All about Xeloda
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I will be starting Herceptin, Tykerb and Xeloda later this week. While thankful for another treatment, I am also extremely scared! I would truly appreciate any quick Xeloda suggestions!
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ihmydarlin- are you adding Xeloda but have been on the other 2?
I’m on Tykerb and Xeloda so have some experience with that combination. Not on Herceptin as they are trying to take it easy in my heart.
Quick Xeloda things:
Take with four
Keep hands/feet out of hot water for prolonged periods
Take sun precautions
Get an anti nausea med forthe first few cycles
Keep off feet as much as you can
There is a fatigue factor
Get good lotions to apply to hands/feet to help combat skin issues
Xeloda dose CAN be adjusted so if you aren’t doing well talk to your MO. The dose can be changed and so can the schedule.
Lots of great info in this thread.
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oh and Tykerb Xeloda combo typically does cause some serious diarrhea. Nothing new to some of us but definitely something to know anout
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left foot forward,
I have been on Kadcycla and Votrient (off label) but scans have recently shown progression in bones, new mets in lungs and lymph nodes. So it's time for new treatments. Thank you for the suggestions!
In regard to the high chance of diaahrea, will that interfere with working full time? I've been trying to get my ducks in a row!
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ohmydarking- I time my meals so it hasn’t been a problem. Imodium also works for me when it’s at its worst. You should be able to work full time.
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Also avoid pressure and friction on your hands and feet.
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Donna, I feel for you. I really do. I've been working full-time this entire time. With iv chemo looming this fall, I have to figure out if and how to cut back. The official line from the bosses is they want me to work as long as I want to. Very sweet of them. I've been training up some people (they ave no idea they're being trained -- they think they're being included LOL) to do parts of my job, and the society will need to restructure things when I can no longer work. Complicating it is that my boss will retire in a year or two. There will be a lot of changes. Some of the powers that be are assuming (others are hoping) that I will be around to help with that transition. We'll see.
Here's one idea for you. You mention that you feel like some of the other aides are having to accommodate you. Can you simply ask one or two of them? Maybe they like doing the parts of the job that you can't do. Maybe you can do parts of their jobs in exchange. Maybe you'r reading too much into it. Or maybe they are full of resentment and you do need to rethink this. No way to know unless you ask.
Ohmydarlin, welcome to the Xeloda club.
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Thanks Goldie and Pajim. I am mulling things over. I think I am putting this guilt trip on myself about not being able to handle all the job duties. The other aides have told me several times that they will be happy to do whatever is needed. I work with very nice people! Right now I am on an extended trip to the east coast that will be filled with family and relaxation. When I return home I will see how X is working, and make a decision.
Donna
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left foot,
would you mind sharing how you time Xeloda and tykerb?
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Gosh, you "young ladies" make me feel so old at 69. I have been on chemo for 16 years and the fatigue makes me crazy.
I am on SS and have a store on eBay which helps to pay my bills and keeps me very busy. I used to be a computer programmer, but after my divorce, exhole left me with a ton of bills. So I started a cleaning service and cleaned through 7 surgeries, radiation and chemo. When I had a recurrence in my chest nodes 7 years ago, I had to quit the business and stepped up my eBay selling.
I am only on 2,000 a day of Xeloda at 7 days on and 7 days off. I have really slowed down, especially since I tripped on an unmarked step in a restaurant last year and broke my right femur and crushed my left shoulder. After 2 bouts of pneumonia in a year, I now have a lot of lung damage.
So I am forced to walk slowly and soon hope to finish up my year-long stint of PT for my shoulder. Then hopefully I can exercise a little.
Mentally it drives me nuts that I can't do much at all, but it really is a miracle that I am still here. We have to be patient and soldier on.
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Wow! LFF and Denny you rock!
I'm on 2 pills a day with no break. Fatigue is real frustrating. I have hair and am mobile so most, including family, don't get it.
I was hoping for a vacation break but got a bronchitis break instead. Should be grateful because it's longer.
Am at the beach now with family. Have walked more the last few days than the last six months. Yesterday my feet hurt after the tour of the turtle hospital.
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Donna-apply for SSDI(social security disability). I feel as though I am just getting my SS early( I'll be 60 in Aug.) You will receive it very quickly with the MBC diagnosis. Stop working if the amount you receive is enough for you and your family to be comfy. You won't regret it for one minute. Best, MJH
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Having severe anxiety today with my scan at one. I have a hard time drinking that crap they give you. I vomit with the regular stuff so now I have two big bottles of liquid chalk to get down. The iodine makes me feel like I can't breathe so I have to take Benadryl too. I'm taking a Xanax too. Hellof a combination for lunch lol. Am I the only one who gets this stressed over a ct scan? Sometimes I feel like a big baby but I just don't deal well with scans
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Awww Diana, I'm so sorry about the anxiety. And about having the drink the crap. That would make me throw up for sure. My center makes me drink two bottles of water. They put something in it but it's tasteless. I try to remember to go there thirsty.
You're not being a big baby. You feel the way you feel and that's totally valid. Are you anxious because you're afraid of what the scan will show? Or just because you have a hard time with the medications?
A wise lady on these boards once said that she felt scans were useful because they told you what is going on before something bad happens. If you never had a scan you wouldn't know anything until some bone broke or something else happens. They aren't the cause of progression. they're the cause of information. And we like information!
The best part of CT scans for me is they're over in 5 minutes. PET scans and MRIs take forever! I remember when CTs took forever too.
Hang in there -- soon it will be over.
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Pajim- the iodine makes me feel like I can’t breathe the the dreaded results. I would rather stay I denial. Everything lately for both me and hubby had been bad news. Terrified of more
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Dianarose, "scan-xiety" is completely normal. For me it's about the results but I hated the stuff you drink so much I once asked my onc for a PET instead. My center has changed protocols and now I drink water but I don't think they put anything in it. I'm so sorry you have had a spat of bad news and hoping you get good results from your scan.
Donna, I had been on medical leave since last Ocotober until I could retire this June. This was before Xeloda due to an IV chemo that was very hard on me. I was an elementary school principal and even though Xeloda has been easier I wouldn't go back to work. I miss kids for sure as I know you will, but I have not regretted stopping work for one minute. I think applying for SSDI is a good idea and if you can manage financially I would definately stop working.
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I was just asked to sub in my daughters classroom. I subbed yesterday to help them out. They need me again today if I’m available. I told them no. I’m on day 14 of my Xeloda cycle, am tired, and need to rest. It’s so hard to say no. I could muster the energy to sub today fir part of the day but I’m learning to look out fir myself.
My heart goes out to all of you who have to learn how to rebalance your lives while living with cancer.
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Thank you MJH and intothewoods for weighing in. I have been considering SSDI and I think we will be ok financially. I will be sad to stop working, it's like giving in and letting this disease win this round!
On another topic, I woke up this morning, day 11 of my first round and my feet felt sore on the heels and balls of the foot, which along with the 6 blisters on my toes should have stopped me from going on a walk. But of course, I ignored my better judgement and am suffering the consequences. I can barely stand. Doctor says to stop X for a week, then go back on at a dose of4 morning, 4 evening. I am happy to stop since I am visiting Wash DC and my SIL and I have things to do! I hope the feet recover quickly. Anyone experience this?
Dianarose, good luck with the scan. I haven't had a scan where I have to drink something. Sounds pretty awful. Hope the results are good!
Donna
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Dianarose, by now you're out of the scanner (YAY!!). I hope for some good results for you. With luck you don't have to go through this again for a while.
I wonder -- can they find a protocol without iodine? Is that what is in the normal contrast? If you're allergic surely they can do something else. A PET wouldn't require that. That one has radioactive sugar.
Donna, I had blisters twice. Both times I stopped X straighaway and the blisters were gone in three days. I did have to put my feet up for a day (in Copenhagen boo hiss). Lo I haven't had them again. I stopped getting on airplanes on day 14. If I had to I stopped the meds after day 13.
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Donna,
I had a blister and loads of peeling on both feet on my last cycle. This time nothing at all going on with my feet other than the weird discoloration. No peeling, no blisters no soreness. Nada. It seems like every cycle is a bit different. A few cycles back I had no blisters or peeling but my feet were very sore. I still walked all over San Francisco though.
Pajim, why do you not fly on day 14? Speaking of flying, I used wheelchair assist at the airport just to preserve my feet and energy. Won't fly without taking advantage of that nifty little service again. gets you through security faster. They aren't allowed to ask why you want/need it but figured my lack of hair told the story anyway
Lisa
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Donna, I grieved for 3 months before I retired! I was fully engaged in retirement in two weeks and have never looked back!
I had the very sore feet with a few blisters the first two cycles. There were a couple days when walking was uncomfortable. My feet healed during the week off. This cycle is mostly peeling skin with a couple toe blisters. My MO gave me permission to go down a pill if my feet prohibit me from my normal activity. Are you using lotion with 10% urea? I am on 4 pills morning, 3 evening.
Dianarose-I hope you can feel some peace this evening. I freak out when i have to drink stuff with side effects also. I know the iodine is tough for many.
Best to all, MJH
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Survived the scan now to survive the results on Thursday.
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Dianarose-I am glad that you survived okay. Now the waiting. I panicked for the first several years, but after 16+ years of scans, I just go with it anymore.
And I just started to get the CT scans now instead of a PET. Soooooo much better and faster. My last one, I didn't even have to drink stuff-they just put the contrast into my vein.
I am on cycle 7 and feeling better. My feet are okay since my lungs are really bad from pneumonia and I can't walk much. Now dealing with a pulled back muscle from coughing too much with the lung thing.
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Not to interject the topic at hand but does anyone know the reason behind getting contrast injected into your veins vs. drinking it? When my wife was being treated in Texas for lymphoma, I clearly recall her hatred for the barium (?) she had to drink up. Where we live now, in Italy, both for PET scan and MRI, she got injections.
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Dani- the one you drink is some sort of contrast and was told today the one they inject is a dye. My MO doesn’t know how to read them but goes by the report. Lobular is tricky and doesn’t always sho up well on scans. My DH and I haven’t got any good news lately. We both have had surgery to remove cancer and neither one of us got clean margins. I pray my scan is okay. We need this pattern of bad luck to change.
Denny- I hope you start feeling better. I think I’ve been on Xeloda for 8 months and nothing ever with my hands but do have a ton off dry skin and peeling on my feet. Can’t say they hurt though. I’ve been blessed there.
I’m really tired as I took Xanax and Benadryl before the scan. Should sleep good today
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Dianarose, sending positive thoughts y'all's way. xxx
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Hi all, I know many of you from other threads. I got my scan results yesterday and I have progression, so Ibrance and I are done dancing. While any change is scary, I am thrilled to get off the Letrozole! I am hoping being off the hormonal will help with the hot flashes and night sweats and maybe other things! I have read the last 5 pages, so I hope that I will be prepared for the se's.
I have bought the recommended lotions and I have anti- nausea meds and gastric meds. I have a couple of questions though. Can I have a glass of wine occasionally? Can I drink Matcha Tea? Will I sleep better? So many questions.
Hugs and prayers,
Claudia
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Hi Claudia, welcome!
Good news. All my hot flashes and the like went away a couple of weeks after I started Xeloda. And I drink a glass of wine with dinner most nights. Tequila when I'm on vacation or out with the girls.
No one has objected so far.I don't know anything about Matcha Tea. And sleeping? I dunno. I feel like I sleep a little worse, but people who have a hard time with hormonals say they stop waking up with night sweats. That's something at least.
FYI you may not have any nausea at all. Or it may come and go. Diarrhea is pretty certain as Madam X gives me a bit and I would have sworn that giving me diarrhea is pretty impossible. But everyone is different. Your experience may vary. And actually it may vary from cycle to cycle.
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Pajim, I can't even tell you how happy that makes me! Also, diarrhea is a welcome relief after the concrete balls I have been having! I am determined to stay positive! I got 6 years with the hormonal and Ibrance and am hoping for 6 More
Thanks,
Claudia
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Big- I pray you get many more years
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