All about Xeloda
Comments
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I'm sorry you are having HFS symptoms. I hope it resolves soon and that you can continue on the reduced schedule.
Now go tell everyone your not allowed on your feet and have them do all your weekend chores
A girl can dream...0 -
Sorry you have to deal with the feet issues. I had a brief stint with HFS while on AC. Doc held back the weekly infusion and it cleared up. Hope it clears as quickly with Xeloda.
Has anyone heard from Naiman? She mentioned that she was packing an overnight case but it's been a few days and I thought we'd heard something soon. Hope it is going OK with her.0 -
Hi everyone, I don't post much, but I follow this post. I've been on Xeloda almost 10 months.
swannay, I've been on Xeloda since August 2012 and I get occasional bone and hip pain. As of April scans I have no bone mets. I think it just md be a side effect. All I ever took was Tylenol or an Aspirin. It usually works for me.0 -
One of the blood test my PCP ran came back showing I do have congestive heart failure. I am on 80 mgs. Lasix daily and latest blood work showed it lowering my potassium. Potassium has been an issue for me since starting chemo so she increased my potassium supplements.
I don't know if it is from Xgeva but I got the Xgeva on Wed and I was calling about my feet swelling more on Friday and since the it has just gotten worse. My muscles and bones have been so sore since I got the Xgeva/ I have a low calcium level and I know you need to be careful givingXgeva if your calcium is low. My new oncologist, after my latest blood work told me to also take 2 Tums in addition to my 1200 mgs. Calcium as it was low.
So maybe it is the Xgeva; maybe it is a combination of the Xgeva and the 4000 mgs of Xeloda that I am still on
Right now my feet are burning horribly. Can't sleep. I just want the congestive heart failure to leave -whatever set it off, hope we figure it out so it doesn't happen again. Echocardiogram didn't show any damage to my heart function from the chemo drugs so that was great news. I have scans on Wed. I am worried as to why my bones are so sore to touch - that only started after the Xgeva and I am praying it is truly from the Xgeva and that my bone mets are not marching forward. If they are, I'll be having a rod in my right femur very soon
Oh, new oncologist also told me she liked to use Affintor with Xeloda - mentioned that several times so won't be surprised if she adds that to my treatment.
Suggestions, thoughts anyone?
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Hi, there,
I am just finishing my third bout of Xeloda. I had mouth sores before and the big D. In fact I was taken off it because of diarrhea. This time I'm just really tired. I know that's a side effect, but I'm wondering about the hand and foot syndrome. I haven't had any blistering or skin cracking. But, my feet and ankles are really swollen. Especially my left foot. I haven't seen anyone else mention this, but I'm sure it's just another side effect, right?
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Hi there,
It's me again. Sorry to be such a pest, but what I'm really worried about is that I have mets to my liver. My Dad died of cirhosis of the liver. He bled and bled if he got the smallest cut. Whenever I get my blood tested over the last year or two they always asked me "Are you on blood thinners?" I don't bleed like he did. We had to take him to the hospital to get it stopped. But, then he had this terrible swelling, especially in his legs and feet, and, of course, in his liver. This swelling bothers me. I've had CT scans and MRI scans, so I'm assuming they tested me for liver mets. I guess I'm just being a worry wart.
Thanks for any advice.
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Lauraontari ... if you have liver mets they should show up on the CT scan or Pet scan. I believe your foot pain is due to HFS. My understanding is the skin gets red, dry, taught, thick, sore, etc. I believe that could lead to swelling if inflammed, etc. I started getting the HFS after 8 days (my feet hurt and were red, hard to walk), I'm off Xeloda for 7 days and to resume at lower dose, hope I tolerate. The dose can be adjusted a lot to ones indiv. metabolism, is my understanding. More is not necessarily better if you are getting side effects. Some women get a very good response (I'm told) to a lower dose. Hang in there.
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Thanks SyrMom,
Thanks reassuring. These medications sure throw a mixed bag at you. It's good to have the support of people like you.
Have a good night.
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LauraOntari ... P.S. try soaking feet in cool water and/or with epsom salts. I'm told keeping the blood vessels constricted is better. Then lotion up!
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SyrMom...Good idea. I'm off to do that right now. Thanks.
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I've been on Xeloda for 8 months. The HFS is the only symptom that I have all the time. Other SE's come and go but my hands and feet are always dry, peeling, sore and sometimes have blisters. I recently switched to the 7/7 schedule and that seems to help a lot. My dose is 1000 mg in the AM and 1500 mg in the PM. I still try to walk as often as I can for exercise. After walking some days my feet burn really bad. I have found that if I put them in a dishpan with Aloe Gel and just squish the Gel around it feels wonderful. Of course after I'm done I have to lather up again and put on socks but it feels great for a little while.
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Getonwithlife:
Sounds like a good idea.
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Aloe gel? Where do you buy yours?
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I read that the most SE's show up around day 79. Anyone agree? How soon did your HFS show up?
I am currently having hip joint pain. Scans next month - I can wait.
Wishing everyone a great Tuesday!0 -
Has anyone found a product that works well on sensitive heels? My heels are sensitive most of the time, now the Xeloda puts them over the top. Heels cushions don't do much. Wonder if any of the creams work particularly well on the heels. Somewhere on this thread I read Ban roll-on deordorant worked well on the feet (?) Wonder if anyone has used on heels? Thanks ...
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I use Gold Bond Foot Cream. Softens and cools. I hope you find just the right product to get some relief!
Will your insurance pay for a custom pair of insoles? If you strike hard on your heels, they may help.
I also like the brands Clarks and Eco for shoes. I may get some Crocks to try. Another friend likes those. I try never to go barefoot. I have mostly hardwood, throughout my home.
Hugs!0 -
Crocs sells a cute little flat with cut outs at the heel. The style is Kadee. In general, I have a hard time finding cute shoes due to issues with my achilles tendon, but I have been wearing these for a few years with much success. These are appropriate for the office (well, maybe not the leopard print version). I have them in brown, navy and black.
I started wearing them again a few weeks ago when the weather warmed up, and haven't had any Xeloda-related foot issues while wearing them. The crocs material is sort of cushy, and the cutouts help keep my feet cool. Most of the heel is cut out, so there's not a lot of friction there.
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You can buy Aloe Gel almost anywhere, I got mine at Rite Aid. Its usually with the suntan lotions and stuff. The other thing that makes my feet feel good are Gel Booties that I have found at Bed Bath and Beyond. They are a little pricey $19.99 but you can hand wash them and reuse them. The package says they work for up to 40 treatments.
If I know I am going to be on my feet for a long time I wear these. Also when my feet are really bad I will wear these for a day. They are way too hot to sleep with but they really make my feet feel great after I have had them on for a day. I really wish they made gloves with the gell lining but I haven't found any yet.
These socks are made by earth therapeutics, I believe you can find them on their website earththerapeutics.com or try this link http://www.earththerapeutics.net/prodinfo.asp?number=95315
I have tried their aloe moisture socks and gloves and they don't really do anything for me.
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TM continues to go down but the swelling in my ankles is getting more persistent. Today I can feel the tingling that tells me they are starting to swell and it's just 9 am. Usually I can wait till 9 or 10 to get my compression socks on and then they don't bother me till evening time.
Naniam - I've been getting Xgeva since last August but it has only been in the last few months that I've noticed the ankle swelling. I'm wondering about Xeloda. Or maybe it's unrelated to both.
I go in for an echocardio this Friday. At least there is no fasting or no liquids or no standing on your head for this test. I am more than a little worried that this is heart related on not just a side effect from something.0 -
Ladies haven't posted before but was reading what other women were experiencing while on Xeloda and Xgeva, for I've had to go off and on also because of side effects. Someone asked what is a good cream. I found the one that worked best in the past and has kept my feet from burning is Kerasal I like the cream but it's hard to find the Kerasal ointment is greasy but works really well, but have to wear socks after applying. This used at night and in morning or after soaking has healed my feet so well that doctors even said what are you using and made a note of such to recommend for other patients. You can find such at Wal Mart, Target, CVS and even Rite Aid in the foot department. Hope this helps any of you suffering from such. Just a note there is also Aloe Vera Juice which is like water, I keep mine in the refrigerator and pour over feet if they get hot or first sign of burning, it also helps for mouth sores because you can gargle with it or even drink such. It's found in Whole Foods or some grocery stores have such.
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I use the blue goo at walmart and in the hot weather,which tends to agrivate hs i use henna make a goop and put it on the info is on the roche web site i believe i keep it in the fridge so its cool when u put it on. also seen this on the colon cancer web site.it healed grade 3 from a turkish researcher. hope this helps. My ? is did anyone have their blood counts double in a weel i thrilled but concerned it might mean an infection any onput would help thanks
love and light chris
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Braids my WBC went from around 1 to almost 4! I won't know how to live without neutropenia! LOL My RBC's are almost in normal range however my Hemotocrit is still low.
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Hi, there
I saw my oncologist today and she was really concerned about the swelling of my feet and legs. I thought it was just regular HFS, but she sent me down to ultrasound because she wanted to make sure I didn't have a blood clot. Is this edema and not HFS? Any advice would be appreciated. Thanks.
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Sounds like edema which is the same thing that I have right now. HFS can be very nasty so it is probably a good thing that it is just regular swelling. I don't remember any swelling with my short experience with hand/foot syndrome. Just the painful feet that felt like either I was walking across glass shards or that the bottoms of my feet were covered in blisters. Luckily I got a chemo break and that was all I needed for it to go away. That was from my original AC chemo, not Xeloda.
Of course the next thing is to figure out why the swelling is happening. I had an echo cardiogram today to rule out congestive heart failure. I won't know the results till my next onc appointment in two weeks but I really don't think it's CHF. The chances are much better that this is the result of a drug or combination of drugs. Or it could even be a flare up from the taxol that I was given 3 years ago. In the meantime I just wear my compression socks to keep the swelling down and put my legs up on the recliner.0 -
Hi Ladies, Joining you here. I'm on my third cycle of Xeloda with one dose reduction. I'm 1800 X 2, two weeks on and one week off. I'm not sure what the dose is compared to others since its calculated by body mass - I have the formula somewhere if folk would like to do exact comparisons.
Sideeffects: Maybe too much info but confirming that my experience is much like the rest of you.
Hand /Foot - check, was grade 3 first round and is now sitting at around 1 with lots of TLC. There is no doubt that use of hands and feet aggravates this problem for me. Cream works fine until I exercise or spend too much time typing. My current plan - use a basic heavy duty cream mositurizer and gloves often during the day. I add a grease hand repair ointment - Burts bees hand salve or bag balm to the fingertip to first joint as things get worse during the cycle. I use the same mositurizer strategy on my feet at night with light socks. The earth therapeutics gel booties are a god send - I keep them in the freezer and put them on after exercise. I also use cold bean bags on my hands when they act up after typing - or even keep them beside me and take "chill" breaks. I haven't tried henna. I wear crocs most of the time and bought new exercise shoes with extra padding in the sole (made for heavy people who are walking long distances).
Swollen ankles - check, not sure what this is about - I also had the problem on Taxol and gemzar. It went away when I was off chemo. Feet up as much as possible and exercise really helps bring them back to normal. Sitting still makes them much worse. My onc measures them but so far isn't ringing any alarm bells - I think its worse if its in only one leg/ankle as it might mean a vein thrombosis or if the swelling is very significant and doesn't vary.
Digestive issues - check, pretty variable (too little and then too much) but at the new dosing is manageable. Nausea seems to be very associated with how much I eat - I'm making meals smaller now. My onc thinks that diarrhea can also be linked to food quantity. We'll see if that turns out to be true for me.
Fatigue - check - I have discovered that if I dose at lunch and then in the late evening (11:00PM) I have a pretty normal and productive morning. My onc says I can do whatever timing I like as long as I keep to spacing over 9 hours apart with 12 being ideal.
Random bone pain - check - this is a listed side effect but I like to think its bone mets healing. Last time my bones hurt during chemo they showed a major healing on the next scan.
Muscle spasms - check - I blame this on the Xgeva but means I have to be much more careful about calcium levels and magnesium levels than I have in the past. We're now watching this much more closely in blood work.
Moody - check - If I don't do something mentally healthy every day (Yoga, meditation) I get really unhappy. I remember Soeil talking about feeling depressed on this drug.
Insomnia and wierd sleep - check - I am wired while also exhausted. Am thinking about trying a sleep med.
Thanks for all your ideas ladies, they have been a great support as I venture on with this drug. Scans after the next cycle (3) - although my Onc says often Xeloda doesn't show its power till after four or more cycles.
Best,
Sophie
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So apparently ankle/foot swelling is another side effect. Does it go away?
Do any of you have problems with indigestion from Xeloda? If so, what do you take? My onc just switched me from Lexapro to Celexa and I found that it has a major interaction with Prilosec. So as of yesterday I stopped the Prilosec and now am waiting to see if the indigestion comes back. If it does, I'd like some suggestions. I tried Nexium for three months but found that it was affecting the taste of my food. I got to the point of the thought of vegetables would almost make me nauseated and I love vegetables! A month after stopping the Nexium I finally got back to normal on my food tastes.
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AnaCG, I've been a longtime user of Rabeprazole (Pariot). My acid reflux was there long before diagnosis. The pharamacist says that it has no interactions with my other drugs but I'm not on an antidepressant. And yes, if I miss a dose I'm in real trouble - Xeloda has kicked the acid problem to a whole new level.
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I guess the drug is AcipHex in the States.
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AnaCG ... I've had gerd for years, long before this dx ... I've tried them all ... protonix, also known as pantoprazole works well for me - it's a prescription. They use it IV in hospital for ulcers, pancreatitis, etc. healing effect. I also sleep with the head of my bed up some.
Someone just told me to try an antihistamine for the HF syndrome ... what the heck, it can't hurt, so I'm starting on allegra 24 hr. tabs. I really don't want to have to sit all summer, would like to be able to at least walk. Last week it was real hot here and noticed right away my feet starting to get tender. It's cooler now and they are better. I do all the lotioning, etc. and have spent a fortune on trying to find sneakers/sandals that work. Even been buying a size larger! Very frustrating.
Started round 2, reduced dose from 1500 x 2 to 1150 x 2; from 14/7 to 7/7. Hope this works. I was between grade 2/3 first time with HF; hands were o.k., it was the feet. I also had some nausea and stomach pains first time around. I take zofran when I need to and find it's better not to go long periods without eating, much like morning sickness. Better to keep a little something in my stomach at all times.
SophieJean, hadn't thought about putting the gel booties in the freezer, will try that - good idea. I assume they don't stick to themselves inside the bootie when frozen?
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Hi everyone,
regarding henna for HFS, I remember someone mentioning her Onc warning about allergies.. I checked it out, we shouldn't use the black one, it's in fact poisonous. It helps ladies. A great deal. Especially my hands are so soft I don't even lotion them so frequently (of course the level of SE's vary for each of us). My feet stopped burning the night I used it & I hadn't even applied it properly the first time. Now that it's totally washed out, I can feel my hands & feet drying & starting to burn easily, especially my feet when I stand on them too long. I usually wear Birkenstocks, the cork sole is comfy..but of course need a solution for more dressy occasions...?? Also Skechers shape-ups make my feet (the sole & toes) feel lighter & feel much comfy than my regular Nike's for walking as exercise.
Sophie, hi! My TM'S halved with the first cycle (started at 2000s though
) and continue to do so. I feel more & more adapted to x with each cycle, currently on 4th one. Your daily dose is higher than mine, I'm on 3000mg. Hope you can tolerate it well in the long term.The stomach issue... The second week of the first cycle was worse for me than when I was on taxotere truck & red devil ( no vomitting but severe stomach ache & burn), such that I even considered giving up. First juicing fresh potatoes to calm it down, then starting using stomach ulcer meds as per MO's prescription has been working good so far. Since no need for antinausia meds as before, the indigestion problem solved as well.
Moodyness.. already on Lexapro & Xanax, on baby doses but regularly. No sleep problems..MO & pcyh both agree I to be supported by these..
For the acid reflux, I will suggest roasted chickpeas over & over again..
.hugs, Ebru
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