All about Xeloda
Comments
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Mel so sorry about the heartburn...not fun at all.
Turns out that 4th tumor was there back in Oct at time of cryo..but was 0.6 cm now 1.0 so the question still remains did it grow before the Xeloda during the 2 months I was off all meds...or after the Xeloda??
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Lee - My wife Liz has had TERRIBLE heartburn from time to time. She is on 3300mg daily, 14/7. We've tried to attribute it to diet but it's so inconsistent that it's difficult to attribute it to any one thing in her diet. Her HFS is very good. Liz's standard procedure is to take a shot of aloe vera juice.
Liz's stage IV journey started with a lesion on her head in Nov 2018. After the initial excision and biopsy of the lesion, it has never really healed over. She is currently doing radiation planning with treatments starting in a few weeks. She isn't looking forward to having a permanent bald spot... I tell her she has a beautiful shaped skull and it will be okay.
Maybe it's time for me to shave my head.Grant.
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Mel-thanks. Have you tried Aquaphor? It works a lot better for my than Udderly Smooth. Can you get your dosage lowered?
I have also found that OTC Emetrol is good for nausea.
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Thanks for the replies!
I had a good appt. with MO and the Onco Pharmacist
We are holding off X (1300x2) for a week or two to let the hands/feet resolve and then lower the dose. Also, started a med for neuropathy for hands/feet.
Pharm. said to take Pepcid (Tums is also OK) for the heartburn and it's actually helped the heartburn pretty quick. I also have Zofran which works well for nausea.
Another issue I have is severe dry mouth. No matter what or how much I put on my lips they get dry while sleeping, stick and create raw patches. Still trying to an answer to that because it makes SO hard to eat or drink.
Lee
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Yes Denny I called them today and we lowered it back down to 3 pills in morningand 3 at night.
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Mel-- YAY!
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Hello, how are you feeling now? Did your doctors give you some treatment for hand foot syndrome? I would like to know more about how you manage hand foot syndrome..thanks a lot!!
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Angelique I am now using "Working Hands" by O'Keeffe...its AMAZING!!!
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How much do they lower the dose to ease symptoms?0
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Hi Leee,
Typically the dose is reduced to 75 %, and if that is not sufficient or the SEs are more severe to 50 %.
Best wishes,
Meja
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I started at 2,000 a day at 2 weeks on and one week off. I was lowered to 2,000 a day at one week on and one week off.
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Omg. My feet look sunburned and my hands are so painful. Especially my thumbs. I am using aloe, udder cream, corn husk hand treatment, emu oil, goldbond healing hands, ice. Nothing is helping my hands. Of course I stupidly had been cleaning with hot water this past week. No more if that. I bought gloves for that now. Im going to try the hospital glove idea tonight. I honestly forgot about it till now.
How is everyone doing? I hope well. Healing hugs to al
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It's been 3 months since Madame X and I broke up. My feet are still not back to normal. Not nearly as bad, but geeze. I'd say 85%-90% healed. Waiting for my big toenails to grow out, hoping even that they will!
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Mac - Please remind me again what dosage and schedule you are on. My HFS sounds like it was much less severe, but my MO switched me to a one week on one week off and kept my dosage at 3000 mg a day. I am in my second cycle of taking pills on this new schedule, and so far, so good. The second week was always hardest for me when I was on a two weeks on one week off schedule.
I do hope your symptoms ease up and that you find something to help you! Be sure to let your Mo know that you are having problems.
Katty
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Mel-Aquaphor! My hands have been bad and I am only on 2,000 a day. I have been using Aquaphor even through the day...a thin coating.
It sinks in rapidly.
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Are there any studies comparing the effectiveness of oral (Xeloda) vs. IV capecitabine for MBC?
I recall reading a study concluding that oral capecitabine lead to higher PFS, but I can't find it now. I would appreciate any leads if anyone happens to have them.0 -
Does anyone have feet and hands that burn so much in the morning, then it gets better as the day goes on? I was wondering if our walking and using our hands, helps to circulate the stuff away from hands and feet????
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Denny, my feet in general aren't very bad since does reduction to 2000mg, 7/7. However, my hands are bad, and they get worse as the day goes on. They typically start really hurting in the late afternoon.
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Hmmm...so much for my theory. I asked my nurse daughter and she agreed that circulation would help. Maybe you do much with your hands through the day?
I have problems when I walk too much or use my hands too much.
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In a perhaps misguided attempt to live normally and not let this sucker affect me anymore than necessary, I have continued with "normal" activities. I don't make accommodations except that I wear gloves when I have to handle lines on the boat, certainly gloves when gardening, and in the late afternoons, I often have to put on my nitrile gloves after using Aquaphor on my hands. By the way, when preparing to go through multiple locks on the boat (Wisconsin to VA boat trip), and knowing that I would be handling fenders and lines every day, I found and bought some inexpensive gloves from Amazon. They're thin, flexible, and protective. I continue to use them often while off of the boat. They're terrific and inexpensive.
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Folks, I have a new plan, and so far (one day), it's working. As a result of the "novel coronavirus", we're told to wash our hands constantly for 20 seconds, etc. That was killing my hands, with the HNF business. SO...I put some Aquaphor on my hands and put on my Costco nitrile gloves yesterday and wore them all day, washing frequently, with the gloves on, as directed. Though they began to poop out toward the end of the day from all of the washing activity, that process both allowed me to wash my hands frequently as directed AND kept my hands feeling good, or reasonably so, all day. I just replaced the gloves when they started to fail (hole at end of thumb, in this case).
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Great idea, thanks!
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I wear my food service gloves when I do anything with food to avoid washing my hands so often.
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Greetings to you all on the Xeloda thread. I will be joining you. Some of you may know my history: stage iv bone mets in 2011, did chemo, lumpectomy, rads then on to Arimidex until just last year, March 2019.
I feel like this past year has been wasted as I was switched to aromasin/Ibrance combo and when that showed additional progression, I went on Verzenio. Side effects of V were horrible so I stopped just before getting scans last week and the scans showed more progression. I am not fond of the CDKs.
So nothing has worked for me in a year and the bone metastases are more widespread.
I had my onc appt today and she is setting me up with Xeloda. I believe it’s the 3000 mg, three pills in the am, three in the pm, one week on, one week off. She downplayed the hand and foot syndrome but I’ve read the past couple of pages of this thread and see it’s something to be reckoned with!
I’ll be leaning on ya’ll for advice as I begin this next treatment.
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Welcome Divine! I am only on 2,000 a day, and dealing with sore hands and feet at times. But I am an 18 year survivor of Stage 4 MBC de novo. Xeloda with Herceptin has kept me in NED for over 2 years now....pretty darned good.
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Wlcome Mrs. M,
I just started xeloda in November and had great news on my first scan. I believe my second scan will be coming up before the end of this month so I'm keeping my fingers and toes crossed.
I am on the same dosage and schedule as you although I started out with two weeks on and one week off. This schedule does seem to be working better for me in terms of side effects none of which had been severe before, but the second week was always harder when things cranked up.
As far as HFS goes, I've been lucky. I will get a flare-up for a couple of days towards the end of my first week on the pills, then symptoms quickly die down when I'm in my recovery week.
I hope you have the same success that some of us have had on xeloda; it sounds like you've had a rough year, but you will find tons of advice experiences and tips on this thread as did I!
Katty
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Denny, I well remember your wonderful story of longevity in living with this disease. We all dream of having effective treatment for that long! You are truly an inspiration! Your length of years with mbc offer so much hope! It is good to know Xeloda is going well for you.
Katty, thank you for sharing your good results with Xeloda so far, and I wish for many years that this treatment remains effective for you, too!
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I am starting Xeloda tonight also after spending a very scary 3 days in the hospital with a MAHA reaction. You hemolyze your red cells and platelets suddenly and my hemoglobin went from 11.6 to 6.3 and platelets 219 to 63. It might have been started by a flu virus or my cancer just woke up and got really aggressive- I think the flu maybe started it. My MO is out of town, but, her colleagues stepped in. Because of my weight loss and some loss of kidney function, I will be starting on 2 pills in the morning and 3 at night 14 days on, 7 days off. . They also downplayed the Hf syndrome
I will have to read up on this now.
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Thanks Divine!
Good luck nkb-you sure have gone through a lot recently.
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My copay on Medicare for the Xeloda is $490. Does that sound about right to any of you who go through Medicare to get your meds? I am required to be on a Medicare Advantage Plan because I am under age 65, so my prescription coverage is included in the plan. (Wait, that high of a copay is considered coverage?) The price I pay to stay alive.
Our income from last year disqualifies me for any copay assistance. Income was high last year because dh was forced into early retirement by his company and part of the deal included several months extra severance pay. This year's income will put me below the income limits so next year I will qualify for some assistance.
My Xeloda is to arrive by the end of the week. I plan to begin it on Monday. I will be one week on, one week off, and Monday seems like the easiest day to remember to stop and start. I'm actually kind of excited to begin, hoping the Xeloda kow-pows the bone mets back into submission.
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