All about Xeloda
Comments
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Hi Nancy,
I'm just starting my 3rd week on today. I'm taking 3 (1500mg.) pills after breakfast and 3(1500) pills after dinner. I drink a full glass of water with the pills. It may be a low dose (I don't know), but so far I'm feeling really good. Only a twinge of nausea once in awhile. Are you eating before you take your pills?
Karen
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kimpk - I am taking them right after breakfast & dinner, but with miaomix's advice, I may try to take it during the meal to see if that helps.
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Nancy,
That sounds like a good idea. My dose might be lower. I think any advise we get from this site is worth trying. It can't hurt. I know it doesn't work this way, but I'm afraid without any real SEs that the drug isn't working. Tomorrow is my 1st Ca15-3 since I started. I'm just hoping and praying it doesn't go up a lot.
Karen
BTW - I'm in St. Augustine, FL. Almost neighbors.
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Helloo!!
Ibrance failure joining the party! I was on Ibrance from Jan and actually had great results 4 months ago but it seems to have stopped working since then.. Starting at 3000mg. I'm so happy to read your posts, your info and top tips - I've just moved to Spain (DH is Spanish.. I understand some Spanish and try to speak - need some serious improvement!) - my new onco spoke mainly Spanish and mainly to my husband, she really hacked me off today so much so I might look for another.. She didn't offer any anti nausea, creams, nothing.. she mentioned I might have diaohrrea but not too much else (unless I missed it in translation!).. I just have bone mets - does anyone have Xgeva jabs? and if so how often (she ummed and ahhed at this and said well, maybe one month on one month off but the way she answered didn't give me much confidence that she knew what she was talking about) and does anyone do the Zoladex jabs? I'm naively hoping to bodyswerve as many SEs as possible as I work full time and have a 6 and 4 year old that I need to run after. I'm hoping my 6 pills a day fit in my week pill box so I can remember if I took them or not!
Anyway, pleased to meet you all and thanks again for sharing your info and experiences xx
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Hi Jo,
I have a great On at the Mayo Clinic. These are his instructions: 3 pills after breakfast followed by a full glass of water. 2nd dose 3 pills after dinner followed by a full glass of water. This is 1 week on and 1 week off. I'm on my 3rd week on and doing really well with minimal SEs. Dr. and others on the site recommend Udder Cream for hands and feet. Don't know if you can get in Spain. I have the Udder Cream and a good Aloe lotion I got in Aruba. I'm using a vaseline product on my feet. I was on Faslodex and verzenio for a few months before this. For me, Xeloda is wonderful. Just have to hope it works.
Karen
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Anybody using avacado along with xeloda-capecetabine??? Any side effect
Or any good thing with CA by using this super food??? Plz reply all
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Hi San,
I have been on X for three months and eat avocado regularly. I have not noticed any problems, in fact have none of the typical SE to speak of....
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Oh knock on wood!!!
By the Grace of God... Do u feel any plus point having that food in your lifestyle???
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yes! I consider it a super food, like many of the others I use to balance my nutritional needs.
I am pre diabetic, therefore I am on a low carbs, no processed, no mycotoxins laden foods, and no sugars other than organic berries and green apples. My energy levels have skyrocketed since I have changed my diet...
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Question for everyone: Did you happen to experience a stressful event couple years before being diagnosed with BC? A loss of some sort or a stressful and unwanted change in your life?
Something that kept you up at night, or something you mentally obsessed about?
There seems to be a correlation between prolonged stress and the onset of cancer and I thought, what better way to find out than to ask our members.
Check this out: https://www.ncbi.nlm.nih.gov/pubmed/19095474
Melatonin is the primary hormone responsible for regulating the immune system, and when there is not enough melatonin, production of IL-1 (Interleukin 1) and IL-2 (Interleukin 2) is diminished. Interleukin 1 protects against infection and Interleukin 2 regulates the activities of white blood cells [including T cells, B cells, neutrophils, macrophages and natural killer cells] responsible for immunity.
And then check this chart...what do you think??? If this sequence of events is correct, couldn't we just reverse it and regain an immune system capable of dealing with the type of systemic infestation that's MBC? Am I sleeping and paddlingthe denial river?
I personally did go through a series of traumatic events for a few years before being diagnosed with MBC, and the news did catch me by surprise. I was also diagnosed and treated by my functional doctor for many years for weak adrenals, thyroid and candidiasis. But since I used to have a very stressful and demanding job, that was creatively and financially satisfying, and loved to eat lots of fruits, carbs, mixed drinks and desserts, those hormonal problems were never resolved....so to me the chain of events as described in the chart makes total sense. does it make sense to you?
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Miaomix- the first time I was diagnosed we were building a house and it was stressful. Nothing went right. When it reared it’s nasty head again my dad was dying of cancer. I was so close to my dad my heart broke every day to watch him suffer.
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Dianarose, thank you so much for honestly contributing to this research....I'm so grateful to you and sorry for the loss of your dad.
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Nancy and Karen, I don't live too far from either of you! I live in a little town south of Green Cove Springs. Karen, I bet we have the same Mo at Mayo! As far as I know, he is the one who treats most Mbc patients.
Regarding nausea, I have finally come up with a combo that works for me! I take omerprozole(sp, Zofran and Align probiotic with Miramax 30 minutes before I eat breakfast. Then I eat breakfast and then take the Xeloda with my other meds and lots of water. Four hours later, I take Promethazine and then four hours after that I take another Zofran. That really has been helping! If I have any breakthrough nausea, I use Cbd oil. I tried to use Cbd oil exclusively for the nausea, because I hate taking all these meds, but it wasn't working. I have also found that towards the end of my on cycle, I get a little motion sickness. I am going to try a band for that. Also, I found that keeping up with hydration makes a Big difference! I have been using watermelon and grapes with every meal and if I find myself getting behind I drink a large bottle of Eternal water for the electrlytes. I just cannot stand Gatorade!
So far, I have two days, the fourth and fifth day, when I am so tired and usually have a bad headache. I just rest on those days. I find the predictability of this drug so much better than the l/I combo! I hope that it works for a long time for all of us!
Hugs and prayers,
Claudia
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Yes miawmix it do make sense.... Sensitivity, expectations from others, workload, depression from loss, unhealthy life style, unhealthy relationship.... Alot more... All contributed to such a horrible situation
Diana rose yes,it's too compromising to have lovedone in this disease... How to cope with that?
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Thanku so much for your informative reply miawmix
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thank you for your contribution SanJF!
The University of Helsinki, Finland conducted a study of 10,808 women to discover whether stressful life events preceded the onset of cancer. "Independently of total life events, – divorce/separation, death of a husband, and death of a close relative or friend were allowing associated with increased risk of breast cancer. The findings suggest a role for life events in breast cancer etiology through hormonal or other mechanisms." [http://www.ncbi.nlm.nih.gov/pubmed/12615606]
Extreme suppression of anger was the most commonly identified characteristic of 160 breast cancer patients who were given a detailed psychological interview and self-administered questionnaire in a study conducted by the King's College Hospital in London, as reported by the Journal of Psychosomatic Research. "Patients results are pbased on statistical comparisons between 69 patients found at operation to have breast cancer and a control group comprising the remaining 91 patients with benign breast disease. Our principle finding was a significant association between the diagnosis of breast cancer and a behaviour pattern, persisting throughout adult life, of abnormal release of emotions. This abnormality was, in most cases, extreme suppression of anger and, in patients over 40, extreme suppression of other feelings." [http://www.sciencedirect.com/science/article/pii/0...]
The California Department of Health Services in association with the National Cancer Institute studied 847 women with breast cancer from 1985-1994 and found those who reported low levels of emotional expression had a fourfold risk of dying from cancer than those who reported high levels of emotional expression.These results suggest that the opportunity for emotional expression may help improve survival among patients with invasive breast cancer." [http//aje.oxfordjournals.org/content/152/10/940.full]
Studies above show expressing and releasing toxic negative emotions such as anger, hate, resentment, grief, increases the survival rates of cancer patients significantly.
This is just one of a dozen medical studies that I've found that were conducted on the issue of stress and repression of anger. More important is the study below, conducted at Yale Medical School regarding miraculous recoveries.
Retired Clinical Professor of Surgery at Yale Medical School, Dr Bernie Siegel: "I have collected 57 extremely well documented so-called cancer miracles. At a certain particular moment in time they decided that the anger and the depression were probably not the best way to go, since they had such little time left. And so they went from being angryto being loving, caring, no longer angry, no longer depressed, and able to talk to the people they loved. These 57 people had the same pattern. They gave up, totally, their anger, and they gave up, totally, their depression, by specifically a decision to do so. And at that point the tumors started to shrink." [http://berniesiegelmd.com/]
To get your immune system working properly again, to bring those elusive WBC levels up is important to not only process difficult emotions but to also consume tryptophan rich foods which the body uses to make melatonin. I have been also supporting my adrenals with amazing results as far as my energy and mood are concerned. My hemoglobin levels are finally normal so I'm breathing better and don't get tired aseasily. I'm hoping that the Pet scan in thirty days confirms what my body is telling me.
Because it is in fact the depletion of adrenaline that disrupts cell respiration above all. When a person is under prolonged psycho-emotional stress, adrenaline levels initially spike; yet over months and years adrenal fatigue results and the production of adrenaline declines significantly. This is important, as it is the job of adrenaline to convert glucose within cells into ATP energy for general bodily use and for cell respiration. This occurs through adrenaline stimulating the G-Protein which subsequently stimulates production of the GDP molecule within cells.The Krebs' Citric Acid Cycle [which is akin to a large processing factory inside the mitochondria of the cell] uses the GDP molecule to produce the energy molecule GTP. GTP is used to convert glucose into ATP energy through the metabolic pathway known as Oxidative Phosphorylation. In cancer patients, the Krebs' Citric Acid Cycle [which is the precursor to Oxidative Phosphorylation] comes to a halt without the all-important GDP molecule to keep the glucose-ATP-processing factory running, causing a build-up of glucose in the cell. In order to survive, the cell ferments glucose instead to obtain ATP energy, discharging lactic acid, which is what we experience as horrific inflammation, aches and pains. Eventually this highly acidic environment causes malnutrition and the cachexia state, and we all know what happens after that....
Tryptophan is an essential amino acid and one of the precursors to melatoninproduction. Increasing your intake of tryptophan-rich foods may boost melatonin levels. Some of the foods with the highest amount of tryptophan are spirulina, cottage cheese, chicken liver, pumpkin seeds, turkey, chicken watermelon seeds, almonds, peanuts, and yogurt. Garbanzo beans, however, win the tryptophan prize. They are loaded with free tryptophan (meaning it is not attached to a protein like in other foods) making the uptake of this source of tryptophan the best, and who doesn't love some chickpeas in a spicy tomato sauce with some chunks of chicken and green veggies? Or a spicy hummus eaten with celery sticks?
When stress hormone cortisol levels skyrocket and remain at high levels, generally mean a person cannot sleep well and cannot produce enough melatonin which is produced during deep sleep usually between the hours of 1am and 3am in the morning.
Melatonin is the primary hormone responsible for regulating the immune system, and when there is not enough melatonin, production of IL-1 (Interleukin 1) and IL-2 (Interleukin 2) is diminished. Interleukin 1 protects against infection and Interleukin 2 regulates the activities of white blood cells [including T cells, B cells, neutrophils, macrophages and natural killer cells] responsible for immunity.
When there is insufficient levels of Interleukin 2, stress-induced viral-bacterial-yeast-like-fungus that have pleomorphised in the body are now free to invade normal cells; damaging cell DNA through the release of "mycotoxins" within the cell nucleus, causing proto-oncogenes to mutate into oncogenes, and inhibiting tumor suppressor genes [notably p53] which results in normal cells mutating into cancer cells.
So there you have it. A logical explanation for the triggers of this systemic disease and dietary solutions that can be implemented to support your wellbeing while undergoing immune system destroying yet necessary TX.
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Claudia-please do a lot of research on CBD oil, since what I have read, it kills your immune cells, thus helping the cancer to grow faster.
Goldie- Prolia is given via injection every 6 months for Osteoporosis or Osteopenia. I have been getting it for a couple of years.
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Claudia if your Dr at Mayo is the sweetest man in the world then we have the same Dr. He is so kind and I really believe that he keeps n top of everything breast cancer. My husband really likes him too and has total confidence in him Hope he's right. I'm going to go to the support group next month. The speaker is a pathologist at Mayo who has BC. Her perspective should be interesting. I've never gone before.
Question for everyone: Does anyone know what the collateral damage to our bodies from Xeloda is?
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Those of us that are neutropenic might want to check out this finding.. Being proactive is the key here. Being on an antifungal diet might help, although unlikely when it's systemic.
How Chemotherapy Increases the Risk of Systemic Candidiasis in Cancer Patients: Current Paradigm and Future Direction
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4810127/
Most studies place the crude mortality rate due to C. albicans infections at around 30%–40% [11,15,16,22], but some have estimated this to be as high as 46%–75% [23]. Additional challenges associated with managing systemic candidiasis include the lag time between onset of symptoms and initiation of antifungal therapy due to difficulties in diagnosis, and an increasing rate of resistance against commonly used antifungal drugs.
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Question for everyone: Does anyone know what the collateral damage to our bodies from Xeloda is? Klmpk wrote and I have been asking myself the same question.
Here's a study that I've found so far on how xeloda can cause PERMANENT brain damage to some patients. I'm worried about my sudden drop in platelets and sudden rise in liver markers. Is this drug irreperibily damaging my liver? I wonder....I am on 4/4 7on and off. I want to stay on it for a long time, but I'm afraid of the collateral damage.
My MO didn't want to lower the dose when I asked him.
Anyone else with skyrocketing AST and ABS since taking this drug
Researchers Detail Chemotherapy's Damage to the Brain
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This is really very important to know... But what to do about liver levels???
Can't be they stabilise ever again???
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if I’m honest, I don’t worry about this.
I knew when I was diagnosed as stage 4 I was going to be on Chemotherapy for the rest of my life. I’ve only been off chemo for a total of 8 months since my initial diagnosis in Dec 2010.
My mets are to my liver and brain.
Without Xeloda, I am sure I would not be here anymore. I say this because I had s clear brain for 5 years while on Xeloda and developed over 20 brain lesions when I was taken off of it for 3 months. So it appears Xeloda keeps me from having a brain loaded with tumors.
So I am thankful that this drug allows me to be present currently to watch my children grow up. I realize that the chemo I am taking is effecting my good cells too but I will take it.
My littlest one will be entering 3rd grade, my oldest has just earned his drivers license and is 16. I have two others who are 10 and 13. This drug has given my 5 years to see them grow up. I think in my case the long term consequences are worth it.
Which is not to say that you should not try to find drugs and other methods that help prevent sone of the SE of these drugs. I guess I accepted that without them, I wouldn’t be here today. I live day by day and appreciate each one.
I also acknowledge that I have brain mets and have been dealing with choices throughout my Cancer journey that can/will affect my Brian health. I recognize that the thought of mental decline and function is a very scary thing. So for those of you without brain mets I understand your deep concern. They are fears nitvto be taken lightly.
I write this from a perspective of someone who has been juggling the pros and cons of treatment that effects mental ability for years ( it will be 6 in December). So I am probably less worried about it. I’ve had 1 crainiotimy snd 3 gamma knife treatments to my brain over the past 5 years. It definitely has definitely shaped how I feel about this issue.
Xeloda has been my lifeline. It comes with its baggage but for me I am so glad to have it.
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When i was first diagnosed in 2013 with stage 11 BC, I often played the gratitude game. That at least I was not a young woman with young children. I'm now 74 and much as I want to live to be 90 like my Mother I realize I got a "notice" that I may not get there. Right now, on my 3rd cycle with Xeloda, I'm happy with it. My TM came down from 214 to 210 on Monday. I was just hoping and praying it wouldn't go up.
I hope so much that it keeps working for you and there is some other miracle drug coming down the pike for you to stay put with your kids. I would think that for you, it's whatever it takes. And don't sweat the small stuff.
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Hi Leftfootforward,
You have to admit that you are quite unique in your success and longevity, not only on X but on all TX in general. I'm very happy for you and wish you only continued success. In fact are women like yourself and the others that live past the five years mark that inspire and give the rest of us hope.
I have been reading and studying the medical histories of the women that started this particular topic in 2009, and what's apparent is that it failed most of them rather quickly with progression to other organs.
Im just trying to understand what makes the drug work well, for people like yourself and others, since MO's don't have a clue, and based on clinical studies theaverage effectiveness of this drug is only 6 months....
I'm grateful to be taking this drug, and like you and many others I hope to stay on it for many years. I accept the fact that cancer TX imply the surrender of parts of our bodies, but I believe knowledge is gold, and although there's a slim chance, I'm hoping to protect myself from foreseable disasters with my knowledgeable arsenal of completary medicine. Wouldn't be a shame to allow the TX to compromise my liver, without taking protective precautions, to then find out in three months that the TX failed me?
I repeat, I much love and feel only admiration gratitude to you and the other long term survivors like Lulubee, Babs, BlaineJennifer, Bestbird, Lindalou, Pajim, the indomitable Denny123 and all the others. It is your histories that light me up and give me hope....
And by the way, based on your response, and considering your medically history, I detect only clear thinking and no signs whatsoever of mental decline....XXXOOO Mina.
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mioamix-
Let’s hope everyone can find their magic bullet.
I hope I didn’t offend anyone as I too believe it is s good practice to arm ourselves with knowledge and to make choices to protect us from further harm from our treatments. I love all of you who share the information you have learned. Prevention is always a good thing.
Please never stop sharing.
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Sticky palms?? What the heck? I am on 2,000 a day, one week on, one week off. Took the first pill this morning of cycle 13. I got a McD frappe and my hands suddenly got horribly sticky! I thought that my steering wheel leather was disintegrating. Came home and cleaned the steering wheel and used Pledge on it. And it is fine.
Then just now I was moving stuff in my freezer and it happened again. My palms were all horribly sticky until I got them dry. Thought maybe it was the kind of lotion, but it doesn't matter. Anyone else? Geesh.
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Hi Everyone, I am just starting my 3rd cycle and my hands and feet especially are so bad. Anybody else dealing with the hand/foot issue? How do you get relief from it?
Leftfoot.. thank you for writing. its encouraging to know that you are doing so well on X!
Tina
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Hi Tina,
The 1st thing I would do is talk to your Onc to see if you can go 1 week on and 1 week off. I know several of the ladies on this thread do that. My Mayo Dr. says this reduces the SEs and is just as effective. As far as your hands, I just use either Udder cream or an Aloe lotion I got in Aruba several times a day. My feet just at night with a vaseline product or udder cream. They're read, but not dry or painful.Karen
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Denny, no sticky palms here.
Tina wow, the H/F syndrome hit you fast. Mine is bad, not a whole lot of relief to be had. I wear rubber flip flops in the house, with coconut oil or lotion. I also might wear latex gloves with the lotion or coconut oil on my hands.
I've been on X for 3 and a half years. My onc says most might get 1 year. Wishing everyone a long run with the Madame!
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i sort of alternate between the vasaline type cream at night and udderly smooth in the morning and during the day
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