All about Xeloda
Comments
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There is speculation that the higher folate content of the North American diet compared to Europeans, explains why the original dosages for xeloda, developed based on European trials, is higher than the tolerable dosage for North Americans. Apparently folic acid is added to many foods made here.
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For bowel problems, I take an apple pectin capsule every few days. Don't overdo, it can plug you too, but it is a natural way to add the fiber so stools stay normal-er.
Well, Mimi, that sounds like a plan. When I went on Faslodex the improvement was drastic and immediate - I had that w Arimidex. Why I went off is a long story and I am still not sure it had stopped working, I think it was the way some nurses (one nurse) gave injections and it was not correct and got into my system wrong. And later I was on Ibrance w Femara and the Ibrance was another drastic improvement. If I were in a corner again, I would want these two together.
On a Xeloda break and the breathlessness is improved so much - and now the pulmonologist has me on some RXs that will help the bronchospasm (which is not breathlessness related) and possible acid reflux at night, along with a new inhaler that I really like. If this can be fixed - the breathlessness - then I will want to remain on Xeloda because it is working. But also my heart has proven to be all right, quite excellent really. IF that was not proven I would be very afraid to continue since the breathlessness has been so horrible, walking from chair to chair even. Today I feel pretty good.
More later - I read every day.
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Welcome Jenny and Deanarose,
It looks like almost all the experienced ladies have covered most of your questions. Ibrance failed me after 8 months and Xeloda was the next line of treatment since I have bone mets and liver mets. Yesterday I saw my MO. My liver enzymes are all normal and they were off the charts. Also my tumor markers are all normal now. It's been since May that I've been on Xeloda. My MO was amazed.
No hair lose at all. As far as blood counts Xeloda lowered my red count and platelets but not to bad. I was advised to use Utter Balm on my hands and feet but I have had very little hfs. My hands get red but I work with plants and produce so I expect that's why my hands get red. My MO told me to wear only Cotton Socks. I have done that faithfully and no troubles. I'm on my feet a lot but no treadmills or pulling things with your hands. You might get diarrhea, I've had my bouts but Imodium takes care of that too. So far this is working for me. I take a little nap when I get tired but otherwise this is all working for me. My White Count came up to normal too. I hope you have success with this. Keep us posted!! Good Luck fighting the monster!
Anita
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dear dianarose, no milk ever. You can have cheese or yoghurt as snack, not having them with meat protein. That was Xeloda 101 on day one, MO said. No idea of tech detail, but she is a teaching top notch professor, among the few best in my country. She speaks with data, so I do as she says.
I had a detailed diet thread a few years back which I summarised after visiting a breast cancer nutritionist (I am a bit of science oriented person) there is more detail there.
I hope X treats you kind, I am still on it after 5,5 years!
Hugs
Ebr
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Stagefree- I am so impressed that you have been on Xeloda for that long. Do you mind me asking where your mets are? I noticed too that you have IDC. Hopefully it works as good on lobular.
I will have to research on why no milk. I only use about a cup in my cereal and rarely eat cheese and don't like yogurt.
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OK ladies, as I understand it, hand-foot syndrome is red feet, swelling and pain. Well I've got none of that. But I've got blisters. On each pinky toe, and as of tonight, the instep feels blistered. Bottom of my feet are normal-colored. Are we in the same ballpark? Or do I have something else? I'm on day 11.
Hopefully 10 hours in bed will help. Tomorrow I have only to get to the airport gate here and from the gate to a taxi at home. Meantime, 8 hours with my feet up. . .
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I too am very interested in the no milk advise. I am definitely a milk and all things dairy fan, but if in the end it will help me then I will sadly have to cut back. I did speak to a nurse regarding my nausea and asked about dairy - but she said it was ok - but then I don't think this was specific Xeloda advice. I have tried to find something on the internet, to no avail. I will ask my MO on Wednesday. I do respect your advice Stagefree, so will cut back at least. Wishing all of us well on this treatment, its so inspiring to hear of others being so successful.
I am on my first week off. MY HFS was horrible last week, but better now, especially since the blisters cleared. I think I will stick to trainers everywhere, including in the house as this seems to be the most comfortable. Also had some nausea and that has lasted these last few days - maybe its the dairy. I think my headspace is getting itself back together - and this will help me too. Also - in all this kerfuffle of my new meds I had forgotten to take my Hypothyroidism tablet for about a week! That wouldn't have helped - but Im now back on track.
Happy Weekend to all!
Sarah
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Hi pajim. I'm finishing my first cycle. I got blisters on each of my hands, where the thumb meets the palm, on about day 10 of my first cycle. I attribute it to friction from gripping the steering wheel. I am on day 6 of my week off and it is still tender but blisters have receded. Could your shoes be rubbing these spots?
Hope you feel better.
Mary
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Sarah, I am only wearing trainers. Miss my cute shoes. I just got gel insoles to see if extra padding will help through round 2. Dreading starting up in Monday but I'm like you and hoping better head place makes a difference.
Mary
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I wish you well Mary, I got my blisters because we walked to a restaurant the Saturday night after starting the previous Thursday. I ended up, with friends help, keeping off my feet when I could for 3 days and they did heal up somewhat. So I am going to be much more careful next cycle, and maybe my MO will adjust my dose. A friend, who actually did a 39 mile walk for breast cancer recently, said there was a lot of discussion about how to look after their feet and suggested moleskin to help with the pressure - you can get it in the foot care section of the pharmacy/drugstore. (edited for typo)
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Do any of you experience Xeloda-related diarrhea and/or vomiting during your week off and not your weeks on? I would have thought the week off would not be the time for gastro side effects, yet last month in the middle of my week off I had a bout of diarrhea (just one day), and this month in the middle of my week off I had a bout of pronounced GERD, diarrhea, and vomiting all in one night. Granted, I ate too much spaghetti for dinner, but that alone would not typically cause all this for me.
Also, does anyone have GERD symptoms -- heartburn, burping -- connected with Xeloda? It's been noticeable lately and is scaring me because I had bad GERD before diagnosis and treatment of liver mets. The enlarged liver caused it. Now, lack of pain and normal TMs point toward NEAD again, but there is the GERD. (No recent scan.)
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Diana, I have bone & marrow, liver, skin, pleural mets. ShetlandPony I do have occasional diarrea, GERD stmptoms... all of which I try not to worry about. Meds help.
I see the milk issue will be discussed further.. well, I don't crave for it anyway, in my case, and cheese & yoghrt (fermented) aren't forbidden. I love my fruit with yoghurt
as a snack. 0 -
Good trip to you Pajim.
I have been off most dairy for years. And I love dairy. I am selective on cheese, desserts. Yogurt is a go-to for snack but only with no added hormones or sugar. Yup, plain whole fat yogurt. And when I take my night dose of Xeloda before bed I often take it with yogurt and fresh fruit. Or cereal and organic milk. I am usually hungry and thinking the cancer cells are going to swoop in for a snack and get whalloped with the Xeloda while they are after the estrogen-sugar-fix. Does anyone think that could be happening, or am I delusional?
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Anita, how much of a hit did your platelets take? I'm counting on X being easier on platelets than carbo was but did notice yesterday two unusual bouts of bleeding from a paper cut and a razor knick. Wondering where my platelets might have plummeted to. They better get their act together. While obviously causing me no discomfort, low platelets have a history of causing me treatment problems.
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Shetlandpony,
I had one bout of diarrhea on day 2 of my off week. I have only completed one cycle so far. I too attributed it to what I ate, but my MO advised that it was likely a side effect, and that often side effects will happen 2-3 days after we stop taking our pills. I suspect every cycle will be different, which is frustrating. I don't want to take "preventative" Imodium, every day.
Anna
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Kaayborg,
Ibrance took them down low. I think the normal range of testing would be 140-425 x 10E3 cells. In July mine were 113 then they went up 132 now down to 113. Seems like they never get up to normal but my husband said it's not so bad. He's an MD so always checking. I notice I bleed from a little cut easier but if your platelets get too low you can find your self in trouble. What dose of Xeloda are you on? What are your platelet counts? Keep me posted Xeloda is working on me so far.
Anita
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Bluebird, My calcium was low even taking Caltrate twice a day so my MO told me to drink milk. Not good. I've always had an issue with dairy and diarrhea anyway but this was awful. For almost an entire month eating cereal with milk gave me bad diarrhea. I have a friend that has a bad leukemia so I asked her if she gets sick on chemo. She told me that you can develop a chemo lactose intolerance. My husband got me milk called Lactaid free and I haven't had the problem. I do feel like I get Gerd sometimes too. Hiccups and burping then it goes away. Seems to be more noticeable when it's my week off. Also tomatoes and acidic fruits do it to me. Now I'm making homemade applesauce and that hasn't bothered me at all. Hoping the pectin works in my stomach. What a joy dealing with these issues. Hope this helps.
Anita
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My DPD test was negative so I'm back on Xeloda, 2000 a day reduced from 4600. So far so good, though last time the relentless diarrhea didn't kick in until the 8th day. I hope if it happens again it's much less severe - I have no desire to go to the hospital again. In looking over the CT scan I saw my small intestines were inflamed and swollen up to 3.5 inches - normal is 1 inch. My feet did hurt a lot after the 1st cycle and now I see all my calluses are peeling off. I guess this is the HFS?
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Anita - I will have to try the Lactaid someday. I like milk and cereal but always feel like I just shouldn't. Dairy does provide calcium but the leafy veggies do moreso if they are grown right, hopefully organic. There are a lot of foods that will provide.
Holding off on Xeloda for another week until the steroid rash and attack is clear. Then a scan and Xeloda. Soon.
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Bluebird, I have the same hypothesis, that maybe its ok to eat a sugary dessert if I'm on chemo, since any faster growth would just make those cancer cells more vulnerable to the chemo hit. I have absolutely no idea if this hypothesis is correct, but I am enjoying the chocolate!
That is very interesting that your onc, Miss Monty, said you could expect side effects to happen two or three days after going off the pills; and that Photogirl, you notice more gerd on your week off. Hmmm. I have Immodium handy for diarrhea, but so far a day of the classic anti-diarrhea diet of bananas, (white) rice, applesauce, and toast (BRAT) has worked for me. So far. See, there's another excuse, I can eat white rice instead of brown to treat a side effect! Hey, it's basmati, the good stuff. Photogirl, homemade applesauce sounds amazing. I found some store-bought that is made with Gravenstein apples, and it's quite good. It does sound like you are lactose intolerant, as I am. Real yogurt and aged cheese (I get grass-fed) are fine for me, milk and ice cream, not fine. You have lactase enzyme pills for when you occasionally need ice cream, right?
Minxie, I'm glad you are able to resume X at a lower dose. I think you will see a big difference with this dose reduction. Yes, the peeling callouses sound like a hfs thing. From what I've read, hfs can particularly affect calloused areas.
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Shetland - right, I think that every morning when I break-fast. Seems like there are sugar loving cells, estrogen loving, progesterone loving. Since Xeloda covers more than breast cancer, it seems a good choice.
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Minxie, glad to hear good news from you. Hope that lower dose helps and the foot issue gets under control quickly.
Shetland, the sugar theory makes me laugh as I've been living by the exact same logic all the while.
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Kaayborg, I raise a glass of sweet cocoa chai to you!
I have good news. After five Xeloda cycles, my TM is now in the low normal range, like it was when I was NEAD. I hope all of us here can get there and stay there. Staying the X course and breathing a sigh of relief for now.
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Very good news Shetland.
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Fantastic news Shetland. Long may your levels stay low!
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Shetland- that's so awesome!!!!!
I am on day three. So far so good. The one thing I did notice since I started is my nose runs constantly. It was the same thing when I did CMF . Anyone else have this?
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Way to go Shetland.
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I have heard of the running nose and that was on another website forum where a lot of women had it. The other day I read this - see runny nose under RARE, just before Healthcare Professionals closer to the end. https://www.drugs.com/sfx/xeloda-side-effects.html
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When checking for a link, I found this from Canada on Xeloda. Think it is a must read and save. A PDF
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&so...
EDITED TO ADD this is interesting to read. Esp since I have the MTHFR gene characteristic.
"MTHFR: The MTHFR (methylenetetrahydrofolate reductase) gene is responsible for encoding the eponymous enzyme, which is responsible for the activation of folic acid to its usable form, L-methylfolate. MTHFR mutations have been associated with both increased risk of cancer (adding, though not necessarily BC per govt reports) and increased risk of side effects from cancer therapy, among other things. Genotyping MTHFR may help predict toxicity to drugs like lethotlexate, methotrexate, fluorouracil and its prodrug (Xeloda), oxaliplatin (Eloxatin), pemetrexed (Alimta), and mercaptopurine (Purixan), just to name a few. To avoid toxicity, some patients with low MTHFR activity (poor metabolizers) may need supplemental L-methylfolate in order to bypass the defective folic acid activation pathway."
https://www.researchgate.net/profile/Joseph_Ciccol...
and this http://www.sciencedirect.com/science/article/pii/S...
basically means "Fluoropyrimidine toxicity can be predicted by certain pharmacogenetic markers [7]. A main marker is dihydropyrimidine dehydrogenase (DPD) [8]. DPD is the rate-limiting enzyme for fluoropyrimidine catabolism that eliminates >80% of administered 5-fluorouracil [9]. The most predominant polymorphism associated with DPD deficiency is DPYD*2A" https://bmccancer.biomedcentral.com/articles/10.11...
????? Has anyone's clinic or oncologist tested them for this DPD or MTHFR or TS? It is a lead issue in toxicity and there are ways around it so tx can be used.
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Shetland, congratulations on the marker results!
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