All about Xeloda
Comments
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Not going to let up until SOMEONE tells me where to get those shoes!!!!!
PLLLLEEEEEEZZZZZZZ?????0 -
Hey, Lynn, you're so close. I bet the peacefulness of being at home will make you feel healthier. Phones don't have to be answered immediately, either.
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Oh I am glad you got this worked oit, Lynn. Hope it helps you a lot. Will be a little crazy until you have it all set up and it becomes routine, but hopefully, then you will have it much easier. Wishing you the best.
Judie0 -
Okay! I GOT the SHOES at BELK. They are ROCKET DOG brand, which DSW and Famous Footwear also carry, and some other department stores. They are completely faux fur all on the inside so I can wear them during the day with my bare feet in them and they feel WONDERFUL.
Gotta go because I am having TWENTY people over for dinner--half of them are children, we are going to sit around and listen to our Christmas Play and brainstorm. The kids LOVE this, it gives them ownership. I love teaching children! BUT first somebody has to make the big pot of soup and clean the bathrooms, no? Much love to all of you today.Sue
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Thanks Kathy and Judie! I hope it goes well.
Sueper: I have a pair of Rocket Dog brand - I use them for bedroom shoes, but they have the sole on them where you could wear them outside. They are very warm and comfy!! These look really nice too!!
Good luck with your dinner tonight - I know it will be a huge success!!
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Livingit - I am so, so sorry to hear your news. I am hoping and praying the next treatment will work for you. It sounds like you are doing everything just right. I am still trying to face what they told you, or rather you told them
you are one strong lady and I admire how you are handling everything. Please know I think about you a lot and am sending caring thoughts and a great big hug your way.Lynn1 - I am so glad you will finally get to work from home and I think the Thursday, Friday would work out good because by the end of the week it seems we are a little more tired. You will have to let us know when you have beein doing it for a few weeks how much better you feel.
Nancyh - I take X 7 days on 7 off. I am nauseated for that whole time and for about 3 or 4 days after I finish, just in time to start again. I take Nexium once a day, Zofran every 6 hours and Promethazine twice a day, it helps some but still feel sick to my stomach. I am just hoping it will get better with time or that I will adjust to the X and not be bothered much by it. I certainly am lucky that is the only side effect so far, other than the weight gain and I wonder how that can happen when nothing sounds good to eat most of the time. I am just hoping it works, my markers have continued to rise even taking it but have only take 3 cycles. I hope when I go Nov 17 to the onco the markers will have gone down even a teeny bit, would make me feel better.
I had my surgery on the left implant to fix it yesterday, had to work around the week I was off Xeloda, the PS did not want to do it while I was on, which I agreed with. Just a little sore but feel tired so and drug out, don't know if it is still the X, surgery or combination of both. I have to say the week I am off seems like I am more tired and drug out than while I am taking it. This past Saturday it was all I could do to just lay around. I felt kind of ok when I got up but by 11 I was on the couch watching the Nebraska football game, then went to bed for several hours, got up and held the couch down again. I had finished the Xeloda on Thursday. Friday I felt ok but, then after that it was all down hill. Oh well, this too shall pass, just part of it, and I have to learn to ask for help and not try to do it all alone, but boy oh boy that is hard, which I am sure you all know. Since I have my hair it is hard for me to realize I am taking chemo and not just random medication.
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Sueper - I so wish I could be there to listen to your Christmas play and the brainstorming. Christmas has always, always been my favorite time of the year and of course I need a little snow, which we will probably get before then. I love to listen to Christmas carols the minute they have them on the radio I have that station all the time. Enjoy your party but don't tire yourself out before everybody get there.
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Well love them shoes, will look for them, how much did you pay for them if you don't mind me asking..just looked and found them for 28.00 and 29.....mostly 39.00 tho..
Lynn so happy to hear that your job is being cooperative...
Good luck with your dinner!!
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Hi Peeps. I got myself into a pickle. I stay strong for those close to me, don't want to add to their burden. I've been "stoic" with my oncology providers. Today I went to see my primary care, hoping to lean on him. But he had to hurry. My first tears in over a year started flowing as I unloaded to him. But the clinic was set up for a fast appt and he had to move on.
God knows I am the luckiest of all. Get to stay home with my doggie, do whatever the hell I want, no young ones to worry over or feel sad about. Maybe it's a mistake to stop working yet I can't find a job that let's me take a 2 hour nap.
Thanks for listening. Pity party.0 -
No pity party, just talking to us..me either...taking a nap.......I really miss not working, am thinking of calling and saying that give a couple of hours.....Hang in there K-lo
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Kathy, What do you do for a living? Any chance of job sharing or a split shift. At the one office I work at the receptionists share the front desk.....one will do half a day, sometimes a whole day and if one needs to be off or has to go somewhere, the other one will come fill in. With my job I go in really early one day, but also get off early that day and then today (or guess it was yesterday now) I didn't have to be at work til 1:30. Since I have now been off the Xeloda for two weeks I have found that I don't feel the need for those naps the way I used to. Have you ever tried any of those vitamin water drinks?....there is one that has B something in the name, will have to dig out the bottle and this gal I work with swears by it...they have some really good flavlors like pomegranate/ berry....pear/apple...but this one is particular mentioned increased energy and had B in the name.
It is perfectly normal to feel sad every once in awhile.....sometimes it just hits and you find yourself thinking is this how it's going to be for the rest of my life? But there are other times when I think Wow, I am really happy to be here and have a good life in spite of cancer.....At least that's how it is with me. Give the dog a big hug.....don't know what I would do without mine.
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the is the 2nd day of my week off. The last cycle was horrid and i added an extra week off with the onc's blessing.. i felt a node grow so i was happy to resume the Xeloda regime.
this cycle was pretty bearable. Last time i fell apart at a rehearsal.. could hardly talk without sounding like French gibberish, played all sorts of bad notes and couldn't find my organized music.. i was super fatigued. Last nite went well so i am happy. Xeloda shoes.. i am thinking ugg type boots would work, but they don't seem to have enough cushiony support in the soles. We keep our house super cold in the winter.. why - i don't know.. we are vikings or something.
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Hey K-Lo - I hear you hon, and am sharing with you. My BadBlues set in after the incredible up of the conference - maybe natural to come back down again? Shame on that doc for not helping you! Hope that the job thing gets worked out for you. I don't work a job and would go crazy if not for the happy people therapy I get at soup kitchen - maybe volunteering is for you (?). No matter what, don't forget that you are strong and funny and smart, and you are loved by all of us - Sue
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Kathy
You are so super-supportive of folk on these forums - you do such a great job! Would you think about volunteering as Sue suggests. You have so much positivity and loads to give.
Hugs to you and your dog - love my 2 and don't know what I'd do without them either (even let both of them sleep on the bed last night, much to my husbands disgust ;-)
Laurie x
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Thank you sweeties. I think i figured it out. I can be addicted to the attention and sympathy at the clinic. Sweet primary care doc spent all the time he could. They said i can ask for 40 minutes next time. He was tickled that new women have discovered Scream Cream! Xmas gifts ladies?
BUT TODAY: I got in with my favorite Physical Therapist, you know the professionals who know More and explain more and do more and touch you? Cured what ailed me I believe.
We have some volunteering going on, perhaps not regular enough. Do you know if its OK to start a local chapter of MBCN?
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OMG. I just got the results of the CA 27.29 they ran on Wed......6,444.3!!!! I think the cancer has just gone crazy and obviously we are going to have to figure out something soon. They were not even going to run the test, I had just asked for it because I figured it would be moving up, but not 2,000 points. I don't have any upcoming appts....wonder if the onco will have them call me. And to think I was actually going to eat sensibly today....I may just eat that entire pan of lasagna I was going to give away.
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Marybe, please tell us the markers are not always consistent with your scans. How are you buzzing about your life with this suspected chaos? What is the possible explanation...... Poor dear.
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My markers have always been a good indicator....my onco doesn't always like to admit it, but I know that when the numbers go up, the scans are going to show something new. I was expecting them to go up since I am not really doing any treatment now except for the monthy Xgeva shot, but not over 2,000 pts. Buzzing around is just me, Kathy. I was talking to one of my friends tonight and she said I just think you attitude is amazing and I asked what she meant and she said well, I might be curled up in a fetal position if I had gotten news like that. I told her no, she wouldn't and it's true she wouldn't. I think you just have to deal with things as they come along and as I told her, I was right in the middle of layering my lasagna when I talked to the nurse and after I hung up I thought Oh wow, this is not good and my next thought was I have to get this in the oven. One of the plus sides to ADD.....can't stay focused on one thing for too long.
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Well I know the fetal position real well. Glad you are a doer, MB.
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LOL at knowing the fetal position real well! I paid 22.00 for the shoes after a 20% coupon and 10 Belk Reward dollars. I still love them, been wearing them a lot. Marybe, sorry about the tumor markers...hope you get answers soon. And Kathy, I agree you should volunteer. Hold some babies or pet some dogs and cats. I have dogs too, and I also don't know what I would do without them.
I saw the onco today and she says we really don't need to treat with the Xeloda during radiation...and I started radiation yesterday (2 down, 26 to go). Big relief as I got nausea and a mouth sore ON MY WEEK OFF, so I knew the Xeloda was about to be kicking my a$$. We will again take up the Xeloda like mid-December-ish? Will I still be a diva?
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Hey Girls!
Sueper13: One thing we know to be true: ONCE A DIVA, ALWAYS A DIVA!!!
Marbey, I think you should SELL! (Little stock market joke) I know what you mean about knowing when there is progression. If your onc doesn't call you, you will, I assume, call him. Yes? We have to keep these docs on thier toes ya know.
K-Lo, darlin'. Are you feeling any better? Its funny you mentioned a low after the conference. I hadn't put it together, but I spent a half hour in full waterfall in my oncs office on the Monday after the conference. I kept making him tell me over and over that I was at a crisis point in my treatment and that it was possible that my cancer was just not going to be bothered with dying off anymore. He absolutely would not give me any time frames though. Gotta respect that. I asked him what treatment he would go on to if this one failed and he had no answer. That was creepy. He seemed to be telling me that he was playing his wild card now with the hormonal +chemo and that after that he was gonna have to wing it for real.
My intuition tells me that this deal is comming to a close, but I've been wrong before. It's just wierd. Im all in planning mode again. Making funeral arrangements and getting my 'affairs' in order. Or at least thinking of doing a lot of that. Its amazing how little I actually get DONE in a day. Thats mostly for the excellent reason that if I have energy, I spend it messing with my kids. A good thing.
So, Im not down or anything now. Just easing through round one of Gemzar and waiting to see how I'll feel at any given moment. I hate new treatments cause you don't know what to expect. Grrr..
Have I moped enough. Not a great job saying it, but Im actually in a pretty good place today. I have everything I need, all the help and support I need and Im comfortable with my treatment plan. All is well.
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Yeah, Zoh, you're in a different place from many of us when your onc won't name another chemo. If I didn't know how smart you are I'd say why not more opinions. But you've done that, huh? Wish you could come to UAB, or go to MDA or JH and start from the beginning. Are you hurting? When you do have energy, can you get out for fresh air?
My slump is over, my psyche drives most of it. We went out tonight and my mind dwelled on the mBC but not in a depressed way so much as in the sense that it has become my world. had to drop the professional pet sitting thing, but I do it for friends. Maybe I'll start my own little service.
That's pretty good when the biggest problem is staying busy. Wish it were so for our LivingIt.0 -
Zoh, The way I look at it, is that it really does us no good to sit around and feel bad ( and I don't mean physically, but mentally, the physical we can't do that much about except take pain pills maybe) so it sounds as if you are dealing with this the right way......spending time with your kids. I am praying the Gemzar does its thing and that you have minimal SEs. I think they are supposed to start that vaccine for metastatic BC patients soon....the clinical trials showed that is worked, not for everyone, but for more than it did not. Maybe that would be something for us.
I know how I want my funeral to be, it's going to be a party. I have already picked out songs I want and am putting this one friend of mine in charge of food and there is to be no casket because I am donating my body to somewhere so they can study it and maybe find out why I did not have normal SEs and why my cancer has "not been normal" from the beginning as my onco put it. I would donate my organs, but no one wants them if you have had cancer.....except they will take your eyes. I know that cuz my Mom donated hers. My eyes would be no good either though cuz I had cataract surgery and also have little holes in them from when they made drains for my angle closure glaucoma. I also am going to tell someone whom I want to come to this party.....sounds nuts I know, but I don't want people I have not even talked to for years coming to "pay their respects"......If they don't come around when I am alive, what do I want them coming for later? I make an effort to stay in touch with people, but some of them are just too busy and I never see them and I will get an Xmas card saying We have to get together, but if I make the effort, they can't......so they don't need to come around when I am dead and gone.
Kathy, I didn't realize you were a pet sitter. Maybe you could do your own business as you said....have the pet come to your home or would your dog put up with that? I know pet-sitters are in demand. My husband won't go anywhere if it means leaving the dogs.....my dad used to do it,but he needs watching himself now and none of my friends can just pack up and come stay at the house with our three dogs.
Sue, Good luck with the rads.
Have a good day everyone. Marybe
Yep, you are right, once a diva, always a diva. Long may we reign!!
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we need a reign dance. sorry about your markers Marybe. Hope you all have some answers soon if you are in need of answers.
best wishes.
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Yes, Apple, a reign dance. You can come up with the music for us and we need some steps that aren't too complicated so I can follow them. I still like the leaping thought that is in my dreams....all of us leaping in a line, not like frogs, but the way the ballerinas do....and not in pink!!....anything, but pink.
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i kind of like the havva nagila (sp?) circle dance idea.. not to difficult at all. or maybe a lady gaga type thing. My daughter and I dance to her videos daily.
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Maybe we could come leaping in and then go into the circle dance....think? I have honestly never seen Lady GaGa dance, but did see her arrive in that big egg at an awards show.
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Marybe, sorry for the TM, that is so scarey....
Zoh....yea play with your kids and do whatever you want and eat whatever you want.....
Apple....these SE's totally suck!!!
Back on the poison after my 7 days off, diarrhea never really left....eyes are watering and still putting the cream on my hands, not my feet so much....with this crap you wait for the other shoe to drop with the SE"s which is what I am doing, but I continue to do whatever I want, I volunteer alot and it is keeping me really busy, so are the twins, lol....
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Zoh, I think you need a new oncologist. Geez Louis even I can name more chemos to try, and I've never had a day of medical school.
Marybe, sorry for the TM progression. That is always a scary thing to have to go through.
And I know this is butting in from a former-X diva, but man oh man did that crap depress the hell outta me. Seriously ladies take this into consideration when you are assessing your mental states of mind. On taxoterrible I hurt, I have horrible mouth pains, I'm bald...but at least I'm not a bundle of sad angry nerves.
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Lynn, I had your headache this am.
Marybe, hope this week is good for you.
Blondie, do you think maybe blondes are more sensitive? Of course, I had raging SE to Doxil.
Apple, are yours unpredictable? SueOpp, Jeanne, how's it going?
Super, show us some quilts.
And Zohy, enjoy your Sunday
Me? Other than being a rabble rouser, I took doggie for a nice long walk and will go to a play and then eat with son. Love kathy0
