All about Xeloda
Comments
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Sandilee- thanks for saying how the week off canbe harder. I thought I was crazy. Yesterday my first day off I was the most nauseous of all days. I thought it might be because I have a terrible cold or a build up from the week! Must be the build up or the seeping out!
Babs
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Hi ladies,
I am new to this thread and wow, there is some good info here that I'm trying to read through. I should be starting xeloda within the next week. I'm a bit nervous about the side effects but hoping it is effective in controlling my bone and lymph node metastases. Will check in with you for suggestions once I get things under way and can see how my body reacts. For now, wishing you all a wonderful weekend!
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Purplegirl,
I start my second cycle Monday and so far SE have been manageable and no worsening during week off. Hoping the same for you. Enjoy your weekend.
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Welcome, purplegirl, hope Xeloda does wonders for you! I've just finished my 3rd "on" week and so far the side effects haven't been bad, at least now with the things my doctor and NP have recommended. Hope it's the same for you.
I wanted to mention something about the hand foot syndrome my onc told me at my last appointment. She recommended using a 20% urea cream on my hands and feet. I've been doing that since Monday and I can honestly say my hands which were very sore and red with a couple little splits at the thumb joint are much, much better now than they were before that or at the same point in the previous Xeloda cycles and my feet (which weren't as bad) are better too.
I know there's been a lot of talk on this thread about different creams and there are lots of preferences and some strong opinions, but I wanted to throw that out there since it has been good for me.
My onc suggested the Udderly Smooth Extra Care 20, but the 20% Urea was the recommendation not so much the other ingredients in the cream. As it happened, my brother had given me some Udderly Smooth stuff at Christmas and when I looked the 20% urea one was one of them (the brand has some without urea and some with 10% and they all look pretty much the same until you look closely) so I already had it on hand to try. I don't see it in local stores and I bought some Excipial 20% Urea cream at the drugstore to keep in my purse and desk and that seems fine, too. I also ordered more of the Udderly Smooth online.
Hope that helps someone!
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Roses Toses-thanks for the suggestion. I bought the plain utterly cream and think I need to step it up!
Babs
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I had to switch insurance carriers for 2016, and the new one (Cigna) is telling me that the patient assistance program for Xeloda has been dropped. I've been getting it with zero copay through BCBS for the last two years. I am holding my breath till Cigna tells me the amount my monthly co-pay is going to be. This new insurance policy costs a lot more per month than the prior policy, so I'm hoping and praying the new price tag for Xeloda won't break the bank.
Can we compare notes on this? How much is your copay for Xeloda?
And is there a generic out now? I wondered if that is why the manufacturer dropped their assistance program.
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I'm getting the generic capecitabine since that's what my insurance will pay for. Co-pay is $10. Hope you can work out the finances. Insurance is a pain
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I'm going off X for a month or so because I need to have a hysterectomy (DES girl here with thickened uterine lining, so being careful). I was in the middle of my fifth cycle with no side effects, probably due to a low dosage of 2000 mg a day, 14 on, 7 off. I'll be back on X after the surgeon clears me. Assuming my Pet/CT scan is looking good.
I just had a bone scan which showed more bone improvement (last two scans show improvement). That's due no doubt to Xgeva shots every month. Have to give credit. So, I'm very happy with that.
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Lulubee, there has been a generic form of Xeloda on the market for a while now.
My health insurance requires I purchase my generic Xeloda through their mail order pharmacy.
The mail order pharm (Express Scripts) hooked me up with a copay program called Patient Advocate Foundation. I was interviewed over the phone by a PAF worker and was qualified for a grant right then and there. PAF is paying my copay for generic Xeloda for an entire year.
You can Google Patient Advocate Foundation and apply for a grant. PAF can take your application online, through snail mail or over the phone. They'll want to know your social security number, your annual income, etc. You will get an immediate yes or no response. You can read on their website what diseases they cover and what medications they'll help with.
Without the help from PAF my copay for generic Xeloda would be $250.00 for 42 days worth of medication.
Kessala
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I am doing well with Bag Balm from Vermont to help with HFS. Why bag balm? Because Costco ordered it and it is $5 a container. Retail price is about $12. So far, when I bother to use it, it helps tremendously. My hands are starting to get tender now, so I will have to start adding my hands, along with my feet to the routine. My feet took a beating today walking around a museum with my visiting French cousin. My socks kept "slumping" so I was walking on layers and ridges. I do not suggest this.
My co-pay for Xeloda [generic] is $0 since Massachusetts has a parity law, and I purchase my own insurance.
*susan*
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Great ideas for the different creams. I was wondering about the copay too. I also have to obtain through my health insurer's mail order pharmacy. I am waiting on the first shipment and they have yet to tell me what I will owe.
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Lulubee,
My wife started with Xeloda and after a few months was switched to the generic capecitabine by Mylan. Both were shipped and managed by the same drug-by-mail order company Express Script. Deductibles or copays have nothing to do with the drug provider, and are entirely dependent on your plan. In our case for instance, after meeting $200 of drug deductibles in January, the rest of the year the drug cost zero to us.
The cost paid by the health insurance company to the drug provider (allowable cost) is in proportion to the dosage. For two cycles of 7 days on 7 days off, 4 pills a day (2000 mg/day, 56 pills) the cost of Xeloda was about $2,300; Mylan was about 30% less expensive, that is it cost about $1,600. When dosage was increased to 6 pills a day (3,000 mg/day), cost of Mylan went up from $1,600 (for 56 tablets) to $2,400 (for 84 tablets).
Thus the cost of Xeloda is about $41 per tablet, and the cost of Mylan is about $29 per tablet. I hope this helps.
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Thanks for that info, gciriani.
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Winningsofar, good luck with your surgery!
And lulubee, my Xeloda is generic, too. My copay is $0 and the cost of 84 pills (500mg) is $2806.22 ($33 each). We're in Massachusetts like Susan so oral chemo is paid at the same rate as IV chemo and coordinated with our medical plan and drug plan, but provider would matter in a sense if it was on our drug plan because for nongeneric drugs the copay is a percentage of the total cost so the slight differences in cost from one pharmacy to the next would mean a difference in our 20% copay, too.
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Sandi, I'm with you on the fact that the week off is not a piece of cake. For me, it gets better about half way through the week and half way through the first part of the week on.
Hi Purple. Wishing you much success with Madame X.
Roses, can you share the website that you purchased the cream?
Lulu, we have a deductable that we have to meet, then 100% coverage on our meds. But the deductable is $15,000.00. My cost is around $2000.00 for 2 weeks of pills. Is this ridiculous or what?
WSF, great news on the bone improvement. Good luck with your surgery.
Susan, I can totally relate with walking on socks bunched up. Just walking for a period of time is bothersome.
I'm having a GREAT week, my husband surprised me by flying my daughter from Virgin Islands (she lives on St. John's) to Arizona for a surprise visit. I haven't seen her in almost 2 years! So so happy!
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Goldie, that is just wonderful!!!!!!! What a nice surprise!! Lovely pic - you are both beautiful!
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Goldie,
Thank you for sharing that picture! What a great surprise from your husband. Very special.
*susan*
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Goldie-what a special treat. That was so terrific of your husband!!! Enjoy every minute with her!!!!
Babs
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Goldie,
Great pic and what a great husband!0 -
Goldie, what a lovely surprise! You and your daughter are both beautiful.
Are you saying you spend $2000 out-of-pocket per month for your Xeloda? Heavens to Betsy, that is horrific. We are paying $2400 per month for health insurance this year, an all-time high, so I sure as heck hope my co-pay turns out to be doable under this new policy. Should hear back from them this week. Your 2K price tag makes me nervous!
I was just thinking last night how doubly unfair it seems for all of us to get taxed to high heaven on income we will never see since it's going straight to the cancer bucket. Maybe I need to watch some funny movies and stop thinking so much. Ha.
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Goldie, have a wonderful visit with your daughter! You are both lovely!
I bought the Udderly Smooth from Amazon.com here but it's also available from different online drugstores if you have a preference. Good luck with it, hope it helps!
This whole insurance mess is a big reason why my husband will never retire and lose the union insurance he has. I hate that, but understand that economically it's just not feasible. Stupid cancer.
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Thanks girls, we are having a wonderful time together. I miss and love her so very much! It was my brother thaturged my daughter to come and visit before I get too sick. I don't feel that coming anytime soon, but who knows what will happen 6 months from now.
Lulu, I have to pay until we reach our deductable of $15,000. The Xgeva shot is about the same price, but that is every 6 weeks.
Roses, thank you for the link. My hands get so sore, it seems nothing helps much anymore. They feel burnt and tender. I do get disability and I think in about 6 months I'm eligible for Medicare or Medicade, not sure of the difference. But one of them.
Stupid Cancer….indeed! Heading into my 2nd week of 6 pills daily. Will be done on Sunday, doing relatively ok.
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Hi ladies, So - after a very brief time with Xeloda, I have moved on to IV chemo - Taxol. Had my first infusion yesterday. I've had a rough week and a half with belly mets causing severe pain, swelling, and bowel problems. Hopefully Taxol will be a better fit for me and it is easier on the gut - as my onc explained. Keeping my fingers crissed!
Thanks for all the info, advice, and support here. You helped me get through some tough days. Wishing you all the best and a long success on X.
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Hummingbird, I'm sorry Xeloda wasn't the one for you. I guess most of us at this point have been there, where a drug that easy and wonderful for some people is just horrible for you. Wishing you a much easier and very successful time on Taxol!
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Hummingbird, I'm so very sorry Madame X didn't work for you. But IV Taxol? My onc told me there were IV chemos available that weren't as bad as the ones we do upon initial diagnosis. I think I would rather do X than Taxol. Meaning not being sick and losing hair. Will you have to have a port put in? Please let us know how you are doing and good luck to you on the new treatment. As someone said earlier "STUPID CANCER".
I'm into my 2nd week of 6 pills, day 10. Starting to cramp and get the dreaded D. You almost can't even call it D as it's more like water!
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Hummingbird,
It does seem that Xeloda was never going to be your answer. You were awfully strong to keep trying. I hope that Taxol is gentler on your system, and does its job well. According to my oncologist, textbook response for me would have been the Taxol. She called it effective and reliable. In fact, she considers it more effective than Xeloda, and it can be for you as well. Take care, and I hope your gastric/digestive track issues fade quickly.
*susan*
p.s. Goldie, If I had chosen Taxol for this protocol, I would have actually received Paclitaxel. For weekly IV, they give a lower dose specifically designed for us "lifers." It isn't the same as the early stage "hit is hard" protocol.
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Roses, Goldie, Susan, thank you. As Susan explained, the Taxol is given 3 weeks on and 1 off and at a lowered dose than for early stage - although my onc said she's giving me enough to get the job done! It's critical that the lobular cancer that has infiltrated my abdominal wall gets knocked back because it looks like The cancer has made a "kink(s)" that is causing stool to be blocked and all backed up. That's the cause of my vey swollen, painful belly. Wasn't the Xeloda. But X is harder on the gut and I was having an abnormal response to it. I was crazy sick from it while I was trying so hard for it to work. I really wanted it to. So far, so good with yesterday's Taxol. I hope this is the one for me! Thank you all again. Best wishes!0
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Hummingbird, is there hair loss with the lower dose? I dread going on weekly IV as the cancer center I go to is 4 hours away. I do hope it helps you and fixes your tummy problems. No longer "stupid" cancer....damned cancer!
My cramps and D are not fun, so I am skipping my morning dose. It can't hurt....right?
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Goldie,
All of the taxols have the loss of hair as a side effect. I gather that some don't always mean loss of eyelashes, but that, along with my ear and nose hair, are the ones I dread the most. Those hairs have a functional purpose! Without ear hairs, the world is a very loud place!
*susan*
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