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All about Xeloda

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Comments

  • minxie
    minxie Member Posts: 239
    edited August 2017

    I took my last dose Monday morning. Only today do I finally feel somewhat human again. One of the research coordinators told me they could lower the dose, but the trial says schedule has to be 14/7. I simply don't feel my body is capable of handling 14 days straight of this drug, no matter what the dose. I'm talking to my doctor next Tuesday. Right now my feelings are that I bail on the trial but continue the Xeloda at a lower dose, 7/7. I plan on insisting upon it.

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited August 2017

    Minxie - sounds like the plan - I would too.

  • pajim
    pajim Member Posts: 930
    edited August 2017

    Glad to hear you are at the end of the cycle. If they'll lower you to 2500 or 3000 mg you may be able to go 14 days. Or you can try. After 7 days if it's bad you just stop taking it. You can drop out of the trial at any time.

    I realize we're all conditioned to take the medicines no matter what because we think that's all that's keeping us alive, but a 10 day cycle won't hurt, neither will an extra week off. The ladies on Ibrance take an extra week off all the time and no one thinks anything of it.

  • Lita57
    Lita57 Member Posts: 2,338
    edited August 2017

    it is with great sadness that I must say goodbye now. You ladies have been wonderful, uplifting, and wise.

    Cancer has progressed. Brain MRI being scheduled because of headaches, grey spots in front of eyes, and the aural whooshing sounds. Doesn't sound good, I know.

    Starting Taxol in 2 wks. Just joined Taxol thread, but will still be on bones and liver thread, so I will still hear from some of you there.

    I am devastated.

    My love to you all,

    Lita


  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 274
    edited August 2017

    Lita, I don't want you to leave. I follow all your advice about Xeloda. I understand you need to move on but I'm going to miss you 😘

    Anita

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2017

    hugs to you Lita.

  • pajim
    pajim Member Posts: 930
    edited August 2017

    Aw Lita, I'm so sorry. I truly wish that the next treatment (Taxol??) will kick everything to the curb.

    Many thanks for all your wisdom and your help.

    Not to mention the legions of hugs.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    Lita, it looks as though you've never been on hard chemo (infusions), only Xeloda? Chemo is tough but tends to work pretty well. I myself was NED for almost 4 year after taxotere and Cytoxin. I wish you the best of luck on taxol, hoping it's kicks your cancer to the curb and give some you some more good years ahead. See you on the other threads.

    :)

    Stefanie

  • Stilts
    Stilts Member Posts: 228
    edited August 2017

    Lita: I have been inspired by so many of your posts...sending positive thoughts and prayers !


  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited August 2017

    Lita - hope you will keep posting your experience and knowledge here.

  • AmyQ
    AmyQ Member Posts: 821
    edited August 2017

    Lita,

    Prayers Taxol gets you good quality of life for a long time. Please don't say goodbye...

    Amy

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited August 2017

    I always hate to see someone leave, but I guess we all will at some point. Lita, good luck with your next treatment. X is surely a good one, seems most get quite a long time on it. Ibrance will be my next treatment when X fails and then weekly Taxo when the Ibrance fails. Not sure I will go the Taxol way or not. Just not wanting to do IV chemo again. So I will be watching that thread as well. May Taxol be kind to you Lta.

  • Lita57
    Lita57 Member Posts: 2,338
    edited August 2017

    Thanks, everyone. I'm still trying not to freak out too much about the brain stuff. Had a nice patio party on Saturday, and that was a welcome distraction. Headaches and dizziness weren't too bad, but Sunday was another story. Then I had a nose bleed in the middle of the night, last night. What next?

    I'll keep you all posted. Brain scan this Friday!

  • Nel
    Nel Member Posts: 597
    edited August 2017

    Lita,

    Gentle hugs and all good things with taxol   Keep us posted on the brain scan

    No diarrhea but constipation, used a stool softner - helped a bit now on to miralax and we will see how that works    That is my biggest side effect, so tolerable 

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    lita, someone correct me if I'm wrong, but I thought her2- does not typically metastasize to the brain.if this is so, maybe it's something's else. Let see hope so.

  • Lita57
    Lita57 Member Posts: 2,338
    edited August 2017

    Stef, my DD and I did some research...could also be either benign intracranial hypertension, or secondary intracranial hypertension resulting from a growing tumor.

    We've heard of people's cancer changing from + to -, and vice versa. Maybe need to get tested again.

  • shepkitty
    shepkitty Member Posts: 878
    edited August 2017

    Stefajoy ~ HER2 status doesn't matter ; brain mets can happen to anyone. I'm HER2- and was DX'd this past January with brain mets.

    A secondary tumor, wherever it it is, can have different properties than the original tumor in the breast. If the brain tumor can be biopsied it makes for an easier plan of treatment. HER2+ tumors and HER2- tumors each react differently to chemo and medication.

    In my case, my brain mets were HER2-....the same as my primary cancer. I had the largest tumor surgically removed. A few weeks after surgery I had two Gamma Knife procedures , each a week apart, then I started Xeloda. Had my brain mets been HER2+ , I would have been put on Herceptin.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2017

    From what I have read, while brain mets can happen with both Her2 negative and Her2 positive bc, brain mets are more likely with originally Her2 positive or triple negative bc.

    "Among several risk factors identified in previous studies, negative estrogen receptor (ER) or progesterone receptor (PR) [4, 5, 6, 7, 8] and human epidermal growth factor receptor-2 (HER2) overexpression [6, 9] have been associated with a higher risk of development of BM." (Breast Cancer Research200810:R20)

    I'm sorry any of us have to even be talking about such a thing. I hope your time waiting for the MRI is not too awful, Lita. Shepkitty, I hope the treatment you had, and now X, is super-effective for a super-long time. Her 2 negative is in your favor.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    My feet are peeling in sheets

  • pajim
    pajim Member Posts: 930
    edited August 2017

    Oh dear. I get blisters but not peeling so I don't know what to suggest. I can offer some hugs?!?

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    thanks pajim. Hugs are always accepted.

    Actually, they don't hurt that much. The skin is peeling, but the skin underneath isn't too raw. It's really weird.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2017

    Stefanie, Oh no! Why now when they were ok before?! (Not really asking a question, just dismayed,)

  • dlb823
    dlb823 Member Posts: 2,701
    edited August 2017

    Stephanie, I also had an episode of peeling around cycle #3 or #4, when I hadn't had one previously, and it was just like you described it -- peeling, but the underneath layer of skin wasn't the least bit sore. You just have to be very careful not to peel into healthy skin. Thankfully, it hasn't happened again, and I'm on #7 now.

    Editing to add... I took our discussions about the possible contradiction for green tea to heart this past month and, while I haven't totally eliminated it nor my immune building supplements from my regimen, I have cut back some and have also been careful not to take them near the time as I do my Xeloda. And my TMs dropped another 40 pts. this past cycle -- a bigger drop than the previous month. I don't know if the two are related, but I'm going to continue doing it this way, as well as doing any de-toxing only during my week off.



  • Scwilly
    Scwilly Member Posts: 232
    edited August 2017

    Just joining you all this morning. I was on Ibrance for 7 months, but my last scan showed the spots in my liver had grown. So far theres no sign of cancer anywhere else. So I've been switched to Xeloda. So will be reading this thread for advice and support. Thanks to you all in advance.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    Deanna, I do want to mention that your salve gift hasbeen lovely. I'm cycle 5, I think..and I spent a few days at the beach. Sand is very bad for hsf, so I wasn't doing myself any favors. Hopefully it'll passs and not return. SO happy this seems to be working for you. I'll get my markers checked next week..hopefully another drop for me too.

    I just found out I have to have my tissue expanders removed (they have been in for two years) because they won't do an MRI with them in. Even though someone did give me one, which found my liver met so I'm glad about that, but COH says it's a no no. So...yay..another reconstructive surgery. Just what I wanted....NOT.

    Stefanie

  • AmyQ
    AmyQ Member Posts: 821
    edited August 2017

    Deanna,

    Salve? If you have a miracle salve to help HFS I would love to know about it - my feet while they look atrocious, aren't too painful but they do hurt. My toenails look like they've been through a meat grinder - most on my right foot have fallen off. Yikes.

    Btw, my intolerance to beef continues however whoever suggested bison, is right. It's delicious and it doesn't upset my stomach. Thank you -

    I'm sorry some of you are suffering so. I wish I could help.

    Amy

  • Waitingforspring
    Waitingforspring Member Posts: 11
    edited September 2017

    speak to your medical oncologist asap you should not have to go through tha

  • Waitingforspring
    Waitingforspring Member Posts: 11
    edited August 2017

    welcome Scwilly the posts here are so very helpful

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2017

    Amy, I will looks up the name of the salve when I get home. It's helpful, but not a cure all. I use a combo of the salve, udder cream and bag balm.

    Stefanie

  • dlb823
    dlb823 Member Posts: 2,701
    edited August 2017

    Stefanie, like you, I am using a combo of things. I'm sending Amy a sample of the stinky healing salve, which I still use some, but I was telling her in a PM that I also found something helpful on Amazon -- a 40% urea cream by Pursources. But I swear HFS just has a mind of its own, and sometimes you have to switch around to keep up with it! Plus I think we are each different, so what works for some, may not do anything for others.