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All about Xeloda

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Comments

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Hello Divas!  Been away from the board for a bit and it really shows! This thread moves fast sometimes.  Gonna try and catch up with everyone, but please forgive me if I overlook someone/something....

    Sueper:   So you've been on it now since Saturday...is that right?  How's it going??  Love your description -- Tasmanian Devil...I can relate!! 

    Bettye:  I am so sorry X didn't work for you! Hope you get into the trial you want!

    Low!!  I am such a bad friend...didn't even realize you had switched to X.  You will make a wonderful Diva!!  Sounds like you are going about it in a good way.  Not like I did...I had constipation on the previous chemo, but everyone was so adamant I'd have diarrhhea that I stopped all my Colace and fiber-rich foods thinking I didn't need it anymore.  I was WRONG!  I still have constipation on X, and stopping all those things made for a HORRIBLE few days!  OMG...such discomfort.  I'm back on my regimine now and all is good again. Whew!

    So I saw my onc on Friday - the real onc, not his silly NP, so I got some answers.  We talked about my dose and how I was worried it was not enough.  He said that this chemo is very dose-dependant and what you want is to find just the right balance for making it work against the cancer, but not so strong that you can't tolerate the se's.  With that in mind, I decided to try increasing my dose slightly - adding in one 150mg pill twice a day.  A very small increase, but I understand the more you can take, the better your chances are of it working.  Of course, no one knows for sure, but it makes sense to me.  So, now I'm on 2,600 a day.  Just started on Saturday so doing ok so far.  I'm very curious as to how this will play out as we go through this cycle though.

    I also had these bumps come up on my tongue and they hurt and felt weird.  He gave me a script for some tablets I let dissolve in my mouth a few times a day.  They already seem better/smaller today.  Anyone else had this?  Is this what they call "mouth sores"??

    So I wanted everyone's opinion on something please.  Haven't wanted to put it on the "main" board without "testing the waters" here.  I am considering a change at work.  They are very good to me and are very understanding and accomodating.  The issue is that (long story) traffic has increased quite a bit -- I'm getting up 15 minutes early to arrive at the same time and spending those extra 15 minutes in heavy stop-n-go traffic.  Also, we have recently hired a new person in our department.  She seems to do ok work-wise, but from a personality standpoint, she and I are like oil and water - do NOT mix.  I've never had anyone annoy me like she does...constantly!  There is nothing I can do about it, but the overall gist is now I don't like my job as much as I have.  Sometimes I think that I should spend as much time as possible doing less stressful things or just relaxing, but then on the other hand I really do push myself and more times than not, I feel better if I do, as opposed to just lying around.  Anyway, all that to say that I'm considering asking if I can telecommute a couple days a week.  I will still have to work, obviously, but I would not have the commute nor the annoying co-worker as often.  It's something I would have to clear with my boss and HR, etc. but I think they would be agreeable to it.  I guess what I need to do is make a list of pros and cons or something because I just can't make up my mind.  My boss is on vacation for 2 weeks so I've got time to mull this over and talk to him about it when he gets back.  I know some will push for me to quit entirely, but that is not what I want (nor could I afford to).  That's why I haven't taken this to the "full board" yet.....just seeing what you all think about this.  Do you think it's a good idea, or would it be more prudent to wait and use those options when I really NEED it vs that I just WANT it??  Thanks in advance for your thoughts on this subject. 

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited October 2011

    Marybe - How is your friend doing?  I hope she is better, it sounded like she was a very sick lady.  Our insurance is a lot like yours.  Once we hit our deductible of $3,000 all prescriptions are paid for after that and prescriptions count towards the deductible so I am sure one round of X for the month will take care of that deductible.  My Zometa since it is IV we still have to pay 10% of whatever it is along with all doctors and other medical things until we reach the $7,000 total out of pocket then things are paid for after that.  My oncologist office did get me a card so the Zometa is only a $35.00 copay that I have to pay instead of the $200 and they said they have something for X also but will have to wait until Thursday to see what that is.  Mine comes mail order but it is a Walgreens specialty pharmacy and they just call when it is time and send it out which is very convenient and I don't have to worry about ordering it myself.

    Livingit - I am glad you have been able to do a few things and this is your off week.  It is nice but it seems like I am just feeling ok from not taking it and it is time again, but I certainly enjoy the off days that is for sure. 

     I still have nausea for 3 days after I am done and I am on the 7 on and 7 off plan but even today, which is the 4th day off I am still having some nausea.  Does anyone else have that or do you take the anti-nausea medicine the whole month?  I even found with taking the Zofran this last time I still felt nauseated a lot, which is nothing compared to what a lot of you are going through, but I just wondered if something else was going on or if the X caused that in anyone else.  I go to the onco on Thursday so I hope to find out if it X helping, and so far nor allergic reaction this time.  It may still be to soon to tell if it is helping but I hope to see a teeny tiny improvement in markers.   I hope they are planning on scans in the next month or two, I am sure if they do not do them in November they will be done in December, but I want to know nowLaughing.  I feel like I have just been waiting since March to see what the next step is going to be, but I also realize they have to try these things to see what is going to work and I need to give it time.   Hope you all had a good weekend and could get out and enjoy the nice weather before the snow flys, well here anyway.  It has been just beautiful fall weather but they are talking freezing for 3 nights in a row, although it will get up to the 50s during the day so it will be nice.

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited October 2011

    Lynn1

    Do it now.  I waited too long - my last day was May 20th - I had two months of fum and frolic and by July 20th, the weird shit started happening.   I had an opportunity to go out in March and in hindsight, I should have done it.  You really don't know what can happen and if you can, give yourself the lest stress as possible. 

    Hugs..xxoo

    Shar

  • steelrose
    steelrose Member Posts: 318
    edited October 2011

    Low...

    I knew you were a Diva! KissI sincerely hope that Xeloda works for you. You're one of my favorite ladies, and you've been on such a rollercoaster lately... time for some relief. I'm a Xeloda vet, but I lurk around here like a mother hen... cluck-cluck-clucking every now and then. These ladies have a lot of combined experience with the side effects, and they are very free about sharing. Feel free to pm me too. And watch your precious feet!

    Lynn...

    I completely agree with Sharon re. your work situation... get rid of as much stress as you possibly can. It weakens our immune system, and toxic people like the lady you described are NOT GOOD for you! Wishing you the best.

    Love to all...

    Rose.

  • hunkydory
    hunkydory Member Posts: 722
    edited October 2011

    Just wanted to pop in and say thanks for all the suggestions on helping with co pay.  I called genetech myself like was suggested and was told to download some forms to take to my onc.  I did this so we will see what happens.  Scary thing is, the financial officer at my clinic had already already talked to them.  I don't know if the forms ever hit my oncologist desk as she went ahead and put me on the "NavyBean"  I really don't think she saw them after my last visit with her as Xeloda was what she wanted me on in the first place.  She is new at our hospital.

    My counts have gone down just enough to call my current treatment working, or just a coincedence.  I will have scans after this months treatment.  I just want to have something in line to fall back on.  I did the TAC at the onset in 2008 so I was excited about a new drug even though it sounds not so fun.  Sue, glad you have got a start on this new treatment and I hope it helps.  My gawd, you other gals inspire me so much I just love to come on here and read.  I don't have many to talk to that are stage 4 so it helps me.  Please don't boot me!  After several stays at the hospital with different problems, I just want something to look forward to.  The "NavyBean" has really given me some fits with neuropathy to the point that walking is a problem.  OK, enough whining from me.  I apologize, and really didn't mean to come on here to do that.  Thank you for your help and I am keeping my fingers crossed the X co pay assistance card will be in my purse before long, or at least when I need it.  I have met my catastrophic for the last 3 years so I guess it won't really matter that much.  At $800 a month it will only take about 6 months plus a couple scans and I will be catastrophic again.  Thanks so much and hugs to ya all.  Hunkydory

  • K-Lo
    K-Lo Member Posts: 826
    edited October 2011

    Hunky, I don't know why, but I had a co-pay number right away.  I have faxed doctors notes to people, anything that says you are stage 4 or inoperable or have metastases.   PM me if you want to talk it thru.  Id love to help.

  • sueper13
    sueper13 Member Posts: 360
    edited October 2011

    Hunky, so good to see you here.  No one will boot you!!  So glad to hear you will so easily be catastrophic again!! (I'm sorry, I couldn't resist!) 

    K-Lo, you are so sweet.

    See PS tomorrow to get a stitch out at the very top which is BOTHERING me. He always says, "Those are absorbable" and then takes it out anyway.  I come from a long line of people who have trouble absorbing absorbable stitches--we see it as a foreign object and eventually bring it to the surface. 

    Then, flying over to Tennessee to attend the Jack Daniel's World IInvitational BarBQue Contest--my husband is a judge.  Lots of good food and drinking, I guess I will get to be the designated driver!!

    Two days down on the X, I started Sunday morning. Only SE so far is nausea, big nausea.   I took the Zofran and still felt ill-ish, so asked for Compazine to be called in.  That worked, but I slept all day!  SO GLAD not to be working this time, it makes all the difference.

    Take care and much love to all you Divas

    Sue

  • apple
    apple Member Posts: 1,466
    edited October 2011

    i donated some of my sister in laws.. who sadly passed from breast cancer to someone here, who paid me for postage.  She had all sorts of alternative supplements.  i should have kept some of them but hay.

  • BettyeE
    BettyeE Member Posts: 136
    edited October 2011

    Hey X divas,

    I have I have about 20 X 500 mg. I am no longer on this treatment. Send me your address if you need the help. I would love to give them to someone in need.

    Bettye

  • sueper13
    sueper13 Member Posts: 360
    edited October 2011

    Nice, Bettye!  Sorry you couldn't take the X, was it you that had the allergic reaction or was that someone else?  (Yes, people, chemobrain is REAL).  Travelling to Tennessee today, after I see my PS....a friend is giving me a ride to the doctor and then to the airport.  The flight is full-ish but I will show up anyway. (I fly free if there is an empty seat)...and if going to Chattanooga doesn't work, there's a flight to Knoxville that leaves a half hour later.  Just going to be the luck of the draw this time....talk soon, off to Lynchburg, TN to attend the 23rd Annual Jack Daniel's World Invitational BarBQue Contest.  This will be FUN!  I will be checking in.  Love to all of you!

    Love,

    Sue

  • apple
    apple Member Posts: 1,466
    edited October 2011

    well.. i've had my two week break.  I guess it's back to Xeloda tomorrow.

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Hunky:  nope, no one will boot you!! You are more than welcome to stay!!

    Sueper:  That sounds like a fun trip!!  BBQ sounds yummy!  Hope you have a great time!  Let us hear all about it when you get back!!

    Apple:  I bet you really enjoyed those 2 weeks off - I know I did!  How are the se's for you now?

    Low and Rose:  thank you for your input/advice.  I really appreciate it very much!

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited October 2011

    I have enjoyed my 7 weeks off but I will tell you the tumor in my lung is growing (can feel it and it hurts) so drs. today will be back on X by the end of the week at a different dosage!!

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Blondie:  I hope they can find just the right amount of X for you so it beats back that tumor, but allows you much more QOL.  Let us know what dose amount you decide on!

  • apple
    apple Member Posts: 1,466
    edited October 2011

    my side effects are much better, i'd enjoy three weeks to be frank tho.

  • K-Lo
    K-Lo Member Posts: 826
    edited October 2011

    Hey, y'all, if you saw my negative immature comment on the other thread, please forgive.

    A yearvago I freaked out and could not getvon a plane to Philly. It was soon after the scary talk and new port and as it turns out, my hair did fall completely out within days. Last week I couldn't get on plane to big family fun in Albuquerque. But it was more like I didn't want to be the wet blanket who had to go to bed every 4 hours. Has anyone experienced this? How can you plan your bucket list trips with such phobias?

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Apple: I hear ya on that one!! 

    Kathy:  I'm a little lost....what is your phobia....flying? 

  • jeanne46
    jeanne46 Member Posts: 52
    edited October 2011

    I've found drugs to be helpful for flying. And I hear you about feeling like the wet rag. One idea is to tell everyone before hand that you don't have enough energy for the whole day and will do as much as you can. Then enlist someone to make sure you have a comfy Place to rest. Best of luck.

  • K-Lo
    K-Lo Member Posts: 826
    edited October 2011

    You're getting me, Jeanne. I guess the flying issue is more related to the distance and commitment. But also it matters what the expectations are and the number of people don't know so well, with whom it will feel awkward. So yeah, you have to have that comfort with the people.



    Hugs to all

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Kathy, I agree about the drugs!  A co-worker's DH is very afraid of flying so they just dose him up before they leave -- usually chasing it with some adult beverage, and he does better that way.  Maybe some Ativan and a glass of wine would help?  Just a suggestion...

    I also agree with Jeanne about just being upfront with whoever you're visiting.  Maybe you could even help plan an "agenda" for the day so you know what the "expectations" are?  Surely your family will be understanding and make sure your visit is enjoyable.  What trip is on your bucket list??

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited October 2011

    Onc. put me back on Xeloda when I want to start it (will do it thursday) 7 days on 7 days off @ 4,000 mg, and if the SE's get to bad then will decrease.   Got the copy of the CT scan and the reader said everything was resolved, well isn't that strange cause the tumor on the lung is still there can see the lump and can feel it, really annoyed.  Now if I would have gotten the report when I asked for it, I could have discussed it with the dr. today but now have to call him and say....hey wtf, lol.....

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited October 2011

    K-Lo

    I went to the wedding anyway and just let my family know I need naps - they were so accomodating.  I would just let someone know when I wanted awake and like a jumping jack, my sister would get me awake - thankfully, I wake up pretty quick

  • justjudie
    justjudie Member Posts: 196
    edited October 2011

    Lynn1: I agree that if the job is now sressful for you, it is probably best if you can work out the telecommuting. why not? Go for it.



    Re: taking trips. I have taken quite a few since diagnosed as Stage 4 about a year and a half ago. When trips involve more than just me and the DH, I make sure the people are aware I may not be able to keep up with whatever is going on. that I may need to rest. Everyone is fine with it as long as they know what to expect. I go back to my hotel room orwhatever and sleep or just rest as needed. When I can I join them again. I do try to not be a wet blanket...I encourage DH and whoever else to go and have FUN. Nobody has to hold my hand. Its worked out fine. I can go and enjoy whatever I can and take time out when I need to. Nobody minds. Just be direct about it and no drama.



    Judie

  • K-Lo
    K-Lo Member Posts: 826
    edited October 2011

    Yeah when I went to NJ in May, I felt perfectly calm and in control. Maybe it was this bone scare recently that affected the safe feelings. That's about to be addressed, assertive k- lo taking steps!

    Thanks to all

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Thanks Judie!  Today was the last straw for me.  I am going to take steps as quickly as I can to try and get the telecommunting approved as soon as possible!! 

  • K-Lo
    K-Lo Member Posts: 826
    edited October 2011

    Yay Lynn. Makes many of us happy when one of us can tame better care of herself.

  • steelrose
    steelrose Member Posts: 318
    edited October 2011

    Go Lynn! I think you'll be relieved.

    Blondie... Good luck with the re-start, and I hope you'll call your oncologist right away if things get out of hand again. It does sound like the Xeloda is helping, which is wonderful! Not sure about the lung met? I'm sure you'll demand answers! 

    K-Lo... I travel a lot and have had a few panic attacks. I think it's probably normal in our situation... we all feel more vulnerable... I actually get angry at myself for allowing these attacks to happen! It's the emotional loss of control that I hate. I mean, we can't control the cancer but I'll be darned if it's gonna stop me from getting out there and having as much fun as I can! Wishing you happy, peaceful travels!

    xoxo

    Rose. 

  • Frapp
    Frapp Member Posts: 343
    edited October 2011

    Is anyone here taking xeloda with anything else or are you all only on xeloda?  That is excluding any biophosphinates.

  • Lynn1
    Lynn1 Member Posts: 209
    edited October 2011

    Blondie:  So you start again tomorrow?  I can't remember...were you on the 7/7 plan before or the 14/7?  Isn't 4,000 the same amount?  Please let us know when you get some answers about the lung met!  You go get 'em!!!

    Frapp:  Hi!  I'm on Xeloda only.

  • sueopp
    sueopp Member Posts: 238
    edited October 2011

    Hi Frapp,  I am on xeloda plus daily tykerb (alternative to herceptin, as I am HER2+).  Don't know if it is a biophosphinate or not, but it seems to be working (for now).  Sue

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