All about Xeloda
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Hello, All
Looking for a little advice - anyone suffering from extremely sore feet and horribly swollen legs and feet? I have had to resort to painkillers for the foot pain so I can walk again. However, the swollen feet and legs is painful. When I saw my Onc last week, she didn't seem to concerned about the swelling. Any treatment that I can try, beside elevating my feet and drinking lots of fluids? I have just started my second round of X. Thanks.
Diane
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theziz - I was very scared to start the faslodex shots, but they were less painful than a regular shot I found (for me at least). Definitely go to that thread and follow all the tips. Don't be afraid to request the nurse that has the most skill!!
GrannyD - what dose are you taking? Any chance of a reduction (X can be just as efficacious at lower doses) If you are having trouble walking that's a big hit to your quality of life and onc. should take that seriously. Good luck with round two!
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GrannyD Sciencegirl is right on it. Of course they should care if you could walk or not. And they should make sure that the swollen legs are not from something else. Hope you feel better soon.
Timothy i overlooked your post earlier, how is your wife feeling now? So smart of you to connect the pain to the meds. What is she taking now instead? Would ambien help with the sleeping?
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My wife is continually taking sleeping pills. She has two different kinds she uses. Not sure about what kind they are, other than they are prescription. She takes melatonin for the anti cancer benefits, and too high of dose of it can cause insomnia as well. I can't say with certainty that the Differin helped or hurted. Her foot skin looks near perfect, although it is thinner, having long lost all callus. She is still suffering from foot pain and burning at night. It might just be part of the cycle of many side effects that come and go at various times during her time on xeloda and time off. She finishes her two weeks of xeloda this Tuesday, and in a week we go see the Onc, get her blood tested, and discuss the latest MRI results.
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Just finished my 2nd week on X on Saturday- I am 7on 7 off, 500 mg tabs 2am/3pm. Yesterday felt pretty nauseated in the am, today threw up the two sips of coffee I had. Achy, in pain and dizzy all day. I have read that the SE's seem to kick in after the 2nd cycle. Going on a 7 day cruise Saturday. Worried!
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Artiecat, will you be taking X while on the cruise?
Do you have anti-nausea meds on hand like Ondansetron? If not, call your onc!
Be sure you are taking your doses with adequate food. As I have said here before, "Don't send a banana to do an omelette's job." Or else, like me that one time, you may be barfing up pink bananas in the church parking lot (or in your case, over the ship railing).
Ahem.
Also be double sure to drink a full glass of water when you take the pills, then at least 8 ounces an hour the rest of the day. Your kidneys and liver need to flush this harsh stuff and they need help!
I hope you enjoy the phooey out of that cruise!
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Thanks, lulubee! I intend to enjoy the cruise - even sitting on the balcony listening to a book will be heaven! It will be good to do something somewhat normal again after six months of taxol and now the X...
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One thing people need to know is if you've just come off another chemo like Taxol or Taxotere, your body is already depleted and you may have a tougher time with X. The body can only take so much and X can be pretty brutal even without having been on something else b4.
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Too true, Lita57! I am also getting pamidronate infusion monthly. Sigh. I just want to feel good enough to do some travelling and fun things in the time that I have left on this big blue ball! But enough whining! Appreciate the good words!
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Artie, we're trying to plan a trip to Palm Springs. Hope I'm OK to go. We both gotta hang in there.
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Ziz, I did Faslodex with no problems at all...NONE. Not one SE. It was sooooooooo easy, unfortunately it was short lived as it did nothing for me. I hope it works for you and with no SE's.
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Pool how were you getting mistletoe shots in the US as I thought it was illegal here? thanks April
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I'm going to start calling myself Elsa (from Frozen) because I have to wear gloves all the time. Hands aren't quite so red this week, but they are dry as heck and the numbness, tingling and neuralgia sucks.
I might as well have wooden hands like Olaf.
That's Giants mascot Lou Seal in the Santa hat.
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Getting my first delivery of X today - scared to death to take it. My onc prescribed 4 500 mg pills twice a day - this seems like a huge amount, no wonder people have such a hard time with it. 4,000mg seems extreme, but I know if SE are extreme the dosage can be reduced. I'll start with 14 days on and 7 off. Wish me luck. It seems nothing has worked since Cytoxen and Taxotere 3 1/2 years ago, but I should focus on the good things and not the what ifs. There are so many in far worse shape then myself.
Have a great weekend all - I'm kind of excited, we have a winter storm heading our way with 8 to 12 inches of snow forecast and on Sunday minus 25 below! That I'm not excited about.
Amy
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AmyQ, yes, that is a high dose. Do not hesitate to call your onc and ask for a dose reduction immediately if your feet or hands start feeling even a little bit tingly or like a sunburned sensation. Heck, just reduce the dose if you need to and then ask for your onc's blessing later.
I take 1500 twice a day, 7/7 schedule. That is pretty standard. I am average size, a bit overweight. (Dosage is impacted to some degree by body size -- the dosing rubric has been discussed in this thread in the past.)
If you take B vitamins normally, you might back off on folate until you see how your feet are going to respond to the drug. In some people, high blood serum folate can increase toxicity with Xeloda. Be sweet to your feet and hands.
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Lulubee and Amy....MO started me off on 4000 per day, 14 on/7 off. I was a bit heavier then. I lost about 25 lbs, and now I'm on 3000/day. I specifically asked for dosage reduction TWICE. I have a cardiac arrhythmia, and X is also cardiotoxic according to the online data sheets. I had noticed more ectopic beats at the higher dosage. I asked for the second reduction because of bad diarrhea, so now I'm 7 on/7 off. Still have a little Mr. D, now and then, but it's manageable.
Start slathering your hands and feet NOW. Don't wait until they start to get red and dry.
Have a nice weekend, everyone.
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I'm going to check out the dosing rubric, but I'm actually a little underweight for my height. Well it just literally was delivered 30 seconds ago, so I'll see if it truly is 4000 mg a day. Yes it is. I'm going to start tomorrow so I have my full dosage - otherwise I'd have half today.
Besides being worried about SE I cannot sit in my hub tub while I'm on this - apparently it will aggravate HF syndrome. Guess I'll see what happens.
Take Care everyone.
Amy
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Be sure to wear good, thick gloves when you do dishes and clean the bathrooms, too. You don't want to have your hands in chemicals and hot water.
Keep your showers as brief as possible, too. TMI: One time I was washing my hair and when I got out, I looked in the mirror and saw all this tiny white stuff in my hair (I thought I rinsed the conditioner out thoroughly...). I picked thru my hair and realized all the little white bits were PIECES of skin from my hands that had peeled off onto my hair while I was rinsing it. EEEWWW!!!
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My onc told me I could take baths as long as I keep my feet up out of the water most of the time, like propped on the edge of the tub. Hands out of the water, too, obviously. So maybe that would work in your hot tub?
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I have gone in the bath tub too and kept my hands and feet out of the water. It felt so good! I do miss going in saunas, steam rooms and public hot tubs, though.
AmyQ, 4000mg / day does sound like a high dose. I have heard of a few starting on that, most seem to start on 3000mg a day (or lower). I have been on 3000mg a day for 10 months. However, after no nausea on this med, I had a violent vomiting session earlier this week. It seems the toxicity has built up in my body over the 10 months. Also, I have lost a bit of weight since starting. I am currently taking a week off and then will probably go to 7 on / 7 off at same dose. I knew this day would come but tried to hold out on the higher dose as long as possible.
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Has this drug been working for those of you on it? Has it put anyone in remission or at the very least beat back some mets?
Thank you for all your suggestions and help. I appreciate it so much.
Amy
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amyQ- I have been on Xeloda since Dec 2012. I have been NED for almost the whole time with one line liver met in July if 2015. So Xeloda has been a wonder drug for me. Got rid of a whole liver full of Mets and kept my brain mets at bay. So I put up with the SE.
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I quit Xeloda the H /F was unbearable it's been two weeks since I stopped taking it and still have burns". I saw my oncologist yesterday and she said I did the right thing stopping the X. She'll probably put me on some kind of IV chemo but I'm moving to a different city so my new oncologist will have the decision.
Aurora
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Leftfootforward,
That's very encouraging news! I hope it continues. Aurora, I'm sorry HF was so awful. I do hope your next line of treatment is much easier on you and yet works.
Amy
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April, I just sent you a PM on the mistletoe.
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Hi All,
I have been having extreme nausea on a daily basis but It comes on.. mostly after eating, so I am thinking I may get my gallbladder checked. I am having other gallbladder symptoms, so I am hoping this is the cause. If it does turn out to be X...I will have to move on to something else because I can't live like this.
I was one week through my 2nd cycle of X and experienced extreme weakness on Thursday and Friday that I could barely sit up in a chair. I saw my oncologist on Friday and she put me on the 7/7 cycle instead of 14/7. I have no hand and foot at this point and have not had the big D, but have extreme constipation.
I will have a scan in 2 weeks to see if X is working.
Hope everyone is dealing with the X better than I am.
Robin
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So sorry X was too hard on you, Aurora. Robin, hope its just your gall bladder. The 7/7 dosing is much better tolerated. I'm not as fatigued and diarrhea is better. I'm on cycle 10 now.
Hope everyone else is doing OK.
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Hello Xeloda Sisters!
I am thrilled to report that after 3 months of climbing tumor markers and much discouragement, my tumor markers dropped 40% in the last two weeks and last week's PET scan showed shrinking bone mets and stable liver mets. Such a relief after discovering I was stage IV less than a year after finishing active treatment for stage 1b. Like many of you, I too have difficulty with being cold and right now in MN it is moving 15 below zero without wind chill! I am wearing long underwear and wool socks all the time!
My MO started me on 4000mgs per day for two weeks on and one week off while I was doing 20 rounds of radiation. By the end of the second round of treatment I was icing my hands and feet twice a day. I asked my MO to drop the dose per the recommendation of a consulting MO and she droppped my dosge to 3000mgs one week on and one week off. The consulting MO also recommended a cream that has really worked for me: Naturewell Extra Virgin Conconut Oil Moisturizing Cream. I use this with cotton socks and gloves every night. I also use Bag Balm about every fourth night.
I take extra B6 and B12 but eliminated folic acid and have found this to be helpful as well.
Wishing you all the very loveliest of holiday seasons and lots of hope and healing.
Warm blessings,
Kimberly
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Left, 4 years is so inspiring!!!
Auroya, so sorry you had to quit Xeloda but it sounds like it was the right decision for you.
AmyQ, I had over half of my liver filled with mets when I started Xeloda 10 months ago, with left lobe described as "almost entirely consisting of metastatic tissue". At this point, the liver mets are minimal.
Robin, I hope the 7/7 dosing scales back that terrible nausea.
Lita, I am laughing at your signature note! Very funny.
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so sorry for all of you dealing with SE of Xeloda.
It has been awhile for me but I do remember the first several cycles of Xeloda were hard on me. I was on anti nausea meds and broke out in a rash. After about a month (or two) those SE got much better. I haven't had a rash since. I was told that it would take several cycles for my body to adjust to the new medication. It did.
I hope that this is true for all of you who are new to Xeloda and that you all feel better soon.
Of course, always say something if you aren't feeling well. There are things that could potentially help like the change in schedule or dosage you've been taking about.
If it doesn't work for you, then I wish you all the best with your new treatment
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