All about Xeloda
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Nkb, that does not sound fun. Im so glad it got better. I am surprised I’ve never tanked with how much marrow it’s taken over, but Im extremely grateful. That’s awesome that Xeloda made it go back up. It gives me hope.
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Hello everyone,
For those who have minimal side effects, how long did it take your body to adjust? Just finishing my second cycle with Xeloda, but the constant nausea remains a problem for me. I am using everything under the sun to combat it, but it persists.
My world exploded the beginning of this month. My youngest brother, who was treated for lymphoma 27 years ago that included whole chest radiation, died of a heart attack driving home from work. He was my chemo/treatment buddy; the one I talked to about my experiences. Its just heartbreaking.
Best wishes to you all.
Movingsoccermom
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Movingsoccermom, nausea was a huge problem for me too and nothing worked until is tried Promethazine, I also had a dose reduction from 4,000 to 3,000 daily 24/7. I tried the Promethazine after the 2nd cycle, so roughly a month 1/2 in. That was the trick and I got to pretty much normal after that and have remained almost completely SE free without taking SE meds for a year 1/2 now.
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movingsoccermom, I’m so sorry about your brother. You are in my thoughts.
I have nausea on and off, but the cancer is also in my stomach, so I’m not thinking mine is from the Xeloda. I’ve had it throughout. I know Mae had to take Compazine, which was the only thing that helped her. She was having issues in the beginning but is better now with it. I’m sure she’ll pop in
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Movingsoccermom,
I am so sorry to hear about your brother. That is rough.
Re xeloda, most people who write on here say they've found xeloda to be very easy to take. Not so for me. I had several dose adjustments, and then adjustment to 7/7 and I still felt horribly nauseous. I tried just about every anti-nausea med under the sun (Literally -- I ran through them with the breast center's pharmacist and I have a box of meds to prove it.) None of them helped me. But the best for me was lorazepam (aka Ativan). I took it two times a day and is seemed to calm things down. I haven't seen anyone else using it on BCO.
I recently switched over to neratinib and back to faslodex shots. I just couldn't take the xeloda.
Hope this helps.
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movingsccermom- I am so sorry about your brother! That is tragic and hurts!
I used ginger for nausea - mostly candied, tea or chews. They did give me compazine with my first rx, but, didn’t use it. I wonder if the dose needs adjusting? I am on 2000 my 7/7 schedule.
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Moving...I am so sorry about your brother. You and your family will be in my prayers.
Fortunately I don't have nausea. I started at 2,000 and am now at 2,500. Some ladies put the pills into gelatin capsules that seem to help.
Are you taking the pills a half hour after a meal? Partially digested food helps to curb nausea.
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Pbsoup, I'm also from the Bay Area, treated at Oakland Kaiser. I started Xeloda May 2020, with liver tumors and pelvis wall involvement, CA15-3 marker at 406. Markers fluctuated up and down, lowest was 3 months later at 127 in July 2020 with all tumors gone on the PET. Xeloda worked quickly on my spots and then my markers continued to range between 200 and 350 until July 2021, with clear PETs - they then started to rise dramatically - I finally stopped Xeloda when more mets were found (took 4 months for them to show up). I'm on Taxol now and mets have disappeared again and markers are in acceptable range down to 200, from 2200.
Joynert- My HFS has finally gotten better, not completely resolved, I have a milder form under Taxol.
Denny-Barium for CT- They don't use it at Kaiser routinely, they give contrast by an injection during the CT, or use just plain water.
Recently had a low grade fever and reluctantly went in to the ER since I'm on Taxol. No diagnosis. It finally went away on its own. My follow up PET showed GGO, ground glass opacity, which meant I had an inflammation/infection, and it should clear up by the next PET. Not everything is cancer when we get sick, got to remember that.
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Nina, I also had GGO and they finally determined it was a reaction to the Affinitor. I ended up being in the hospital for five days as it was increasing rapidly and I could barely breathe, so don't wait too long if you get worse. Watch your breathing.
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Glad to hear that some of you have seen improvement being on Xeloda. I just finished my first round of it and saw the MO . He said his goal with Xeloda is to keep the disease stable.
HFS - the bottom of my feet started hurting the second week, but after I finished Xeloda I saw improvement right away. I’m happy to walk around now before I start the med again on Tuesday.
Pleural effusion- I have been dealing with this since December, and it has been terrible. I have had 2 thorencentesis done with only mild relief. The cough never went away, but the shortness of breath improved for a little while. So on Wednesday I’m getting a Pleurix catheter put in. Im not happy about it, but I do hope it makes a tremendous improvement. I asked the MO if Xeloda would clear up the effusion and he said maybe, we will hope for that. I also asked how long he thought I needed to keep the catheter and he wouldn’t say. I said I had heard some people only needed it a few months, one needed it 6 months. Did he know people who had it for a year or more? Yes, he has.
Has anyone had a pleural effusion and it cleared up with Xeloda?
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Thank you all so very much for your recommendations. Will see my oncologist next week and will present options. So helpful to hear from those of you with experience!! So far, just managing 2000mg per day, with next scan 26 March.
Many thanks,
Moving
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Hi All, needed a wee break, so not caught up. Just had a stable result on scan which is great after upping the xeloda dose slightly. That’s 2 in a row! GoKale yes the xeloda can help with pleural effusion - it did for me although I also had a pleurodesis done which has left some scarring on my lung and I now will always be breathless when climbing stairs or hills my MO thinks.
Also we are now going to move to having scans done privately instead of NHS as the last 3 have been delayed and there is now a 5 MONTH wait for a CT……COVID blamed for staffing shortages.
Re Hands, mine have been getting very calloused, cracked and sor but found O’Keefes working hands intensive balm ( not just the cream) helps greatly.
Hope everyone is coping and doing as well as possible for us.
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I just restarted X after a 2 week break due to HFS. Also reducing dosage to 2 pills 2x day. MO recommended 20% Urea cream. I put it on broken fingertips and top with cut off finger of nitrile medical glove (my finger condom). Doesn't feel as much like handcuffs as full glove and I can do many things before it falls off.
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Karenfizedbo - fantastic news on your scan!
Thank you for letting me know that Xeloda helped with pleural effusion. Also thanks for the heads up on the pleurodesis. My problem currently is the breathlessness from exertion and coughing at night. So it’s good that you no longer have both problems. I will keep O’Keefes in mind because I use bag balm on my feet but I don’t like it on my hands.
Movingsoccermom - sorry about your brother. It’s such a tough loss especially since you remained close as adults.
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Just curious if this happened to anyone else -- I was on xeloda for a couple of months and it did not agree with me at all. I have had pedicures for years, and continued during xeloda. At my last pedicure, just a few weeks ago, I could tell that my nail on my Left big toe was lifting. As I was drying my feet after my morning shower today, the nail just came right off. There is a soft replacement nail underneath it.
I'm pretty sure it was the xeloda, but I was surprised. With my original cancer (2003-2004) was on a TAC regime and didn't loose any nails at all. This was a doozy -- it had darkened before lifting, so I wasn't so much surprised at that but that my body reacted in the way that it did, shedding the nail. Suffice it to say again that xeloda and I don't agree -- between the nausea that we couldn't seem to get under control and this, it's just not my drug.
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Yes Bev Jen, On Xeloda My big toe nail came off. One Just lifted up and came off, the other I had to have podiatry cut it out since it was half lifted and causing pain.
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Oh UGH to this new format! So hard to find our forum.
Bevjen-I have been on Xeloda for over 4 years and am losing my big toenails for the third time. That is normal.
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Thanks for the info about the nails. I think I'm more irritated at my MO than anything else -- okay, so this seems to be a relatively normal side effect of xeloda. Also, I shed a huge amount of hair. Neither side effect was mentioned to me by either my MO or the Pharm D who works with the breast center. I think that docs should tell us what we are in for and we shouldn't just have it happen on a particular drug without any heads up. Sorry -- that is my rant for today. This is one of the times that I don't think that big centers are the best for treatment -- the docs are so into the research, etc., that they lose the humanity of all of this -- the hair, the nails -- maybe they aren't important to some of the docs, but they are important to some of the patients, like me, who don't want to be surprised by these types of things.
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Just started capecitabine 4 weeks ago - tolerating it okay so far, but here are a couple links re: toenail issues - I too wish our MOs would talk more about side effects, including the rare ones.
https://www.verywellhealth.com/toenail-care-nail-disorders-during-chemotherapy-4301570 -
Pirate girl- I used zentoes for my toes, silicone caps that protected my toes from rubbing against each other (found on Amazon). I used the podiatry department to help when toe nails were bad. Nina
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KBL,
Hi ! you said you take famotidine every morning before Xeloda? I have been on it 9 days and am having horrendous heartburn- went to urgent care to rule out cardiac, the tests were negative. It feels like my upper left chest and throat are burning and squeezing at the same time like a contraction and it builds, peaks and fades and returns ....worse with activity......this has been going on since Friday. Onc-pharm told me to stop taking the Xeloda today 9 days into my 1st cycle and he would talk to MO about next steps but said this isn't normal and to take the rest of the cycle off and they would come up with another plan. I'm taking famotidine 10 mg 1 hour before each 2000 mg Xeloda twice daily dose 14/7 schedule, liquid antacid and tums. The famotidine helps the heartburn symptoms a bit- belching, bloating general burning and discomfort but it doesn't stop the burning, squeezing upper left chest and throat spasms/contractions. And I can't go for a walk without feeling like I'm having a heart attack and needing to stop every few feet once I get going.
Anyone have this ever?
Thanks, I feel like quitter for stopping the cycle but I was literally clutching my chest off and on dropping my daughter off at school this morning.
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Breedebra, I'm so sorry you're dealing with that. I take a maximum strength Pepcid, which is 20mg, in the morning. I don't know if it's helping because I'm still so nauseous all the time, but I have never had the symptoms you are. Is it possible it could be from the Pepcid? If not, then I would definitely see if your symptoms get better off the Xeloda. Maybe you could continue taking the Pepcid to make sure that's not what's causing it, unless you were on that before. I take 3,000mg of Xeloda a day, 7 on, 7 off. Maybe you could try that to help with the burning. Please keep me posted.
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Is anyone out there? This site sure is a horrible mess. Takes about 5 minutes to get to this thread. My last posts aren't showing up.
If it isn't broken.....
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Denny - I'm often checking to see how everyone is doing, so I am here.
Grant.
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I’m here as well.
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I’m here. Recently started following this thread (after the BCO upgrade). So disappointed that the site issues continue.
My updates to my profile haven’t shown up in my signature. I was hoping that the “upgrade” would fix that. Nope. Sigh.
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I am here but mostly posting on the “Share Your Glitches and Technical Problems” thread since the attempt at changing the forum has created such upheaval. It’s hard to concentrate on the main issues of bc and mbc when I feel impeded by the frequent SITE DOWN pages that pop up after waiting and waiting for the pages to load in the first place.
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I'm here!
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I'm here... deleted by accident!
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I’m here.
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