All about Xeloda
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Awwww......thanks Giovanni! I figure if my story helps one other person, it was worth it to write! Just like you sharing the info about the cream! That's why we are here, to help others with selflessness, humility and gentlelovingkindness! ;-)
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this is day two of my Xeloda - about to take am does
No side effect yet / I think my fatigue is from all the stress:(
What is freaking me out - this is going to sound weird sorry - during my last treatments in 2006 I was sick - sick before they could unplug the iv - sick for days and days - puking dizzy sweaty wanted to rip off my skin- it was terrible!!!
Now I have these little chemo pills ??? Is this even going to so anything? Are they even strong enough to kill the mets??
It's just to weird for me
I'm happy to not puke my brains out for 14 days or loose all my hair!!!
But is this chemo strong enough to get the job done?
I want to do what ever works to kill this shit - even puking for days or what ever - I want hard core cancer killers!!!
So can you please share you early days on Xeloda and what is happening currently:)
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I'm getting ready to start Xeloda tomorrow. Like you, poniesandpuppies, I was sick as they were pumping the chemo into my body. I dry heaved for days, and only felt well enough to do anything for about 6 days of the 21 day cycle. So, for this go around, I want NOTHING to do with being sick. I want SE free! I want to enjoy everyday. Hopefully, we both get our wishes granted for this treatment-SE free AND effective!
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How come my head says if the chemo is not making me extremely sick then its not strong enough????
I might be going crazy!!!
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I think we are all conditioned to think it needs to make us sick. Think there may be studies that prove you don't need to be sick for it to work.
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In this link on Xeloda side effects (http://chemocare.com/chemotherapy/drug-info/Xeloda...) under the heading "Important things to remember about Xeloda side effects" it specifically says that "There is no relationship between the presence or severity of Xeloda side effects and the effectiveness of the medication."
I don't know if you saw 60 Minutes last Sunday (12/7) but they had a segment on a doctor who's trying to find the cure for cancer and one of the things he said was that he believes chemo works best when administered in frequent, low doses. Here's a link to the transcript of the segment (http://www.cbsnews.com/news/billionaire-doctor-fig...). It's encouraging to read what this doctor is doing.I've only been on Xeloda since late June but I know I've read of a number of people earlier in this thread that talked about taking Xeloda for several years with no major side effects. I had an up and down couple of cycles in the beginning where some were worse and then the doctor adjusted the dosage and things were better. I think it's a process in the beginning to find the right dosage for your body but if you're lucky you can do that and have the drug work at controlling the cancer for years. My doctor has someone who's been on it successfully for five years now and previously had someone on it successfully for seven years. I think most people don't get that long a run but a couple of years seems possible.0 -
Yes, Xeloda is strong enough even though it is just a pill. I started this med in Feb. 2014. My May PET scan showed prominently decreased activity in my several bone mets. The PET scan I just had showed the several prior metastatic bone lesions exhibit no hypermetabolism. Wow. T12 which was never active before showed metabolic activity, but the radiologist felt it could be degenerative versus early metastasis. I was so thrilled and now able to enjoy the holidays. I did ask my oncologist what long term side effects I could have from taking this another year, and she said very few but can't remember her exact words. Best part of this med is that it has never made my stomach sick. Diarrhea yes but I can deal with that. I still get to enjoy my weekend wine.
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I can chime in for my wife: one year ago she felt she was dying; she had trouble walking, sitting and sleeping because of back pain caused by all of the bone metastases in her spinal chord and ribs. Two months after she started Xeloda* her quality of life improved dramatically, she started feeling much better. The back pain disappeared, she was able to exercise again, and she keeps working full time.
Side effects:
- stools are softer, and she goes to the bathroom much more often than she used to, but I think that the diet change has helped to keep that sid effect in check;
- feet were peeling and ulcerating, but we were able to minimize that with uridine;
- short term memory has worsened;
- tolerable acufene problems;
- jittery vision at times;
- wet eyes as a reaction to eye dryness (seems an oxymoron), are now helped by eye drops.
Note*: to keep the record straight, we started modifying our diet to something close to macrobiotic (80%), at the same time we started Xeloda.
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thank you everyone:)
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I'm on Taxol AND Xeloda, so it's hard to determine what is causing what, in terms of side effects. My Xeloda was reduced because the "runs" were so bad. I almost had a "Bridesmaids" moment! So, now I take 1000mg 2x a day instead of 1500mg 2x a day, and that seems to have helped some. But, like some of you have expressed, I'm then worried (a little bit) it's not enough. It's a process. This whole thing, one day at a time. Patience is key.
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Hi All: I was going to wait until the New Year before I wrote about what's going on with the Xeloda after taking it for a while. This is the off week of my second cycle. I see my MO tomorrow. I don't know if I'll be able to get my tumor marker results since being on the X. So far so good. I've not had the big d or c. I started out working on my feet with a vengeance. I now just lotion them down when I think about it. I eat a lot of fresh pineapple, maybe it's helping with the nausea. I bought a pair slippers with memory foam, maybe that's helping with the hfs. I don't have any signs yet and hoping I don't.0 -
just finished taking my last dose of week one tonight - tomorrow start of week two - ummmmm so other than being tired this isn't too bad - first couple of days had upset tummy but that cleared up fast -still riding horses every day and walking dogs --- hmmm --- things have sure changed in 9 years since my original diagnosis when I did ACT which made me sicker than a dog------- I hope to hell that this stuff is working and is actually doing something to kill all my mets
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So good to hear Ponies and Msca. I have one more day and I will be finished with week one. Tired, rumbling tummy, some nausea setting in last couple days. Trying to refrain from Zofran, as I don't want the additional side effects from that. I'm taking probiotics everyday. I like the idea of pineapple. I was taking digestive enzymes but stopped because not sure if it would interfere with Xeloda. Anyone know? I'm not loving this stuff, but I know it could be way worse. Just hoping it works and reduces the tumor load!
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I also make sure that I eat half of my food, take the tablets and eat the other half , and drink a cup of water. I try to make a buffer between the pills and my food. It may be helping the pills to digest gentler. (I don't know).My MO. told me today that I don't have to stick to a 12 hr. schedule when taking them. I haven't been doing it anyway. I usually have a 2 hr. window. He told me to take it at breakfast and dinner so I wouldn't forget to take it .I hope this works for all of us too.I won't know if my tumor markers are going down until next month.
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Hello, everyone, I'm new on Xeloda. I'm starting week 3 of my 2nd cycle. I'm taking it as part of a clinical trial along with Herceptin and ONT-380, which is the trial drug. I have scans next week, so I'll see then how it's working. My question is this: have any of you had your liver enzymes jump up drastically? In one weeks's time, my ALT went from 66 to. 139; AST went from 69 to 151; and Bilirubin went from .9 to 1.4. The onc said something about a possible blockage and the possible need for a stent. She's waiting to see what Monday's scans show. That sounds a little drastic to me. If I had a blockage, it seems as though I'd be having some pain. I'm currently taking 4000 mg per day. Is this a situation where lowering the does may help?
I've read this entire thread over time but don't remember if this has been addressed. I've learned a lot from your vast knowledge and willingness to share. I look forward to becoming an active member or the Xeloda group, assuming I don't have to go off the drug. Thanks in advance for your help.
Hugs, Trish
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This is my week off on a 2-on, 1-off schedule. It's also Chanukah, and the custom is to eat fried foods, usually latkes (potato pancakes). I'm gonna brag and say I make THE BEST latkes.
Fried food? On Xeloda? Note to self: stop eating so many latkes!!!! I felt fine after a couple but I kept going. Mistake. BIG mistake. Tummy is dancing right now. I'm not joining in.
Sigh.
Happy Chanukah to all who celebrate. And watch the latkes.
Leah
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Hi Trish: It hasn't happened to me. I think if there is a blockage your scans will show it. I know it's hard to be patient when we get any kind of negative results.Sometimes we don't know anything is wrong until we get scanned, because we don't have pain.0 -
Happy hanukah Leah. I say take a zofran or compazeine and enjoy
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Leah,
My wife and I modified drastically our diet when she started Xeloda: we moved to something very similar to macrobiotic, but not too strict. From time to time, in occasion of holidays we indulge wine, carbohydrates, fats and animal proteins. I also keep a graph of the tumor marker that is measured every 4-6 weeks. What I've noticed is that if the diet escapes are isolated episodes, there is almost no consequence. However, when we are less strict for several days in a row, then there are spikes in the tumor marker.
I've read several studies on the interactions between one own's microbiome (i.e. what used to be called the intestinal flora) and cancer, and the findings are there. Diet influences the microbiome a lot: imbalanced diet causes microbiome imbalance (aka dysbiosis). A balanced microbiome helps us fight and prevent cancer.
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I'd be interested in reading up on micro biome and cancer I'd you have any links or books you would recommend. I have been following a mostly plant based diet with occasional fish. I really try to cut breads and pastas too, but I have a thing for rustic sourdough. Very seldom lay, I enjoy a glass of red wine. Not sure it has helped much with cancer since I've just had an pretty big progression while being pretty strict with my diet. Would love to learn more and maybe an few more tweaks are are needed.
Taking my last dose of Xeloda this morning. I used Ativan cut in half to combat nausea yesterday and it seemed to help. Looking forward to my week off
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Bibliography no.7 below is freely available online; no.6 is a very entertaining book you can get at your local library. For the others you can get an abstract at PubMed, but the whole articles are probably subscription articles; however, if you go to the library of your closest university hospital, they are subscribers and you should be able to download without paying.
Regarding the diet we thought we were kind of strict enough, but then met with a preventive medicine doctor, who really helped us change and be strict with the carbos, and that seems to have made the difference. My wife has had a weight problem all her life since age 16, but after changing the diet she lost 30 lb in 3-4 months. The oncologist was worried about the weight loss, but the preventive medicine doctor encouraged us to keep going, and said that most doctors do not have much of a training in nutrition. This video is what sold me on this doctor.
Bibliography:
1.Turnbaugh PJ, Ley RE, Mahowald MA, Magrini V, Mardis ER, Gordon JI. An obesity-associated gut microbiome with increased capacity for energy harvest. Nature. 2006;444(7122):1027-1031.
2.Mazmanian SK. Capsular polysaccharides of symbiotic bacteria modulate immune responses during experimental colitis. J Pediatr Gastroenterol Nutr. 2008;46 Suppl 1:E11-E12.
3.Turnbaugh PJ, Hamady M, Yatsunenko T, et al. A core gut microbiome in obese and lean twins. Nature. 2009;457(7228):480-484.
4.Castellarin M, Warren RL, Freeman JD, et al. Fusobacterium nucleatum infection is prevalent in human colorectal carcinoma. Genome Res. 2012;22(2):299-306.
5.Kostic AD, Gevers D, Pedamallu CS, et al. Genomic analysis identifies association of Fusobacterium with colorectal carcinoma. Genome Res. 2012;22(2):292-298.
6.Blaser MJ. Missing Microbes: How the Overuse of Antibiotics Is Fueling Our Modern Plagues. 1 edition. New York: Henry Holt and Co.; 2014.
7.Xuan C, Shamonki JM, Chung A, et al. Microbial Dysbiosis Is Associated with Human Breast Cancer. PLoS One. 2014;9(1).0 -
So I'm on my second week of the reduced dosage of X. No reduction in se's that I can notice.
Just did some gardening (I'm knackered!) for an hour or so & noticed my big toes have suffered (Weird, its not like I was gardening with them, must have been the way I was standing/crouching). One has split the skin & the other is bleeding.
I'm so tired it feels an effort just to walk (like moving thru treacle or something)
It will be interesting to see what my scan reveals next Wednesday (Christmas eve!) - my markers are going up. Won't get the results till after Christmas though.
Still have lots to do to be organised for Christmas- have most of the family coming over (as well as the 4 of us)...
I don't know that I've got the energy to change my diet- its not too bad, but maybe every little thing helps?..
kt
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KT1966, you mentioned being tired which reminded me that my wife says she has much more energy since she switched diet.
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kt: I cook in stages. I made a homemade chicken pot pie and homemade chili today. I started Monday. I cooked my chicken and browned my ground beef. Today I was able to finish. My broth that I had left from the chicken will go in my dressing for Christmas. All I'll have to do is add my cornbread, cream of chicken soup,cream of onion soup and my Lipton onion soup mix. I'll probably cook my cornbread Saturday.0 -
Trish,
I took Xeloda 2 months , there was no problems witl liver enzymes. Liver enzymes rise fron chemo sometimes , but to my knowledge not xeloda. As for the obstruction , it will show on the scan. Good luck to you on the trial. :
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Has anyone had a stent put in for a bile duct blockage? If so, what was it like? It seems as though I'd have pain with a blockage. No pain yet.
Woody and mescal, thanks for your responses to my original post.
All the best to everyone.
Trish
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Wondering about age and tolerance to this treatment? Could it make a difference?
I'm 39
Newestmanageable symptom - acid reflux.....
Also wondering about does the treatments start building up in the body? So then more side effects as you go along?
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Hi Ponies,Just anecdotally (meaning just my experience and my mother's experience taking Xeloda), yes the side effects can be more serious in the elderly and yes, the side effects are accumulative.
Mom took Xeloda for stomach cancer when she was 84 years old. Massive diarrhea, hospitalization for one week during which the diarrhea could not be stopped and she died six weeks after starting Xeloda. BUT - she was eighty four years old.
I've been taking Xeloda for over one year for MBC. Two weeks on/one week off. My hand/foot syndrome never goes away even when I was given a two week break just to see if my cruddy skin would heal (it didn't). The fatigue is gradually worse the longer I take Xeloda. My side effects never get less, only worse.
However, I've been taking Xeloda since August, 2013 and my PET/CT shows complete remission of my liver mets.
Kessala
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I talked to my MO about that Ponies, and she said that most SE build over the first month or two. So, they might not appear immediately.
Ok, back to diet. Thank you for posting Giovanni. I watched the video and I agree wholeheartedly. Can you point me to specific studies on Pubmed? It took me to a general page. Hopefully, I'm not being a lug head here. I will do some searching myself, too. Very interested in any studies that show a real benefit when it comes to diet. So far, I've gone to a mostly vegan diet based on the protein pathways that have been shown to feed cancer cells. Not eating meat and dairy has not been a big issue for me. I miss eggs, the most. My neighbor brings me fresh eggs from her chickens and they are soooo much better than what I get from even the farmers market. My kids enjoy them, at least.
My MO shared with me that limiting breads, pastas, and cereals while on Xeleoda was a good idea because of the added folic acid. Seems that these fortified foods can intensify the side effects of Xeloda. I don't eat much of these, and when I do, I tend to eat the gluten free types which are not usually fortified with folic acid. Evidently getting folate in its natural form is not as big of an issue. Anyone else hear anything about those?
TGIF everyone. Enjoy this weekend
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Just throwing my experience with Xeloda into the mix. I am 63, used Taxol from April to July on a weekly schedule, then started X in Sept. I began on 3500 mg in a two weeks on, one week off pattern. I am now down to 2000mg a day, same pattern. I had severe foot pain on the higher dose, but am much better now. I treat the dry skin on hands and feet with O,Keefe's cream. My energy is almost normal, esp. on the week off. My markers came down a bit. My scans show stable disease, no progression. It is so great to have hair again, and to be able to have mental and physical energy. Since quality of life is my top priority, I am quite pleased.
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