All about Xeloda
Comments
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Yes, Xeloda does this.
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Yikes! Bet that's not listed as a potential SE. Oh well, guess I don't really need them, but I had no idea until now.
Edited to say, I take that back that I won't need fingerprints unless I don't ever travel internationally again. If I remember right, we were fingerprinted upon re-entry to the US from Canada 18 mos ago and at LAX upon returning from Japan 3 yrs ago.
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Hello!
Has anyone had pleural effusion from Xeloda?
Thanks!
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Leee, I have not had experience with pleural effusion, so I'm sorry I can't advise you on that aspect. You are experiencing it now that you're on Xeloda?
Ugh, I am so frustrated. Now, I hate my specialty pharmacy! I wish my insurance would allow my cancer center to fill my Rx. I am up to my maximum out of pocket on my insurance, but the specialty pharmacy is trying to charge me a $1,200 copay for my new Xeloda Rx; it should be a $0 copay! After a two-hr. conference call with them and my insurer last Friday, they still don't get that they are accumulating my expenses wrongly and applying them to my family plan not the individual (me) within the plan. I never should've mentioned my MO rewriting the Rx and just refilled it as before knowing to take only 6 pills instead of 8. I'm sending my nurse case manager after them to straighten it out cuz I just can't take this frustration anymore and shouldn't have to. I start taking my 3rd cycle tomorrow and luckily I have 8 days worth of pills at 6/day leftover from when my MO stopped me taking it midway through my 2nd cycle. Ugh, sorry, but I just needed to vent!
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Bliss-can you ask your chemo center to submit the coupon to get it paid for???
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Bliss- at my pharmacy the generic Xeloda doesn't cost close to $1200 full price!
My fingerprints were pretty faded a few year ago- maybe ibrance - got the face recognition on my phone due to that problem
for my global entry (hope I get to use that again some day) and for the DMV, they had to give me some special moisturizer for my fingerprints to work.
the global entry guy told me many people who are in professions where they wash their hands a lot have this problem also
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Bliss, sorry for all of your frustration. My MO actually recommended against changing to the speciality pharmacy because I wasn't haven't having any problems getting my refills and I usually pick them up from the hospital. She hinted at extra hurdles if I changed.
I haven't had fingerprints for years even before dx. I wash my hands a lot (I was an elementary school teacher) and have always had dry skin. I warn them that electronic prints don't work on me although they always try, so they usually resort to ink and paper and have to send them in. I haven't had one taken for nine years so I wonder what would happen now...Have my first scan scheduled for next week since starting madame X . Needless to say I am a bit nervous. I still feel lousy but am trying to avoid another dose reduction until I see the reports. My MO had me talk to a different onc on the phone after latest labs since she was out of town, but she also thought this might help me. She was right as he said basically the same things although from a different approach. We are all so different!
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IntoLight, sorry you're still feeling lousy even with the dose reduction. Here's to excellent scan results next week!
Finally got my Rx straigtened out I think. I had a Xeloda copay card my MO's office set up, but the pharmacy claims it's was only good for two times. I think it was voided when the MO's office rewrote the new Rx for a generic and the pharmacy ran it that way. Well of course Genentech is not going to pay for someone else's generic. I could be wrong, but it just seems suspicious and too coincidental. I think the understanding we've come to now is that I must meet my family out of pocket for pharmacy, but we managed to get them down to $120 copay. Funny thing is, they told me it's $120 whether it's a generic or brand name, so I said give me the actual Xeloda then! Seems odd to me that they'd both cost the same. After my Herceptin tx Thursday, I'll definitely wipe any remaining out of pocket expenses.
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Intolight, good luck with scans.
Bliss, I have different snafus with prescriptions, too. It's hard to know what goes on behind the scenes. A nurse, Zara, whose main job seems to be following up with patients calls about once a month to see how I'm doing with the meds. She reviews my bloodwork then gets the refill process started. It has to be signed by the cancer center pharmacy then the onc then it gets sent to a specialty pharmacy! This month a new nurse, Kathy, called and said she'd send the refill request in. Days later after never hearing from the pharmacy about delivery, I called them and they hadnt heard from my doctor's office! Two days of calls to the onc and two pharmacies and I finally got the situation corrected. Found out the new nurse sent the refill into the wrong pharmacy. Meds arrive this morning. Geeze.
My cancer center moved into a newly built facility in the hospital since last I was there, so my old phone numbers to specific staff and nurses I've come to know don't work anymore. I was at the mercy of whoever picked up the phone.I plan to update the numbers when I go in next month,
You really gotta stay on top of this stuff! What a pain.
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Divine, yes we do need to keep on top of these meds. Sorry you've had some hassles, too. My insurance nurse case manager also calls me once a month. Usually I don't have much to tell her, but this time I decided she could help me with this snafu! Like me, she said she got 4 different stories from the pharmacy. Went so smoothly in the beginning, oh well. Hopefully, it'll go well from here. Hope the same for you!
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I’m so glad I don’t have to worry about meds, cancer agency pays for the meds. My onc faxes the prescription down to the hospital pharmacy and by the time I’ve made my way down the stairs It’s ready for picku
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I am lucky too. My Xeloda comes via my UPMC specialty pharmacy. I get a call two weeks before I need a refill, and am always asked if I have any questions for the pharmacist.
They then schedule a day for my delivery since I used to sign for them (before Covid). Now they just had the package to me.
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Hello All
I justFailed after 7/8 months on Ibrance/Falsodex. Going on Xeloda tomorrow. So bummed! Anyone have this treatment with good results on it. Anything you can contribute would be appreciated..
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Hi Imagine. I an going for my first scan next week after starting Xeloda so I can't help, but wanted to welcome you.
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Imagine, my first scan on August fifth showed a reduction in size. The radiologist said slight reduction but the biggest tumour went from 6.2 cm to 5.4cm in 2.5 months so I was pretty happy and opted to not get a dose reduction even though my feet and hands hurt like hel
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Karen, I'm going to PM you.
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Mis, glad to hear of the reduction and hope it continues.
On the topic of no fingerprints. The top sections of my thumbs, index and middle fingers peel. Below that and the other fingers do not. Does anyone else have this pattern? The fingerprints on the two peeling fingers are fading. I'm not sure how to describe what they feel like, but I use my iPad and iPhone all the time, and because the peeling affects the texture of my index fingers, sometimes swiping the screen takes a few tries. Like the finger is too smooth for the touch or tap to be recognized.
Karen, I know Joyner has a great list of tips she's sending you to help with your transition to xeloda. Here's hoping things go well for you.
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Karen- welcome and I think there are a number of people who have had a good response to this drug. My TMs went down about 90%, but, I haven't had a PET yet due to corona risk.
DivineMrsM-I also have dry scaly tips of fingertips- my Apple Pay doesn't work on my laptop anymore. phone seems ok.
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Hi everyone
Started Xeloda Monday evening and I’ve been exhausted and nauseated ever since. I hope it’s not going to be like this the whole time. Find it hard to do much of anything. Can anyone tell me that it gets better? Hope it’s juts my body needs adjust then will get a bit better. I have a 6 year old and need some energy.
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Hi Delittkemann.
It was an adjustment for me as well. I had constantheadaches and Nauseawhen I first started. After about cycle 3-4, my headaches lessened and nausea is more noticeable near the end of the second week of a cycle. I’m on my 7th cycle, and I’m feeling much better than when I was on my first cycle. Hand foot syndrome has not been a problem for me (I’m on 3000 mg daily), which surprises me since it is supposed to be a common SE of Xeloda. I have dry flakey skin on hands and feet, but no pain. I wear crocs around the house and Cotten socks and it seems to help limit any foot issues. I’ve also shortened my daily walks. I noticed that when I took long walks, my feet would have some pain that I didn’t experience before Xeloda.
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NorCals, I am so glad to read your post as I was wondering whether the fatigue would improve also. Thanks for asking dlittkemann...
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Karen-Welcome! Xeloda has kept me NED for over 2 1/2 years so far.
dlitt- are you taking the pills a half hour after a high protein meal or snack? I like Emetrol OTC for nausea. Or Zofran is also good.
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Hi all! I will be starting Xeloda in the next couple of weeks (as soon as insurance stuff gets through). I am worried about hand and foot issues. Is it just the hand foot mouth thing or neuropathy? Being able to continue to take walks is important to me - it helps me cope with the fear and anxiety. I don't want sore feet to cause problems with that. I am hoping to have a good response to it since I am triple negative. I'm not ready to be done with this life yet - I have stuff to do. But right now all I can do is cry. My cancer came back so fast that I think I was de novo but my original MO didn't do full body scans, so there is no way to know. He was so confident that AC+T would do the trick. And then he left the clinic part way through my treatment so I got a temp Onc and then finished. I really feel I was lost in the shuffle. The entire experience has me regretful and angry. That's why I moved my care to Seattle - it's a bit inconvenient (about an hour away) but they work really hard to lump a bunch of appts together so you don't have to travel too much. I am a bit scared to have my doctor that far away in case something goes wrong but that's one positive from COVID - the virtual everything. And it's not like there isn't a hospital close to me, it's just not my doctor.
I could really use some encouragement as I enter this stage IV life - right now I feel like there is no hope and want to stay in bed all day. Please tell me it gets better before it gets worse.
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deanders-hang in there since we are here for you! I am an 18 1/2 year survivor of Stage 4 MBC de novo, currently NED, as far as I know...til my next scan.
Your hand and foot problem mostly depends on your dosage. I am only on 2,000 a day at 7 days on and 7 days off. I have been on it for over 2 1/2 years, but no way can I do walking.
Some ladies can do walking, though.
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18 1/2 years! Wow! I hope to follow in your foot steps. I really like my new group of Drs - I really feel like they have a plan but I still feel that fear that I will miss out on so much. It feels like a death sentance now but more than one person has told me that is not the case. I just hope they find a good treatment for all this. You have stayed NED on Xeloda?
Thank you for the ray of hope.
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deanders-in 2004 I only had a year to live since I had so many liver mets. And here I still am! My liver was cleared after 9 months of Gemzar & Herceptin.
There are tons of chemos available, so don't give up hope. I had a chest node recurrence 9 years ago, that was finally cleared after a clinical trial of Poziotinib. Then I went on Xeloda and have been NED. I used to be Her2+++ but my nodes turned to Her2- Somatic. So now I can have Xeloda.
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Hi Deanders. I am on my fourth cycle of Xeloda (3000mg) and so far I am doing ok after four years on Ibrance. I still walk about 1/2 hour; it is not much but works for me and I have no HnF issues as I am religious about using cream daily. What I am trying to say is take a breath and don't panic. We are all different and react differently. You can do this. I am 4+ years into Stage IV dx with liver and bone mets. It is not as much as some but better than others. I am tired, but handle things. You can too.
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I'm not stage 4 but am stage 3 triple negative and have just been approved for taking Xeloda on a reduced dosage for one year after I finish IV chemo in October based on a recent study that came out in May 2020 at ASCO. Is it okay I post here since I'm not stage 4? This seems to be the best post covering Xeloda but I respect the rules. From the limited research I can do it appears my side effects should be less than the full dosage but I'm obviously concerned about side effects. Thanks!
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Laurie-you can send a private message to the mods to ask, but I don't see why you can't seek help here.
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Does anyone know what to do about watery eyes? Every time I go outside I have 2 streams pouring down my face. It makes it really hard to see where I’m going and I have to tell everyone I meet that I’m not crying lo
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