All about Xeloda
Comments
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I did not have hair loss on Xeloda. In fact it grew in while I was on Xeloda. I lost my hair while on Navelbine which was the chemo I had previous to Xeloda.
My MO never said anything to me about no milk products, in fact he didn't tell me any foods to avoid.
I guess there are differing opinions on this. Most women have good success with Navelbine. It landed me in the hospital for over a week.
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Syrmom, MO said No milk (which I don't consume anyway), yes, but of course regarding my situation. Maybe check that with yours? Cheese & yoghurt are allowed if not accompanied with meat, something to do with interruption of the iron intake process of the body..
Also regular manicure& pedicure (not cutting deep of course) helps the nails, was told.
No major hair loss actually expected, but somewhere down the thread someone asked, so I just replied with my experience
Ebru
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Joy, sorry about your Navelbine experience.
I was also also told no grapefruit & pomegranade consumption as well, while on any chemo by my cancer nutritionist..
Ebru
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My surgeon pushes a diet free of animal fat, particularly any dairy. Totally vegan. She told me all about the yummy kale smoothie she drinks every morning for breakfast. (She just throws in anything she finds in the fridge - some bok choy, a tomato, cabbage...)
Well, I eat a fairly healthy diet, avoid overly-processed foods, and eat tons of fruits, vegetables and legumes. I eat fairly little meat and could probably give it up easily. But dairy is another story. It would be a real quality of life issue for me to give up my beloved goat cheese and feta!
And I don't think the Xeloda is going to sit too well after a kale/bok choy smoothie!
I asked my oncologist for her opinion, and she told me to continue eating as I have been. She says there is little conclusive evidence that dietary changes are of much help at this stage of the game. She did jokingly tell me to limit myself to "no more than two sticks of butter and eight shots of whiskey a day."
I do avoid grapefruit, because it is known to interact with so many medications. I don't know if it is specifically forbidden for any of my meds, but I am taking so many meds that I just figure I'm better off staying on the safe side. I also avoid too many bakery products supplemented with folic acid. My oncologist told me excess folic acid is a no-no with Xeloda and can increase the side effects. She had me discontinue my multivitamin for this reason, though I do take several other vitamin supplements that she has recommended. Specifically, B-12, Vitamin D and Calcium.
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I took a great nap today and awoke to my first delievery of X by my front door. (I live in a cottage in the woods, so no worry about anyone taking packages). I just sat and looked at it for awhile before opening it. I read all the information enclosed in the packet and placed the pills in the daily pill holder my onc's office gave me. A part of me just wants to start it tonight and get it going, but I will wait until morning. I don't know why I am waiting, just need to get used to it being in the house I guess.
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I hope Xeloda is good to you. It has been a great chemo for me! Wishing you all the best!
Joy
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Dear Joy, Thanks so much for your kind words of encouragement. As I am reading and posting this evening, I am also looking past my computer screen at my beautiful, sweet 6 yr old granddaughter sleeping on the couch. She absolutely adores me, as I do her. It is moments like this that make me realize I have to keep trying.
Sherry
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The grandchildren are precious aren't they!
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Can someone explain the henna ?
How does it work, where do you buy it?0 -
Karen,
I posted about it a while back, here's the link:
http://community.breastcancer.org/forum/8/topic/803221?page=1#idx_18
Here it is easily found, but I don't know about the US. Maybe helps:
http://xelodasideeffects.blogspot.com/
http://e-patients.net/archives/2008/08/e-patient-finds-henna-relief-for-hand-foot-syndrome.html
It helped me instantly. Hope you find relief soon.
Ebru
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Thanks stagefree.
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Yes Joy, they certainly are precious. I am so fortunate that my grandchildren live only 5 mins. from me. My DIL, and one of my best friends, despite the fact that she and my son are divorced, works until 7:30 weeknights. My granddaughter and her brothers, ages 11 and 13, get off the school bus at my house every day. My afternoons and eves. are busy, but I love it. I try my best to make each day special. Sometimes we have candles in muffins, just to celebrate that the temps in the Adirondacks are above the 30's! Some people feel that caring for them daily is too much for me. It really is not, at least for now. My home is completely set-up for children. They each have an area of my little cottage that is theirs. When I do not feel well, I lay on the couch and read, cuddle or watch a movie with my grandd. The 13 year old helps me a lot. Now that the weather is getting better, it is even easier to care for all as I sit on my screened in porch with coffee and blanket, while they play in my yard. I live at the base of a small mountain, so my yard is full of adventures for them.
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OBXK - thanks for asking the henna question and Karen, thanks for the response! Its hard to find underwear and socks to buy in my small mountain town, but there is a great health food store that will most likely have the henna powder. I am going there today!
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Whew! just took my first X. Good thing you all know I'm talking about Xeloda and not Ecstasy! Isn't all so ironic....I take very toxic meds, but would never think of giving conventional deworming meds to my cats. Nope, i go to the health food store and buy them "Diatomaceous Earth" so they can be treated natually. Go figure....Please forgive the rattling-on. I'm sure I will on the boards a lot today - been up since 3. - nervous wreck about X. Just too busy with grandchildren to be ill from Se's. Oh well - house is cleaned and dinner is cooked, so i will just enjoy the beautiful day that is forcasted for the North Country.
Sherry
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Sherry - you must be a great help to your DIL and how wonderful to see the GC everyday! Sounds like the perfect setup. I hope you do well with the X - I hardly knew I was on it week one.
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Feeling very discouraged today. Got sick again while taking my Xeloda. This is my very first chemo and I thought this was a gentle one. What if I can't handle any chemo. I'm not willing to give up!! I ate something, took a Zofran and then about 30 minutes later took my pills, which didn't get down before I started vomiting. I did ok for first three days and now this. Could it be the dose? I hate this!!!!
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I'm on my second cycle of Xeloda. So far, so good. I take 1500 mg morning and evening. I didn't used to be a breakfast eater but that has changed because of various meds requiring food on my stomach. So my morning routine is yogurt with granola mixed in. Nightime/late evening varies from nuts to ice cream to rice cakes to apples to whatever. So far have not run into food conflicts with the Xeloda.
I have had some mild bouts of nausea in the middle of the day but just took a reglan and that took care of the problem. Also have experienced some fatigue which is also sporadic (unpredictable) but I'm used to that since I had serious fatigue for over two years following my original treatment.
I have to say these pills don't intimidate me. During my original treatment I was taking Sutent, also an oral chemo. That caused some serious side effects and truly felt like it was my "poison pill". Some days it was hard to stick in my mouth or swallow. This just doesn't compare with that evil drug.
I also take prilosec, vit B12, Vit D and Xgeva. BTW - I tried Nexium for a few months but quit taking it when it started to affect my taste buds. I got to the point of disliking vegetables and most other foods just didn't taste very good. Just a comment for others that may be experiencing taste issues and are taking Nexium.
family5 - No immediate suggestions for your nausea since you are taking the zofran 30 minutes before the Xeloda. But you may want to start a food journal to record what you had during the day. It may be a conflict between certain types of food and Xeloda that don't work for you. Or you might try an Ativan instead of the zofran (or even in along with the zofran). The Ativan not only acts as a anti-nausea but it also helps with the anxiety and anxiety definite contributes to nausea.0 -
Family5, I've been using Zofran since my Taxotere days. Have always been prescribed 30 minutes before food intake. I remember MO being spesific about it. Maybe try that? 30 minutes after food, I take x with a snack, which helps. Starch & carbs help the tummy..
Ebru
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Stagefree, I am amazed that you MO gives you all this information about your drugs. My oncologist of 7 years left last November and my new oncologist (still trying to get to know her/still not that level of trust) neither discussed how to take these meds. I guess they leave it up to us to read the insert - however, I didn't get one with Xeloda. I don't remember being told 30 minutes prior to a meal about Zofran. I have the Zofran for instant relief that goes under the tongue. Honestly, if I am really nauseated, an Ativan under the tongue works best for nausea.
Just completed my 3rd round at 4000mgs. per day. First time I have been able to take the full 14 day treatment. I have lots of fatigue an some nausea today; making sure I eat. I am on Mophine 60 mgs and Neurontin 300 mgs three times a day plus all the other meds. The breakthrough Morphine really upsets the tummy. When I have to use the breakthrough as I did Saturday (a day in bed dealing with pain) you hurt so you take the morphine, don't eat and then the nausea comes. Looking now at the folic acid in premade pastries, etc. Knew that was something that didn't go well with Xeloda.
My white count last time was 2.9 and Hemoglobin 31. Neutrophils were 68 - I would not have been able to take Abraxane with the white and neutrophil count. Anxious to see what it is tomorrow - new oncologist never mentions. Old oncologist would never come into the room until he had the lab report. Tomorrow, I am going to ask her what it is, see if she has seen it. Never ask, just assumed that she had seen it and I can come home and view the report myself. I am just dragging and really wondering about my counts.
Do all of you know your counts and is there a point that they don't give you Xeloda?
Chickadee, how you doing? I have probably missed your post.
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Sherry - I hope you had a good first day. Any side effects?
Family5 - so sorry you were ill. The only time I became sick was when I ate ice cream for my evening meal. I take my zofran along with my Xeloda. I hope it was a one time thing.
I want to have a glass of champagne for my birthday. I read you should not drink while on Xeloda - has anyone had a drink while on it?0 -
I asked my MO if I could occasionally have a glass of wine and he said "'Go For It!"
You should ask first probably.
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Reality: How wonderful that you are able to care for your grandchildren. I had two of mine today, girls ages 4 and 1. They are so sweet but I am pooped!
Let us know how your first day on Xeloda went. I hope it goes well!
Joy
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OBXK - Thanks for your kind post. I retired early from teaching due to my diagnosis and have not missed teaching at all. I find that being a full-time gramma is what I am truly meant to do. I still "teach" all the time, but feel that I am teaching a far more important curriculum than I was when I was continuously preparing students for state exams.
My first day of X was fine. I noticed a few light-headed moments and waves of nausea, but light snacks and light yardworked helped me through the day.
Thanks again for your support.
Sherry
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Yes, they are a delight, Joy. Oh my, your grandchildren are very busy ages. My six-yr old keeps me going, but the 11 and 13 year olds are easy to keep occupied. In fact, my 13 yr old spent the day with me as he "was not feeling well". He actually had a big English project due and needed my help. We had a great day together. It was nice to have him with me on my first day of X. I realize that I am in the "honeymoon" period of X, but today was much better than I thought it would be. A 2 hour nap helped a lot!
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Naniam,
I got a couple of pages about Xeloda from my onc and then when I picked up my meds from Rite Aid they had a different set of information. I've heard some ladies talk about getting a kit from their onc but I didn't get anything like that.
I read the papers from the onc right away. Ironically I was taking folic acid at that time (my onc tells me to take folic acid and B12 when my neuropathy in my feet bothers me) but there was no mention of it in the onc's information. About 5 days into the first cycle I finally sat down and read the info from Rite Aid and that is where I saw that you are not supposed to take folic acid supplements because they may reduce the effectiveness of the Xeloda. I was surprised to see it was on one but not the other. Mentioned it to my onc but he didn't seem too concerned.
BTW - my onc's MA always make sure I have a copy of my lab results as soon as they are off the printer. And if my onc doesn't have them by the time he sees me then the MA brings them in during my appointment. He always wants to see them and make sure I know what they are.0 -
If you go to the Xeloda website, and sign up for the support program, they send you info, a recipe book for constipation, nausea, etc. You also have a nurse on call 24/7.
When I did more reading on drinking on Xeloda - seems the concern is that it thins your blood. So I'll have a big spinach salad before and after my bubbly
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Anacortes - The same goes for my NP. She always makes sure my recent lab results are clipped to the outside of my chart, with areas of concern circled for my onc appointments. In addition, I also request copies of all my scan reports as I research all terms I do not know. You know the old saying, "There is power in knowledge" - I truly believe that in our situations.
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OBXK - thanks for the info. Enjoy the salad and the bubbly, and have a great time!
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Hello to all - on my 2nd day of X. Doing well so far - I guess I have it easier as I only take 500 mg in a.m. and 500 in eve. Onc is always concerned about my bloodcounts, as they often dip very low. I am not complaining about the low dose, but did leave a message for onc this a.m. as I am concerned that the dose is not high enough to do any good. I would rather deal with low counts, rather than take X in vain.
It's a beautiful day in the Adks. Going to take my gchildren to the lake for a picnic today. There's half day of school and the lake is just across the road from my cottage. Here's wishing all a good day.
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Reality. Sounds like a great day for a picnic!
Your onc probably wants to see how you tolerate the Xeloda so he put you on a low dose to start. I am on 1000 mg AM and 1000 mg PM. I consider that a low dose compared to what some ladies are taking. But it is working for me! I started at that dose and have been on the same dose for 8 months.
Joy
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