All about Xeloda
Comments
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Wow, that's a healthy perspective, Marybe, realizing you have it a bit easier than your friend. Jeez, I never woulda gone to the trouble to remove a port. It was such a bleep to put in and get used to. Maybe she had to have it removed.
I kinda like the warm rush with CT dye. Thought of asking them to call my DH in, if you get my drift.0 -
Feeling better, Marybe. For some reason the mornings are really hard. I went and did a little shopping because all of my jeans are too big for me...then went to the grocery store. Got home, Unloaded the stuff and put it away, and I AM WHIPPED! That scares me because I know there is still active cancer in my body...but then I have to remind myself I just had major surgery and it hasn't even been three weeks ago yet.
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Marybe: So glad the scan went smoothly at least - sometimes that can be a battle all in itself with machines breaking or scheduling snafus. I guess our radiologists here are slow or something...I suppose I could call and get them, but they always say it takes 2 business days and by then I'm going to see my onc anyway so I just wait. :-\
LOL at the mummy image!!
I have gained weight lately, but not sure I can blame that on the X. I am having a hard time lately balancing what I should eat and what I think I "deserve" to eat...you know, I might die soon so why not have chocolate for breakfast? I have pants/jeans that do not fit anymore so I really need to get over that way of thinking and soon!
Marybe said it very well about how I want to be treated -- there are times when I do sorta want some exceptions made, but most of the time I just want to be 'average joe'. I don't mind the pink stuff though, but maybe that's cause I don't get a ton of it -- mostly I get cards.
I'm so sorry about your friend - sounds like she is a special woman and a real trooper to go through all she has/is and still doesn't complain. I also beleive I am very fortunate. It's not been a cake walk, but I've had it easier than some. We must count our blessings daily!!
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Marybe,
We are all waiting with you for your scan results. Youare in my thoughts every day. Tomorrow i will be thinking of you a LOT!! Hang in there....
Judie0 -
Marybe...prayers. We are here.
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Thinking of you, Marybe, and hoping and praying for good news.
Susan0 -
I will find out something tonight....am going to pick up the results after work and then if my friend is still in the hospital I will stay and visit her for awhile. They were talking to her yesterday about going to a place for rehab until she gets stronger....I myself don't think she is ready to go anywhere, but the hospitals seem to like to kick you out these days. Anyway, I will let you all know and I am not expecting any miracles, but would be oh so happy if they tell me things have stayed the same in spite of tumor markers. Something else I have decided, if it OK with everyone, I like you all so much, I am just going to stay on this Xeloda thread even if I do have to go off the medication itself.
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Marybe, Please stay with us. We have a niche of understanding and fellowship together.
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Yes, Marybe, please stay!!
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Glad you are staying, Marybe! When I really think about what a deep relationship we can get to with each other here, I am amazed and so so so grateful. The fact that we are all dealing with the same thing yet a different exact thing for each, and we need understanding. That is what I get here, is understanding, from those who really get the feeling of waiting for scan results or biopsy results or...the whole carousel.
I am going to the oncologist and I will probably be back late this afternoon.....Marybe!!!! HUGS!!
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Marybe so glad the scan went well, now waiting game, not too bad, I am awaiting my results also....
The SE's are getting better the hands and feet are still peeling and it will be 7 weeks on friday since I took the Xeloda, darn it stays in you system long,,,,eyes are still watering and the cuticles on around the nails are peeling also......i am still wobbily also, didn't know that it was the medication that put me off balance....thanks for asking
Sue good luck at the drs. let us know what happens....
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Marybe - Thanks for answering my questions on weight and the barium stuff. I understand now that you said you are allergic to shellfish. I love reading your posts because there is usually something in them that makes me chuckle, and I love your attitude and sense of humor. I have been thinking about you all day and hoping your test results are good. I am an "instant gratification" type girl that I want to know NOW, not later, or tomorrow but NOW, and of course in this business it is always later it seems like. I feel so bad for your friend in the hospital, I hope she gets better soon. I have lymphedema in my right arm and she is right, it does not hurt for the most part and I also had a clot in the lung when I took Tamoxifen so things are always tricky when you are on a blood thinner. The only thing that it seems like I can eat when I take the X is cold foods, no hot meals and I crave peanut butter and sometimes tomatoes, I always tell people it is like morning sickness, and I truly think it is for me. I will have to look for the peanut butter pumpkins, of course they will be all the better because they have chocolate with them.
I went to the plastic surgeon today that put my implants in the second time because one has "fallen and can't get up"
, anyway, she is going to do surgery on October 31. She wanted to do it on my off week from X and then of course I have to go off the blood thinner for 5 days. I hope this will finally be the last of it. I had them put in back in 1992 when I was first diagnosed but developed a strep infection in the blood stream and had to have them taken out then decided I wasn't getting any younger so went back in 2007 to have them put back in, got a staph infection so was in there about 3 times until we got rid of that then in 2010 we had to fix the left one again because it had shifted so I hope this will be the last of it. Sometimes I wish I had never gone back and had them done but it just makes me feel better when I get dressed to look more normal. I still need to talk to the onco but I am sure he will be ok with it.0 -
Hi, Ive been following this thread to learn a little more about Xeloda. I think it will be my next chemo if I can get my hands on any. My co-pay woud be $800 a month without assistance. While my social worker has applied to several assistance progarms, it seems since I have government health benefits as a former government employee, that is one of the stipulations of non-acceptance. Have any of you other gals that are previous government employees found a way around this. We are really not financially set to meet $800 a month, but I suppose one would reach their catastrophic limit pretty fast that way. I have reached my catastrophic the last 3 years anyway. Wasn't sure if this was the right place to post this but I am hoping to be a blistered sister diva if possible. Sue, sorry to hear of your news and I hope you find some way to deal with this. All you other gals are incredible for hanging in also. I have only failed 2 chemos since mets found me so far and am currently on Navelbine. Thanks for the ear! HunkyD
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Hi there Hunkydory (cute name, btw!) Ask your onc's office about the Xeloda co-pay card. I got one and they pay all my co-pays! Mine are only about $40 for each cycle, and I'm not sure what the maximum is, but anything would help I guess. Good luck!
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Hunky,
I just checked mine and it says $116.00 for a 14 day supply. I have secondary insurance through my husband so we will see what happens. SO GLAD to see you here...I am..adjusting. At the oncologist today they offered the services of a psychotherapist, so I guess I am maybe not faking it as well as I thought. LOL at blistered sisters!!!
jeanieb, sorry for all the reconstruct-o drama you have had. I know it sucks. I only had wound healing issues and it all took 2 1/2 years but we finally got it right--oh, yah, just in time to have the incision that heart patients get when they took out part of my sternum (but not enough, apparently). My PS had tried a lot of stuff to get more nipple projection on the right. Ironically, now that part of the sternum is gone and some of the pectoralis muscle from that side is in the spot where the sternum used to be, BLAM, nipple projection!!! Matches the other side and everything! He and I have become very close through all this and I emailed him about this and told him "We have found the answer!! The STERNUM was in the way!!"
Marybe, prayers. Check in if you can. Much love.
Blondie, I am to start Xeloda as soon as it gets approved and overnighted to me from the mail order pharmacy. The onc said we didn't really have to do Xeloda and radiation concurrently, because that would be very aggressive treatment. I said I was all for aggressive treatment, so we will do the rads sometime midway through the six cycles of Xeloda. I saw the path report and there was extension into the lymphatics (vessels, NOT nodes) the same way it was when I had my first mastectomy, so I want to kill the sneaky rat bastard and I am young and strong and willing. We still get to go on our vacation!
I was in the drug store for all the meds and trying to remember what it was I was supposed to look for....I know what kind but I totally forgot about the lotions. Tomorrow.....
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Ok, ladies, the scans are back and while it isn't good, it could have been a lot worse. The largest tumor is 6.8 X 8.7 cm.....the general impression says diffuse liver metastasis....overall # in size of mets have increased since prior exam. But it says my spleen is unremarkable, no pancreatic or adrenal masses, no ascites or adenopathy and no bowel obstruction. And no problems in my lungs. So while it is not really good news, it is not all that horrible since I was expecting things to have progressed because the tumor markers had gone so high. I guess now I will just have to wait and see what my onco is going to suggest....I am also going to see what the other onco I saw thinks and the one I went to at MDAnderson.....maybe I will go back to TX and this other onco will at least work with him. My onco really likes to be in charge and I just don't think is very receptive to other opinions....he also does not like the message boards. Anyway, I am oddly enough not upset because as I said I was expecting it. The CA27.29 may not be an accurate monitor for some, but it is for me.
I then went to visit my friend after picking up my report and she was a little better today. They had her sitting up in a chair and tomorrow they are going to try to stretch her esophagus. She is an excellent example of what too much aggressive chemo can do to you and I really am selfish and maybe stupid enough to know that I am not willing to do something that is going to take away from my quality of life. So I want to hear all the options before I make any decisions and unless my onco calls and tells me to come in early, my appt is not until the 26th. In the meantime I am just going to keep on taking my Xeloda.
Hunkydory, I think K0-lo knows of a program that will help pay for the Xeloda. Have you contacted the company that manufactures it.....sometimes they will help.
Jeanie, Hope they get those boobs straightened out for you.I had a reaction to the polyurethane coating on the implant which was supposed to dissolve, but did not and they had to open me up to see if the little bumps along the incision line were little tumors. My implant has since dropped, but it's 21 yrs old.....maybe it is trying to catch up with the real one which has definitely headed south. Super, What did your onco say?
Thanks to everyone for worrying along with me.
Super, just read your post.....glad you still have a sense of humor.
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Hey, Marybe,
Were you sad even though the markers were high? My scan was mixed. I was concerned but then I thought, "hey, you and Xeloda or just you, are holding back what could be a devious and wildly aggressive thing that would be expected to take over your entire body". So immune system or chemistry or whatever, it's keeping this mutation from outsmarting the defenses. I don't know if that makes sense.....
Hunky, Re co-pay, Genentech, which makes X offers the assistance but there is some glitch about government... Perhaps if YOU, The patient, call them, they will find a loophole. They have grants. Best of luck.
Jeanie, that's awesome that they will fix you. I have one D and one C and I'm tired of it. I'm gonna ask for reduction!
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Marybe: Glad to hear from you - have been sending good thoughts your way. Glad that the scans, although not the greatest, were not too bad. Amazing and lucky that your alarm system alerts you when something could be wrong. I know that you are up for the next fight, and have good advice. You are the most sensible person I know, in addition to being a hell of a fighter, and you still find room to help everyone else - you are amazing. Onward and upward! Sue
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Bondie, waiting with you and hoping for the best news re: scans. Sending good karma your way. Sue
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Marybe: I'm glad the results were not as bad as you thought they were going to be. Sorry you have to wait so long to talk to your onc to see what he wants to do. I agree with Sue - you are an amazing woman!!
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Marybe - I have to say you are a truly remarkable lady. I admire your attitude and how you take things in stride. I would hope even if they do switch you to another type of chemo you do stay with the rest of us or we may all have to follow you to the other site and post on that. I am very sorry the scan was not as good as we had hoped but am thankful it was not as bad as it could have been. I am confident that they will find the right mix for you and I think you have done the right thing going to see more than one onco. It never, ever hurts to get another opinion. I just wish you did not have to wait until the 26th to find out what they are going to do, the waiting is so hard. You truly are an inspiration to me, I hope you know how much your posts have helped me. I had to laugh when you said your implant was 21 years old and the other one was heading south, mine had headed south before the implants and I had always joked with my friends that I would have the "perkiest" ones in the nursing home as I had a bilateral mastectomy so they should both be the same but I am proven wrong, once again!!!! I am just glad they are able to do something, I am hoping it will get rid of the pain I am having. If I lay down and get it just right it is not so sore but otherwise I think it is pulling on the muscle under there.
K-Lo - Did you not have a mastectomy or did they not get them even? I had to have them both removed, I was way to large, plus the type I had always goes to the other side eventually so I did not want to take the chance. But oh, look, I got rid of both of them and it shows up in the gallbladder, now what kind of BC moves to that
. Sueper - I did not do the nipple thing. I have had so many problems with infections and other things involved with them I did not want to even go there and since it is both sides I don't have to match anything. She told me I would have to wear a bra for a month 24-7
, I have not worn one for 20 years and I do not relish the thought of putting one on but I can do anything for a month or 6 months or however long it takes, which I think we can all relate to that. 0 -
Thanks Sue
Marybe sorry about the scan but I always say there is somebody worse off than me.
Lynn we all are amazing women
SE's are slowly going away, it will be 7 weeks as I said on Friday damn X stays in your system a long time....going back on it next week and Zometa next week also, but it is nice to feel somewhat normal for a bit, not that way since July!!!
Still waiting for the report....
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Blondie: You ALL are amazing women indeed! Didn't mean to leave anyone out.
Sorry you are still waiting! Any ETA on the report??
I still say that your se's are taking so long to go away because they had you on such a high dose there for awhile!! That or I'm just very lucky - my 2.5 week break seemed to have got the majority out of my system.
I'm still worried deep down inside (have not said anything to anyone except here) that my dose is not enough. I guess it just seems to good to be true or something - how can it be working if I have so few se's?! I see my onc on Friday so I'm going to bend his ear a bit about this and see what he has to say. I also want to talk him into one more scan sometime this year - I've met my out-of-pocket deductible so insurance is paying 100% right now so I want those super-expensive tests done on this calendar year. Hopefully he'll go for that.
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Lynn - I would think your onco would agree to the tests you want. I have done that before, and he was very receptive to it and agreed we might as well do it in December where you don't have to pay instead of Jan or Feb when you would have to start over. I can understand where you are coming from on the side effects, I too, think you have to have side effects for it to be working but wonder if that is true. Let me know what you doctor says when you ask. I guess any drug has side effects and not everyone gets them but the medicine still works so maybe that is the way this is also. I can't remember what dosage do you take and are you on 14 or 7 day?
Blondie - Sorry you had to deal with those darn SEs for so long. It seems like they should have cleared up way before this but like you said, who knows how long this stuff stays with us. Were you on a real high dosage doing the 14 day cycle? I hope you do much better on it this time.
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Marybe,
Please do continue here with us here on the Xeloda tnread!! We all definitely want to know what you will be doing. We all care about you and want you here with us. I am relieved too that it wasn't a lot worse, but wish so much you could have done well on Xeloda. I am thinking of you, Marybe.
As you know, due to breaking my ankle I had to be off Xeloda for about two weeks. Had a tumor marker done at about the end of that off period and it had gone up 100 points! I am back on now so hoping it will be working.
I am sorry for all of our Divas who are suffering with S/E on Xeloda. Wishing you all well. And please do NOT leave us, Marybe.
Judie
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I am not going anywhere, Judie.....except maybe TX. I wrote to the onco I saw at MDAnderson tonight and told him what is going on and that I would like to come back to be checked out and get his opinion. And I agree, we are ALL amazing women, thought that when I was reading today at work,but did not have time to write back and someone, or maybe it was a few of you were saying I was amazing. I thought, well actually aren't we all.....we are all dealing with breast cancer and I think we are all doing a pretty durn good job of handling it and that makes us amazing. It's not as if any of us are crying in our beer or pounding on a pillow and sobbing Why me? Why did this have to happen to me?!? Honestly I have never even asked that question, just figure it happened so I have to deal with it the best I can....I was just unlucky enough to be the one in eight and if you ask me I think it's about time they changed those statistics....seems more like one in 5 by now.
Did any of you ever used to watch that show Party of Five?....the older brother Charlie, I think was his name, developed cancer. The way he took it was terrible...he felt so sorry for himself and was downright mean to everyone and hated the world. I remember telling someone that I had never known anyone to react that way and he was giving cancer patients a bad name.....oh I am sure there are some who do that, but I am happy I do not know any. Now the Big C......I love that show and the way that actor is portrayed....Boy could I relate when she was soooo happy that her fingernail fell off. Anyway, I think you all are amazing and I am happy to be friends with you, just sorry about the circumstances that brought us together.
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Marybe, I am in Texas...but not in Houston. If you are driving I will come and meet you for coffee on your way through Dallas!!
I agree we are all amazing. The fact of your existence--a group of people going through a set of circumstances much like my own--is tremendously comforting. I love the humor, the anger, the sarcasm, the beauty of friendship and the love.
I didn't hear from the Xeloda people today (Xeloda people--sounds like Zombies)...called the onco nurse and told her and she left me a message that she called them again and they should call me tomorrow. I am using "Xeloda people" to describe the mail order pharmacy for my insurance that we have to use for Xeloda, so hopefully they are not going to balk or telll me I have a $3 million dollar copay or something.
First play practice tonight at church was great, plently of kids and lots of adult help...the word has gotten around that I will be doing treatment this year during the production of the play and I have delegated absolutely everything except actually being with the kids and practicing the play. I was SO GLAD to be there with those kids again tonight. It made my heart smile. I feel happier and more hopeful than I have felt in days.
I know a big part of that is having a treatment plan...but I got a slight surprise at the radiation oncologist in that I was expecting 10 days of radiation and she told me she wants to radiate the mediastinal lymph nodes as well as the entire sternum and to do 28 days. I'm in, told her the same thing I told the medical onco--be as aggressive as you think I can stand! I just wasn't expecting that.
Hope all have a nice evening with no side effects!!
Love,
Sue
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I originally started on 4000 mg per day, but quickly needed the dose lowered. I eventually found 2500 mg a day, 2 wks on, 1 wk off, tolerable. Breast cancer had been discovered in four chest lymph nodes (recurrence) in Sept 2010. A PetScan in Feb 2011 found no trace of cancer. I am now on a maintenence dosage of Xeloda 500 mg in a.m., and again in pm. I also need to take Neurontin for neuropathy. The end of the second week each round is tough. I am very thirsty, drink a gallon of water a day and use incredible amounts of body lotion. Sleep is difficult. Cognitively I am having short term memory, word recall problems. I also am a little confused and motor skills require greater concentration. Anybody else with these problems? Is this normal?.
I work full-time and I worry about competency.
For Dry Eye Fish Oil does seem to help, but it needs to be taken consistently. Am taking Turmeric and do eat Organic Cottage Cheese emulsified with Flax seed oil. I think that was very helpful in the efficacy of treatment.
Recently purchased a himalayan accupressure mat from Amazon, plus coconut oil for skin and hair. Will let you know if they help.
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Jeanie beanie, I had mastectomy with flap reconstruction. I think the natural breast gains weight while the flap does not. Franken-boobs.
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**Snorts at frankenboobs*...I had bilat DIEP flap reconstruction. Ya know that Picasso with the face and the eyes and nose are all moved around from where they should be--that's MY torso. (Hope I didn't offend any arts majors...I am a Philistine.)
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