All about Xeloda
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I have a question for the lung mets ladies or gentleman out there. I am now on Xeloda because Ibrance/Falsodex failed after 8 months. I will not know this is working for about a month with scans. I have a small plueral effusion that does not cause me any discomfort. I was doing some research and I was stunned to learn that with plueral effusion survival times are 3-12 months??? When I read that on a PUB med study which was done in 2018 I was so shocked because I am sure I have read on these posts that people have lived years. I just hope the Xeloda works and gets rid of the effusion. Thank you in advance, and because I do not see many people on these boards with lung mets I will post this question or reassurance plea on several different topic areas.
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Hi Karen -- I wanted to respond since my wife has lung mets, but I don't really know the answer to your question. My wife doesn't have plueral effusion (at least that we're aware of). When my wife was diagnosed in April 2019, her MO indicated that her survival was likely 2-3 years IF SHE DOESN'T RESPOND TO TREATMENTS. So far, she hasn't responded to either Ibrance or Piqray, but we're hopeful that the third time is the charm (with Xeloda). I wish you similar good luck with Xeloda! Sorry I couldn't be of more help.
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Hi imagine, I have lung mets. I have had pleural effusions twice, chest drains both times, when the then current cancer drugs failed [Faslodex 2017, Ibrance 2020] and I had progression. I have never heard it can predict your long term prognosis, but I don't do much 'research' . It indicates that my cancer is aggravating the lining of my lungs. I have been told by the radiologist if this becomes a constant problem I can have a 'port' put in, so it can be drained regularly without the surgical procedure of another chest drain. I am hoping Madame X prevents this from happening.
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Hi Everyone: Imagine: I was diagnosed de nova with lung mets in January 2017. After 3 months Taxol and about 3 years Ibrance/Letrozole they aren't seen on my CT scans. So I've made it longer than 3-12 month if that's any encouragement. However due to enlarged nodes and rising tumor markers I'm starting on Xeloda. I hope that Xeloda also works on keeping the lung mets down. Mine were actually in the pluera lining. Is that different than having mets in the lungs? I'm so happy to have found this thread. My MO wants me to start the Xeloda Friday. I'll be doing 7 days ln and 7 off, and I'm nervous to say the least. I've been off Ibrance now for over a week and am anxious to get started on this new treatment. I don't know why she had me wait a week after receiving the meds. Maybe to clear the Ibrance out of my system?
I ordered some Udderly smooth cream with Urea and got some gloves to wear at night. I got some ginger tea for possible nausea. Any other suggestions would be welcome. I hope the side effects aren't too difficult. Any success stores you can share on Xeloda are so encouraging. I plan to go back to work, just one day a month for now. I've been on leave due to Covid. Has anybody been able to work while on Xeloda?
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Elenas, just a short note to say after three cycles of Xeloda two weeks on one week off, I am NEAD. You asked for a good story...side effects are manageable. Just don't let them get away from you before calling MO.
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elenas401.
Welcome to this thread.
When diagnosed with liver mets, i was on AC for 3 months then shifted over to Ibrance/Letrozole, which lasted 39 months! I think my FgFR1 amp mutation caused the progression in my liver. Ugh.
I was off about a week before I started..just waiting for the med to be delivered with all the paperwork.
My advice is don't be a martyr..if you start to have symptoms, like firey painful, burning feet or severe diarrhea, call your MO asap. From experience and from the mouth of my MO, it is better to dose reduce than to keep going off the Xeloda to heal.
For nausea, I used Zofran, but dose reduction resolved that. I started at 3300mg/day, now at 2300mg/day..can see myself further reducing, 7 on/7 off. My feet were in bad shape..not my hands..strange. After 7-8 months, CT shows no new mets or growth of current ones. Maybe they are dying. My CA 15.3 continues to decrease and liver enzymes now normal, so it is working.
Joyner might send you some suggestions via PM that she has accumulated.
If you have questions..ask. We are not oncologists, but can give you some advice from our experiences. On a positive note, once I got the right dosing, it was so much easier than Ibrance/Letrozole.
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elenas...welcome. I use Aquaphor at night with silicone socks and food service gloves. I also use it during the day on my feet with socks, and sometimes on my hands if I am just sitting here typing.
Tea Tree oil on all of my toenails in the morning. If my toenails (usually the big ones) get sore and red, I use Betadine all around the nail, and they always heal up in 4-5 days.
Splits in my feet and "toe-pits" get Bacitracin and a band-aid, as well as cracks in my "finger-pits".
As mentioned above, as soon as your hands and feet start to get sore, call your onc. I have been Stage 4 for almost 19 years and on only 2,000 a day at 7/7.
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Elena, I PM-ed you (Private Messag) you back on October 8th with the list Sandi is referencing. Did you get it?
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Got it. Thanks!
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Denny123, you are so right about taking care of finger tips and toe tips..even my MO said to pay attention and keep moisturized as any indentation can crack and get infected. I saw her today and she said I had classic Xeloda "shiny palms" . And here I was bragging that I had no hand probs..haha.
Even with uptick of slight nausea and GERD (use Pepcid AC) and red feet at beginning of OFF cycle..she will keep me at 2300mg/day. My ca15.3 continues to drop.
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That's great news Sandi!!! My MO dropped me to 2000 starting yesterday, hoping it keeps the markers declining. Just saw the first decline last cycle which was uplifting. She said I'm a "slow clearer" so even though 3000 is for my ht/wt, my body keeps it in me longer so I was getting H/F symptoms on day 4.
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Pamela23, Maybe I am a slow clearer too! I started at 3300mg/day and by cycle 2 was in a wheelchair. My feet were awful, so painful and could not walk..crawled to bathroom. 2300mg seems to be fine.
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Does anyone get chest pains? I had really bad ones over my heart 2 weeks ago, but no other signs of a heart attack. The pains now go across my chest intermittently, but not as bad.
My PCP ordered a stress test. I am also worried about a massive cancer spread....as our minds tend to work like that.
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Sandi-my palms sometimes get so bright red, but without pain. Sure freaks everyone out when they see them.
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Denny, I have had chest pains twice. They are short--usually less than thirty seconds. I was panicked the first time until it stopped, but I was alone and felt fine after and (maybe foolishly) thought it was just indigestion. The next time I didn't panic because of the first time, but I will discuss this with my MO during my next appt especially if it happens again. I wondered whether anyone else experienced this.
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I get pain in the areas I know where there is cancer, during the first week of xeloda. when I mentioned this to my oncologist he said 'well something is happening' . Although blood tests look positive, I wont know what until scanned after 4th round at 3300 ,in November.
This cycle I have been getting more side effects: some hand and foot things going on; hot toes at the end of the day, shiny palms and finger nails splitting- lots of moisturising. Unfortunately, I am still losing hair. I had a lot to start with but I hope I am left with some hair!
I am trying to keep at the higher dose for as long as I can cope with the side effects, to hit the cancer hard, but I think I will be lowering the dose in the future. It is reassuring that some of you are doing well on a lower dose.
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Denny123, I hope your chest pains can be found to be caused by something minor.
Illimae, how are you doing on your reduced dose of Xeloda?
Was started and so far remain at 3000 mg, 1500 in morning, 1500 in evening, 7 days on, 7 days off. I’m finding the side effects to be cumulative. I wore the gel footies with the toes cut out in the summer but just got gel socks that cover the whole foot. My feet are extremely dry, especially the backs of the toes. The new socks feel pretty good. The bottoms of my feet, tho, are itching like crazy! Does anyone else experience that?
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Divine, I’m still having nausea and vomiting at 3,000 daily 14/7. The vomiting is only once per day but after so many months of starvation and vomiting due to nerve damage, it’s an SE I’m no longer willing to deal with. I’m going to try a 3rd nausea med but if it doesn’t work either, I’ll be reducing to 2,000 to see if that helps. I’m only on this combo to treat the brain mets (body is stable), so I don’t think I need to struggle so much.
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illimae, yes, quality of life is important and you know where you need to draw the line. Would your doctor consider the 7 on, 7 off schedule? Not that I know if that would help you, but my onc said the 7/7 seems to help lessen the severity of side effects for some.
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Denny10--funny how you mention you get pain where the cancer is, I found out a few weeks ago that I have bone mets (I knew since Sept I had liver mets). Yesterday was Day 2 of Xeloda & my bones where the mets showed up were achey all day. The worse was my hip joint. I had a bone strengthener infusion last week and wondered if the mix of the two had something to do with it. This morning it's resolved. So weird!
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I took my first dose of Xeloda this morning and am nervous to say the least. I took it about 8am with breakfast and understand that I take 4 more pills in twelve hours. That would be about 8pm. Instructions say to take it with food and it wouldn't be hard to have a snack at that time, But the instructions also say to take within 30 minutes of a meal. To have the second daily dose at suppertime, I would have to be up at 6am to have the first dose with breakfast. How do most of you time your dose to take it with meals and still get 12 hours between doses? I also had some loose stools this morning and am ordering a refill of Immodium to deal with it. I hope it didn't affect how much of the med is absorbed. How does diarrhea affect that? Hope everyone's issues, chest pain etc. are resolved. I appreciate what all of you contribute here.
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Elena, I eat at 7 a.m. and 7 p.m., and I take my pills at 7:30 a.m. and 7:30 pm.
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Elena...You can take the pills 10 hours apart, and they should be taken a half hour after a high protein meal or snack. I take my first pills after breakfast, around 9 ish, then have a snack at 7 ish in the evening with the other pills.
Divine...some days the bottoms of my feet are soooo itchy, so I sit here at my computer with my feet on ice packs. And then sometimes the top part of my toes are horribly itchy. It seems to help to put Betadine on my toes, and then also ice packs on the tops of my feet.
Denny10 & Pamela...18 years ago when I had numerous big liver mets, I had no pain until I started on Gemzar with Herceptin. My onc told me that meant that the chemo was working and he was right! The sure made the pain tolerable.
Thanks for the replies about the chest pain. I took Gaviscon, a baby aspirin, coughed a lot (since that is supposed to help heart attacks), and finally a few Motrin. They eventually got better, and subsequent chest pains aren't as bad.
But I will welcome a stress test and my CT scan to be sure.
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Elenas, I am not so good at getting 12 hours between doses, but as long as I have at least 10+, I do it. This may not be recommended, but it works for me. I struggle to sleep so I refuse to wake up early. I am having good results still with this timing. Loose stools most of the time are the norm with me. I try to take Zofran instead of Imodium but then I have to watch out for constipation. What a chore!
Denny, odd. My hair is actually growing in better with Xeloda than it did on Ibrance. My nails are even stronger although I do have some H/F issues.
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I eat and take Xeloda between 7 - 7:30 am/ pm. In the morning I usually have yogurt or oatmeal. If I eat dinner earlier than 7 ish pm, then I eat several peanut butter crackers.
PLEASE for newbies, watch for symptoms, like firey red feet/hands, bad diarrhea and vomiting. Call your team right away. You should not suffer and dose reduction can be effective with MO guidance. Also there is the rare person who lacks the enzyme that breaks down this drug. I was tested for it. I will look it up and edit this post.
Edited: I was checked for DPD enzyme deficiency. I was negative for the specific test my MO ordered. She said there were other tests she can order. Don't know what that meant. You need this enzyme to metabolize the 5FU or else will build up in your system.
Dose reduction helped a lot.
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elena, I prefer pepto bismal over immodium, it’s easier on my system, altho I don’t need to use it very often on Xeloda.
I have my iPhone set to remind me to take my meds at 8:30 am and 8 pm. Without the phone reminder, I would never remember most of the time, so I’m glad I have it. I don’t have much appetite early in the day so that’s why the 8:30 time but if I happen to eat a little earlier, I sometimes take the meds earlier. At night I have a small snack since we eat dinner around 5 ish.
Intolight, my hair is also thicker with the Xeloda. It thinned and stopped growing when I was on Ibrance and Verzenio.
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Elena -- My wife, Polly, is just ahead of you as she took her first dose on Tuesday. She's on 1500mg morning and night for 3000mg total per day, 7 days on and 7 days off. She's a night-owl so she takes her's at 11:30. She takes it with breakfast in the morning and then has a snack of a banana or yogurt or the like at night. So far so good on SEs for her. Best of luck with it.
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DivineMrsM: I'll try the pesto if I have trouble with Immodium. BLMike: I think I'll try a light snack at night like your wife. Glad to hear side effects aren't bad yet. I hear you have to keep on top of them initially and let your MO know of any.
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I wasn’t told that the 12 hour recommendation was strict and I just can’t eat that early, so my doses are around 9am and 7pm. I still plan on another dose reduction but I agreed to try a different anti-nausea med first, so we’ll see.
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I meant pepto, not "pesto"
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