All about Xeloda
Comments
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Ok, still digging and found what I think is the original trial here: http://jco.ascopubs.org/content/17/2/485.full, but it specifies 12+/-2 hours. Of course it's also from 1998 with 18 years to determine more info, so who knows? Why can't anything just be cut and dried with this stuff!
I think I need to eat my breakfast, take my Xeloda, go for a walk and stop stressing about this stuff for the day, lol!
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Roses,
I remembered one more thing. After the trial nurse left [and by trial, she was part of a Xeloda trial way back when] I discussed this with the doctor. She stated that 12-hrs was the goal, but not to rearrange my life completely to meet it. Simply do my best to keep the doses as close to 12 hrs as possible, and to take at relatively the same time each day. After, we are in this for the long haul.
Hope this helps,
*susan*
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Hi to Susan in SF, Babs and LeftFoot, thank you for the kind welcome back. Its good that things are chugging along for you, despite ups and downs.
In reading over the variety of doses that people here are using, I am wondering about going up from 2 and 2 a day, to 3 and 3. That's moving from virtually sub-clinical to a low dose! Will call oncology on Tuesday and see what they say.
I am watching a node on the side of my neck, behind the angle of my jaw and the back of my earlobe. Its been noticeable by feel for a long time, but is visible now and growing a bit. Have others had nodes that were palpable?
JFL, you mentioned the cancer flare syndrome, which is what I hope I have been having since resuming X after a break. How long does that last, do you know?
I am hoping everyone can enjoy some of this long weekend, which here in Maine, is being very sunny and lovely. One day at a time, right? xo Mame
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Thanks for the additional info, Susan!
And Mame, my lymph notes weren't palpable so no help there, but good luck with it--palpable may be an advantage if it lets you easily monitor treatment response, right?
Happy Labor Day, everyone! Hermine shifted course so a crisp, Fall-like day in Massachusetts today. I may need to get some pumpkin spice things!
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roses. I've always wanted to come up there in the fall to see the leave change color. are the leaves beginning to change yet ? So jealous. Not so pretty here but north of us about 3 hours their are some co!ors some years usually only get like a 2 week window before they fall off . Def not as pretty as pics look in MA.
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Patty, too early for leaf changing. Peak of the season is usually around Columbus Day, give or take. Heck it was 95º here just last week! This year, the colors will not be vibrant since we are in a severe drought.
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susan. Bummer on the drought. Peak around Columbus day is perfect since our anniversary is the 8th and my birth date is the 10 th sounds like that trip would be an awesome present for me from dh. But guess I'll have to just keep living At least another year so I can see them.
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Patty,
PERFECT time to visit. If you decide to go for it and want to stay in some of the adorable B&B's in Vermont, for example, make your reservations early. The flood of people heading into New England that time of year is astonishing. You can always cancel, but you can't get a room if there isn't one to be had.
*susan*
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good advice Susan. Thanks
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I am starting Xeloda on Saturday. Problem is I have hard time swallowing anything bigger than Benedryl. Does anyone else have trouble swallowing pills? I'm really scared about this dru
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i don't have an problems with the larger pills but I've read maybe taking it with something like an applesauce texture so it goes down smoothly. I am sure someone will be around soon with more experience than me in this
So tomorrow I'll start my cycle back on X. Thus time it's 2 tabs twice daily since I've been taking it wrong since beginning July 1. Hoping no major side effects esp hf stuff with the increase. I am excited that I've had such a positive response so far, how much better am I gonna be when I work back up to the scheduled dose.
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I am no help. I have had no difficulty taking the Xeloda one pill at a time, and have never taken Benadryl so I don't know what size they are. I find that I drink about 12oz of water to get all three pills to my stomach successfully.
Wish I could be more helpful,
*susan*
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capinva, I too have trouble swallowing pills and this was a concern for me. Xeloda pills are not really too big and go down easily. I was surprised and glad! Swallow them one by one. Get each pill close to the back of your throat as you can, then swallow a large amount of water. I find that if I take a full bottle of spring water each time to swallow pills, it helps. Hope this helps! BTW-I too am new to Xeloda. I'm on my first cycle, second week. Easy stuff so far. Relax, it will be okay capinva. We are all in this together and you know the goal, to live longer with a good quality of life. Good luck!
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Hi all. I just wanted to say that I am thinking about all of you tonight.
I have nothing serious to report, just feeling like I miss manicures and pedicures right now. It is a small price to pay and I know this is a somewhat "frivolous" issue but I do miss them! I don't have enough motivation to do my own nails as often as I should and they just don't look the same when I do them.
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I have never had an "icure". Always seemed like money that could be better spent, and we never have had quite enough. But, my toenails are a mess these days. And, my feet simply look like hell. But if I have them in water too much, I pay too high a price. My kid, however, considers them to be an essential to life. I have even watched this new sweetie grand babe so she can be pampered.
This cycle, my feet haven't healed. I can not believe that I have to start my next cycle in the morning. The pills are on the dining table. I have selected my breakfast. I am ready to do this all over again. What are the options after all?
*susan*
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susan. Hoping this cycle is easier on you but tougher on cancer center cells
Last Friday I started the new dose of 2 tabs twice daily and so far no new side effects. Keeping fingers crossed. Next cycle I go to 3 tab twice daily ad originally prescribed.
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Help please. I am too lazy to scroll back and look for an answer. My mo did say mouth sores was very common with X but I don't remember reading much about them here. Do very many of you have them ? What's the secret cure ? I've tried salt water, and the salt water baking soda blend and then tried magic mouth wash with no healing in sight. Last time I had radiation the magic mouthwash worked great. The darn blisters are rubbing right where my false teeth set. My kids have never seene with my teeth out it's just embarrassing but I have had to leave the bottom plate out pretty often. Ouch. Been doing jello a lot. Looking for some help from you experienced ladies.
Thanks
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I haven't had the mouth sores with Xeloda, only with Ibrance. I would be asking for that Magic Mouthwash RX since you have tried the home remedies that are available. So sorry to hear that you are having mouth pain.
I have jaw pain with the Xgeva which is really normal as well. But that isn't your question.
*susan*
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Hi Patty
When I was on XELODA I used Biotene Alcohol free mouth wash and tooth paste. I used it three times a day seemed to help me.
Hope this helps!
Kimba
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Just wanted to share some good news! I had my first petscan since starting Xeolda in June (currently on my 4th cycle) and my doctor just called on a Sunday! with the initial read. Everything is stable! Before I started Xeolda, besides brain mets, I had an increase in the size of my breast mass, as well as a swollen lymph node, which is why I switched from Carbo/Gemzar to Xedola. The scan showed a no swollen lymph nodes, a slight decrease in the mass itself, and nothing anywhere else! Now I just need to get those pesky brain mets under control and I'll be good to go for a while!
Despite having an appointment with her tomorrow, my MO wanted me to have the good results today so I can relax tonight and go into the appointment with her knowing it is is going to be positive. She is truly a special person!
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yay Becs
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Love your news Bec. Happy Dance time. Hoping the brain mets are next to hit the road!!!
Babs
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Becs, great news!!! Yay!
Patty, mouth sores are pretty common, from what I have heard. I have more mouth rawness in mouth below lower lip as opposed to sores. I saw lysine recommended on another board. It has a role in skin health. My MO said it was okay to take it and it works wonders! I take one pill daily and boost it up to 3 pills on the 3-4 days each cycle when my mouth is more sensitive. I can't recall the exact mg right now . . . .
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Patty,
I only had mouth sores once but my doctor told me that if I ever got them again they could give me a prescription to fix it. I don't think it's uncommon. I used to get mouth sores regularly before I was on chemo and my dentist would give me Zovirax, I think. You have to take it as soon as you feel the tingling of one coming on. I have also used over-the-counter Abreva for sores on my lips but I don't think you can use that in your mouth.
Hope you get some relief.
Hugs, Susan
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Hi all! Is anyone on Xeloda plus a hormonal therapy, particularly in the US? I know Ebru is on this combo in Turkey. I read about it and there was a small study conducted showing a clinical benefit over X alone. I have been having some bone pain recently. If it turns out to be progression in bone but liver is stable, I would like to ask about adding an AI. When I progressed on hormone therapy before X, it was only in my liver, not my bones. Bones not yet resistant to hormone therapy.
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I am Xeloda along with Herceptin, a targeted therapy for Her2+, so not a hormonal. But I have both triple negative and triple positive cancers. I'm in a super rare position of having 2 primary cancers in the same breast at the same time! The triple positive is what my mets are and so far the triple negative has stayed contained within my breast.
I also just started Avastin, a chemo generally no longer prescribed for breast cancer use. I have radiation induced necrosis from gamma knife to 7 brain lesions, and apparently Avastin has shown to help with that. So in addition to the X, I'm on a targeted drug, another chemo, steroids for brain mets, and anti-seizure meds as a result of the brain mets..
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Becs, does your insurance cover Avastin? That is great you were able to obtain it. It is a shame. I knew many women that had excellent results with it before its approval for BC was yanked. They were devastated by the FDA's decision.0 -
hi Becs511. It's nice to see an updated post. I have multiple mets to bones. I am currently doing 9 rounds of intense rads because my right hip has taken a beating from those Nasty little bastards excuse my French sorry if I offended you:). I am going to start xeloda after my rads and am hoping to get a good prognosis as you did. Congratulations!! that's a big thing in the cancer world. I wish you all the best and God Bless
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Thanks Awilson. Wishing you the best of luck and health on Xeloda. It has been pretty tolerable for me. Do you know what kind of schedule you will be on? I am on a 7/7 schedule (one week on, one week off), and it seems to make the side effects easier.
JFL- Yes. I was able to get insurance to approve the cost of the Avastin. It was quite a process though and took over 2 weeks! My doctors had to fully lay out the case as to why they specifically prescribed this drug for me and why they thought it was better than other options (like Tykerb).
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hi becs511. Once I'm done with radiation( another 8 days) then I will be put on xeloda. I believe I will be 14 on 7 off. My onco wants to be aggressive at first because my markers went up to 4550 from 876. I was doing really well until I took a shot if Zolodex, that seemed to trigger the high markers. I'm hoping I'll do well on xeloda. I've had mets for 2 years and only had radiation on my spine last year. I managed with no drugs up till now but now I have no choice but to do conventional tratments. My first round of rads yesterday gave me the dry heaves and I wasn't even done the treatment😬
Hope you're having an awesome day!! Take care, chat again soon:)
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