All about Xeloda
Comments
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dorimak, even if you are resistant, when they knock down whatever is driving the cancer now (like PI3K, for example) then the cancer most often moves back to using the estrogen receptor and becomes estrogen-dependence, and you can respond again to the anti-estrogen drugs. That's why they add Faslodex to the PI3K inhibitors, for example, because the cancer re-gains its dependence on estrogen, so long as it still expresses the estrogen receptor. That can't happen in triple-negative cancers.
theresa- not a problem, you can be treated with Faslodex many times, in any number of different combinations- progression on Faslodex alone just means you need it to be combined with an inhibitor for the alternate pathway the cancer has decided to use; once you block the alternate pathway the cancer goes back to growing on estrogen.
Also, the affinitor-arimidex combination is used to block the mTORC1 pathway, and partly overlaps the PI3K pathway. So, people who responded to AA tend to do well with Alpelisib, but there is sufficient difference that people who did not respond to AA may still do well with Alpelisib..It's good that both are options for cancers that are moving in that direction.
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Denny, my big toes are the same, I find apple cider vinegar to help heal and let it grow back. I take one of my syringes from Xgeva, draw up some ACV and squirt it under my toenail a couple times a day. It takes a few months, but it does grow back.
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Thanks Goldie..a syringe is a good idea. I use Betadine when I have an infection. And otherwise, I use Tea Tree Oil.
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Denny, I have heard the tea tree oil is good too. Are you mixing it with a carrier oil, such as coconut oil?
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Thanks Cure-iuos. You seem to have a great understanding which is great (and encouraging).
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I'm on day 8 of first cycle. Has anyone had symptoms of like major PMS. I'm 62 so post menopausal but today I feel such rage that's not normal for me.
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Feeling very nervous about starting Xeloda, first dose tonight. I am on 200 morning and 200 evening, which seems high to me. Has anyone got any thoughts please.
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hi Yvette...2000 ( 4pills) every 12 hours is high but typical.
More important is: are you on a 1week on 1week off schedule?
Or are you on a 2weeks on and 1 week off? That factor will affect you the most.
But, everyone reacts differently....and the side effects are accumulative.
If you suffer greatly from the hand and foot disease talk to your doctor about lowering the dose.
Good luck with your treatment!
For me, xeloda has been the least intrusive treatment so far...I hope you find it easy as well.
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Hi Miaomix, I am on 14/7 schedule. Guess I will have to see how it goes. Bit confused that they gave me 120 tablets which is 15 days. First to be taken evening of day one (today) and last to be taken morning of day 15. What dose and schedule are you on
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I'm on the same dose as you are, but on a 7on 7 off schedule....I'm not suffering from major side effects because of that schedule...just typical fatigue and some sensitivity in my hands and feet that I treat with light sanding, hand creams, and a peppermint spray.
If you find you treatment hard to bear, talk to your doctor about this alternative schedule which was developed at MSK in NYC, by my own oncologist—whom conducts clinical trials there—to minimize the SE and ensure that patients continue taking the pills. He says that's just as effective.
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Thank you Miaomix. I will see how it goes and ask for a reduction if I feel I need it. I did mention the 7/7 schedule to my oncologist but he said to start on the recommended dose. I will push for it if I suffer too many side effects. I will post over the next two weeks to let you know how it is going
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Yvette1952 I am on day 8 and am on the same dose. I thought the dose seemed high so I called the specialty pharmacy and spoke to the pharmacist. They said dose is based on body surface area which is calculated based on your weight on height. I'm 5'6" and weigh 138 libs and they said my dose sounded about right. So far I've just had some mild nausea and I drink ginger tea which seems to help and I sometimes feel a bit spacey bu wonder is it more the stress of starting a new protocul. . I will know more I guess after I complete my full 14 days.
Miaomix I would love to find that MSK study. Many have mentioned it and there seems to be a lot of people are on it. I asked the NP where I go and they said they have nobody on that schedule. I'd love to have the study that I can bring to my next appointment.
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Dorimak I'm pretty sure there wasn't another clinical trial—as they are very expensive—but I will ask my MO when I see him next. What I gathered from my conversation, was that the 2weeks on 1off was something MSK came up with on their own, to resolve the problem of their patients refusing the medication due to the severe hand and foot disease. My medication still comes with the official instruction of 2 weeks on 1off.
I personally believe we are all being overly medicated and that more medication doesn't necessarily results in better outcomes, only faster destruction of what's still healthy and working in our bodies.
Figuring out how much each of us needs it's hard, but since we know our bodies better than anyone else, and have to live or die with the consequences of our choices, I have chosen at times to disregard some of my doctors recomandations.
My first medication was Femara, but taking the typical amount was destroying me physically, mentally and emotionally. A little research revealed that the typical daily dose half life was more than a week—and since my MO couldn't explain the reason or logic for taking it every day—I made the executive decision of taking it every other day. Not only it remained effective for more than eighteen months, but my 2.5 inches hard tumor easily detected under my skin, disappeared after couple months and has not been back since.
That taught me that things are seldom what they seem in cancer treatments....but each one of us most decide what's best of us.
I went also through a period where I followed my MO instructions to the T, but that didn't necessarily help me when I experienced progression on Afinitor and tamoxifen and my cancer markers quadrupled on what would have been targeted therapy for my genetic profile....so go figure...the words science next to cancer makes me laugh....but I pray and hope for a breakthrough and a cure for this dreadful disease.
Just read this relevant article. Enjoy!
A Clever New Strategy for Treating Cancer, Thanks to Darwin
https://www.wired.com/story/cancer-treatment-darwin-evolution/?scid=2017305BN40 -
I have totally figured out how to handle the hand and foot side effects for me. I hope this is helpful for others.
I dip my hands in petroleum jelly, then put latex gloves on, and sleep that way overnight. It sounds crazy but since starting this regularly my hands are SO much better!
For my feet, I am aware that Xeloda peaks in the blood about 45 minutes to 90 minutes after taking the pills. So, I ice my feed about 45 minutes to 90 minutes after taking the pills. This has entirely stopped the extreme blistering I was getting on my feet. (I even hiked 6 miles on my feet 10 days into a cycle without blistering. Yeah!)Lastly, I have found that taking the pills always, exactly 12 hours apart seems to reduce the side effects.
Hope this helps! Hugs to all!
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Thank you Mikainsb for these sensiand useful tips! Will starting using them tomorrow morning!.
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dorimak I am about the same weight, about 5ft 1in. Good to hear you are on day 8 with minimal side of effects. Do keep me updated on how you are doing. Fingers crossed for us both
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Mikainsb: I do the same thing. Presently I'm using Bag Balm but have also used Lansinoh with the gloves. Unfortunately, when I take them off in the morning my hands get dry again really fast (dry climate in Las Vegas!) so I'm lathering them up with other creams again periodically during the day. Not as much problem with my feet as my hands. Really my only side effect from Xeloda, thankfully! Good luck!
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Cure-ious - Thanks for the information on using Faslodex/Alpelisib even after Faslodex/Ibrance was not effective. I have PIK3CA and PTEN somatic mutations, so I will probably try Afinitor/Aromasin or alpelisib+some hormone treatment, if and when it becomes available. Neither treatment sounds easy, but I'm thankful to have options when my cancer figures out how to get around Xeloda. Thanks for sharing you research.
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Hello good peeps,
I am on my third cycle of Xeloda. - the onc put me on the lowest dose - 500 mg twice a day - due to the fact that I seem to be very sensitive to drugs. It appears to be working
Verzenio almost killed me - literally - had to have a blood transfusion The side effects were so awful I felt like I was dying every day. I couldn't eat or sleep. Pain everywhere. Even after we lowered the dose my Hemoglobin was tanking so badly - it was at 6.5 - it was nearing the point where it becomes fatal. After a brief initial drop in TM's they rose again while on V.
I totally agree with Miaomix in regard to being overmedicated with no better results and the drugs causing more damage than they are doing us any good. It is surely a fact with me that the high dosage of Verzenio did a lot of damage. It has taken me since December when I quit Verzenio to actually have my body stop hurting and have my normal bodily functions normal. On Xeloda I feel 1000% better. My husband said I seem normal!! Yes, I feel normal too.
I read a paper on Xeloda - wish I had it bookmarked - that stated that the lowest dose was just as effective as the higher doses. Since I am 5'8" and 131 pounds with very little body fat, I was very concerned that I was getting much too high dosages on Ibrance and most assuredly on Verzenio. So after a lot of bitching and moaning and arguing the onc finally agreed with me and thus started me on Xeloda with the lowest dose.
After having four drugs fail, I hope this is one I can ride for a long time with success.
I actually stopped wanting to see my TM's, they were causing me such anxiety since the rise after Verzenio was quite a sudden shoot upward. So now I just tell the onc to let me know if we are heading in the right direction. I am a chicken!! LOL
Chats
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Miaomix, I am totally with you on being over medicated and yes we have to trust our own gut. Your story is incredible in that it it actually caused regression on the tumor. Dr. Bernie Siegal who wrote Love Medicine and Miracles & Peace Love and Healing wrote about extraordinary patients. It's getting better but in general cancer patients feel very dis empowered and that the pushy patient has a much better outcome.
When I had my second occurrence in the same breast five years after initial DX, nobody really knew what to do with me because it wasn't common. All they knew was I had to have mastectomy as they can't radiate again. However the lymph nodes were involved and that's where the issues came. I got consultations at Tumor board at Chicago Northwestern, tumor board at our local uni hospital, my own MO and an independent breast cancer consultation service. All four had different treatment options. I chose what I felt was right for me. I was in remission for ten years and got this latest DX so who knows if I made the right decision but it felt right at the time and I felt some of the other recommendations were just too much.
I can't find it now but the actual article but I'm pretty sure the Xeloda clinical trial was for 1250 twice a day versus 2000. I'm sure the trial patients weren't all small people. Ultimately on IBRANCE my white blood counts kept dropping dangerrously low and I had to go down to the lowest dose and frequently had to take breaks before resuming. Same with Afinitor. I'm learning that the MOs have some guidelines but can vary and experiment themselves. I guess it's what sucks about this disease because you could have a different outcome depending on who you get. My grandmother died of breast cancer in 1964. It's hard to understand why so many decades have passed and while things have improved, you would expect in 2018 that they'd have more curative and less toxic options.
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chatsworthgirl, I would love to find that article on the X dosage. That's excellent that it's working for you too at such a low dose. Maybe the patient could be counseled on whether they want to go all out, I'm not a doctor but if the cancer isn't aggressive that it might make sense to wean ourselves on to the meds because experiences like yours take away from the quality of what life we have. I got to day 10 and had to stop on Xeloda. My issues could be a number of things but I was hesitant about starting on such a high dose from the beginning.
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dorimak, I will try to locate that research paper. I have also read in another research paper that starting with a lower dose and then working up is a better choice than starting with the highest and working down.
You don't mention what your issues were unless I need to scroll up - but if X was working but had serious side effects then why not go for the lowest dose you can to see if you still get the results you were getting? Per the research, if the lowest dose works as well as the highest, then this would be a real test to see if this theory flies.
I have no side effects except for some hair thinning. Not sure if this is a leftover from the V or if the X is the cause. Pisses me off that every time my hair starts to get full again, boom another drug takes it away. Aah vanity.
Chats
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I am not very good at linking online articles so I copied the relevant parts of the study on low dose X.
Efficacy of Very-Low-Dose Capecitabine in Metastatic Breast Cancer
Abstract
Background: The FDA-approved dosage of capecitabine, 1250 mg/m2 twice daily, is often associated with treatment- limiting toxicities. Clinical experience and published reports suggest that lower starting dosages of capecitabine can be as effective as the approved dosage. In this retrospective analysis we compared the efficacy of significantly lower dosages of capecitabine with the FDA-approved dosage, using previously published results as comparators. Patients and Methods: We performed a retrospective cohort analysis of patients treated at University of Southern California hospitals who received capecitabine as the first, second, or third line of chemotherapy for metastatic or unresectable locally advanced breast cancer to determine the progression-free survival (PFS) associated with low starting dosages.
Results: Patients (n = 84) received a median capecitabine dosage of 565 mg/m2 twice daily, mostly administered as a flat dosage (not adjusted for body surface area) of 1000mg twice daily. The median PFS among patients with measurable disease (n = 62; 74% of patients) was 4.1 months (95% confidence interval, 2.9-5.7), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the 2 major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy.Conclusions: Our results provide evidence that very low dosages of capecitabine are efficacious in treating metastatic breast cancer. Large-scale randomized, controlled trials testing lower starting dosages of capecitabine are necessary in order to firmly establish an optimally effective and well-tolerated dosage.
Discssion: Our retrospective analysis suggests that the administration of low starting dosages of capecitabine is as effective in the treatment of MBC as the full FDA-approved dosage. Although it is well established that the FDA-approved dosage of capecitabine is associated with frequent and treatment-limiting toxicities, little or no efficacy data from phase 3 randomized, controlled trials exist to support the administration of capecitabine at lower dosages.
Here, we report data demonstrating efficacy of capecitabine in MBC at significantly lower starting dosages (median dosage of 565 mg/m2 twice daily, or 1130 mg/m2 daily) than any values previously reported in the literature.7-13 We first presented our results at the 2012 meeting of the American Society of Clinical Oncology. 3 Since that time, Ambros et al24 have published a similar study that replicated our results. This study was a retrospective analysis of 86 patients treated at a single breast-focused oncology practice with a fixed low dosage of capecitabine monotherapy for HER2-negative MBC. The authors concluded that a flat dosage of 1000 mg twice daily (median starting dosage of 633.5 mg/m2 twice daily, or about half the FDA-approved dosage of 1250 mg/ m2 twice daily) had a similar clinical benefit rate, as determined by objective response rate and TTP, to the full dosage based on a historical comparison of 12 prior trials involving 1949 patients. These results reinforce the results of our study and strengthen our recommendation for a prospective randomized, controlled trial evaluating the efficacy of low dosages of capecitabine as single-agent therapy, or in combinations that have shown benefit over single-agent therapy.
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Hi ladies, I've just read through several pages of this thread, though not all 322 pages ! I took my first 3000 mg today, three pills in the morning and three in the evening. I'll be 14 days on, 7 days off. I'm already dealing with yucky fatigue from previous treatments and my hair is still falling out from my last infusion of Halaven last month) (!!). I have high hopes for Xeloda, based on reading the successes you have had, and hope the fatigue will not be worse than what I have already.
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Goldie- I just use the Tea Tree Oil straight from the bottle on a Q-Tip. Have been using it regularly for 3 weeks and so far haven't had any sore and infected toes....yet.
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Chats is so good to hear your voice and get an update. Glad you're joining us. I hope X treats you well for many years to come. I'm also very grateful for that study you posted about dosage.
Hi Dorymak what an amazing story...we learn so much from each other's experiences. I hope this treatment is effective and long lasting for you as well.
Welcome Amarantha! May this medication be easy on you, and allow you to recover from the fatigue of the previous treatments. If you find the hand and foot disease to be unbearable do talk to you doctor about lowering you dose or going on a reduced schedule....that study Chatsworth posted clearly indicates that the lower amount is still effective.
I have a pet scan coming up and I dread the prospect of having to move on to a different treatment. Taking X has been like being on a long and wonderful vacation...plus the two months lapse between checkups feel like an eternity....I’m so scared of having to relinquish this dream state...this drug has been such a respite for me. I’ve been feeling so positive, I’m currently renovating my apartment with the hope of selling and moving back to Europe....something I couldn’t even conceive before....we’re still allowed to Dream, aren’t we?
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Thanks so much for the article chatsworthgirl. To answer your question on my X issues I was on my first X cycle and was fine until day 10. I woke with severe nausea, a headache and I was disorientated. They had me come in and gave me IV fluids and IV anti nausea meds. I had also started Lexapro (antidepressant) and had brain mets treated by stereotactic radiation on January and have been dealing with a lot of anxiety from the brain mets DX in January so a lot going on. My own doc wasn't there Fri so her partner was concerned it was brain mets but my own doc doesn't think so since I've just been treated.
They had me quit Xeloda for the weekend until I saw my own doc today and she's had me resume I finish four days and then a week off and I'll see my doc next month and will bring that article. I did the MRI today so fingers crossed that there are no surprises. Thanks for your help.
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Dorimak...ask if you can go on the week on and off schedule....the problems you've described seem like terrible side effects....sending you my best wishes of a promp and successful resolution...
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Miaomix thanks for the welcome. It is my belief that if you are feeling good and have lots of energy (need that for renovation LOL), then that is your body telling you all is OK. Scans are a pain in the arse. However,I have come to a place recently where as long as I feel good and normal and can do all the physically demanding stuff I like to do then that's all I care about and I don't worry.
I no longer want to know my TM's and my Pet/CT scans have been a year apart and only recently six months from the last. I am pro-active in my treatment, discussing with my onc what I have learned through my own research and I don't let him fear or bully me into anything. He can just tell me in what direction we are headed and we will make course corrections accordingly.
I believe we have many more options and given the ongoing advances in how to treat MBC I think we will do pretty well. So, don't sweat the scan. It is only one small tool,TM's are the other and even with both they don't give a clear picture. There are other factors and unknowns regarding dead cells etc. that muddy those waters. So chin up and renovate! You will be fine.
Dorimak, I did experience some lightheaded mornings and a bit of nausea when I first started X - even on my low dose - but that seemed to go away as my body acclimated to the drug. It is possible, since you are on a high dose, that your experience with headache, disorientation and even the nausea (which could be a result of the disorientation) is the result of the dosage.
If your doctor does not think it's brain mets I would trust her assessment. Remember that radiation is going to affect you as well and when cells are dying there is probably also a weird response. Prayers that your MRI shows those cells dying.
Chats
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Hi all....Check out this bit of excellent news....a breakthrough treatment announcement coming out of my hospital....
hopefully it won't take a decade for this treatment to be approved.....may we all be still alive to benefit from it!
https://www.mskcc.org/press-releases/novel-msk-stu...0
