All about Xeloda

girlwithacurl

Thanks Amy! We get mallards in the pool too.And a black phoebe that visits almost every day. Hope it's a pool day for you today!

50sgirl

Deanna, I am just checking in to see how you are doing. Are you feeling any better? It is scary to see how quickly we can start to feel so poorly. I am glad that you had someone to help you to your appointment. Dehydration is a dangerous condition that can come on quickly. Rest up. I hope you recover soon.

Hugs from, Lynne

Mimi2kleh

I mentioned before, that I had to stop the Xeloda for a few days because of SE's. I had originally started on 8 pills a day. Onc told me to start back with three, then titrate back up with 4, 5, 6, etc, as high as I could go. But he didn't tell me how quickly to go up. Should I add a pill each day, or spread it out more

Lita57

I would go at least 2 or 3 days to see how your body tolerates it, then add another pill for 2 or 3 days.

Have you had your week off yet?

I sometimes get the mouth sores on my week off 😣

girlwithacurl

Lita, do you ever swish with glutamine powder? I find it really helps with mouth sores, even on Afinitor which is a real mouth sore culprit.

Lita57

Girlwithacurl, mine usually show up OUTSIDE my mouth, on the margin between lip and skin. They aren't cold sores because they look exactly like the stuff on my hands and feet. I might look into the glutamine, tho.

Yes, I've heard other ladies on Xeloda say they've had these HFS flare ups on their faces, too. I've even had a few on my cheeks, close to my nose, as well. I use Eucerin, and they usually go away in a few days. I hate the itching, burning, and stinging sensation. I simply chalk it up to "SYGDW" my acronym for "Stuff Ya Gotta Deal With" when it comes to cancer treatments.

The fatigue is really getting to me. I just want to sleep in my chair, but when I wake up, I'm still tired. I call it my "zombie state." Chemo is cumulative, and sadly, Stage 4 people will ALWAYS have to be on some form of treatment, whether infusions, pills or aromataze inhibitors, each of which has their own delightful set of se's.

I'm trying to take more walks when my back allows it. Too bad it's so cold and breezy here today. Sometimes I force myself to walk up and down the hallway a few times...it's better than doing nothing.

Kaption

Lita,

I'm glad you mentioned fatigue. I've complained on here in the past couple of months of my extreme fatigue. I have had rads twice (once to the brain) and switched to Xeloda since the start of the year. I was doing a bit better on a small dose of prednisone. I took the last one last Thursday and Saturday hit the wall again. See my MO tomorrow. Hate to think this "being a lump on the sofa" is my life now. Ugh!

Lita57

I HEAR you, Kaption! There are so many things I want to do but I'm too exhausted.

I feel a little better during maybe the 6th and 7th day of my "off" week, and I'll try and go out with friends and do something, but the next day, I'm wiped out again. Vicious cycle 😣.

I also worry about gaining weight because I'm not as active as before. Fortunately, it's only been less than 5 pounds, and I've cut out a lot of carbs, but how long is that going to last?

Has anyone tried acupuncture for energy? I'm thinking of trying it because I have some arthritic issues, too.

ShetlandPony

Hello, Everyone. May I join you? (I see several people I already know here.) I'm literally hours out from learning I will be on Xeloda within a week. Oy. This is my first chemo since the initial Taxol when the mets were first diagnosed. I'm a little stunned, even though I knew that today might be the day I got this news. I'll go back and read several pages on this thread.

Lita57

Shetland, I just wrote you a response on Liver Mets thread.

Welcome 😀! We're here to coach you thru this and support you all the way.

girlwithacurl

Ugh, Lita, that sounds unpleasant. I think my low dose must be saving me but Ihave the fatigue too. I do find that acupuncture helps a lot. And exercise which is so hard. Too tired to walk but feel better after I do it.

leftfootforward

welcome Shetland. We are here for you.

ABeautifulSunset

First cycle of Xeloda under my belt. Still, tumor markers jumped quite a bit (for me) anyway. Hoping it's just too early to be showing anything, or maybe a flare. Prior to that I was off treatment for about a month. It's just the darned waiting another month....not knowing if it's within for not. Guess I just have to try to put it out of my mind and keep going. I know you all understand that is easier said than done. Sigh. 😧

leftfootforward

I posted in the liver mets thread but Xeloda is still working it's magic fir me. cat and brain scans were NED and my tumor markers finally fell back to my normal and just above the lab value normal. I have been off targeted tgeraoy for over a year and Xeloda is keeping everything at bay. It truely has been and continues to be my wonder drug. 4.5 years and going strong. Some days SE can get to me, but overall once I got the dose dialed in this has been a life savor for me literally.

ABeautifulSunset

That's great Leftfoot! Great for you, and hopeful for me. I needed that.

ShetlandPony

Stefajoy, first cycle done, very good. A month off treatment probably raised your TMs, right? Leftfoot, wow, 4.5 years. And now NED with good TMs, excellent. I'm afraid to ask, but what side effects do you have?

I need to find out from my onc whether we are planning to start low and go up until side effects stop us, or start high and lower if necessary. Any thoughts on this, X-Women?

ABeautifulSunset

I started on 2500 (low, but not the lowest). After one cycle with no real SEs, the doc said next cycle (third) I should go to 3000. Seems fast to jump up, but we'll see.

The only SE I think I am having is that I'm very sleepy all the time. Not the typical fatigue I am used to that comes in the form of low energy, but literally I just want to sleep. Except in the middle of the night, of course. That would be asking for too much. Anyway, I don't like being tired. I can't get anything done. I hope it's just my body getting used the new drugs.

Hands and feet good so far. No mouth soreseither.

Stefanie

Nel138281

Stefajoy - first cycle under my belt as well  3500.  Feeling OK and as Leftfootforward said, the fatigue is much better than it was on tykerb.  Palms are beginning to get itchy - but all more than doable.  My feet burn but I have had neuropathy from earlier treatments for some time.  See my Onc next week

Leftfootforward - 4.5 years - that is excellent   That we all may have the same good fortune

Stilts

Left foot: so great to hear Xeloda has been so effective for you !!! I am at a little over a year on X...started on 4000mg daily, now at 3000 due to the HFS...TMs have dropped from 600 to 39 !!! I still have HFS but treatment with steroid cream and a moisturizer from the dermatologist have made it manageable. Definitely feel the fatigue so I certainly don't feel guilty taking naps once in awhile. Crossing my fingers that this treatment will hold me for a LONG time.

Mimi2kleh

It's great hearing about so many women with years under their belts against this fight! 👍🏼

I too just finished my first dose, started at 4000mg, had to stop for 3 days, then started back with 1500, and titrated back up to 3000 for the last two days. We'll see next week at my appt, what dose the Dr. has me do for the second round. I'm waiting to see what the week off brings, praying it is easy, as I've just had some bad news about my mom. She has Pneumonia and congestive heart failure, her doc put her on hospice and said she has probably a week. 😢 I never told her about my latest dx.

Lita57

Oh MIMI! So sorry to hear about your mom...you don't need this stress right now as you're adjusting to a new TX regimen. CBS did a story on how Xeloda is a real game changer, adding years to MBC women's lives. I'll try to find it and post later. Have to run and take Sofia to the Groomers.

Sofia....sticking out her tongue at Mr. Cancer

auroaya200882

Mimi (I'm a lurker usually but I couldn't pass on saying something ) I m sorry about your mom, it's hard to loose a parent no matter our age. I hope and pray she can be comfortable in hospice, I hear they're also good in helping family come to terms with her situation. Praying for you to have te strength to deal with this and if it does come to her passing i pray God grants you serenity/

Aurora

Nel138281

MImi - There is no good time to loose a parent, but you have enough right now   Thoughts and prayers for a peaceful week for your Mom and your family

Anonymous

Ok, finally joining here even though I've been on Xeloda for over two months. It's been pretty uneventful...till now.

My feet are exploding with blisters. I know this has probably been covered 8384753574 times already but HFS advice? Spefically good brands of lotions and shoes?

I'm at 4000mg 7 on/7 off. I'm also on Tykerb, Herceptin and Zoladex.I DO NOT want to drop the dosage, especially since I need it to get to the brain. I may have to if Xeloda is indeed causing hyperbilirubin, but I don't want to for feet.

I mean, if I get leftfoot's 4.5 years NED, it will be worth every painful step....

ShetlandPony

I did a little research on standard Xeloda starting dose for MBC, and found a standard dose of 2500 mg per day, which was the dose used in a breast cancer Xeloda study. Below that info is a chart with dosing according to body surface area, which is calculated from height and weight. A smallish person would get 3000 per day, which corresponds to the dose your onc is proposing, Stefajoy. The jumps would be in 500 mg increments because each pill is 500 mg.

Now I am thinking about scheduling the cycles. Experienced X-Women, what are the worst side effect days of the cycle? Would I expect to feel best on the last day of the week off?

Mimi, sending wishes of comfort for you, your mom, and your family.

leftfootforward

bad- I had to drop my dosage of Xeloda because I was on it with Tykerb. I went from 4000 to 3000 and it made s world of difference. I was on a 14 on 7 off cycle. I don't know if this helps but thought I'd offer it up to help you feel better about a dose decrease.

After being taken off Tykerb we upped the dose to

3500. Been there ever since. I had brain mets as well. I apologize as I can't remember if you had a different type of brain disease.

Please take care of yourself. You have an army of treatments working for you. Don't be afraid to dis USA a small dose reduction if you have to

Lita57

As promised here is the CBS link regarding Xeloda.

Hope this works.

http://www.cbsnews.com/news/breast-cancer-drug-xeloda-can-extend-lives-landmark-study

ShetlandPony

Ah, yes, this is about using Xeloda for stage III patients who have residual tumor after standard early-stage chemo. There are some on BCO who did that. Sounds like a very good option for those who qualify.

Anonymous

leftfoot, what dosage were you on when you got to NED?

I'm nervous due to progression on another drug a year ago when we knocked dosage down..

leftfootforward

bad- is say 3500mg 3 in the morning and 4 at night 14 on 7 off.

I have been on Xeloda only since March of 2016- no targeted therapy for Her 2 as my heart. Function decreased to 40% while on herceptin. I've been stable while only on Xeloda so we haven't added another targeted therapy back in.

So 3500 seems to be my magic number.

I