All about Xeloda
Comments
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babe- I have had extensive liver mets- thats why I was put on Xeloda in the first place. Got rid of all of them. So it worked great for me. Hoping the same for you.
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Leftfoot-thanks for that info- it makes me feel so much better!!!!
Babs
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Sandilee, my ALT & AST values run a little high, too. Our livers work hard on these meds.
Hummingbird, my onc keeps me stocked in Zofran for those times when a dose makes me feel a little green around the gills. I needed it more in the early months than I do now, but I still take one now and then. You need to have something on hand, so speak up for yourself until you get it! I also keep Ginger Chews on hand.
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My liver enzymes also took a jump up when I started Xeloda. They had been trending upward since I started Afinitor, which can also be hard on the liver. But on the other hand, I was on Afinitor and now on Xeloda because the tumors in my liver haven't stopped growing, so hard to say which is causing it, or both working together. Hope things get back under control for you, Sandilee.
Susan, sorry you're having trouble with H/F already! I noticed trouble in my first cycle but didn't have blisters or sore spots until after my second "on" week. Someone months ago recommended wearing white cotton gloves to help prevent friction on your hands and I've found that helpful. I don't wear them to work, but driving and around the house. (since you're also in MA, if you're looking for them, I found them in first aid at Walgreens and in health and beauty at Stop and Shop, but not at CVS or Roche Bros at all!)
Hummingbird, good luck with your doctor and the nausea. Hope they get you some relief quickly, nausea is no fun at all and sounds like you're dealing with a really bad case of it.
Rseman, your post reminded me, I just bought 2 bottles for New Year's Eve, one sparkling cider and one sparkling white grape juice--I guess we'll do a taste test and see which is more festive! We've never been big drinkers, so we usually go with a something non-alcoholic, but never bought these 2 before. Planning a quiet night with my husband, 16 year old daughter, and her 16 year old friend, watching movies and then the TV countdown and eating chocolaty baked goods.
How is everyone else celebrating? 2015 has been a difficult cancer year for me and I'm looking forward to starting this new year!
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I am far more disturbed by Hummingbird's nausea than by my own HFS. The research nurse I met last week at Dana Farber took one look at my hands and feet and warned me to be vigilant. She was part of the Ibrance trial team and one woman developed HFS on the drug, but since there weren't others, this side effect is not in the literature. Thanks for the tips on where to find these socks/gloves. I bought one pair of each at Bed, Bath & Beyond. Clearly, I will need more so will check out my local Walgreens.
I am missing my evening cocktail and wine with dinner. Was a small luxury I allowed myself. No special plans for tonight.
*susan*
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good morning ladies. On my second cycle of 1000 mg morn and nite, 7 on, 7 off. So far so good. No S/ Es. Keeping fingers crossed. Actually like better than Ibrance. No blood count hysteria. No one mentioned anything about liver enzymes, so I am continuing on with my nightly wine, split into two parts, so I seem like I have two...LOL...We give up so much, I love my glass.
A very happy new year to all. Best for a great year. Myra.
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My liver enzymes tripled on Xeloda. I started Transmethyl or something like this (not sure about the name) and we reduced Xeloda Due to problems with the HFS) and now everything is in normapl range. My onc told me Xeloda can make such tricks.
Happy New year to everybody!
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Hi ladies, thank you for the additional info and concern. I did get in touch with my onc.'s nurse before and they are faxing in a prescription for Zofran for the nausea. I didn't take the 4 pills last night - was too sick to even think about it, and I didn't take them this morning. I'm supposed to begin after lunch today once I have the Zofran, at the same 4,000 mg per day dose. I did discuss with the nurse that possibly it's too much for me? She said to give it another try with taking the Zofran. I'm very hesitant because of the way I was yesterday and plus now the holiday. Really don't feel like being that miserable and trying to have a decent night tonight and then I'm cooking tomorrow for New Year's Day and would really love to enjoy it! My onc did say on Tuesday that it wasn't urgent that I begin Xeloda immediately because I was just on my week off from taking Ibrance. So I'll see. I'm so grateful to all of you and being able to come here with ladies who totally get what I'm saying!
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and I'd point out that my nausea got much better after the first few cycles. My body adjusted. Some days I have issues take my zofran but I hope your body adjusts as wel
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Wishing everyone a Healthy New Year with NEDS. I must say I'm having a tough day today. Very weepy. I keep wondering if this could be my last NYE. I usually am optimistic but not today! For some reason.Hoping tomorrow is better for me but it's also the day I elected to start Xeloda
Babs
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Babs, I'm wondering if you feel weepy today because here it's supposed to be a fun, celebration , happy New Years Eve, but you just had the disappointment of finding out you had progression and now also the anxiety of beginning a new drug tomorrow. Certainly understandable how you feel!! This isn't easy, that's for sure!! I'm sure most of us have that doubt and worry.
Wishing everyone a Happy and Healthier New Year!!!!
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Hummingbird
It's so important to be able to vent sometimes and I feel safe here. If I said the above to my DH he would either start to cry or argue that I'll be fine and that I shouldn't be negative!
On another note- Met a lovely young woman yesterday at MSKCC with an overbearing husband so gave her this site- thought it might help her! She had never heard of it! We need for more people to know about this!
Babs
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Babs6287,
My wife who is a family therapist, tells me it's very important to go through various phases in dealing with grief: denial, anger, depression and acceptance. Therefore, even though I deal with cancer not in the first person, my two cents are that you are doing the right thing.
PS: I had to chuckle at the overbearing husband, because my wife says I'm a helicopter husband.
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gciriani- She may say that, but my bet is that she knows she's a lucky lady to have you by her side.
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Hi everyone! I'm getting myself geared up for going on Xeloda early in the New Year. I had mets in my liver and pleural area but these disappeared after FEC/T chemo earlier last year. I had two clear scans but my last scan in October showed two new suspicious areas in my liver. As these were not clearly identified as cancerous spots on the CT scan, I was advised to wait until the next scan to see whether these are indeed further areas of metastasis. If they are, I may go on Xeloda. What I was wondering, do you go on Xeloda for a set period or do you need to take it cycle after cycle until it stops working? I seem to have read lots about people permanently on Xeloda. I like to be prepared for things where I can so feedback from others who have been on it would be really useful.
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Hi Lovetosing, welcome!
With my onc and I think many others, the plan is to keep on Xeloda until it stops working. I had just assumed it was like that for everyone, but I was just this evening searching some older threads about Xeloda on these boards and saw that there are some others with stage IV who were taken off Xeloda after a good response and it can be restarted if needed, So I guess the answer is it could go either way. I think staying on it is more common though.
Wishing you good luck and a nice run on Xeloda if that's where you end up!
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I have been on Xeloda for just over 2 years now. The hand and foot syndrome is my only problem. I got an RX for the cream used for burns. It is very moisturizing. Last pet scan showed more mets. I guess the Xeloda has stopped working. Going back next week for more blood work and to decide what to do next. Dr mentioned Ibrance. Its used with femara, and femara didnt work for me. Scared to start ibrance. The xeloda shrunk everything in me. My liver mets vanished, and the mets in my bones shrunk alot! I will have alot of xeloda left over (months of it) if they take me off it.
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beth,
Ibrance can also be paired with Faslodex in place of the femara. I took the Ibrance for five months with the femara, simply because I had just finished with Faslodex which kept me NED for five years. Sadly, Ibrance failed me, so here I am taking Xeloda.
*susan*
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Beth,
2 years on Xeloda sounds great to me. I was about 8 mos on Ibrance/Femara and less than 3 mos on GDC 0810. I hope you have a long stay with Ibrance!
Babs
PS I just finished day one of my first day on Xeloda!
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My onc says I will stay on X for as long as it works. It's been over two years now and I'm hoping for many more.
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3 years stunning for me
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Kiss, I hope your labs turn out ok.
Macy, sorry you might be giving up your pedicures. H/F issues I think almost inevitable. Where in MI are you? I'm originally from there. Grew up in St. Clair Shores and Sterling Hgts. Raised my family in a little town between Flint and Lapeer.
Roses, I think the 7/7 schedule is maybe something new? And maybe used for those who have a hard time with 2 weeks on, 1 week off. I know after many months, the 2 weeks on was wreaking havoc on my hands. My onc pretty much lets me decide what I want to do, within reason. Which is why I wanted to try 7/7 schedule, but he wanted me to increase my dose.
rnsparki, I'm so sorry you have has such a hard time and needing all of the infusions. That has to be so scary. 3 rd cycle and nothing too bad? I'm impressed. I couldn't handle 7 pills. The cramping and explosive D was too much.
Susan, I didn't know H/F was a SE of Ibrance too. That will be my next drug, when X fails me.
Hummingbird, so sorry you had such a time, and with the first dose. I think a reduction is what is needed. I think I would do that instead of skipping the dose completely. My worst SE were in the 2nd week and my week off!
Babs, I hope your weepy's are gone. But heck, we are entitled. I think I had them for
months. Finally I decided, I can't live my life, what I have left, like that. And you are right, no one gets it like we do. I would be lost without my friends here. My husband doesn't talk about it all, acts as though it doesn't exist.
Lovetosing, I was told I would be on it until it quit working.
Beth, I hope Ibrance is good to you. Maybe after a spell on it, you can try X again?
I've been on 7/7 for 3 cycles now. I am currently at the end of my week off and this morning having cramping and D. I think what bothers me the most is the fact that we have to be in treatment until the end. And the other thing for me, other than the SE's I feel great! I am not in any pain what so ever, never have been. Well, wishing us all a long run with Madame X! Happy New Year!
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My weepies are over. I'm now in my lets kick this cancers ass mode. Hearing of 2 or more years on X gives me much more hope! I am nervous about telling my DD later today about my progression later today. She's been away on holiday and I've been avoiding her questions about my tests.
FYI My MO at MSKCC started me on 7 days on 7 days off. Maybe that's the new protocol? When I was on Ibrance I stayed on 125 the whole time since my blood work was good and I had manageable SEs
Hoping for a long run on X for all of us!
Babs
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Babs,
Dr. Christina at Dana Farber had some interesting things to say about Xeloda's dosing schedule. In her opinion, Xeloda has been tested with multiple doses and schedules. She considers this to be one of the great advantages of Xeloda over the infusion chemos. She feels that this gives her the leeway to modify both doses and schedules knowing that the outcomes can still be positive. She has already said that though she has started me on a very standard dose/schedule, she will feel comfortable modifying it once I am stable. Optimistic, eh?
Telling our kids is hard. I delayed telling mine until last week when her term was done. There was no way I wanted her to slump at the end of a term just as papers and exams were due. It is so important to me that she excel in this doctoral program. It is the lynchpin for her future and the source of a tremendous amount of her debt. I think, in her heart, she knew that the results of the Thanksgiving scans were not good since for the first time she didn't ask. She is a smart kid!
*susan*
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Susan
You're so right about our kids. My dtr asked me a few questions when we msged each other and I answered all but 1. I'm sure she knows as well! We raised our kids smart!!!!!
Babs
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Thanks for all your help in answering my question. Grateful to have such a good drug at my disposal but it looks like I need to pack in all my manicures, pedicures and swimming sessions in while I can before I get put on the Xeloda! Wouldn't manage any of that tonight, though - absolutely knackered! Hope you all continue to keep well - I have my teary days too!
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Happy New Year, Xeloda Ladies. This thread is growing and growing. Welcome to all. Hope we all find NED in 2016!
Myra, been thinking about you. Hope you are doing better. My meninges (the dura lining) is slightly swollen too. But my skull mets are still basically the same and not requiring rads yet. The meninges swelling is being watched more closely.When I told ONC of dull H/A that I attributed to Xeloda (which does have H/A as s/e) they convinced me to get that MRI. Apparently menginges swelling is not uncommon with diffuse & longstanding skull and vertebral mets pressing on the meninges which is the lining of the skull and vetebral column. I went to my NP text and the dura mater is the innermost of the three layers of the meninges. They think my H/A are a combo of the mets, Xeloda, and stress. Works for me. Only now I'll need to have my head examined as part of my quarterly scans. Bone scan, CT scan that will now include my head. And, possibly MRI of head. I really glow in the dark.
gciriani - I asked my onc about my high dose. I'm 5'2" 135 lbs. I'm on 2,000 mg twice daily (tot 4,000mg)7 days on and 7 days off. Reason: I needed something that would help my pancytopenia quickly and not lower my CBC too much. So, all the other choices (Ibrance, Taxol, other chemo poison) would take too long to work on my bone marrow or they would lower my CBC #'s too much. I'm a conundrum because of the extensive bone marrow failure to produce components of blood. I'm getting a lot of transfusions of packed red cells to keep my hemoglobin at or above 8. Also, I LOL about you being helicoptor husband. My husband is now known as Helo Hubby.
Goldie: see above for why I'm on 8 pills (500mg each) a day. yuck.
Susan- I thought i was a pro at swallowing pills until I met Madame X. I started my 3rd cycle today and was able to take 2 pills at a time with 8 ou of water for the first time without gagging. I'm feeling like I have made my first big accomplishment of 2016.
Hummingbird - So sorry about your nausea. Nothing worse than that horrendous feeling. I have Zofran, lots of zofran. I started out thinking i would be tough and not need it. I was wrong. I take it 30 min. before each dose esp since it is a 2,000mg dose! I also found that during the day the zofran seems to stop working so I always have some saltines and ginger ale at the ready. I try to never have an empty stomach. This even happens during my 7 days off.
lulu - need to publish your list it is all encompassing, you are the bomb. From my first time on this thread i heeded everyone's advice and started pampering my hands and feet. I have aquaphor, nivea, esssential oils, coconut oil, O'Keefe's working hands, you name I have it. So far, I have only had redness and burning on the pads of my fingers and toes, with some difficulty slicing and dicing while preparing meals. I always wear sensible shoes, love my UGGS, diabetic cotton socks with no seams(wear at night with foot goo), white cotton gloves to wear at night with my hand goop. I am a nurse practitioner and I wash my hands at least 30 + times per day (most days more) and also use alcohol hand sanitizer! If I get HFS don't know what we'll do esp if my next scans and CBC show Xeloda is working! My ONC is trying to get me to either go on extended medical leave or push up my retirement. I'm almost 64. I'm deliberating.
Hope all have a wonderful start to 2016 and we stay pain free or at least as close to pain free and side effect free as is possible. Added new avatar with new mbcn T SHIRT SCAN-TREAT-REPEAT #stageIVneedsmore
rnsparki aka Beth
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Hi everyone! just wishing you all good luck and NED for 2016!
My mum last scan (12/29/2015) showed any change in all pleural mets but a bit shrinking of the mediastine adenopathy.
CEA dropped from 45 to 25.
Her liver enzymes are high so she is in a break off until 2/5/2016
David
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2 pills at once???? Are you kidding me? I can't manage more than one at a time. Takes a full 16oz glass of water to get all three down. On the other hand, "they" say drink lots of water on this drug, and this is a start. :-)
*susan*
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rnsparki, love your new avatar! Thanks for the info on how you have been dealing with nausea. I have the Zofran, and I'm really hoping it works. goldie, and all - thanks for your good wishes.
So I was going to begin again with Xeloda this morning after my bad day with it on Wednesday. Well - I wound up in the emergency room at my local hospital all night last night! Have lived in this town for many years, and never went to the ER for myself. I thought I had a kidney stone, so did the ER dr. Well, they did a CT scan and no stone, no gallbladder issues, no appendicitis, but I do have fluid around my pancreas and so had blood work for pancreatitis - negative. They gave me a painkiller and home I came not having any idea what that severe pain was that lasted on and off for many hours. Then by late morning today, it was gone!
So I am going to finally pick up again with my pills tomorrow morning and call my oncologist on Monday just to tell her what happened. I'm thinking of taking only 2 pills instead of the 4 in the morning to see how I do on only 2 and then 2 at night if I am ok.
I'm learning a lot from all of your posts and love to see that Xeloda has worked fine for some for a while!
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