All about Xeloda
Comments
-
Other things I did to help. Biafine (prescription cream used for radiation burns) was very helpful in healing the damage. Soaking my feet in medium cold (but not ice cold) water for at least 1/2 hour once or twice a day reallllllly hellped keep the skin soft, and the nail issues under control. Coolmax socks with open toe sandals to keep feet cool helped too.
Just staying off my feet as much as possibe helped too, and propping up my feet when sitting. Pressure seemed to make them worse.
0 -
And as to a limit on the skin damage, I don't think ther is a limit
I heard of one woman who was hospitalized it was so bad. Oh yeah I took ibuprofen 3 x daily to help with pain / any inflammation issues.
0 -
Lynn - it is interesting you had such a hard time with the Avastin. I get that every 3 weeks, and don't even notice it. Weird sometimes how we are all so different.
I'm having a little peeling on my fingers, and my palms are looking dry, but that's about it for the H/F stuff. A little tingling maybe? But the fatigue - ugh, it is so hard to function. I was driving this AM and could feel myself starting to nod off, not good.
Any suggestions to keep my energy at a functional level?? I don't drink a lot of caffeine, so that is good in a pinch, but that won't work daily.
Do the gloves seem to help those of you using them? I have a dozen light cotton gloves ready to go, but I wasn't sure if I should be doing it proactively or waiting to see if I had problems. I hate stuff on my hands and feet at night, so I was kind of holding off...
0 -
frozen peas rock. seriously.. they feel so good on those hot feet. I had really bad blistering and peeling on my feet once on cycle 5 or 6.. I had a seizure (related to a brain thing I have in my head).. and I was able to take 3 weeks of off Xelada.. this is after quite a few weeks of 2 weeks on, 1 week off. I have been 'good' ever since and am on round 2 after my break.
I told my onc. how helpful that 3 week break was and she is relaying the info. I would try my best to tolerate the side effects and just treat them rather than not taking the Xeloda. my self. Xeloda works REALLY well for many people. It's the first thing after active chemo that has worked for me.. for more than just a couple months. I've been on Femara, Tomoxafin, and Faslodex (that was a wonderful one as far as few side effects go) since my active chemo treatment. ... and I do realize it is real chemo.. I'm going back to work tomorrow as an organist.. yay
Xeloda Divas sounds good to me..
0 -
Fatigue!! You mean that is why I came home and slept for 4 hours yesterday and I wasn't just worn out from going to the Paul McCartney concert. I guess I need to read more about SEs. You guys are scaring me talking about all these bad things like burning and someone being in the hospital, and having to soak your feet. Re Avastin.....don't you get those horrible chunks of stuff coming out of your nose that look like pieces of cement?....and no nose bleeds or being congested all the time?. I hated it....when I told my onco I hated it, he replied But you hate everything and that is not true. I just hated abraxane and avastin, espeically together. Glad you get to go back to something you love doing, Apple.
0 -
0
-
Time for me to grease up and put on the gloves and socks.....maybe it doesn't work in preventing the HFS, but at least I am thinking I am doing something. Today I bought this stuff at the drugstore called Working Hands which is supposed to be good for dry cracking hands. Thanks for the Xeloda link.
0 -
According to that link it says the HFS can start as early as two weeks after start of treatment so I guess I am being a bit premature in looking for symptoms since this is only day 4 for me. Geesh, I looked in the mirror last night and realized that my eyebrows are just about gone. I had my last halaven treatment I think about 3 weeks ago....no, just looked, it was July 6 so that's a month! So how long after treatment do these SEs happen?....guess my lashes will be next. I honestly cannot remember on the abraxane....know I lost my hair everywhere with it, but think I was still on it when it happened.
0 -
Marybe - Working Hands is the stuff some have raved about. Someone said there is also a Working Feet. I'm surprised you found it at the drug store. Didn't someone say Lowe's and Home Depot? I'm so sorry you all are having these problems and dang I wish your oncs would let you try the week on week off. I still think that protocol was the reason I had so few SEs.
0 -
Hi Alpal, I go to this little locally owned pharmacy and there it was on display so I thought hmmm, and bought it. This is the same pharmacy that didn't want to get the Xeloda for me since they have no other customers on it and they might get stuck with tousands of $$$s worth of pills if I didn't use the entire amount they would have to get in....so I got it at Krogers. Oh, believe me I am going to ask to switch to the 7 day if the 14 is bad with SEs....the PAs are female and they will listen to me. The ends of my fingers look red....thought it might be imagination, but showed Tim and he said they are red.
Wow, I don't know if this will go or not....I started writing and got sidetracked by something..... I went off and forgot I was writing to you and started the laundry and had the neighbor's dog out front with me while I dug up the side of the driveway and tried to get the dirt off the grass I had killed with roundup. I didn't do a very good job on getting the dirt off so the yardwaste bag weighs about 50 lbs....the collection guys are going to think it;s a bag of cement. But things like this I can still do....Tim would pass out cuz he just doesn't have much strength.
AmyJo and 3jays will be proud of me,....I was wearing garden gloves for the lst time!!!....don't want to mess my hands up any more that necessary since Xeloda may do that for me.
0 -
I've heard good things about the Working Hands too, it's available from drugstore.com if you have to order it online.
My SEs started waaay before 2 wks into it.... I couldn't even last 2 weeks the first round. OMG. The first 6/7 days were tolerable, then went slowly into h3ll around day 10-11-12.... had to stop. Doc said he hadn't seen that bad of skin peeling in years
I was crying anytime I had to stand or walk -- not good. My mouth and tongue hurt so bad I couldn't talk or read to my kids
Not just the giant mouth sores, my tongue felt like a cow's tongue you see in the meat case at the grocery store. My lower lip was one massive blister -- and throbbed. I tried orajel, everything OTC mouth thing there was, the onco finally prescribed Swizzle which helped a lot. 0 -
The gloves and socks help to hold the goo onto your hands, to keep them moist Also keeps the goo off your bedclothes
0 -
MJL, And you are still doing this stuff? You are scaring me.
0 -
don't be scared the SEs come and go.
0 -
Hi Marybe...
I think MJL had a bad case... it doesn't mean you will! I had a bad case of h/f but I was so unprepared going into it. Maybe it's good to hear the worst case scenarios so you'll be pleasantly surprised
. The dose reduction really helped me, so if things start spinning out of control you can pull back. And I wish I had had the one week on/one week off schedule. I think that really helps to minimize the se's. Anyway, I'm thinking of you and wishing you the best. Go Xeloda... bring those TM's down!!!!Lynn...
Hope you're doing well and that you had a restful weekend!
Rose.
0 -
Question: For those of you who are doing one week on, one week off, what was your dosage?
0 -
Morning,
Marbe I do one week on one week off on Xeloda, I start cycle 6 (I think) today. I take 1500 twice a day. I have not used one bit of lotion on my feet or hands and I have no problems--so far. I am sure I will as I cleaned both showers in the house yesterday (live with DH & DS), and didn't even think about gloves. Probably will pay for that one. I really haven't had too much problelm with SE other than fatigue. Oh, and my hot flashes have returned. I was scared, too, but relieved now that I know I can handle it. Hang in there, we are both long term survivors!!!
0 -
I tried the Working Hands and it was ok. I didn't see much difference really, but we are all different. I tried something I came across at the store for my feet and I like it a lot. I'll have to post the exact name when I get home, but it's from Gold Bond. It's kinda sticky so that's why I only use on my feet.
Well, I called the Nurse Line this morning to report what "Dr. Lynn" had done over the weekend, and I'm waiting on them to call me back. Will let you know what they say. This morning both my hands and feet are MUCH less red and doesn't hurt much at all though - so from my perspective, it was a good decision, but they might see it otherwise! ;-)
I think MJL had a particularly bad case too. If I can get this HFS under control, this is one easy chemo after all. The dose reduction made my headaches almost non-existent now. The Zyrtec has slowed down my runny nose and watery eyes so it's manageable. I am not taking any anti-nausea meds anymore either - just a Prilosec every morning. My fatigue, at least so far, is very tolerable too. I hope, hope, hope I can stay on this one a looong time!!
0 -
Me too, Lynn. I feel like it is an especially easy drug for me. I am just finishing up cycle 4. I am on the two weeks on, one week off schedule. So far I have NO HFS at all. I also used Working Hands and like it a lot as its not greasy and unscented etc. However, since no sign of HFS I have been slacking off using it and still all is ok. Mainly all I get is fatigue. I am very tired with like no energy. But that is certainly manageable.
I read somewhere that the reason some people get the HFS is that they have a certain enzyme in their bodies that cause the HFS when taking Xeloda. Other peopke do not have the enzyme and so it does not happen in their case. Whether or not thats accurate I have no idea. MJL certainly had a horrendous reaction. I recall that Sincitydealer's mom also had a very bad one and had to get off it. All these drugs can be so VERY different for all of us. But for me, the Xeloda has been really okay. this of course makes me worry if infact it is working!! LOL...seems like if you don't suffer much you then worry it is not killimg the damn cancer!! I had a Cat Scan last week and hope to have results tomorrow so I should know then if it is working. I do really hope that it is so I can stay on it.
Judie0 -
Hey, Xeloda pals, I got permission to go on Coumadin today! The twice daily lovenox shots were getting me down, so I am really happy. Other than fatigue and sweats, which I think are from underlying problems, I feel normal now. Doxil was the devil for me. Evil Doxil, evil!
You go, Dr Lynn! You know what's best for patient Lynn.
Love,
Kathy0 -
Ok, the name of the cream I've been using on my feet is: Gold Bond Ultimate Healing Concentrated Therapy. It's thick and kinda sticky, but it makes my feet feel good.
Judie: Hope you get GREAT results from your CT scan tomorrow!
Kathy: Yaaay for you!! I'm so glad you are feeling better.
Well, as it turns out my doctor is on vacation this week, so his PA called me back. He is worthless. I explain what happened and all he said was "his notes say he wants you to take 1,300 twice a day." I KNOW THAT - that is what he WANTS me to take, but at that dose I have the HFS. He just repeated the same thing. Argh! So I told him to have my doctor call me when he is back. In the meantime, I really AM Dr. Lynn this week. I have no one else to call so I'm on my own which I think really sucks. Anyway, with tonight's dose I added back one 150 mg pill (making my total 1,150). I'll see how that goes I guess. I'll be my own science experiment this week. I'm still so angry at the PA! I'm going to tell my onc to note on my chart that I'm never talking to the PA again!! Harumph!!!!
0 -
Aren't the doctors always on vacation when we need them most? Have you been taking 1,000 mg twice a day? That's where I finally settled with my doctor's blessing, and it seemed to control the se's AND fight the cancer! I still had h/f of course but I could walk! Anyway, I hope Dr. Lynn is a better doctor than Dr. Rose. I diagnosed myself with costrochonditis (sp?) before I found out it was actually Stage IV cancer
. OOPS. 0 -
Since the onco at MDA told me just to stop on day 12 if by then the HFS was bad and not do days 13 & 14, I don't think reducing your dose slightly would really be doing something terrible. I know women in the treatment room told me that if they had bed SEs, he just reduced the dose, Of course my onco here might croak if I told him the other guy told me to do that. So far, nothing....this is only day 5. I thought my fingers looked red yesterday, but today they look normal....actually they do look sort of dry like I have been doing a lot of dishes, but that might be from the yard work I was doing yesterday. I hope I don't have the enzyme.
Kathy , How much coumadin are you taking? How did you convince her?. This week I took 7 1/2 mg every day except on Sat and Sun I took 5mg. They are constantly changing mine since it never seems to stabalize. For a long time I was alternating 5 mg with 7 1/2
0 -
Yes, that is what I reduced my dose to: 1,000 mg twice a day. My palms were still sorta red, but they weren't swollen and did not hurt. I can deal with that..so what if they are red, right? We'll see what the 1,150 does in a couple of days. I know it's not much, but I know the more I can take the better so I'll give it a try till I can talk to my REAL doctor!
Ouch! I had costrochrondritis once and it is sooo painful!! OMG...I could barely move without wincing with pain. Wish you had that though and not this.
0 -
Lynn, you HAVE to do that. My doc will frequently say, "who told you that?" She alone really knows wth is going on and I have to keep her.on track sometimes!
0 -
Good news Xeloda Divas....got my scan results today and Xeloda is doing the job!! All liver lesions were stable...even had slight regression on a few of the bigger ones! But most important...NO progression! So guess my onc will let me stay on Xeloda. Hope it contnues to work for a long time! just thought I'd let you all know for some encouragement. I hope it works great for all of us.
Judie0 -
Way to go, Judie! News before your vacation, right? Late call and sweet news! Thnx for sharing.
0 -
Oh Judie, I am soooo happy for you.
0 -
Judi - You give us newbies to Xeloda lots of hope!! Happy dancing with you today!!! 0
-
By the way.....I like the name Xeloda Divas Judi has suggseted. Should we start a new thread and invite all on Xeloda to join?? Some may think this is all only about HFS?
0
