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All about Xeloda

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  • Donnabelle
    Donnabelle Member Posts: 140
    edited August 2018

    I haven't posted in quite a while....I was on vacation for a month in New Hampshire with bad wifi, but more so because I was so, so sick from the Xeloda. When I started in June, the first cycle (4/3 for 14/7) gave me unbearable foot problems. Probably 8 blisters, but worse than that, when I walked it was like stepping on nails. On day 10, MO said stop, take a week off, and when I go back do 3/3 for 7/7. Foot problems all over again, but they quickly went away during the 7 day break. That's when the diarrhea started, and it was so severe it landed me in the ER for fluids. Back on for the third cycle and the diarrhea kept on going and going. Never felt so sick. Feet were not painful anymore, but started wicked peeling of the skin, which also affected my hands. Cut my vaca short and came home. Fourth cycle I was down to 2/3. My potassium got very low (from constant diarrhea) and had to get a drip and take pills. I lost about 8 pounds. Finally got my diarrhea under control with immodium, lomotil and budesonide and started feeling better last week! It feels so good to feel good!

    All that is a lead in to the results of my PET on Thursday. Great results! My liver tumors shrunk in half and the SUV went from 18 to 4. All lung mets are gone. One bone met on my spine is completely resolved and a second one is diminished. So....I think I love Madame X! I hope it continues to work well at the lower dose that I seem to be tolerating well.

    Here's to great results for all of us!

    Donna

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited August 2018

    We love great results!

    Anyone have lymphadema? My hand swelled so I was wrapped. One night and my thumb chafed. Palm red. You know. Any thoughts or suggestions?

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    Goldie- did you try the foot cream yet? My feet have completely cleared up. Just my big toenails have an infection underneath them. Doc says to try some Vick’s if not the only way to get rid of it is to have my nails removed. Pretty sure I’m going to pass on that option

  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    Hope all are feeling good... Hugs and kisses..

    Stay strong!!!!

    Just wanted to know... My mother is on 14/7 2/2... X...

    FEELING Extreme fatigue and off and on pain in chest area... Which might be due to bone mets...

    Has taken zometa in the start already...

    How to tackle that??? With calcium intake???

    By supplements or by diet or by painkillers??? Which is effective???

    Plz Donna, zill, Diana, pj do reply

    Thanks in advance...

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited August 2018

    MO said to take 1200 mg of calcium a day for bone mets. Painkillers as needed. I take xgeva and the first rounds made me very fatigued. Like I was in bed at 5 pm.

    Some people swear by Claritin for bone pain. It's an allergy drug.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    San- I agree with Zill on the calcium. My doctor said to take tums and I do use the Claritin a couple days before and after the Xgeva shot. I forgot to this last time and paid the price. I don’t think there is anything we can do for the fatigue. That’s my worst side effect besides gooey runny eyes and of course the dam cataracts.

  • Donnabelle
    Donnabelle Member Posts: 140
    edited August 2018

    I have been taking calcium supplements for years. I don’t know if that has helped but I have never had any pain from my bone mets, however they are tiny so not sure if I would experience pain anyway. I also have heard good things about the Claritin. I’m also on Zometa. It does seem like my fatigue increases a bit after my infusion.

    Good luck!

    Dinn

  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    Thankyou sooo much... So much to take care of...

    Claritin is used as anti allergy drug... I see... I ll check with her onc over that too... She is using Napadoc(paracetamol with caffeine and codiene)...

    Group hug()... Love you all

  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    Are u sure... Claritin.. What 's it's work with body pains.... Might be for allergic issues... Whatsay?

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    San- we are sure it's Claritin . A ton of ladies on here take it. Not sure why it works but when I take it with the Xgeva shot no issues. When I forget like I did this last time every bone hurts for days

  • denny123
    denny123 Member Posts: 1,531
    edited August 2018

    Nills-I have had bilateral lymphedema for 16 + years, but it is not noticeable. I have not had a problem since I have been on Xeloda.  I am on my 11th cycle at 2,000 a day.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited August 2018

    dang Denny! You go girl. I'm having a flair. The glove doesn't bother me but I use lymphadiva. It's the finger wrappings that are causing the chaffing even with special tape. Hopefully another day or two if I can stand it and then my regular glove and Sleeve.

    Thanks for replying.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2018

    What is the difference between oral and injections? I started last week on 1500 mg orally twice a day.


  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    Oh zill Get well soon!

    Now what is this? Is this also a SE? Lymph edema...


  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    Someone tried cannabis oil CDB oil famous for cure for cancer related SES????

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    Mariane- oral is by mouth and injection is a shot

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited August 2018

    DianaRose, it's hard for me to answer that. I am on my second tube, however, back in May, I was needing to go out of state to take care of some things for my mom. At that time I was on a 14/7 day schedule. But instead, I did 1 week on and 2 weeks off. I couldn't believe how much my hands and feet healed during that extra break. And it wasn't until after that, that I started the cream. They are still very dry, big toe nails lifting, but still way better than they were.

    For the lifting nails, I too use vicks and try to get it under the nail. I also take a syringe from my Xgeva and fill it with apple cider vingar and shoot that under the nail.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    Goldie- I will have to try the Apple cider vinegar on my toenails. They limit my to what shoes I can wear. The dog sat on my foot the other day and my big toe hurt so bad. It all started with the A/C and never got better.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited August 2018

    Get the organic Braggs with the mother. It doesn't make for pretty toenails, but neither does lifting nails! It will take a while, as long as it takes for the nail to grow out. Keep on eye on it, as mine has come back. Tea Tree oil is supposed to help too.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2018

    Dianarose, I understand oral and injection but am wondering why some get one and others the other. Is there any difference as to me injections would be simpler.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    Mariane- I’m not aware of Xeloda being in any other form but the pills

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2018

    Dianarose, my bad~~it is the X drugs that confused me. This is what you wrote and it was Xeloda you were referring to. Not sure why it works but when I take it with the Xgeva shot no issues. When I forget like I did this last time every bone hurts for days.

    Thanks for clarification and have a good day.

    Marian

  • denny123
    denny123 Member Posts: 1,531
    edited August 2018

    SanJF….do a ton of research before trying CBD oil.  I am in another BC group and the research indicates that CBD oil can kill the immune cells, thus allowing the cancer to grown rapidly.

    It depends on the kind of BC that you have.  I didn't pay attention to the specifics since I would never use it.

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2018

    Well tumor makers shot up 69 to 104 , I thought  Iwas feeling to good . So depressed right now, think I'll go back to bed

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2018

    Kimchee- so sorry. I know how you feel. Let’s hope it goes back down!! I will pray for you

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2018

    Thank you DIanarose .  I going to still try and stay positive .


  • goldie0827
    goldie0827 Member Posts: 6,835
    edited August 2018

    Kimchee, hang in there, those numbers aren't too terrible, and maybe they will go down again.

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2018

    Thank you goldie0827 


  • Karz72
    Karz72 Member Posts: 102
    edited August 2018

    Marianelizabeth - my oncologist explained it to me as "metronomic chemo" with the tablets (I'm on oral Xeloda & Navelbine) - frequent low dose treatment, as opposed to higher doses with recovery time between when using IV. Indications are that the continuous low-dose treatment prevents growth of chemo-resistant cancer cells that can happen during the rest periods of traditional chemo regimens.

    I guess it depends on where you are with treatment - if you need a sledge-hammer to whack the cancer or something to prevent growth of / slowly reduce cancer levels. There are quite a few articles on it if you google metronomic.

  • SanJF
    SanJF Member Posts: 47
    edited August 2018

    OK thank you so much.... Danny what to do with nausea and lack of appetite thing plz do help with that aswel...