All about Xeloda
Comments
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Denny123: ask your doc about modafinil for your fatigue. It might ease it up a bit. If nothing else, it makes your brain a little clear while your body is stumbling around.
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Thanks Elderberry. It doesn't look like that is for my chemo-induced fatigue, and since I have trouble getting to sleep, that might just make it worse.
Appreciate the suggestion, though!
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Hi Ladies.... Well I had my visit with my MO yesterday. Since my blood work was almost perfect aside from AST being a little high and the fact that I am having no side effects..she decided to increase dose to 2500 per day from 2000mg .... Still 1 week on 1 week off. So I guess we will see how that goes.
I am going to share with you all that I think there is a chance that the med may not be working for me as I have this itchy skin condition that went away when my Ibrance was working and came back when it wasn't (plus I had it for a year and half prior to stage 4 diagnosis) It usually starts on my elbows and last night it started again....not bad but ..yea. I am trying to stay optimistic though. Will probably cross post in Liver Mets...
Love to you all and I welcome any prayers.
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Sweet Nicole, I send you my prayers and prayers that X IS WORKING for you. But how strange about the itching. I did get a rash on a higher dose 6 and 7 pills a day, top of my thighs, arms, tummy, chest, a lot of my body! So maybe that is what it is???? Glad your labs were good. Do you know when you get scans again? How are issues with your tummy (bowels)?
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Thank you for your prayers Goldie
So my itchy "bites" as I call them...lol they are the same for 2 years now..even before any meds or Stage 4 diagnosis. Anyway...my bowels are ok as long as I take miralax everyday. X didn't cause diareah for me...lol my MO was laughing yesterday...I said "SEE I TOLD YOU...i would be your only patient that doesn't get diarrhea from Xeloda"...lol She was like "yup you are right"....
My scan will be mid February PET and then MRI of the pelvis and hip because MRI is the ONLY thing that seems to show my bone mets... the PET only picks up the one in Sacrum but not in hip.
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I wonder why different MO's do different scans. I get nuclear bone for bone mets and then CT with and w/o contrast. Never an MRI or PET!
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Goldie, it is a mystery, perhaps having to do with where they were trained and how long they've practiced. Then there's the insurance issue for some. I've had three oncs at MD Anderson. The first used CT scans, then PETs, both with contrast. I had one brain MRI. The second - my clinical trial doc - used only CT scans with contrast. This new onc, my third, uses CTs with contrast and I did have my first nuclear bone scan with him. I asked him about MRIs, since I've heard so many people here say they are the best. He has 40 years experience and said *in some circumstances*, they would be indicated, then showed me all of the details on my CT scan, so I wouldn't think it was a second-rate procedure, I guess!
Nicole, I'm so glad to hear about your good check-up! I know our skin can be the canary in the coal mine, but try not to focus on what it might be a sign of too much. I hope it doesn't spread much and cause too much discomfort and worry. I haven't had any rashes, but a few sores on one leg did appear after a week or two on my first cycle. I thought they could be bug bites, but they never went away, and never got worse. I haven't had diarrhea, either. Constipation is something I have to stay ahead of and I watch my BMs like a hawk!
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Goldie...we have to MRI my bone mets do not ever show on CT BONE Scan...EVER. And as I said above..Only 1 of them shows on PET...so we have to do MRI because for some reason they show on that.
Katy...its definitely not a rash from meds...like I said earlier its always on my elbows and has been off and on for a year and half before I ever took cancer meds...
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Hi ladies,
I am starting X from today. I am taking 3000 mg per day, so 1500 in the morning and eve. I am little nervous about the side effects, hopefully this goes well with me. My ONC wants me to do 14 days and one week off. I have appointment with my ONC in 7th day so if everything goes well with this first week i am planing to request for 7/7, finger crossed. I am already slathering myself with Aquaphor and will start to take stool softner as well as I am the queen of constipation :-).
Take care ladies.
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My Onc does Ct with contrast and Nuc bone only too. Last summer the bone scan showed that my T10 was getting dangerously infected with cancer cells. (it could crack) So I was sent to an RO. The RO looked at the bone scan and then left the room for a few minutes. He said that he had THREE Ro's in the other room who all looked at the scan (and previous ones) and said what my Onc was seeing was HEALING bone. But, he said, let's do an MRI to make sure. Guess what? The MRI showed my T10 to be in bad shape. I had radiation. My next bone scan after that made no mention of my T10. Then the Bone scan that I had a few weeks ago brought it back into the conversation. Is there cancer there now or not? I have no idea. Crazy
I also found out there are regular MRI's and diagnostic MRI's. IMO these scans are only as good as the people that read them.
Last time I was at an ONC appointment I mentioned that I wished my ins. would pay for Pet scans. He replied oh CT and bone scans are just as good so, no need to worry about that.
Just my experience with scans.
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Hi Naesha,
I am on the same dose and schedule and am finding it very tolerable. I do have extreme fatigue and some minor hand-food syndrome. I'm staying ahead of constipation. No nausea, but some minor stomach issues and lessened appetite. I just started my 4th 3 week cycle after a VERY good scan a couple of weeks ago! I hope the New Year brings you the same great results!
Katty
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Good luck, Naesha! We have your back!
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Took me less than a week until I couldn't walk. Had to wear gloves and socks with Bag Balm on for 6 week. Flunked xeloda. That was my 2nd drug for MBC. Not a good outlook, medically or in my head.
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Thank you every one for your best wishes. I wish all of you a great great Happy new year :-)
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Nopink2019...so what do they have you on now for your 3rd line and why did you fail after only 6 week progression or side effects? Also you didn't mention your dose and schedule? When in 2019 were you diagnosed and what was your 1st treatment and for how long? Xeloda is my 2nd line as well...I do not have high hopes for it at all...so if it does wind up working I will be happily surprised. At my MO appt. last week she upped me to 2500 a day...7 on 7 off...so we will see...I did ask her what will be next if this fails... she said if there is a lot of rapid progression Taxol chemo to get a stop on things then we can look at some trials...if the progression is minor or slow we will look at a trial.
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Naesha...hold off on the softeners until you see how it affects you. I had purchased a big bottle of Imodium, but like you, being the queen of constipation (thanks to 4 years on Kadcyla), I never did need it.
But I have settled into a nightly routine of a dose of Miralax and 300 mg of stool softeners.
Snooky---that is crazy-who knows what to believe??? I haven't had PETs for a few years and don't miss them a bit. I am currently NED from my latest chest node mets.
Nopink-sorry! What was your dose?
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Sure Denny123 I will keep the stool softeners for now until i see any change.
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NicoleRod - My initial diagnosis was in 2008 and I had adriamycin, cytoxan and taxol over a 6 month period with no serious side effects. Then 7 years of arimidex/femara. MBC diagnosed in Aug from fluid drained from my lungs (thought it was bronchitis, but tumor caused build up). One treatment of taxotere and after 7 days developed severe neuropathy (drop foot, couldn't lift toes). After 3 months of neurontin and accupuncture I don't drag my foot anymore and walking has returned to normal. But at next infusion appt, MO switched me to xeloda. After 1 course (3 weeks) had to stop as skin on hands and feet peeled off. Couldn't go an hour without balm and gloves or socks on to soften and protect. Took a 3 week break from treatment to heal. With feet still peeling, MO recommended going back to xeloda, but in smaller dose. The next day I had a 2nd opinion at another facility and that MO recommended fluvestrant, xgeva and ribociclib. So she's my new MO (even broke up with my previous MO for me!) Just finished round 2 and will see MO for labs next week. If good, will continue for a while, then more scans to see what's happening.
In no way do I want to suggest that my experience with any of these drugs is typical. Just my experience. But those "possible" side effects can be real.
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Good morning and hope everyone is having a good new year so far!
Has anyone else experienced anemia while on xeloda? I know it's listed as a common side effect. I'm in my fourth 3-week cycle and on Wednesday I'll begin my 7 Day off meds period.
This past week I've gotten very pale, my gums are pale, in addition to my usual fatigue I feel weaker, and it's really hard for me to get warm.
I'm not having any trouble breathing or anything like that, but I am going to notify my care team.
My last blood work was on December 20th and my blood counts were fine and my next blood work is scheduled for the 14th.
Thanks for any input!
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Katty-I am okay, but I hope that you can get bloodwork sooner than the 14th! Anemia isn't good.
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I contacted my care team through the portal and am waiting to see what they recommend. I skipped taking my dose this morning until I hear back from them.
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Katty, I think you'd be wise to ask that they do bloodwork, just to be safe.
I have my every-3-months' PET scan tomorrow......fingers crossed.
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Lynn,
Crossing my fingers re your PET scan!
Still waiting to hear back from MDA...
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I heard back from my care team at MD Anderson. The nurse said to stop the Xeloda for now and I'm going in for labs in the morning.
The second week of each cycle is always the hardest for me, but I feel like this is something that needs to be addressed , so I'm relieved.
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Good luck Joyner and Katty!
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My Hb is 8.9 and yes, Xeloda can cause anaemia. I do suffer from fatigue but push on and still attend the gym regularly. I did have a blood tx when my Hb was lower but didnt really improve my symptoms.
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Ladies I started my Xeloda on Sunday and had a Nephrostomy tube placed Monday and a ureteral stent removed. I am still in terrible pain but wanted to ask yall if your tastebuds were immediately changed when you started Xeloda. I havent been able to eat since starting it. I manage to eat some yogurt or a few bites of grits just to have something in my stomach before I take the meds. However im also eating pain pills phenergan and zophran. Thanks for being here and I hope everyone is doing well
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Mel, not at all for me on the taste buds. It has had no impact on my eating habits at all. I hope that you will find that it is something else benign causing that issue.
On another note, good news! I sort of "hacked" into the hospital's patient care portal and found my PET scan report before it was officially released. Having read enough of these, it appears to me that all was stable as of yesterday's PET scan. Hooray....another 3-month reprieve!!
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Today is my 2nd week of Xeloda. I had little nausea for two mornings but so far its been okay. While doing the blood sample everything was good except the Iron. They found that the iron is low so instead of oral supplement my ONC wants to me do the IV Iron - 2 doses. Today I am getting little muscle cramp in my thighs and legs, overall feeling little low, not fatigue but little weak kinda of low. Lets see how this Xeloda journey goes.
Take care ladies.
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GREAT NEWS, Joyner!
Mel, my appetite is erratic. No nausea, just stomach "awareness" as they call it. Some things do taste little off these days. I'm still getting plenty to eat because I'm eating small amounts of whatever sounds good and is on hand when I'm even a little bit hungry. I don't like having to eat really early, so I can take my pills, but I'm managing. Your loss of appetite may be more due to the pain pills and Zofran right now, too. I hope your stomach gets on board with the program soon!
Naesha, I hope the IV iron does the trick.
I'm waiting to hear the results of yesterday's bloodwork to see what, if anything, I need to do.
Katty
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