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All about Xeloda

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Comments

  • Swannay
    Swannay Member Posts: 50
    edited December 2012

    Chele, welcome. I'm 7 months and counting. Side effects come and go.



    Jac53, congratulations on the good news.

  • Jac53
    Jac53 Member Posts: 58
    edited December 2012

    Thanks Swannay.

  • RobinNY
    RobinNY Member Posts: 136
    edited December 2012

    Hi chele.....welcome to Xeloda. I've been on it almost 2 months and my scans just showed a lot of regression and my TM's dropped from 1117 to 611. I hope it does the same for you.



    Great news Jac53!



    Hugs!

    robin

  • chele
    chele Member Posts: 132
    edited December 2012

    Thanks for the welcome!

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Hi, Chele -

    Welcome! I just started my 3rd round (1000 mg 2ce a day, 14 days on, 7 off). So far just constipation for me, and sometimes feeling like I have the feeling of a rock sitting up in my actual stomach. I feel like my finger tips are more dry than usual today, so I'm on the look out for hfs, but so far I cannot complain.



    One new side effect that I believe is from the Tamoxifen...I'm having very trippy, vivid dreams, and lucid dreaming. Also, can no longer sleep through the night, even on Trazodone. I wake up exhausted because of this combo. Also, it seems that I'm dreaming all the time when I'm sleeping. When I wake up, I am trying to hard to 'shake off' the dream, and almost feel as if it's a strange hallucination (but that's just the lucid dreaming part -but it's a strange sensation...).



    LL

  • gail5
    gail5 Member Posts: 125
    edited December 2012

    Liz - I like the sound of trippy dreams. Didn't have anything like that on my brief period on Tamoxifen.

    Have been having a bit of a panic as have developed a rash this week. It's now over most of chest area, upper thigh and inside of both elbows. Was initially worried skin mets were growing again but it's now so widespread I don't think it would have grown so quickly as even before starting Xeloda they didn't develop that fast and skin are much bigger than rash. I know the chemo can cause rashes but does seem a bit weird that it would start up almost 6 months in. Feel well otherwise so don't think it's an infection.

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Gail -

    You've probably thought of this already, but have you done ANYTHING else differently? New perfume? New laundry soap, new body soap/shampoo. Heck - new foods/spices??? Any other meds you're taking or have changed? 

    Have you tried taking benadryl to see if this helps? What day in your X cylce are you on? Have you called the onc yet?

    LL

  • Frapp
    Frapp Member Posts: 343
    edited December 2012

    Well gals, it looks like my time with xeloda is at an end. I'm at Dana Farber and just received the news that it has moved into my lungs. The suspected 4mm nodule on the left has grown to 15mm in 2 months time and there is also a "suspicous" 5mm nodule in the right ling. I'm waiting for my new scripts of affinitor and aromasin. All I want for Christmas are no side effects.

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    That's sucks. So sorry that you couldn't keep on hanging with the X crowd. Best of luck with the A/A combo and I also hope you are one of the lucky ones with minimal side effects.

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Frapp,

    I am so sorry to hear this. Wishing the very best with your new treatment plan.

    LL

  • RobinNY
    RobinNY Member Posts: 136
    edited December 2012

    Oh Pat, I am so sorry. It's so disappointing and scary to have to change. I pray the A/A mix will bring you a quick response to begin the New Year.



    hugs



    Robin

  • chatter99
    chatter99 Member Posts: 20
    edited December 2012

    Gail - that sounds like a bad rash. I hope you've spoken with doctor or nurse



    Frapp - sorry to hear X is no longer working for you. Best wishes for you on your new tx.



    My update: almost 1/2 way into second round. Irritated, teary eyes and nose drip. Hot, sore soles of feet. Red, tender hands. I'm using lots of lanolin and hand cream. Bit constipated (I have stuff for that). Very little energy but luckily I have all the comforts I need and don't have to work. I spend a lot of time in bed. Fairly low mood with potential for sudden anger. Maybe a slight lessening of pain in lat muscle - or is it just wishful thinking? A bit nauseous at times. Weight down about 25 lbs, luckily I had about that to spare. I miss my fuller figure



    Overall, Xeloda is tolerable so far but I'm concerned that side effects could get worse. I hope I don't have to switch it up anytime soon.

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    Chatter, if it helps I found the first several months the most involved with side effects. In the last couple months they've become almost negligible.........of course I worry my ass off it isn't working but so far........scans in February so I'll do my best Scarlet o'Hara, I won't think about it for now.

  • chatter99
    chatter99 Member Posts: 20
    edited December 2012

    Chickadee, that does give me hope. Thanks. I hope your next scans show its working for you.

  • RobinNY
    RobinNY Member Posts: 136
    edited December 2012

    Hi Chatter

    I had problems midway thru my second round...hot, hot feet!  Onc took me off 2 days early and it went away.  This cycle is much better but my feet peeled a little on the heels...not painful.  Overall, I think this cycle was an improvement.

    Hugs!

    Robin

  • chatter99
    chatter99 Member Posts: 20
    edited December 2012

    Thanks, robin. I thought it would just keep getting worse.

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Has anyone had stomach pain from Xeloda? Like up high, in the area of my actual stomach, vs. generalized abdominal. Xeloda gives me lots of gas and bloating/constipation. And today the pain up high in my stomach...which I honestly don't think would be gas. I've read about stomach pain & X doing a search here, but not a lot about how to combat it. Although one person recommended Tylenol 3's/codeine.

    I'm on what I think is a low dose, only 1000mg 2ce a day, 2 weeks on, 1 off. This is my 3rd cycle, 4th day in. It kind of feels like someone has their fist jammed into my stomach, just holding the pressure there. I'm about ready to take a Vicodin just to see if it helps.

  • Frapp
    Frapp Member Posts: 343
    edited December 2012

    Liz, I had that issue and found that if I used gasX it helped immensly.  I didn't think at the time that it was gas but since using the gasX helped, I guess it was.  Xeloda goes after fast multiplying cells since that is what cancer is, but so are other cells in our body. That's why the side effects with stomach lining and intestinal lining.  I would say it's doing it's job for you. Yea, xeloda, kick those cancer cells!! 

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Thanks, Frapp - I am going to try some of that stuff. I sure hope it's working...!!! 

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    Sounds like heartburn. I've been on prescription Aciphex for heartburn, gas. For now I take it for flare ups. It was much worse on Afinitor and initially on X. Now it's occasional and dairy often triggers it.

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Hmmm...interesting, Chickadee...thanks for that info! 

    Oh I am so grateful for the wisdom of these boards!!!!!! I always know when I put out the bat signal someone will come to the rescue!

  • gail5
    gail5 Member Posts: 125
    edited December 2012

    Frapp - I'm sorry X is no longer working for you.I've heard good things about Affinitor, it has just been approved in England but not Scotland yet. Hope it does wonders for you.

    Chatter - I had dose reduced a few weeks ago and have found SEs much more bearable. I had appetite problems when I first started but am eating like a horse now so you might find the 25 lbs go back on sooner than you expect.

    Chickadee - I also tend to associate bad SEs with good results, so worry about not feeling so bad. Can't win with that one.

    Liz - I checked with chemo unit and they spoke to onc. The general opinion was it was likely an allergy and should probably take anti-histamines. It started after I used a spray on plaster for a small area of broken skin under the affected breast so I thought maybe it had reacted with that. Saw GP this morning and he gave me some Canesten cream as thought it was possibly a fungal infection and didn't think it was worth taking the anti-histamines. Anyway it doesn't seem any worse today so will give the cream a go. He also gave me a presciption for Diprobase for my hands and feet so will see how I get on with that too. Prescriptions are free in Scotland so will save me some money if it's any good. I'm on day 14 of 8th cycle. Hope you're feeling better - I find Lansoprazole has mostly sorted out my tummy gripes.

  • chatter99
    chatter99 Member Posts: 20
    edited December 2012

    Gail5, thanks for responding to my post.



    Lizlemon, I've had acid reflux since just before diagnosis. Xeloda hasn't made it worse for me. I used Nexium for a couple of months. I cut coffee, alcohol, most fried foods, soda, and highly acidic foods. I don't want to take Nexium continually but I have a prescription at the ready, just in case. It was so painful! Other tips are 1) try not to lie down until an hour after eating. 2) elevate your bed at the head end.

  • LizLemon
    LizLemon Member Posts: 191
    edited December 2012

    Hi all - well, the stomach issue seemed to go away. It kind of hit me like that last cycle too, where the first few days I had outright stomach pain. This time was much more intense. I'm just glad it's gone. Whew...



    Thanks Chatter for the tips!



    Hope everyone is having a good day today. :)

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    This is the weirdest med I've been on because the side effect appear and disappear with no rhyme or reason. So be prepared for unpredictability. Just when you think you can't stand one it fades and something else rolls in.



    I'm surprised everyday now that I have no significant SE's so hang on and hopefully you'll get there too and with good scans.



  • Frapp
    Frapp Member Posts: 343
    edited December 2012

    I'll ditto that. This was the easiest med for me so far. So sorry I had to move on.

  • braids3
    braids3 Member Posts: 131
    edited December 2012

    Frapp so bummed it quit working 4 u good  luck  with  new  combo. i had  a week  break  from  tykerb for  the cyber treatment  back on now happy  holidays to all

  • gail5
    gail5 Member Posts: 125
    edited December 2012

    Just stopping by to wish everyone a great Xmas.

  • RobinNY
    RobinNY Member Posts: 136
    edited December 2012

    Merry Christmas to all my Xeloda sisters!

    Hugs!
    Robin

  • chatter99
    chatter99 Member Posts: 20
    edited December 2012

    Chickadee, you're right about the unpredictable side effects. I'd heard about the potential for hands and feet problem. To avoid, I used lanolin and Aveeno. A week into second round, my hands and feet became red and painful. Now, I can barely walk and have minimum hand function. Constipation has turned to diarrhea. Ah well, only one day before my one week break



    I hope everyone had at least a little bit of fun at Xmas.

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