All about Xeloda
Comments
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Hi Xeloda Girls!
I wanted you all to know I made it through 11 cycles of Xeloda- seven months- before progression. This past Friday we decided to stop treatment with X. I will go to MD Anderson for scans June 20 and then enroll in their PARP inhibitor/carboplatin trial. I loved my Xeloda but am looking forward to getting back into my running shoes and high heels. I wish you all the best of luck!
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Lynn1- it's a hard habit to break. That's definitely where I carry my steps also.
Chickadee-I've been fighting the fatigue here and there on my week off. I've also noticed that I seem to be moody and get frustrated to the point of tears very easily. ( ie..no patience).0 -
I get my pills every cycle. ONC said they wanna make sure blood counts are okay first just in case things need to be changed. Plus the pills are very expensive
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The expense is what I was wondering about. I pay $50 a pop whether it's for 14 pills or 21 pills. I would rather the 21 pills, itwould be like getting a free prescription every 3 cycle.
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I have had the bad cramping but it is due to very low potassium levels. So I take 2 giant pills for that every day. They say it is because I am not controlling my Big D better. My levels were at heart attack level. Down to 1.7 and should be 3.9. Cramping has stopped though. They say it isn;t possible to raise your level with over the counter potassium-not strong enough. And you can find list of potassium rich food on the internet. Although bananas are always touted as the best it really isn;t that way. Dried apricots are the top-but they are so sweet I can't eat them. Potatoes with the skin on are also great.
I was getting such cramps in my feet and ankles that I couldn't hardly step on them to starightene them. And I hear you about the jaw thing-tried like crazy to avoid big yawns. You might ask your onc to check your levels. My calcium and magnesium are also very low and I have always taken that daily. Something in the X must leach these out. They control lots of stuff especially the potassium.
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Yes to muscle cramps...but I have always tended to have them. Finally figured out that for me, it's magnesium (citrate, please). I take magnesium for a few days ( 2 or 3) when the cramps come back--it's usually 7-10 days--then I take it again for a few days. This is my personal compromise with the "no supplements" rule. Also eating whole foods and very few processed carbs and have lost 40 pounds since this time last year. Have been off X since the third week of April and still feeling the occasional creepy HFS twinge, but otherwise feel strong and healthy. Scans in May showed NED, hoping it stays that way now that I'm no longer in treatment, other than Zometa every three months. Wishing all good days, restful nights and no side effects!
Sue
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Lily - that's such a pain that you have to take even more pills. I'm glad the cramping has stopped, though, and your low potassium level was discovered in time. Thanks for sharing the info about potassium. I'll have to check and see what my regular blood work checks for. I know I get a Metabolic Panel but I can never remember what's included in it. I hope you continue to get your levels back to normal.
Sue - thanks for the info on cramps. I'll try that if they ever get really bad. It seems as if a lot of different imbalances can cause them.
So, I suddenly got a weird taste in my mouth today. I was eating my normal crackers and out of nowhere there was this odd feeling in my mouth, as if the cracker was leaving behind a coating. I've tried a few different foods since then and get the same result. It's not even a taste really, not like the metallic taste from Taxotere, just a odd sensation and all my food tastes flat. I did a search for suggestions and this is what came up: lemonheads, lemonaid, sucking on lemons, mints and mint flavored things, sour foods, rinsing with baking soda/salt water. Does anyone have any other suggestions? I'm going to add lemon to my iced tea and see if it helps. I plan to buy some lemonaid to mix with my tea since I don't like lemonaid straight up because it's too sweet. I do like Arnold Palmers, though. It's weird that it's happening now, on Day 3 of my break. I noticed during my week on that I no longer liked water or coffee, but that went away. The X is definitely full of surprises.
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Cynthia, I've also had a bit of a weird taste too and can't quite put my finger on it either. Trying to eat little and often as I seem to have developed quite a bit of bloating and wind (not great news for those around me!). Weird that this has alll come on the week off...
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Day 3 of my ON week. A little bit of HFS. The palms of my hands are weirdly mottled and red, the soles of my feet tight, very red and tingly. Not painful, just annoying. So I reported my SE to onc's nurse. She gave me all the normal advice and will talk to onc about any dosage change.
So I asked if she thought soaking feet in Epsom salt bath would help. She seemed intrigued, said it can't hurt and might help. So I had a nice 20 minute soak on cool water with dissolved Epsom salt. Then I had my son apply some nice Foot Therapy balm that I got at Kohls.
One hour later and the redness and tingly feeling is gone. Can't hurt, might help so I'm going to enjoy a nice cool soak each day. If all the other claims about the health benefits of Epsom salt can be believed I might be doing myself a favor.0 -
Laurie - that weird taste only lasted a day...how weird is that? I thought maybe it had to do with drinking out of a metal bottle, but it hasn't bothered me since. I did get some lemonaid in case it comes back. Thanks for mentioning the bloating/gas. I went to put on some pants this morning that I'd just worn maybe a week ago and I couldn't button them. Totally freaked me out because I'm eating even less than when I was on Megace. It's a relief that it could be bloat and not signs of something else. It still sucks, though. lol I'm running out of pants.
Chickadee - Glad you found something to help. I'm going to remember that suggestion.
This is Day 4 of my off week and no nausea anymore or funny tummy, but I'm tire quickly. I was able to do more today than yesterday, so I expect to continue to improve. I have my Aredia tomorrow and it will probably knock me back down a bit, but only for a day or so. So far, I can handle the fatigue better than the nausea so I'm going to talk to my chemo nurses about how to prevent it.
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I will be starting Xeloda either tomorrow or Thursday (meet with my MO tomorrow, my first cycle of pills arrives today). Assuming that it will cause low blood counts including anemia, I plan to ask my MO if it's ok to resume the pre-natal vitamins that I took during AC/T. I think the extra iron and folic acid made a big difference, along with a concerted effort to eat enough protein. Any thoughts on this strategy? I also plan to go back on Valtrex to prevent mouth sores. My body makes cold sores/fever blisters any time it's trying to fight off an infection.
Has anyone had blood sugar issues? I am diabetic and this is one thing I try to keep close tabs on. I haven't read anything that makes me think it will be a problem, but if anyone else is diabetic (type 2) I'd be curious as to whether or not you experienced any issues?
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Michelle: I have never had ANY issues with blood counts on X. Never! Yeah, sometimes they may run a tad low, but nothing that seems to worry the onc at all. Another reason I love X!! The only instructions my onc gave me on supplements was no folic acid -- somehow that interacts with the X and makes it less effective. So I had to give up my multi-vitamins I loved so much, but oh well...small price to pay. I am not diabetic, so I don't have any info on the blood sugar. Let us know how your first few days go!!
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Thanks, Lynn - that's very encouraging!
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My mom is throwing up after taking the pills. She eats (very little) and takes the pills within the next 30 minutes (as the doctor told her to do), after that she throws up everything ending up loosing the pills for the toilet! Did this ever happened to you? Any sugestion to avoid that to happen?
Thank you all.
Mia
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I would say that she hasn't got enough on her stomach. Can she stand a bowl of oatmeal or something fairly substantial?
Most of us are getting by with just a snack sized meal but it sounds
like that won't work for your Mom.0 -
Michelle-I have seen on the xeloda site that you should not take frolic acid. I don't know about blood sugar but I have low blood sugar and the first week of taking it I noticed I was having the sudden onset of shakiness that I use to get when I needed to eat. However, that also happens to me when my body is under stress whether it's mental or physical stress. It could be that the drug is causing physical stress that's set it off. I'm fine once I eat.
Mia-your mom should definitely try to eat more. I eat breakfast then take my pill. I don't wait. I also notice that I feel nauseous if my stomach is empty. I keep snacks at my desk at work for those times.
Chickadee-thanks for tip on epsome salts. I've been using it in baths lately with aveno oatmeal bath because my skin has been feeling so dry.
I go in for my first check up tomorrow and can't wait to show my doc the progress that has been made. Of the two large lumps that were idc only one small one remains. I'm hoping this next round finishes that off and starts working on the ilc.0 -
Hi Mia! I agree with Frapp -- take them immediately after she finishes eating, not 30 minutes later. You should also ask the onc about some anti-nausea meds -- she could take those before she eats and takes the pills. Also if she could eat something easy on the tummy that might help also. Hope this helps!!
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Mia - I was told I could eat a little, take the pills and finish eating so that they were "sandwiched" between the food so to speak. I would also ask about anti-nausea medication as well as Prilosec, Nexium or one of those pills. I take Nexium, Zofran and when I need it Promethsine. I forgot to take the Nexium on Sunday and I was so nauseated and could not figure out why until I realized I had forgotten to take the Nexium. Maybe call her doctor and ask about these things, I am sure they have other suggestions as well. Keep us posted as to how she is doing.
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Hi luvrving,
My mom is on her 11th cycle of X and has type 2 diabetes as well. Has had diabetes for 22 years. No issues with it. In fact she has been experiencing lower glucose levels just on metformin,cutting certain foods and juicing everyday. She was taking four diabetic meds at one time. Are u on metformin?
Anyway we get the results for her pet scan tomorrow. She has been feeling great since they lowered her dose last month from 3000 to 2000. Hoping and praying for continued regression or stability.
Take care0 -
Usually I eat a little , take the pills and eat a little more. Sometimes I gag on the pills and throw them up. When that happens a few times I start to take an Ativan half hour b4 I take the pills and that seems to relax me. Sometimes it's just a mind game, because the pills are helping but at the same time they can make you feel bad.
I hope they can figure something out for your mom.0 -
Mia - I asked my nurse today about the nausea and she said I can take an anti-nausea med like compazine first, then eat, then take the pills. I have to eat a decent size meal in the morning or I feel sick after I take the pills. I tried to take them with just yogurt once and it wasn't enough, and neither is just toast. I also take a Zantac with each dose of pills, too.
Frapp - congrats on seeing progress. That's great!
Em - that's great about your mom...I hope she continues to be stable.
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iluv3j - yes, I have been on metformin for more than ten years. I am not a shining example for the metformin clinical trials to determine if they prevent recurrences! I'll be on the watch for lows, I can deal with that.
I just took my very first dose (1500 mg) after having a fabulous dinner in an Italian restaurant in Boston. Had an appointment at Dana Farber with the RO, who happens to be my favorite doctor. He was visibly saddened by my situation and commented on the nastiness of my particular cancer. It was hard to take, to be honest, and I'm still a bit shaken by his reaction. I suspect my DH got a grasp of the gravity of my condition. So did I.
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Michelle
I kind of had that reaction from the head guy I saw earlier this week. He started to tell me about my TM's and I stopped him saying that as there is nothing I can do about them and they freak me out, not to tell me (I knew he was going to tell me they had gone up). My liver function has worsened too and then he started talking about my brain mets and when I might have radiation. Nice bloke but I couldn't get out of there fast enough!
Hope the peachy pills work for you. I've just started cycle 2 and again, so far, few SE's and I usually suffer with my mouth but fine. Just a bit of leg cramps in the night and a bit of bloating that I get round by eating smaller meals.
Laurie x
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Thanks, Laurie! I see my MO this afternoon and I suspect I'll get another dose of reality. It's sometimes hard to grasp that I feel perfectly fine and yet I've got so much trouble brewing inside... I filled up my pill box today with all my doses of everything I take for a week, and just shook my head.
By the way, my insurance is billed $2338 for one cycle of Xeloda, isn't that just crazy? Fortunately, my co-pay is $25. I'm very thankful for awesome health insurance.
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Wow! Guess I shouldn't bitch about the NHS as all my treatment is free (except my taxes have paid for it!)
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So, the empty stomach thing is no longer working for me. I've found that, especially for the evening, like singletona80, an Ativan half an hour before I take the x, it really helps. I'm also taking zofran and compazine. But! No other side effects : )
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Mauimom - that seems like a lot of anti-nausea meds. How soon after starting Xeloda did you start to experience nausea? I'm a newbie - four doses and so far I feel perfectly normal. I keep waiting for the "shoe to drop" and hoping it won't. I know SEs tend to come over time, just wondering how long it takes if it's going to happen.
I have to go in every week for a few weeks for labwork to check my blood counts. Ick, human pincushion. And blood draws are so difficult - my veins are tiny, they roll and they often give up nothing. I try to drink a ton of water before I go, but it doesn't seem to make that much difference. Maybe I should eat salty foods the night before - a little water retention might do the trick
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Had my apt with onc yesterday. I told her I couldn't wait to flash her. She was very surprised at how much progress ( or dare I say regression) I've had on the lumps in my breast. Then I got copies of my scans from the day before starting xeloda. They have scared the crap out of me. I now have 4 liver lesions, one on my kidney and a met to my skull just to name a few. I hope this xeloda is doing just as good a job on my internal organs as it is on the lumps in my breast. I can't seem to get the reports off my mind. I hate this.
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Frapp - I'm sorry to hear about your scans, but I hope the Xeloda is doing its job. I'm glad it's working so well on your breast lumps, though.
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Oh man don't you wish you'd never seen those reports. So far it brought me good news and I'm pulling for you to get great news at next scans.
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