All about Xeloda
Comments
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Saw Oncologist yesterday and mentioned I'm finally taking his advice and changing my Xeloda schedule to 7/7. He agreed that's a good idea and even spoke of the possibility of me taking a ONE MONTH chemo break if I want to.
I've been taking Xeloda for over two years and Oncologist said stopping the chemo for one month isn't a big deal in the grand scheme of things.
My choice is to try the 7/7 schedule and see if it gives me any relief from hand/foot syndrome. I'll save the possibility of taking a one month chemo break for the future. Nice to know it's okayed by the doctor.
On another note, I asked about pneumonia and shingle vaccines since there are television commercials on about those drugs all the time. I just had to ask! LOL
Oncologist said since I'm 65 years old to get the pneumonia vaccine but DO NOT get the shingles vaccine. His reasoning is because I'm on chemo. He said the shingles vaccine is a live vaccine and someone taking chemo would be open to actually developing shingles after getting the vaccine.
I'm glad I asked!
I'll head to the local Walgreen's for a pneumonia vaccination and since I've had my flu shot for 2015 I'm all set to head into winter.
Kessala
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Kessala, good luck on your new schedule, and hope the break gets rid of HFS. I didn't get the shingles vaccine, but the NP put me on big blue pills 3 times a day (IC VALACYCLOVIR HCL 1). So far the shingles pain is nothing for me compared to the pain of the blood blisters from HFS, but I know some do have very bad painful shingles cases, so maybe it's good to make sure you get treated as early as possible if it does occur (hopefully it won't, but we need to be prepared with out lowered immune systems).
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Good morning, everyone, I just took my first Xeloda dose yesterday and wanted to say hi and thank you for all the good information in this thread, so helpful! Glad to see familiar faces from some of the other drug threads here, too.
This is my first chemo since I did ACT for stage III cancer in 2012, but after a my stage iv dx and a decent 14 month run on Faslodex, my cancer kept growing on Ibrance/Letrozole and Afinitor/Aromasin, so now we're hitting it with Xeloda.
My onc is one who believes in the 7 on/7 off regime and has me in 1500 mg twice a day for the "on" weeks.
Wishing us all great success with this drug!
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Roses,
I wish you luck on the Xeloda, hope it is gentle and effective for you. If you have any issues I would let the onc know immediately so that they can adjust. I would try to keep on small meals (use a small plate), keeping something in your stomach but not too much, and just watch for signs of HFS since you need to catch it early. Best of luck!
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Roses,
I am also on the 7/7 cycle taking 3500mg for the "on" week. I have almost no HFS on this regimen. I think the 7/7 cycle is definitely manageable. Biggest issue for me is waves of nausea, that I get a few times a week. I agree with 3Holly, small meals are best. Good luck - hope Xeloda proves to be a good treatment for you!
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oh my! This is coming from a nurse practitioner who is a board certified wound specialist. The skin covering your blister is a natural band aid. It is keeping all the germs and bacteria in the world around you out of your body and blister. When you "pop" the blister you take away nature's band aid and leave it open to the big world of infectious bugs. Neosporin, an over the counter topical antibiotic, has been used so much that most bacteria just thumb their noses at it and keep on multiplying. Band aids are not completely occlusive and you have to wash etc and expose the open area to the world. Yes, it will feel better and yes, you may heal without complications but, there is a good chance your immune system is compromised and you will get an infection that maybe hard to get rid of. It's your blister and your pain only you can make the decision what to do. Your body should absorb the fluid in due time. I have treated patients with all kinds of blisters and always try to let the body take care of it first.
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Started Xeloda yesterday 2,000 mg twice daily. On 7 days off 7 days. Only problem has been waves of nausea with mild H/A.. Zofran did help with the nausea a bit. Trying to keep hydrated with up to 3 quarts of fluid a day is very taxing, esp on my bladder! I'm running to potty every hour. Going to try frequent small meals. Had stable innumerable bone mets throughout my skeleton for over a year on clinical trial drug and Exemestane but just had progression to my bone marrow. Over 40% of marrow has been replaced by sclerotic bone lesions. So, I can't make enough blood components like hemoglobin, platelets, white cells and red cells. I've required frequent transfusions of packed red cells and platelets. So.... Switched to Madame X. Thank you all for your invaluable advice on this drug. I'm sure I will need your help as I get further into treatment with this lovely lady Madame X. Hope she does the job.
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msparki,
Sorry to hear you are having nausea, sounds like you are on a big dose of the drug which is what they do at first to see what we can tolerate, but they often need to adjust the dose down to help you cope with side effects. Some seem to tolerate the drug well, not sure why it is so different for people, but I hope it works well for you.
Thank you also for your advice on the blisters - I know that with my lowered blood I have low immunity to infection and definitely want to prevent it - and now that I'm off the Xeloda the blisters are no longer painful (was terribly painful before), but the big one in the middle of my palm is frustrating since it never really shrinks noticeably. I've tried tee tree oil, and some baking soda in water (since don't have epsom salts - might get some and try that), but not much if any shrinkage.
I hope you don't have the HFS, and that your nausea goes away, I will keep you in my prayers, good luck!
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A nurse told me it would help to soak my hands and feet in cool water twice a day. Is anyone doing that? I keep meaning to try but it's just so boring to sit there soaking your hands and feet. Can't really do anything while you're soaking.
My HFS has generally been better since I switched to a 7/7 schedule from a 14/7 schedule but I developed one huge 1.5 inch crack on the heel of my right foot that is only after three weeks starting to look better. The only thing that seemed to help it was to exfoliate the area by sanding down the skin around the crack, rubbing in Uridine cream, and using those wound closing strips and an XL band-aid. Until now, I didn't want to exfoliate my feet at all while on Xeloda but I didn't know what else to do to help the crack. I have had these kind of heel cracks all my life and this kind of exfoliation was the only thing that worked. I'm using a battery-operated pedi tool called MicroPedi made by Emjoi.
Hugs, Susan
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Susan, my oncologist advised me to limit the minutes my feet are in water as much as I can. Short showers, no soaking.
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Susan, what did the nurse say the twice daily water soak was supposed to do to help? I can't imagine soaking your skin would do anything helpful regarding hand/foot syndrome.
As far as your heel crack goes, I've had those too and they're a son-of-a-gun to walk on. Every time you put your weight on your foot the crack spreads open and OUCH! Like having your foot stabbed!
My way of dealing with it is to apply liquid Super Glue (there are multiple brands - buy one with a brush applicator) to the crack, let it dry and it's like a miracle. Your weight no longer spreads the crack open and your pain is gone!
People who play sports use Super Glue to quickly close cuts to their skin. Hubby and I use it on paper cuts, split cuticles and finger cracks that plague Hubby every winter. We first read about it in Reader's Digest, an article written by a dermatologist.
Now that I've been dealing with hand/foot syndrome for years I brush Super Glue on my finger cracks and my heel cracks.
Naturally the glue wears off within a day or two. If the heel crack is still there re-apply the glue. You'll know when you don't have to put on fresh glue.
We're currently using Loctite Super Glue with a brush applicator. It's like applying nail polish.
Kessala
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Hi all, I have been on Xeloda for the last 5 months. The drop in TM CA 15-3 was first two months with 200 points each month, then next two months with 100 each month, and for the last month the drop is only with 23 points. (from 465 to 442). I feel very disapointed. Does this mean the Xeloda stops working. My markers are very reliable. I know it' hard to say what is going on, just wanted to complain.....
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lulubee, I'm not sure what the nurse thought soaking in cool water would accomplish. I was thinking that the cool water would be like cold-capping your hair. By cooling down your hands and feet, the chemo is less likely to leach out through your subaceous glands there. My Chinese medicine doctor wanted me to soak my feet in warm vinegar but I said that I couldn't do it because of my HFS.
Kessala, Thanks for your tips about using super glue. Will give it a try the next time I have a big crack. I dance and do yoga so I put a lot of pressure on my heels. I haven't found a bandage yet that will stay on through a yoga class. I've started wearing shoes to dance class so the bandages have a chance of staying on. I'm a modern dancer so I don't normally wear shoes.
Hugs, Susan
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Hi.. i wanted to ask if anyone of you had nosebleed. My mum is taking xeloda since August.. She has pleural and mediastine mets, her last scan (one month ago) showed all tumours were shrinking and TM went from 54 to 45.
Iam so afraid, 2 years and 3 days ago my aunt (mum's sister) died of metastatic IBC, i know she had liver lung brain and bone mets but in her last days she had nose bleeding. I cant imagine a life without my mum, its so hard
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Kessala, a month break would be great. Personally I would be scared. Even taking 2 weeks off makes me leery. You could start the break, and then start up again when you feel ready. Maybe 2 weeks will be enough? As for these vaccines, I've never had any of them, not even a flu shot. I got sick about a month ago for the first time in over 10 years. I'm 57. I have heard of using the super glue, just never tried it.
Holly, how is your rash? Are the pills helping?
Roses, glad you got 14 months out of Faslodex. It didn't work for me, and it was so easy and no SE's for me on that one.I'm doing the same regimen as you. The 2 weeks on, 1 week off had the HFS really hitting hard. I have done that schedule since Feb. So I hope the 1 week on/off works. I guess only my labs will tell! HFS I think is pretty much a given, just a matter of time.
Southern, you are doing 7 pills a day? That was what I was put on at the start, I couldn't do it. But it was more the second week on and the week off it still lingered.
RN, I don't think I've known anyone to take 8 pills a day, wow. I'll be curious to see how you do on that. So far I'm handling the 6 pills a day pretty good. My right hand has a couple of splits in it. Mostly its just been very dry and sort of cracked. The splits are very tiny, but darn they hurt! I have not had any nausea issues.
Susan, so sorry about that huge crack on your foot…..OUCH! And things do take so long to heal. The outsides of my feet are very dry and cracked, not open cracks tho. Prior to Madame X, my feet were pretty smooth. My cuticles are very hard and almost white looking, anyone else notice a difference in theirs?
Kiss, I would think that perhaps the TM's might "level off". Mine have continued to drop, not much, but still dropping. They were my initial indicator of my mets. However, my scans showed some slight progression. So don't go solely on your TM's.
DVDSP, my nose drips and runs and sometimes gets very dry, maybe it has bled a little. But nothing that I give any thought to. I hope your mum is around for a long time.
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Hello ladies, I have just started taking Xeloda 7 days ago. Supposed to be 14/7. Have been having light nausea, but a wicked headache. Just got a call from onc's office. He wants me to have a brain MRI tomorrow Now I am scared. Has anyone had bad headaches from Xeloda? Trying to get a handle on this whole thing.
Have read a few pages back on this thread, but with this headache it makes it somewhat difficult. So sorry if any of my questions are redundant. I hope to be here for a while, so I read as I can. It is good to see other women from other threads who I am already familiar.
Thank you, Myra
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Myra, I have not had headaches. But please try not to think the worse, until you know for sure. Maybe it's just stress.
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Hi everyone, radiation machine is broken today and yesterday, so my break from Xeloda is going to be extended. Not sure if I will continue it or what, I will have to see the oncologist and probably get scanned again after the radiation and the operation to inject cement into my spine. Blister broke and is finally healing I think, what a relief as long as I can keep it from getting infected (looks much better so hopefully it will dry up completely and be gone).
Myra, I'm sorry you are having headaches, and headaches always cause nausea, at least for me. I wonder if you are still having withdrawal from the Cimbalta, would that be causing the headaches? I hope Xeloda will be gentle and effective for you. Try not to worry, you can get through this.
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Hi Myra. I'm taking Xeloda and have never noticed headaches as a side effect. And I'm prone to headaches.
I wonder if your headaches might be connected to being dehydrated. I've noticed during my time on Xeloda how dehydrating the drug seems to be.
I notice when I do get headaches that drinking a glass or two of water (even just standing at the kitchen sink to do so) makes most of my headaches fade.
I suspect Xeloda might be drying you up and causing those headaches.
Try to drink, drink, drink water and see if that helps.
Kessala
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Hi Myra,
Welcome to the Xeloda thread, although I'm sorry that Ibrance didn't last longer for you. I agree with Kessala that this drug dehydrates us.
So sorry about your headaches. I really hope your scans show everything is fine. What dose of Xeloda are you taking? I'm wondering if it's just too strong for you. My onc lowered me from six pills a day down to four, and it has made a difference in my overall well-being, although the hands and feet are still affected.
Wishing everyone the best getting though the holidays. Happy Hanukkah to everyone for whom it applies, and Merry Christmas, too. Love all around!
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day 5 of Xeloda. Getting better. Had nasty nausea, dull achy headache, diarrhea, body aches and pains everyday but not all day. Weird. Worst is fatigue. No HFS symptoms yet. Could fall asleep mid sentence! My DH will most likely enjoy that 😉 Since he calls me Chatty Cathy. Tonight I'm feeling better than any day on the drug just dull HA and I ate w/o nausea. Bloodwork on Monday to see if I need transfusions. Hoping the s/e continue to dissipate.
Thanx for being here with your excellent advice.
Beth
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msparki,
Very sorry you are suffering so much, make sure you let your onc know about all your symptoms asap. Glad the nausea is dissipating, hopefully they should be able to control it for you by lowering the dose or a nausea med (I have compasine on hand in case of nausea, but I never seem to catch it on time to take the compasine), though I only had nausea twice on the Xeloda, so not a bad case once I went down to 3000 mg (3 pills, twice a day). All of these symptoms I'm sure are knocking you out with fatigue as well. Also watch for the HFS and let them know right away if you get it, best not to allow it to progress once it starts.
Your husband's comment made me laugh (My sister was Chatty Cathy and I was Chatty Baby for Halloween as kids - now you know how old I am!). Was also shocked yesterday when they measured me yesterday at 5-6 (was once 5-10 3/4 before spine mets). My son was all excited looking down at me thinking he was growing (plays basketball), but I had to break it to him that instead it is me shrinking!
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Hi Goldie thank you ! Onco said its normal, its only a SE, she didnt bleed anymore, TM dropped from 45 to 40, not too much but continues working!
Myra, my mum has several headaches, onco ordered a brain MRI and everything was fine. Her headches have improved with xeloda because when she was taking letrozole (8 months ago) she fell to the floor 3-4 times due to headaches, So can be possible its a side effect.
Good luck!
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Dvdsp I wish I had the same outcome as your mother. Unfortunately I had progression into my skull bones and edema. Tx options next week. Thank you for your kind response and encouragement. Myra.
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Ive been thinking Myra, you've only just started on the Xeloda. Whatever mets you have today could very well get knocked out by it, once it starts working. Also, I think there are some good radiation options. BlondeDoris had some skull mets disappear with rads. There is a good chance it's just another bone met, and no brain involvement. Look, any progression at all is cause for fear and concern. Being so close to the brain would freak me out too, but no more so than the one that was very close to my spinal cord. I guess I'm just trying to get you to see that it might just be another bone met and maybe not cause to "get your things in order". I know you will worry until you have a treatment plan. That is the nature of the beast. Wishing you an easy time of it.
Stefanie
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oh Stefanie, I can't thank you enough. Your love shines through. Myra.
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Myra, I'm sorry both for the headaches which are hard and more mets. But agreeing with Stefajoy, you only just started Xeloda so no telling what it's going to do yet, praying it does an awesome job for you (or that the next drug does, I'm not picky!).
Thanks everyone for the warm welcome! I just finished week 1 and am glad to be starting the week off. Overall it wasn't bad but I had those waves of nausea and now my hands are sore. Who goes to Walgreens at 7:00am on a Saturday to buy multiple pairs of cotton gloves? I guess that would be Xeloda patients like me. My onc Nurse Practitioner said there's about a 3 day delay between stopping Xeloda and getting it low enough in your system to do better with most of the side effects, so hopefully the hands will get better soon. And they're really not that bad, just tender and a little sore but not cracked or blistered.
For the nausea, she has me starting Prilosec to see if that helps. She told me it sometimes does the job without making you shaky or drowsy so I'm giving it a shot. Did anyone find the nausea got better as you got used to the drug or is that just the way it's going to be?
Wishing everyone good things with Xeloda!
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Hi, All,
My nausea is getting less and less (zofran did not help much). Eating small frequent meals seems to help me most. Diarrhea is so unpredictable but usually only after eating a full meal not snacks. Imodium is my new BFF. I do get some bone aches and pains that sometimes are fleeting sometimes flu like. Keeping well hydrated is really important, thanks so much for that tip, y'all. Tylenol seems to do the trick. I am on 2,000mg twice daily in hopes of stopping the progression in my bone marrow. The bone marrow mets require me to have blood and platelet transfusions so, really hoping Xeloda starts working quick, fast, and in a hurry.
Myra, I've had skull mets since my initial MBC diagnosis over a year ago. I get brain MRI or CT when I complain of neurological symptoms dizziness, odd taste, tingling, etc. if you are having anxiety about it, you should just ask for the brain scan. No reason to cause you more anxiety! I have been getting dull H/A almost daily since staring Madame X. Since its H/A without weird neuro symptoms we are waiting to look at brain until my quarterly scans are due. My brain scans have all been good, except my skull bones have scattered bone mets through the entire skull. All have been stable active but stable.
My bone mets are everywhere: sternum, ribs, vertebral column from T2 - coccyx, both humerus, both femurs, feet, entire pelvis and sacrum. Pain is very well controlled. I had rads to pelvis for pain and I use heat everywhere else with great results. Rarely need narcotic pain meds. Was stable w/o progression until the bone marrow mets. Hoping Xeloda starts to work and keeps me stable for a long time.
Almost forgot! No hand or foot symptoms! Go figure. Started my week off Xeloda. Hope it's a wonderful week.
Thanks to all for your great advice and support.
Beth
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Rnsparki,
Xeloda HFS symptoms usually start appearing between the end of the first month and the end of the second month. The byproducts of capecitabine build up very slowly and then when they reach a certain level they cause the hand foot syndrome. Therefore prevention is the key: treat your hands and feet very gently before you get HFS, and if you are bale to do that nasty effects will be limited.
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Myra, your headaches could be migraines. I was surprised when my neorologist dx'd me with this a few weeks ago. But I do get a strange feeling in my head when I take my xeloda pills. I also take another drug so who knows which drug is causing it. I take 4 xeloda pills day.
I do hope your MRI comes out clear.
As for hand and foot syndrome, I've been onxeloda for 7 cycles (4 months) and I started rubbing essential oils on my hands and use pure coconut oil. I have dryness but not blisters or cracks. My nails are tender if I press down on them.
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