All about Xeloda
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Aurora so sorry you are having a hard time. You know just from reading all the posts, what about lowering it again? My daughter takes 2000 a day. I would like for them to hike it up, just because I want faster results, but maybe it's better like this, she has symptoms, but it's more tolerable. And what about those that do 7 days on 7 off ?
WOW that is a high amount. Would it not be better to start at a bit lower dosage so it could be easier on you?
Leftfoot oh for sure, my daughter is soo cold, she always has scarfs and blankets, she does not even take her coat off at the docs office, even at my house she had it on, and it was quite warm. But, she had this also with different treatments, so…she actually started to talk her messages into the phone, as not to use her fingertips…
Mel yep, Dani has this pain, I am just annoyed because she just mentioned it last wk to Onco, and she just looked at her, she thought for sure something would appear on Pet/Ct, but it didn't and now you are saying you have pain there too, so it makes sense. So many times, she said this bothers her, or she feels this and this ways, and they don't tell her it's perfectly normal, part of the treatment, etc..sometimes she thinks she's going crazy.
Kimberly just from experience, my daughter had much tougher SE's from the Afinitor combo than the Ibrance.
Lita always love your sense of humor. Please keep it up.
Theziz, so sorry you had progression. Is it in the liver the progression? Let us know what you will be doing next.
Robin hope you feel better soon.
Dani's results were insane, some lesions in the bones and liver got better, some got smaller, some bigger, and there were new ones! But, Onco said if something moved at all, then she's keepg her on this regimen till next scans at the end of the month. Again, hope and hope!
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Momall...Dr. Sledge of Stanford said each met area acts like its own individual colony with its own mutations. That's why some areas will respond and others won't. Very aggravating. Gotta keep playing whack-a-mole with mutations and various TX.
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Momall, I have been bedbound for 11 days due to severe nausea and pain. I still work part-time so this doesn't work for me. I called my oncologist yesterday and got permission to stop Xeloda. The recent PET scan I had showed the Ibrance/ Faslodex was working after all and will return to it. Prayers for Dani that the Xeloda continues to work
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Thanks Mel, and Lita sweetie, . I know in my gut, that they have no idea what they are dealing with. Her C is so aggressive, I cannot even remember her not going for some treatment or other.They just keep changing treatment. I could tell from what Onco kinda tells us how she is just waiting for the other shoe drop.I think Dani knows it but like me chooses to ignore her. I know Onco is looking what next...when Xeloda combo does not work any more, she mentioned clinical trials. But I don't ask much, because so much could change still. Prayers for you too Mel.
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Praying for you all.
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Mom,
I'm sorry for you and Dani. Just wanted to let you know I'm thinking about you both and praying something kicks in and gets her cancer under control.
Hugs-
Amy
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Prayers to you Mom for your precious Dani. Makes me mad that we haven't gained some more headway on "immunotherapies." They're already advertising one on TV for small cell (I think it's that one and not large cell) lung cancer. If we can all hang on for a few more years, maybe they'll have something for us BC patients, but the tough thing is there are so many TYPES of BC, darn it.
All we can do is keep fighting and stay strong.
Mel - Sorry Xeloda isn't working for you. Everyone's different, but glad the other combo is keeping you stable.
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Hello, All
I too am cold all the time. Does not help that I live in Sask, Canada and we are in the middle of a deep freeze. Can't seem to get warm. As for the bone pain, I have extremely sore feet, to the point that I have difficulty walking. My oncologist looked at my feet yesterday, but did not offer any solutions. My first round of X was 3800mg. For my round starting today, she reduced it to 3600mg dally, hoping that it will alleviate the pain, mouth sores, etc. Will have to wait and see. Also, my tumor markers went from 40 to 21 in one month. Anyone else have this experience and what were the long term results?
Thank you to everyone for sharing your experiences. It really helps us who are just starting on X.
Diane
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Diane, sorry for the pain and suffering. I've heard of icing one's feet, but heck, that's certainly not going to help when you're cold ALL the time. I use a cannabis balm on my aching joints, back, etc. It does seem to help, but I don't know if my provider would ship up to Canada...are you Legal for medical MJ up there? The medical MJ really helps me w/Xeloda related nausea, too.
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just want to say hello and thank you to all of you. I just celebrated my 6 year ( original) and 4 year mets diagnosis.
You all are a rock for me. I am so sorry that we all met this way but so grateful to have a community who understands.
You are always on my mind.
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For my sister teeth chatterers here in X-ville-- I could not get comfortable either so I bought myself a down puffer vest this week while everything is on sale for Christmas. It is really helping!! It weighs absolutely nothing, so it doesn't aggravate my spinal pain from mets. I am comfortable wearing it indoors, even. Highly recommend!
I got the Highland Park Long Down Puffer Vest from JJill, and it's 30% off through the 11th. It's the longest down vest I've ever seen-- tunic length. The front zipper works from top or bottom, and it even has short side-slit zippers you can unzip when sitting if you like. Seriously, I am kinda loving this thing. I've had it on all day today.
Stay warm, ladies! Mulled wine all around!
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thanks lulubee. Just ordered one for myself.
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Lulubee it's so sweet of you, thanks.
Leftfootforw so right, I would be so alone without all of you wonderful ladies. (and gents)
Amy thx, cheering for the wedding.
Lita thank you.
GrannyD3 that's a nice jump, good for you. Quite a high dosage no?
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Momalltheti, you are right. the dosage is high, but I asked them to treat this aggressively. Hoping to put an end to any further mets.
Lita57, no we are not legal for MJ in Canada. Supposed to be happening soon, but a lot of the dispensaries are being closed down. Actually, seeing as I never cannabis when I was younger, not sure I want to start now. But am going to keep an open mind and may consider it in the future.
Diane
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Lita, MMJ might be legal in some states, but it is NOT legal according to the government. It can not be mailed, it's a Federal offense. You can not take it on a plane. It's still a narcotic, it's still an illegal drug. I have put some in the mail, very risky! But I bought a charcoal lined bag just for that purpose. I have sent some to Michigan and the VI's, which I would never send there again. It has to go through Customs and I didn't realize that until I had already sent it.
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As long as you ship WITHIN the state, it's okay here in Calif.
I get my cannabis balms mailed to me, and I can get tinctures mailed as well. However, a dispensary in Santa Clara Co. won't ship to Alameda Co. So I guess it could be a local/county ordinance. One would think it would be uniform thru out the state, but I guess not.
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Hello all. I'm going to be joining all of you on this Xeloda thread. I had 4 cycles of Ibrance/Faslodex and it failed me. Had a recent CT/bone scan and there's bone mets everywhere. So I'll be starting Xeloda now next week sometime, and looking forward to any and all advice and experience you can send my way. Thanks!
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Prop, I've been on X for 9 cycles, and it has held my numerous Mets at bay for 7 months. Good luck to you. Do you know what your schedule will be yet? How many mgs will you be on?
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Not sure what the mg's are but my onc wants me to start taking 3 pills in the morning and 3 pills at night. 2 weeks on and 1 off.
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That sounds like 3000 mgs total per day. It's about right to start with. They want to hit it hard. You probably won't start to have SE'S until late in the 2nd week, but everyone is different. Read up the thread to get a handle on hand and foot syndrome. Start putting cream (NOT lotion) on your hands and feet now, wearing socks and cotton gloves in bed to help retain moisture.
If SE'S get too intolerable, they can adjust the dose down.
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Hello all,
Prop - I too failed Ibrance/Faslodex after 5 months. I really thought that combo was going to work for me
Just finished my first cycle (2on/1off) of X. Feeling pretty good, just fatigue and nausea which I had before I started the cycle and slight 'tingling' in my hands. My dose is low at only 2000mg/day (not adjusted for surface area). I was all ready to start with cycle 2, but my bloodwork is showing mild neutropenia, moderate thrombocytopenia and critical low hemoglobin. I was shocked because I was really feeling OK. Onc wants me to wait a week before starting cycle 2 AND switch to 1on/1off timing- so frustrating, this is what happened with Ibrance as well, feels like I'm off treatment more than I'm on it. Thank goodness I didn't start with a higher dose. The complicating factor is that I have bone marrow mets (in addition to diffuse bone mets everywhere), so are the low counts from the cancer or treatment, either way kinda screwed when both are causing low counts. Question = Has anyone been unable to take X because it effects their counts to much??
On another note: Family has decided to move the New Year's party to my house because it would be 'easier' for me, I wouldn't have to drive the 2 hours. Are they crazy! Now I have to clean, cook, find beds for everyone, I'm exhausted just thinking about it. Oh well, DH thinks it's a good idea, so he will have to help a lot!
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Lita, it's all quite interesting. What's legal, what's not! I wonder if it's ok there because it's legal for recreational? No idea about the different counties.
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Although we voted for recreational MJ this November in CA, it is not yet available and probably won't be until some time next year.
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Sciencegirl, Dani almost missed her treatment because her #s were so low, but Onco decided to take a chance, I am glad, she is coming along. MPV was 7.9 Neutr% 1.0 The Hemoglobin also fell below their limit of 11.7 hers was 9.8. At what number btw would someone need transfusion? Below 6.0? Could you tell me your #s, so I could have an idea? Onco said it rebounces the week after, she is extremely concerned with the liver mets etc.. (innumerable, some got smaller, some larger, some new! So she always has this serious look), so I'd say Onco feels she could do that. Dani also does not have symptoms. Also, the AST/ALT is coming down, the Alkaline Phosphate was a bit down also, then going back up, should it not be in sync? Anyone here knows?
Funny what you mention about the party, turns out, we were gonna have the Hanukah get together at my home, but D really prefers at her house, it's larger, and she hates the traveling to my house if she does not have to. My plan is to go there earlier in the day, and make a mess in her house, (we clean up together), she prepares her specialty, and her little ones are very happy to set the table, so it could work out. How about you have a Potluck dinner, everybody prepares something, would that make it easier for you? Yep you still have to prepare the house, it's a lot of work, maybe your DH is thinking this will take your mind off "other"stresses.And he will help out!
Need idea! I am trying to gather thoughts. Gifts. Dani has been going in 3 weeks one week off. So we get to see all the nurses that administer the infusion, NP, front desk person, secretary, the phlebotomist, other secretaries that sometimes take over when main secr is not there, insurance person, yep, and Onco. So what now? How do we gift everyone? Hanukah, Christmas I think they kinda would like to get something…Just a nice chocolate ensemble, no. Little gifts to each person? It's a lot of people but if it's the thing to do…Could I ask what are all of you doing? TIA
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A little update on my wife's use of Differin on her feet. She's been using it for months now. Her feet look really good, but she is suffering from sleeplessness, in part due to a burning sensation on feet. She has quit the differin,and is now sleeping better. So, it looks like Differin may not be the best thing for hand foot syndrome. It might be causing or adding to the burning sensation.
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Momall - By my perspective 9.8hemoglobin is not too bad. My onc considers transfusing when it goes below 8, don't know if other centers treat differently or this is standard? My hemoglobin was 7.6; ANC1300 and platelets 76,0000 - all in all not too bad, I think onc is scared of how much lower things would go if I started again, so a week of no treatment (except the tamoxifen) for me.
Good luck with your party, sounds like you have a good plan, I'm curious, what is Dani's specialty?? I'll do what I can for my party and that's all they get, ha ha. Maybe I'll cater in a tray of chicken franchise, my fav.
I think the staff would enjoy a little chocolate gift : )
Timothy - thanks for the info, I'm glad to hear she is sleeping better - so important.
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Sciencegirl of course it makes sense Onco wanting to be cautious. Re: specialty: fried shredded potatoes, with oil, eggs, salt,seasoning to taste (and whatever else one wants to add), you flatten it like a pancake, usually not larger than your palm, the flatter the better, she keeps it simple, it's more about memories of their beloved grandma. Of course, we make it all year round also, (too much work) but on Hanukah! it's competition on taste between her and sibs! Need something mundane to make the booboos go away
Catering sounds pretty smart!I am still harping on the gifts, yes, I could get a beautiful chocolate arrangement, but should not the NP and secretary that do more get something else? The thing is also, it's an open office type of space, so everyone sees what everyone is doing, getting etc...
Fancy wine for Onco or a nice scarf, that is probably the easiest.
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Moma, I hear what you're saying about wanting to give gifts to medical employees you see frequently. Because there are so many recipients involved and it's an open area where everyone sees I would suggest a pre-made tray of dried fruit, assortment of candy or an ornament for the tree if they display one in the office area. Put a bow on top with a label "To my Friends at name of clinic" and sign your name to it. Done.
I've thought a few fragrance-free pumper bottles of hand lotion would be welcome since medicos wash their hands so often.
I wouldn't bother trying to give individual gifts. Medical workers at this time of year must be inundated with little gifties from patients. Much like kids giving holiday presents to their teachers.
You're sweet to consider gifts for the clinic workers. I've been in this Stage IV "game" for 11 years and have never bothered to give anyone gifts.
Kessala
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Hi xladies;
My Dr. Is switching me to faslodex. Any input or suggestions are welcome. My husband says it is painful.
Cheers
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theziz best wishes on your new treatment. I have read there are ways to make it not so painful, go to the thread, or Ibrance and Faslodex (something like that, you should find guidance)
Kessala, Thanks so much, the lotion thingy could be interesting, I will look it up. Someone else mentioned, bagels coffee? I like the idea, but I am not sure if it's so Holiday themed, or it doesn't matter maybe. I'd probably bring it in just the week of the 27th, (it will be a mix of Hanukah and Christmas)
Btw, eleven years sounds like haven. Good for you. It makes everyone hope.
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