Update on Barb’s xeloda dose - SHARE Metastatic ...

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Update on Barb’s xeloda dose

Barbteeth profile image
31 Replies

Hi Ladies

Saw my oncologist today...she’s reducing my dose from 1650 mg twice a day to 1000 mg twice a day and one week on one week off

She wouldn’t reduce further though

Some of you ladies on here have managed better on a lower dose if I recall...what dose do you take?

Barb xx

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Barbteeth profile image
Barbteeth
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31 Replies
BangorBelle profile image
BangorBelle

Keep several chemo diaries. Will check through them and let you know. Excited for you x

Tri78 profile image
Tri78

I was on 1000mg x 2 and it really helped the side effects.

Barbteeth profile image
Barbteeth in reply to Tri78

That’s reassuring...hope works for meBarb xx

Teddielottie profile image
Teddielottie

Barb , I hope that this reduced dose helps with the hand/foot issues , that seem to be very common on Xeloda , and that you are able to have a more comfortable Xmas with your daughters. Wishing you well ! x

Hi Barb,

I'm glad your oncologist has reduced the dose to a more manageable level for you. You need to be able to manage the side effects and still be able to function. Let us know how you get on with the lower dose.

Take care Barb,

Sophie x

Lovemylakie profile image
Lovemylakie

I am glad your dosage has changed and praying for good results. Just had CT scan today and my tumors have grown. I will be starting Xeloda soon. I don't know what the dosage will be. I go for PET scan on Monday will get results Tuesday. I was on Taxol for 4 months. I mentioned to oncologist about you dealing with the hand foot syndrome. She said they monitor that closely and will make necessary adjustments.I will be interested in how you are doing on new dosage.

Always keeping you and everyone in my thoughts.

Wishing you all a Merry Christmas

Love

Robin

Barbteeth profile image
Barbteeth in reply to Lovemylakie

Hi Robin I’ll keep you posted

Good luck with Xeloda....I was lucky I didn’t get stomach issues...could’ve been even worse

Barb xx

Lovemylakie profile image
Lovemylakie in reply to Barbteeth

Just talked to pharmacy. I will be taking 6/ 500mg tabs twice a day.Love

Robin

Red71 profile image
Red71 in reply to Lovemylakie

Robin, That’s quite a large dose. I was started on 4 tabs twice a day and that proved more than I could handle...mostly vomiting issues. Taking it down to 3 tabs twice a day took car of most of my issues, still have a few minor hand and foot problems but not enough to change dosage. I would recommend you get some medication for nausea and for diarrhea for when you first start and also let your oncologist know if the side effects are really bothering you...as soon as possible and not on Friday afternoon! Such a bad day to get good service from anyone! Good luck, Elaine

Lovemylakie profile image
Lovemylakie in reply to Red71

Thank you for the info. I so have some nausea meds. I am really nervous starting this med. It's coming today. I have had a some depression due to 3 weeks of quarantine and now this new diagnosis. It's always something.Love

Robin

blms profile image
blms in reply to Lovemylakie

HI Robin, When you took taxol, was it the newer weekly IV? If so, give me some info.

Lovemylakie profile image
Lovemylakie in reply to blms

Hi! I started out weekly at 80mg IV then went to 2 weeks on with 1 week off at 60mg. She cut it back so I wouldn't have the peripheral neuropathy. I tested positive for covid so missed 2 treatments. I was on it for 4 months.Robin

blms profile image
blms in reply to Lovemylakie

So did you lose your hair on weekly?When I took it 23 years ago, it was 185 mgs per treatment and was brutal. My doc wants to put me back on it at new lower dose. Nit sure what to think.

Lovemylakie profile image
Lovemylakie in reply to blms

Yes I lost my hair. I didn't shave it down completely with a razor so I always have about an 1/ 8 to 1/4".

Barbteeth profile image
Barbteeth

Thanks Sandra...I’d like to read up on those articles even if I don’t fully understand...I’m not as knowledgeable as you but will get the gist I’m sureBarb xx

MyMiracle13 profile image
MyMiracle13

Hi Barb. Your dose sounds very reasonable. I’m on 1500 mg a day but no week off. I take it continuously. I’m having bloods taken tomorrow to check how it’s affecting WBC and liver enzymes. If my WBC is low, my onc might decide to put me on 2 weeks on and one week off.

BangorBelle profile image
BangorBelle

Hi Barb,Looked my journal up and I was reduced to 2150 twice a day, one week on one week off. Even with that the tummy pains were too much so went back to Taxol. X

Barbteeth profile image
Barbteeth in reply to BangorBelle

That’s a high dose thoughBarb

Xx

mariootsi profile image
mariootsi

Glad your dose was reduced.I wish you well on your new dose!

StE72 profile image
StE72

At least it is a start. Hope it helps reduce the side effects. Stay safe and positive!!Enjoy your Christmas and wishing you a better 2021

Topood profile image
Topood

I take 1500 twice a day, but (believe it or not!) just asked to have it increased to 2000 at night and 1500 in the day, because though I’m getting good results she said it isn’t a “complete response” ..I suspect if the side effects get too bad she’ll let me decrease it again. I am 5’5” and 110 pounds....she calculated the dosage from those statistics. I see her tomorrow in person (I didn’t go in yesterday because of the snow), so if I learn anything more then I’ll let you know!

hopefulinadks profile image
hopefulinadks

Barb, My oncologist wants me to start at 800 mg because I have had recent surgery. I imagine that is twice a day from what I am reading. I have not started yet. My cancer is ER+HER2 - For some reason I thought this drug was for HER2 positive. Are you HER2+? Any thoughts out there on this? I am a little confused by the literature. Good luck!

hopefulinadks profile image
hopefulinadks

Thank you!

Photo-Bug profile image
Photo-Bug

I am on the same dosage: 1000mg twice a day. I am having some hand/foot syndrome problems. The doc said she might lower the dose if it gets worse. In the meantime she wants to leave me at this dose since it is working and I am very happy that it is working.

Wintervt profile image
Wintervt

Hi Barb,How are you feeling on the lower dose?

xo Jade

Barbteeth profile image
Barbteeth in reply to Wintervt

Hi JadeNot that different....nausea worse but hand and foot syndrome slightly better...but disappointing

Barb xx

Wintervt profile image
Wintervt in reply to Barbteeth

Barb, I am so sorry to hear this! When do you have your next scan? Xeloda will be my next medication, so I'm a bit nervous.

How is Bugsy and your daughters? Has your vision or pain improved? I was reading an article about met pain and wondered if you heard about this? radiology.ucsf.edu/patient-...

xo Jade

Barbteeth profile image
Barbteeth in reply to Wintervt

Hi JadeBugsy is fine but my old horse Monty has been poorly and still on antibiotics and bute

My eye is the same and I think I’ll just have to live with it

Miranda who lives in London came up on Christmas Eve...her and hubby had Covid tests which were negative so they hired a car and drove up so I had my family with me on Christmas Day...my other daughter Vanessa lives only a few miles away

I hate this Xeloda drug even after the dose was lowered...my fingers have been red and painful and I couldn’t even open my Christmas presents and had to get help!!!I think I’ll see if I can lower dose further...I’ve read lots of evidence that a very low dose of Xeloda works ...feel crap at the moment and I’m on the week off

Do you know how many blood transfusions you can have per year?.... I feel good after one but the benefits don’t last long

Barb xx

Scandia68 profile image
Scandia68

Did they give you Celebrex? I’m convinced that’s sorting any side effects. I ran out for two weeks and got all sorts of side effects

queeneee profile image
queeneee

Hello, I know this post was a while ago, I am on xeloda and also a geek.. so super interested in your articles/links.. could you email them to me or post here? thanks (will send email privately if ok)

queeneee profile image
queeneee

I was on 1500 twice a day. (first round).. then reduced to 1150 twice a day (second round) due to stomach pain. no hand or foot issues yet. Stomach pain pretty much totally gone. I am 5'3 and 8.5 stone. Two weeks on, one week off per round. I feel like it is working. No scan yet.

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