I really hope the next one does not bring all those se's! Mostly I'm worried about the HFS getting worse and the fatigue. Knock on wood, so far I'm not THAT tired.
I know we never know what to expect.....sometimes as you go, you do get better at "treating" se's and so things get better, but then sometimes as you go, things just get worse and worse. I wish all this came with some sort of manual. HA!
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Just got cycle 3 in mail. Do y'all get these coolers with them? Good for restaurant leftovers.
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Spoon I have the runny, drippy nose issue, the watery eyes that get crusty in the morning, diahrrea, hand/foot syndrome sort of and severe fatigue. Didn't know the nose thing and the crusty eyes were from that....the hands and feet are weird....am at the end of the 14 days (Friday morning is last one) but get Zometa next Wednesday right in the middle of it...I am finishing round 3. the Diahrrea is annoying cause you have to watch where you go and make sure a bathroom is near.
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Hey, divas. Does anyone feel conflicted about Home Chemo? At first I felt good not going into the clinic every week, waiting, being stabbed in my port, etc. But it seems lonely sometimes treating myself. I have this little bedside clinic here with pills and shots and even a writeen schedule because of chemo brain. I duuno. My onc seems to know me very well she indulged my need for CT Scan whenever I felt anxious about it. Now I think she knew that xeloda was a good change from the crazy clinic regimen. So, I'm going from May to October without checking for progression/regression.
That was not coherent but let me see if anyone can relate.0 -
Lynn, I'm with you..Oh, dear.
Blondie...since you are at the end of round 3, do you know if this is working yet?
Teri, I fell asleep last night after they walked in with the live turkey and woke up at about 1 AM and some movie was on.....I am going to have to see if it is on Showtime on demand yet. At lst I just could not see Kathy married to that guy, but now I like them together. You are on your 7th cycle?....how often do they do scans?
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Kathy, Since they discovered my HER2 status changed and I am getting herceptin, plus the fact I have to have my INR checked weekly I am still going to the treatment room at the onco's office. I actually miss it when I don't go since I have become friends with a lot of the people there....try to sit next to the ones I know and we chat and catch up. So I do understand why you would feel lonely doing it all at home.
Edited to say....I am too slow on the draw.....I commented on your post which was deleted by the time mine went up.
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It's lonely at the top, divas!
Well, I didn't exactly feel lonely... I felt very privledged to be taking oral "Home Chemo..." but I admit there was slight anxiety over it not being "real chemo." And I wish this thread had been around last summer when I needed it... guess I did feel kind of lonely when I think back... there weren't a lot of people with experiences to relate!Lynn...
I had the weird brown spots too but they've faded away now. And I bought an exercise bike last summer while on Xeloda... pedaled away in my soft slippers!
Wishing you all GREAT scan results... GO XELODA!
...I'm even slower on the draw... tried posting three times before I saw that Kathy disappeared!
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Klo,
It's weird, but my specialty pharmacy sends the Xeloda a different way every time they ship it. 1st it's in a cooler (I can't understand the cooler, it doesn't need to be refrigerated), then it's in those individual pop packs, then it's in a bottle, then it's in a big box and then a envelope. Whatever works!...lolololol
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You guys are friends. I deleted a post whining about treating at home because there was a lot of serious bad news from other stage IV sisters. It was a weak moment. But you were there, thank you.
Xeloda travels like that garden gnome, showing up everywhere in strange packages!0 -
That is weird about the cooler...why would they need to be refrigerated? I get mine at the onc's office and they come in bottles just like any other script...
Rose: That is good to know that they do go away eventually. Thanks! Also good to know about the bike. Not sure I'm ready to buy anther "clothes rack", LOL, but I will look into them....I really do need to do some sort of exercise.
So today I have two new issues. I now have my first "crack"/peeling on my hands. It's right on the bend of my thumb and it's very sore. I need to do better about putting lotion on during the day after I wash my hands. The soap at my office is drying and I bet that is what caused this. So now I have a bottle of lotion on my desk. Hope that helps and keeps any others away!
And, the weird thing....I woke up this mornign and my eyes are all funny. At first I thought it was just the sleepy just-got-out-of-bed can't wake up thing, but it hasn't really gone away totally. My eyes were very red this morning too so I put some Visine in and it burned like crazy - bad idea!!! They are still burning, sleepy feeling, and itchy watery. It's like a have a full-blown allergy thing going on. I'm allergic to my chemo! ;-) Seriously though, anyone have this? What did you do for it? Should I get some of those allergy eye drops??
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my new freckles (like the one's of my youth) are pretty cute. I am in my 2nd week of cycle I don't know... probably 9, and doing well. I soaked my feet twice in epsom salts to remove all the dead skin and rubbed them with a brush which my daughter produced (she got it for free in some makeup stuff) and then a towel.
best of luck to all you divas.
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Dammit, Lynn. Those cracks are like paper cuts. From hell.
Are you wearing gloves at all? It shocks me every day how rough I am with my hands. I'm so used to them having sturdy outer skin. So, friction is my enemy. White gloves will get your weird looks , too. What to do.0 -
Marybe--I had a scan after my 5th cycle and it went very well--things are working in the positive and I'm very relieved. I believe my next scan is after my 10th cycle (there is some sort of protocol apparently)
Blondie---Yes, I found out the eye thing by reading this thread where several people mentioned it (early on in the thread). Not much can be done about the eye thing (or at least I haven't found a solution). With the diarrea--my onc said I could take pills and so I"m taking Walgreens "Anti-Diarrheal) pills twice a day. One a day did not do the trick but two seems to be working better. The diarrea just takes so much out of me, its good to have something to have it more in control.
For hand/foot--I take 300mg of B-6 and 600 mg of Alpha Lipoic Acid as directed by my onc nurse. She said it won't take it away but it can stop it from getting worse. I was using the udder cream and gloves at night but recently I changed over to bag balm (on both feet and hands) and it seems to work much better. So now its bag balm and gloves and socks which do help at least for a while in the morning when you have to take the gloves off. I use cotton socks which I actually read was the recommendation.
For fatigue--that's a hard one. I find I could use a nap each day and if I don't get that, I have to lay down as errand runnning etc wears me out. One day I came home fell asleep about 4:30pm, woke up at 10:45pm and then went back to sleep leaving me actually really refreshed the next morning. I do find however that walking and outside activity are important for me as I feel weak just laying in bed or doing too little each day.
It's all hard to figure out and manage
Teri
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Apple,
I have a "mask" of freckles over both eyebrows. It's definitely a Xeloda thing.
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Ok, it's official, I have these rough little bumps on my upper arms, the part that goes into my back and is exposed if you wear a tank top (which I only do in the privacy of my own yard since my arms leave something to be desired with the flab and crepe paper skin I now have) . I felt these last night and thought Oh crap what is going on now? I slapped some cream on there thinking maybe it was just really dry skin or I was getting ready to peel. I get as much sun as I can when I am out in the yard and know it is not recommended, but I don't burn and I feel better when I have a tan. Anyway, I thought it would go away, but today it is worse so I put some cream I got from the dermatologist a long time ago for a rash I had God knows where, it's been so long ago. They are sort of like little blisters, some red, but most of them still under the skin. As far as I can tell, that is the only place I have it and believe me I check myself out. When I am in bed at night I feel everywhere for lumps, bumps, anything out of the ordinary. Sometimes the onco will try to tell me a little bump I feel, isn't there, but then it gets larger, he will feel it and I say See, that is what I was talking about. Don't you just love it when they tell you it's your imagination. I will be the first to admit that if I know something is supposed to happen, I look for it....I examine my hands and feet every day. One thing I have noticed on my feet is that they look sort of purple almost under the red after I have been on them all day....but in the morning they dont look like this so I am sure a lot of it just has to do with the fact our feet have to support a lot of weight when we are on them. Anyway, I am keeping an eye on these bumps. It is physical evidence that upsets me, not because I am so vain, although I do care what I look like, but because it is a visable sign that something is going on and I don't like it when you can see things going on. I guess this is sort of stupid, but I can deal with acid reflux and diarrhea or constipation because not everyone else can see what is going on from looking at me. I have never looked ill and want to keep it that way....no one even knows I have cancer unless I chose to tell them and I want to keep it that way. I hate that look of pity and shock they get in their eyes when they know....I have you all and my close friends here to give me support and I don't need strangers feeling sorry for me. So we shall see what this turns into....I have an appt in Sept with the dermatologist TG, since I know I would not get in this year if I called for an appt now.....what is it with dermatologists...they are always booked 6 months in advance and the one I go to sends a card telling you to call when you are due and if you don't call within two days, forget it, the schedule is full and you have to wait and call the following month. I admit this is petty, but as I told K-lo, nothing is too petty to whine about when it is happening to you.
I hope we don't wait for 5 cycles before doing scans. My eyes are not crusty or watering, but I do notice a vision change for the worse in my left eye and the distance was perfect in both after I had my cataract surgeries in the Spring....see the one eye doctor on Mon, the one who wants to do surgery on the lids for the chronic ingrown eyelashes after chemo, so maybe he can see what is going on. My list of doctors is longer than my Xmas card list.
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