All about Xeloda

jeanieb2

Diza - I take Xeloda alone, 3000 mg per day.  I was taking 3500 mg but the hand and foot thing acted up a bit and my onco decided to drop it by 500 mg and my tumor markers are still going down so I think it is working.  I still get my monthly Zometa treatment, but I have been taking that for almost 3 years and will continue to take it.  I hope she can get along with the hand and foot, I know mine acts up about the 4th or 5th day of the week I am on and for about 3 or 4 days after they are still tender and a little sore but the worst seems to be the 4th through the 6th day on.  I have been keeping a journal about the days on and the days off so I can see if there is some kind of pattern and for the most part I have been able to see a pattern but then just when you think you should be having a good day, a bad one pops up.  I just know that the 4th through the 6th day I stay off my feet as much as possible.  Hope this helps her and she gets stronger every day.

iluv3j - As I told Diza I did take 3500 mg and the onco dropped me to 3000 mg per day because of the hand and foot syndrome, I did not think it would make that much difference but it has helped some.  They are still sore as I stated but not quite as bad.  I was afraid that dropping it would not work as well but the onco said he was sure it would be OK, and I trust what he says.  You might ask if they could drop it by 250 mg or 500 mg instead of a whole 1000 mg difference and maybe that would help some also, just a thought.  Hope she continues to improve

lilylady

 I hate to say but the end of my first  cycle I felt as bad as I did with my last real chemo tx. The Big D was so bad it was just leaking out -gross but that's what was happening. I had taken so much anti-D I was afraid to take any more. Extreme fatigue and some nausea. My feet have become like hard turtle shells on the balls of them and 1 has a crack all the way across it so I have been walking on my heels for days now. Un fortunately my job is  a lot of walking. Some days as much as 2 miles-on concrete with steel toed work boots. I had to laugh when the onc asked if I could eleveate my feet and wear houseslipper-like shoes. I got this mental image of me wearing a tool belt and bunny slippers! 

 Today is my first off day and it feels better already. I am dreading going back on it already. It went great for the first 10 days and seems like overnight it went straight to horrible.

  Lovely Tykerb face also-covered in spots and itchy dry patches.

 I hope everyone else is doing well and I am hoping it gets better for me. I won;t ask for a dose reduction til we do a scan at least-that will be in April after I do 3 cycles.

jeanieb2

lilylady - With so many problems with your feet could you ask to go to 7 days on and 7 days off?  My onco said they have better luck with the 7 - 7 than the 14.  He said the side effects seem to be worse on the 14 and they have to take people off to clear them up and with the 7 it seems to be better and they do not have to take people off of it so the coverage is pretty much the same, if that makes any sense to you.  I have very sore feet on about the 4th or 5th day of my 7 day cycle through about the 2nd or 3rd day of my off days.  It would be just a thought to ask your onco about it and see what he thinks, and maybe they would not have to reduce your dose.  Hope you get to feeling better. 

iluv3j

Hi lilylady

I agree with jeannieb2. Ask for a different schedule, it really might make a difference. You shouldn't have to suffer especially if you have to walk a lot for work. Bring it up and see what your onc says. Good luck.

reesie

Bump

sueper13

Well, I'm home from Montreal, the baby turned three months old while I was up there, he is SMILING and laughing and I just absolutely fell in love all over again!!! Wonderful!

Walked in the house and am already trying not to obsess about the scan results....Tuesday, most likely.  I try not to read into ANYTHING a tech says, but the CT lady asked, "When do you see Dr. Kr----- again?"  REALLY trying not to read anything into that, honestly without a lot of success. On the good side, what I could see of the bone scan looked just like the last one. And I have discovered that I can go to the Cancer Center and Nuclear Medicine and get copies of the actual scans and reports on Monday...instead of waiting for that busy oncogist to call me on Tuesday afternoon. I don't know.  Any extra prayers for no new news would be appreciated!

Sue

Lynn1

Hi Sue, so glad you had good time with the baby!  Please try not to read too much into that question....they ask me that every single time.  They are just making sure they get the results to him in time for your appointment or call with him.  Praying for great news!! 

sueper13

No evidence of metastatic disease in the chest.  No evidence of metastatic disease in the abdomen.  No evidence of metastatic disease in the bones.   Sweet, sweet words.  This is NED, right?  And I'm supposed to dance with him?  Thanks for prayers!!! (And thanks, Lynn, that makes sense)

lilylady

Heck yeah you dance with him at the big "I ain't got cancer" prom. So thrilled for you. I hope it lasts for ever!!

  I try never to quit til browsing til I find good news-you made it easy today!!

Angelfalls

Fabulous news, Sue! I'm so happy for you :0) You'd better treat yourself to some new dancing shoes!!! You get to dance with NED, but we'll do the Happy Dance around the two of you!! Go celebrate, Angelfalls xx

K-Lo

Sue are you kidding?    Pinch me!   This is so nice to hear.   Oh good news, thank you and congratulations to you and family!

singletona80

SUE- Congrats on the NED !!! YES thats what im talking about!!!!

This is my week off X.. yeah imma enjoy these 7 days!

lovinmomma

This is an incredible post you all! I have been reading all night and today. I start Vit X either today or tomorrow depending on when the pharmacy gets my pills. Not sure of dose yet, but I think my onc wanted to start with a 14/7 schedule. I have so much info from you ladies that I want to thank you.

Lynn1

Sue:  Congrats on NED!!  Awesome!!

Hi Kim!  Welcome!! 

jeanieb2

Sue - I am so glad you are dancing with NED, it is always wonderful to hear news like that.

Kim - Sorry you have to join us but welcome to the site.

iluv3j

Congratulations! So happy for you all and hopeful for everyone else! Yes!!

hunkydory

Sue, congrats!  That is wonderful.  Have a great time with NED and please NED, if ya feel like you need a another place to crash,  I have vacancy here.  I start my days off after tomorrow but find it takes most of my days off just to start feeling better.  Hugs to all!  Hunkydory

M-Aug

Thanks ladies it looks like I will be starting on this drug in march so it helps to have a heads up about SE before I start. Best wishes to you all.

sueper13

Hunky are you doing 14/7 or 7/7?

hunkydory

Sue, I started out on 14/7 then my onc changed it to 7/7.  I am guessing you don't have to do any more chemo other than an AI?  What a good feeling.  I'll bet you had a great time with your DS, DIL and new grandbaby. Im sure you have more visits planned for the near future.  Better send this before our power gets knocked out by wind.  It is really howlin' here.  Take care Xeloda gals.  Hunkydory

sueper13

HunkyD,

I find out Friday how many more weeks of Xeloda she has planned for me...not sure what I want her to say.  Would love to be done but originally it was to be six rounds of 14/7.  I've done 2 rounds of 14/7 and 2 rounds of 7/7.  I wanted them to be as aggressive as they thought I could stand...but I am surely ready to stop if that is what she says....

Hope the wind died down.  It did here, finally.

sueper13

Okay, she said three more rounds, which equates to twelve weeks of 7 on/7 off.  BUT--we are going on vacation next week.  I asked if I could take this week off Xeloda too for a three week break to celebrate halfway done and so I have the best chance of feeling good on vacation.  She said yes!!!  Just what I needed!!!!

lovinmomma

That is great sueper. Half way done with this!!!! have a great vacation

Treso

Sue - CONGRATULATIONS!

(I hope NED saves a spot on his dance card for all of us.)

singletona80

Tomorrow is chemo day.... Taxotere and Xeloda starts up tomorrow. Cycle 6 here I come. Please be gently on me these next two weeks

hunkydory

Sue, have fun on your vacation! That's great your onc is giving you a small pass. Hope you feel great!



Singletona, that sounds kind of like a rough chemo. Keep us posted on how you get along. I am on my week off and the mouth sores are still there, along with a bit of heart burn. I am taking 40mg of Prilosec every day. Have been on it for along time but the Prilosec usually keeps it under control. Anyone else have the acid reflux with this? It seems more uncomfortable when I drink something cold. I start again the first. Will ask her about it then if it is still present. Take care ladies! Hunky dory

K-Lo

Single, rest when you can, take any meds for symptoms to get through.   If its too much, will they turn it down a notch?

Good luck

Angelfalls

Hello everyone,



Mind if I pull up a comfy seat? I'm in the Waiting Room here 'til Tues when I should get the results of today's CT scan and find out whether the X is working or not...



I've got extra supplies of chocs, biscuits, cupcakes and some ginger beer - completely off wine at the moment, but that's a good thing - all the more for the rest of you! ;0)



Hope you're all doing OK.



Angelfalls xx

Lynn1

Good morning Angelfalls!!  A biscuit sure sounds good right about now - so kind of you to bring some!  ;-)

Sending good vibes and hoping for great news from your CT scan!!

lovinmomma

Hey there Angelfalls. Hope it is good news from the scans.