All about Xeloda
Comments
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Giovanni: I ordered the uridine. it should be here next week. I'll have to find the lotion next.
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MSCal02,
Congrats on your decreasing TM!
Any good lotion will work as the base for uridine; we use Cetaphil.
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Thanks Giovanni . How are you doing Susan ?
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My tumour markers have finally dropped! By 100 points
I was going to have scans, but they'll put them off for a while.
I hope everyone else is going well
kt
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Good news kt !
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Hi Xeloda Divas
I was diagnosed a year ago at S IV had chemo, after chemo went on 2 hormonals that failed, Femara didn't even try, I just went through 3 months of extreme pain and it didn't kill anything lol. Dr putting me on Xeloda 7/7 starting this week. I have been reading this thread from page 1since Friday so when I went into my Dr today I had all the info.
Just wanted to introduce myself and I will be following the thread everyday to learn more about everyone's experience on Vit X
Margie
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Sorry it took me so long to respond! Maureen and Rene, thanks so much for your concern. The e-mails telling me one of my Favorite Topics has been updated sometimes come and sometimes don't so sometimes I miss things for days.
After one day sleeping and two days sitting up in bed but not leaving the house, I finally felt well enough to go out. No fever, a slight cough only the first day, but serious fatigue. A few of my friends have had the same exact thing so I think it was some kind of virus. The big downside was that being sick really put a dent in my neutrophil and WBC numbers. Had blood work done Tuesday and Wednesday last week and my immunity numbers were so low my Onc said I couldn't get back on Xeloda until the numbers came up. Went to see my Chinese medicine doctor on Thursday. Redid blood work on Friday and my numbers increased dramatically! WBC went from 1.0 to 4.0 and Neutrophils went from 0.75 (neutropenia) to 2.0. Both back to normal range. Carcinoembryonic Antigen level also down to 3.8 where normal is
.8. This guy is amazing. Such dramatic results in one day! So I was able to get back on Xeloda as scheduled this morning! Feeling great. Skiing in Salt Lake City this week with family and friends. Hugs to all, Susan
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Good morning,,,,,I am waiting to hear from my pharmacy as to when they will be shipping my Xeloda. So, I haven't started it yet. The nurse navigator from my oncologist's office called and told me to expect a call from the pharmacy and then call her and we will get started. I asked her if I could wait for a week or so, as my DIL is having a 60th surprise birthday party for my son on March 7, and it is at a favorite restaurant of ours. So, I sure want to be able to enjoy a nice dinner with the family.
I had an appointment with my orthopedic doctor on Monday and he was in agreement with what the oncologist wants to do. Since there were a couple small lesions on my spine, he did take a couple just simple back x-rays and he didn't think it was too bad. However, he wants me to have an MRI and see the neurosurgeon who was involved with the CyberKnife treatments I had a year ago. I also had developed a compression fracture in the area where I previously had a spinal tumor and he said that has healed up. So, that is one good thing.
I will have the MRI next Monday and see the neruo on the following Monday. So, after that I will probably be able to start the Xeloda.
I have been going back to read up on everybody's comments. I am not sure that is a good idea or not. Although it seems the success rate of the Xeolda is good, it is still scary to read about all the s/e. Sometimes it just gets a bit overwhelming and I have to back off. Does anybody else sometimes feel that way?
Back on July 22, 2014, Lulubee wrote a very, very encouraging message. It is on Page 130. I looked her up and see where the last time she posted was on 12/3/14. I am wondering if any of you keep in touch with her and have heard from her. I would like to hear how she is doing now and if she has any added information to show. I saved her comments and have printed them out to read when I feel discouraged. It was very encouraging and does help with the scary feeling. I am hoping that she has just gotten busy and forgets to come in her.
Joy
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Joy78,
Thank you for mentioning Lulubee; it's good to read her story. I think the fact that hasn't chimed in since is a good sign. I had to look up NED (No Evidence of Disease) because I didn't know what it meant. I haven't found the post of her from 12/3/14.
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I have been on Xeloda for almost a year. I started with 1000 mg twice a day with a week on/week off schedule. After two months one upped my dose to 1500mg twice a day. I've been on that dosage ever since. The first few months I had some SEs, mostly nerve pain in my feet, nausea and some bowel issues. Oh and major fatigue. But now I only have occasional SEs and they are mild. My liver progression has been resolved for now and I will remain on this dosage for a while. In reading through the posts, it seems that those of you who have severe SEs are on a 14/7 cycle. I wonder if switching to a 7/7 cycle would be beneficial? Especially if you've had good results so far.
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Ive had really good results with xeloda but the 14 day on and 7 day off was just too much for me. I start the 7/7 schedule tomorrow so hoping for better control of se and same response. I go for a scan end of March so hopefully things are going well. My TM went from 100 to 68 in two months. I'd say that's a good sign as my markers have been dead right since original diagnosis in2010.
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Just wanted to chime in with Xeloda fan-girl appreciation: I started last summer, after my TMs were rising on Faslodex. After getting up in to the 400s, Onc put me on Xeloda. I do 14 on/7 off, and have never had to adjust cycles due to SEs. As of yesterday, my TMs are 28, and have been in the normal range for several months now. Which is nice, as in the two other regimes I was on, my TMs would lower, then start rising again after a month.
I do get nauseous in the second week, and the anti-emetics have given me a rousing case of stone bowels, and I have some peeling on my hands and feet. But, compared to other protocols I have been on (Taxol), this is very easy.
I know some of us have had a very hard go on this drug. I'm adding my data to the pile.
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Hello Sisters. Can you add me to this group? I have been on Taxol for 6 weeks, but my liver enzymes went crazy, so my onc said no more Taxol. I kinda freaked out, but he said not to worry. He has other tricks up his sleeve. Thursday he and his associate told me that they want to start me on Xeloda. Then they sent in a chemo nurse who gave me eight pages of information, and went over all of the possible side effects. Sheesh! They have to get preapproval from my insurance company before I can start taking it. Yesterday I found out that Xeloda is VERY expensive and I am going to need financial assistance for the copay. I have tried to read most of your posts, looking to see if the se that the dr talked about were all that common. I have had a hard time in the past with chemo, so I would like to know ahead of time what I might expect. I especially am concerned about nausea and vomiting, and hand and foot.
I would appreciate any tips of tricks that you have. I will be on two weeks, and off one.(assuming the insurance will pay for it) Do you wear cotton gloves and socks to bed? Do you have any dietary restrictions, or help for the nausea? Does Xeloda make your hair fall out? I am hoping for some positive encouragement. I pray for you all to get improvement and have pain free days.
Birdlady
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Hi Birdlady.
You'll find everyone has slightly different stories when it comes to how xeloda affects them.
As for me it's been fairly easy. The worst se is fatigue, which is particularly bad this week (it's my week off on the 2 on 1 off schedule-- I'm on 3750 mg/day)
I also get a bit of hand & foot syndrome- red peeling hands & feet. Sometimes my feet 'burn' but it could be worse. Lots of cream- I use a variety- helps. I don't bother with gloves or socks.
I get a wee bit of nausea occasionally but no vomiting. And no hair falling out
All in all its not a bad chemo. It's taken 6 months on it for my tumour markers to finally start dropping.I hope the insurance pays for it for you and that it treats you well.
kt
(Actually I do wear socks! Chemo brain...)
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good luck starting the xeloda. I do moisturize my hands and feet several times a day. I switched to a higher percent cotton socks as nylon or polyester irritates my feet. I would wear all cotton but I cannot find 100% cotton socks. My hair grew back after stopping taxol and continues to grow. Two hair cuts so far. Mostly shaping and looks like a very short pixie cut. Occasionally my mouth starts to tingle and I gargle and rinse with a mix of baking soda and water. Important(for me) is eating protein 15 minutes before meds and drinking a lot of water with the meds (20 oz) and throughout the day I keep zofran handy if nausea hits because I'm the type of person where nausea and vomiting go together. Good luck
Maureen
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Thank you kt and Maureen for your quick responses! I know that we all respond differently to meds and have different se. Since none of the chemo has worked for me, and I tend to get nauseated and vomit easily, I wanted to know from those who have real life experience what I might expect. My skin really dried out with the Taxol, so I have become used to moisturizing every day. I don't use socks or gloves, but have found 100% cotton gloves and socks available on Amazon, and plan to buy some, just to protect the bedding. I am happy to hear that my hair might grow back. I am completely bald from the Taxol. I guess I need to do a little shopping. I have purchased things in the past that I really didn't need. Thank you for your welcome suggestions!
Birdlady
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Birdlady222, I was changed to Xeloda after months of Taxol. My hair has grown in nicely over the five months on X. I take a biotin tablet, good for hair and nails, from area drugstore, one a day. I take 2000mg X divided in two, morning amd evening. I am two weeks on, one week off. Tumor markers are going down. Heartburn bothered me a lot in the early months, but I have learned to take it during a meal, and drink lots of h2o all day. I have taken ondansetron with it, but I don,t anymore. That stuff leads to sluggish bowels, etc. I keep Tums around for an occasional touch of heartburn. I can nap when I need to as I am retired, and so also walk pretty vigorously 3-4 times a week, outdoors, all weather. Sometimes that is pretty much all I do in a day! Fatigue definitely comes and goes, not predictably for me. Up til recently I found that it suppressed my appetite, so stayed at my lower range for many months. Now I am feeling that winter time carb craving, now that winter is almost over! Dang. Good luck getting started on this chemo, its a good effective drug for many, but is still chemo. To be respected.
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Just an update. My Xeloda is supposed to be delivered to me on Wednesday, the 4th. I talked to the nurse navigator and asked if I could wait until after the birthday party/dinner for my son's 60th birthday on this Sat. and she said that was fine. So, I won't be starting it until next week.Birdlady, I was quite surprised that I was able to get some financial assistance for my co-pay from a foundation called "Patient Access Network Foundation.". When my pharmacy called to set up the delivery of the meds, they asked if I wanted to apply for some aid, and I almost said no. This drug is very expensive. I have applied for several other things in the passed and because of my income, I was always denied. However, I was just overwhelmed with the response that I did qualify for this. I am so grateful. So, you might look into this Foundation. They help with drugs for catastrophic diseases.
I still need to talk to the nurse navigator and get all the details of starting on the Xeloda.
I am off today for an MRI of my spine. There were a couple small spots showing up on my PET scan along with the 2 spots on my liver. I feel good and really trying to stay positive. I was dx. in 2006 with breast cancer and a tumor in my spine. Metastatic Breast Cancer. So, I have been dealing with this for a long time. But, I am not ready to give up !!! I am more worried about the diarrhea than any other s/e. I have a tendency to have diarrhea when I get nervous. Usually take extra clothes when I am going out for an appointment. LOL
How do you put in the list of DX and treatments that shows under your message?
Have a wonderful day.
Joy
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Joy78,
Have you looked into switching to a generic? My wife started with Xeloda one year ago, then was switched to a generic by the name Mylan which is much less expensive. Both obviously are pure capecitabine which is the drug. Xeloda cost $2,700 to the insurance for 4 weeks (1 on, 1 off, 1 on, 1 off); whereas Mylan cost $1,700 to the insurance; we had already hit $200 of maximum deductible to pay for drugs early in the year. This year Mylan went already down to $1,500 for 4 weeks, we paid the maximum drug deductible of $200, and for the batch they just delivered we didn't have to pay any further deductible.
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Hi. Is anybody experiencing joint pain ? I do have bone mets. I'm having pain at my shoulder joint area and upper arms. I can hardly raise my arms. It will go away and come back in a day or 2 . I'm fine as long as I don't extend my arms.I have an appointment with my oncologist on the 11th. Just wondering if it could be a build up of the toxicity from Xeloda ?
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Hi Birdlady,I'm also taking Xeloda and have been on their co-pay assistance plan since I started taking it. The manufacturer is Genentech. You can Google Genentech and see where to sign up for their co-pay program. I pay $100 per month for my Xeloda with this program.
Giovanni mentioned using the generic for Xeloda which is another way to go. Mylan is the name of the manufacturer of one of the generic forms of Xeloda, the name of the generic medication itself is capecitabine
For some reason my insurance charges me the same whether I purchase brand name Xeloda or the generic. Having my doctor specify I must be sold the brand name drug and using my co-pay card through Genentech I come out way cheaper.
The Financial Assistant at my cancer center is the one who started me with Genentech's co-pay program. Is there such a person where you get treatment?
Kessala
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Back in bed with another virus. This time it's more of the classic stuffy nose, wet cough, fatigue. Seems that once I got back on my next cycle of Xeloda my immunity must have dropped again. Anyone else have this problem? Anyone have any home remedies that help?
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Giovanni, It is the generic type of Xeloda ( Capecitabine ) that I will be getting. I am more than pleased and surprised with the amount I will be paying. I never knew that there were foundations that helped with these very expensive drugs. For that I am so grateful.Joy
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Good News! I got approved for financial aid for copay, and I don't have to pay anything. I know that my doctor had a hand in it, and lots of prayers helped, too. Thank you for sharing all of your individual se experiences. Joy, it looks like we will be starting at the same time. I hope your MRI comes out great. I pray that Xeloda is the perfect medicine for us. MameMe, you are so positive. Susan, I'm sorry you are sick. Do you have a fever? Have you called your doctor? My doctor is pretty insistent that I call him any time I don't feel well. Sorry I don't have any home remedies to help you. ((HUG)))Birdlady
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Birdlady, I am so happy to hear your good news. I know that takes a big load off of your shoulders, as it did me. I am going to order the cotton socks and gloves from Amazon, also. I have a friend who makes her own hand cream and she is sending me some of that. She said she started making it for her husband, who works outside and gets very sore hands from being out in the weather, She calls it her "miracle cream" and has a lot of requests for it. So, I am grateful that she has offered to send it to me.I talked to the nurse navigator yesterday, and I will start on the Xeloda on Sunday. I had asked if I could wait until after my son's big birthday dinner on Sat. So, I will be starting Sunday morning and 21 days on and 7 off. She is going to order me a RX for nausea, just in case I will need it. And, she told me to get in a good supply of Immodium. I worry about the diarrhea the most.
I have an appointment on Monday to see about the results from the MRI. I asked if I would be having any kind of s/e that quick and she told me she didn't think so. I have an appointment with the oncologist on March 20th and I stlll have to work out some kind of a plan for transportation. That is another big worry for me, also. The nurse is going to have the Social Worker at the Cancer Center call to see if she has any suggestions. We have a county bus service which I have been using very successfully for about 5 or 6 years, but they just recently lost their contract with the county and the company who took over, does not have a very good reputation for their services. So, I just don't feel like I can depend on that bus now. I hate being late for appointments and fear that they will forget to come back to take me back home. There are a couple other options, but they charge an arm and a leg. My family can help out once in a while, but it means that they lose time from their work.
Again, Birdlady, happy that you will be getting the assistance.
Joy
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good luck on the Xeloda. It has been very kind to me. I am currently on a xeloda break while I heal from my brian surgery but have lived on Xeoda for over 2 years. It has been good to me. No evidence of disease on scan of liver ad my head tumore appears to be just scar tissure. I will take that. I will catch up later when I can fucus on the words. Still revocering. Take care
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Leftfootforward, So happy that your scans have shown NED. So good to hear your positive thoughts about taking Xeloda. I am thinking positive. My nurse navigator told me that most people do not experience too many of the dreaded s/e. So, I am hopeful that I will be one of those people. Thanks for sharing your good news. Hope that your recovery will keep going smoothly.Joy
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Leftfootforward, best wishes for a quick and complete recovery from your surgery! (((HUG))) Thank you so much for sharing your positive results with Xeloda. I have to admit that I was overwhelmed when the nurse navigator gave me all of those pages of possible se, including a list of what to have on hand "just in case".Joy, yes I am sooo relieved that I got the copay assistance. The pharmacy is overnighting the med to me. I am to call the Dr. when I receive it. It is so sweet of your friend to send you her "miracle cream". My skin is already dry, so I know I will be using a lot of moisturizer. Do you think she would share her recipe? I'm happy for you that you get to share your son's big birthday dinner. I will be in the middle of my first round of treatment on my daughter's birthday, but I'm praying that I won't have any major se. If I do, she will understand. She is so supportive, and she is hoping that Xeloda will be a med that my body can tolerate and we can get some positive results. I hope you can get your transportation problem solved. That is also a problem for me. My family takes turns getting me where I need to go, but they are losing too much time from work. My husband is self employed, and when he takes off we lose income. (I think that's why we qualified for the copay assistance) I know that in my area the American Cancer Society has transportation assistance, but I don't know how much they charge. Is there a Senior Center near you? Sometimes they have volunteers that provide transportation. Do you have any neighbors that you could trust? I am like you...don't like to be late. Good luck. Here we go with the Xeloda. Keep in touch...it's nice to have someone to share the experience with. I hope Xeloda is kind to all of us, and kicks cancer out!
Birdlady
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Hi Susan, Its so good to hear from you on this thread, but I am really sorry you have been down with another virus. My home remedies for that sort of infection are pretty basic; warm clear fluids, clean sheets and light but warm covers, light reading if it doesn't bother your eyes, and lots of sleep. I have had some episodes of world class fatigue over the last six months, but only one cold virus so far. I did get a flu shot in Dec., which might be helpful but who knows. How is your eyesight now? And your recovery from WBR? That treatment calls for really good self care, which I know you do, but being a mother with a child at home and a household to run, its super easy to get back into doing too much. If your body aches with the virus, a few days of ibuprofen or aspirin at regular intervals really helps. I am amazed at being stable right now, and very grateful. I am cautious in what I take on, though, because I value being able to rest as needed and to get my walks in most mornings. Big hugs to you from Maine!
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Leftfoot: I'm happy about your scan results. Take care of yourself. Don't rush into doing things.
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