All about Xeloda
Comments
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Zoh-ie, Doxil was my hfs devil and it took a long time to heal. X has minimal for me. But I would suspect that with the many layers of skin and the time involved will make a slow progression for you.
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Z,oh.. i would seek a professional opinion. While i have been a bit 'rashy', my body has experienced nothing like a total body itch... what are you taking now?. Also my hands get a LOT better after just a few days of no Xeloda.
(this topic was started July 25th.. it's good to see that so many women seem to be on this.. i don't know why.. 'they' must have some confidence in it.
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Thanks one and all for the good advice and good vibes - it's a great help to know that there are folks out there that both Know and Care - K-Lo, I'll get onto the EMLA (an Rx you say?) and Apple, I will indeed resort to the gloves - if you can make the piano sing with 'em on, then I certainly can do my stuff too! You are an inspiration. Best of luck Suz on Tuesday, hey to Zoh and Judi, and Happy Holidays to all - SUE
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WTH are you doing up, Apple and Opp?
EMLA is the coveted cream they only use for babies. They put it on the spot where they will place an IV and in time it numbs it completely. My first tube lasted a long time even with frequent port access. When the doxil pain came, it saved me from jumping out the window on a day to day basis. Sitting in a restaurant, mouth sore screaming "dont take another bite"..... go to restroom, dry the sore, touch the EMLA to it, wait, ahhhhhh
Just another trick in your bag.
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i get up early.. i can then take a guilt free nap later... or maybe i just have to visit the restroom and end up staying up. i like mornings
.glad to say (3 days off Xeloda) that i woke up and washed the kitchen sink window inside and out. I don't have to play today so am staying home from church.. yay. anyway, being off 3 days is really nice. it should be a good week.
edit.. then i mopped the floors.. like 3 times.. they were filthy.
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Oh yea! It feels so good to be off X for 4 days now
Yesterday did a small Costco shop and today went to the mall for an hour and took the dog for a walk. This next week is my "medical" week, Mon - nurse comes to do my drain, Tues - blood work & CT scan, Wed - Oncologist in am, GP in the afternoon, Thurs - off (will try to take the ferry over to the Island to visit MIL), then Friday - nurse visit for drain again. Hope I can find time to buy a tree & start some Christmas shopping.I here you about the floors
Did the same thing the other day... washed the window over the kitchen sink then dusted & washed the LR floor. lolTime to log on to FB now, hugs Suz
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SUZ, HIGH FIVE WITH ME FOR WEEK OFF! I forget what are you having drained? You make it sound easier than a manicure.0
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Me too! This is THE WEEK OFF!! Hoping to be little more energetic at least! I have friends from Argentina arriving Friday night as is my son and all staying with us for the holidays! So have to be all ready by Fri. We plan to do a lot with them while they are here so I hoping I can hold up! If I have to collapse occasionally they will umderstand. Amd my DH and son will keep them busy while I rest when mecessary. We are going to go to Disneyland the day after Christmas as our company has a six year old boy. Then we are all driving to Las Vegas for three days. So lot going on. Hope I can keep up! At least I am off the X this week. That helps. Wish me luck...lol.
Judie0 -
K-Lo - HIGH FIVE (smack) Love, love, love the days off!
Judie - Wow, that sounds very busy.. try not to wear yourself down. Good luck & have fun.
Heh heh... ummmm, I'll take the manicure! Here's a very detailed nurse day.
I had a pleural drain installed 3 months ago (sounds like something you put under the hood of a car) there's fluid that builds up between the pleural lining and the lung on the right side. It has nowhere to go so it compresses my lung making it hard to breathe. The drain tube is sort of wrapped under my lung and exits about 3 inches below what would be my bra line... but off to the side. Its about 5 inches long on the outside with a click lock cap. Its kept completely sterile with padding & waterproof bandages (4x6")
The nurse comes in to my home and suits up with sterile apron, gloves and so on. She then takes the bandages off and attaches a 800 mil vacuum bottle. Its drained very slowly as the lung has to re-expand which can be extremely painful (like a knife pain across the chest) Once most of the fluid is drained out the area & drain gets an iodine bath, saline rinse and a layer cavalon cream (sp) to help protect the skin. She then coils it, puts a layer of padding on my skin & gauze pad over the tube. The hardest part is holding it all while she seals it with the one piece waterproof bandage. This all takes about an hour.
There's a chance that this will be permanent :P but were hoping between keeping it drained and Xeloda it will slowly dry up. They drained about a litre the first 2 times and now 3 months later I'm down to 400 mils. My only concern is that its not draining as easily as it did at first because when she checks my lungs the very bottom area isn't getting as much air after being drained. I don't think the ct scan tomorrow will show much but in Jan I'll see the lung Onco and he'll check it more thoroughly.
I'm not sure but I think its a fairly new type of drain. Or else their using them more frequently than they used to. The other way of draining it is by needle in the back rib area. That's what they did the first time.
I know , very long post again
Luv & Hugs Suz
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Suz - you are one tough chick! Keep on truck'n hon,and have a happy holiday - SUE
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Hi Suz,
cant they plug your lung with the talc? i had my left lung drained 2 weeks ago (3 litres came off!) and then they plugged it with the liquid which becomes like a cement formula to stop further fluid build up. i totally understand the pain associated with it as it was brutal.
I just started cycle 2 of Xeloda- so far i have been ok, just had the odd aches and pains, nausea and headaches. No H&F yet! But i am applying the bag balm every day! I feel pretty much normal apart from the fatigue which kicks in around 2pm in the afternoon- but thats pretty much normal for me! The doctors are impressed that i am feeling normal and looking healthy! The other side effect i am having is hunger pains- i am always hungry!!! i think i eat about 10 meals a day!
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that draining is an unusual sort of pain isn't it? shudder.
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it is awful! when i had mine drained, the lung started expanding, but the cough became worse which added to the pain and having the needle in your back right above your diagphram isnt the greatest! and when they plug it via iv its even worse. BUT it is worth the pain-especially if your lungs are too heavy, i couldnt deal with the heavy feeling so i had to get an emergency appt
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X = X-tasy,
Just in from Onco & early scan results.... ALL is well!!!! Everything is shrinking, for the most part by 1/3 (I think one small tumor is stable & the same) I'm on a high right now that I don't want to come down from. Even the fluid situation in my pleural linings is better... the left that has no drain went from 250 mils (8oz) to almost nothing and the right side with the drain was showing almost no fluid. It had just been drained the day before but we thought fluid was being left behind... not so! It really has gone from over 1000 mils to 400 mils!
We also have changed my cycle, same dose 1650 10 days on and 11 days off. We hope that this will decrease the side effects or at least keep then from getting worse as well as giving me more "up time".
Must run as I have another appointment in an hour. Maybe even pick up that Christmas tree
HUGE HOORAY & HUGS, Suz
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Happy Day, Suz! Glad to hear that things are going well - stay on that high! SUE
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Well, I am leaving you wonderful ladies as of yesterday and moving on to Faslodex. CT Scan last Friday showed no change in the liver but the bone scan showed 2 tiny possible new places on my lumbar spine (but then they might just be arthritis--of which I have an abundance)--won't know for sure until i can get a PET scan next April and since the liver enzymes have been getting higher each month and the TM's have been bouncing off the roof between 600 -1000 my onco thought that we should try Faslodex since it isn't an iv.. Last March, I had 3 Gemzar but my body rejected the port and it had to be removed and we don't know for sure if iv chemo is ruled out forever. I have LE in my R arm and over the 7 years since dx most of my "good veins" have been ruined w/various draws & contrasts & treatments.
Thanks for being here even tho I seldom post, I faithfully read what is going on with everyone else and wish you all success w/your treaments.
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Oh, best of luck, MaryAnn. Its good they see the right way to go. If your back worries you, you might do like I did and request an MRI. I feel so much better on Xgeva I cannot tell you. I know it seems foolish to look for trouble but in thsi case, its a miracle how much easier I can move.
Congrats Suz, thanks for the good news.
Someone please email my mouth tell it to stop stuffing and overfilling.the stomach.... Lord.
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Deep81 - The fluid isn't in the lung its under it (between the lung & pleural lining) might be the same thing..... but I'm not sure. Ive heard of the procedure your talking about, but wonder if they would wait until it dries up a little more. From what I heard (not from doctors) it actually re-attaches the lining back to the lung?? Chemo brain might have me confused about it all, lol. Anyway she was mentioning using a talc like powder and that it hurt like hell, dont know if it was for the lung or the lining.
Mary Ann - Wishing you much success with Faslodex. {{{hugs}}}
K-Lo - I here you, I just did the unthinkable and had KFC for dinner. Unfortunately it was the first thing I ate today (forgot about food again) so I ate way, way tooo much. KFC in NOT a food I would normaly eat. I just had a craving for something greasy... heh heh, gonna pay for that one tonight.
Oh and after 5 stops I found my Christmas tree. Everyone was sold out of the Noble pine. I was one stop away from having no tree at all. Lol, Its Noble or none.
Hugs Suz
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Hello Ladies,
I have a quick questions for those who recently had fluid drained from lungs. How do you know when you need this done. What are the symptoms? I get short of breath after walking just a bit or going up a flight of stairs. If I sit down it feel worse. I have to stand to get a few good breaths first. This is the only time I have problems.
I am also losing quite a bit of weight... but I have a lot to lose LOL.. Don't have much of an appetite these days.
On a good note... after leveling off for a while, my markers are starting to go down. I am happy to see this.
THanks in advance for your response.
Dana
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Dana, the funny thing is how infrequently they do a simple chest X-ray but I think that would tell them what exactly is going on in your chest. Of course they need dye-scans for the tumors but fluid, pneumonia and such show up. Maybe you can ask for one
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I just got news that I am stable (again). I am on my 13th cycle (2nd wk) so Christmas Day is start of rest week. Yeah for X!
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congrats dw!!
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Awesome, Dream. Thx for the good news.
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Yippeee Dream Writer!!!! Now you just wear out that Stable Boy girl! Im so happy for you. Merrry Christmas.
Zoh
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AmryAnn47:
I would hope that they could re-try a port. I just had my second one placed. The first was on the left side and this is on the right side. I think they can also place a PICC line as well. Ruling out IV meds limits treatment considerably. Not a descision to be made lightly at all. If you are up on all this, then please excuse my buttinsky ways and best of luck to you. Zoh
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hi Wings of Hope: your lungs will feel really heavy, kind of like a dull pain, and your breathing would be really heavy. Before i had my lung drained, i was really struggling to walk around, breathing was getting troublesome and i decided to get it done asap. it was quite the process but was worth the pain. the only issue is that it didnt help my cough- i still am coughing so have to take codeine every 4 hours to suppress it. The good thing is that the fluid is gone!
Very happy for the ladies who are stable on this board! you give me hope!
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Suz and Dreamwriter- thanks for sharing your great news! I went to the onc today, and after two cycles of X, my tumor markers have dropped 30%. We cut my dose to 2500 a day, and I start my next cycle tonight. Oh, merry, merry Christmas to everyone! I am dancing in the clouds tonight!
My best wishes to everyone of you amazing women for peace and joy this holiday weekend.0 -
Good nrws maryGLA,! Happy for you. looks like x is doing rigjt by you!
Glad for suz and dream too. love to hear of all this "stability"! Hope the Faslodex works great for MaryAnn. Maybe they would reconsider another port for you? If one is rejected does that mean they always will be?
Reading all this about getting lung pleura drained makes me think yet again how many brave women we have on this board facing painfull treatments and procedures every day. And with such courage. God bless you every one.
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Playing with the 7 days off.....thank goodness.....Off for Christmas, that is a great present for me.....Need to get the bone scan done soon along with the th BW....
HAPPY HOLIDAYS TO ALL!!!
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Bump for Debke33
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