All about Xeloda
Comments
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Lulu, Thanks so much!! I feel eased by your experiences, somehow. I will get proactive about these symptoms and try some of your suggestions. I noticed that scottish oats have helped my belly, for one thing. Bipolar is a good description: I feel so feeble, depressed and hopeless when I feel nausea or the other plaguey things, but very clear and positive at other times.
I am going to be sending everyone on this board an imaginary pocket medal tonight. We all deserve them. They will say incredibly powerful things, like "Major Heroine of the Mets Conflict", or "Able to Get up and Do it Again!" or "Talk to ME about Surviving". Any more custom medals we should make up?!
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Thank you guys for all the welcoming messages! I am anxious to get started on "Madame X"! LOL!
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roses, I called my eye doctor to reconfirm which OTC drops he recommends for dry eye, and here's a link for you.
There are several kinds of Systane drops, so be sure you are looking for the right ones. This is an overnight gel you put in your eyes last thing before you to bed.
I'm going to buy some this week and give it a try for a while. I'm tired of looking at the world through filmy contacts!
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Thanks, lulubee! I'll pick some up and give those a shot! I feel like my nighttime routine has gotten insanely long since starting Xeloda--extra face lotion for those suddenly there fine lines, lymphedema work, urea cream on hands and feet, now this! But if it works, I'm game to give it a try!
Mamame, have a wonderful vacation! I'm planning a summer trip with my daughter for about 10 days, trying to build in some extra rest toward the end of the Xeloda cycle. I don't think bipolar is that inaccurate. I find myself much more easily depressed and emotionally fragile at the beginning of my "on" weeks. It's like clockwork and I don't even feel that bad on Xeloda, I think it's just the drug and my brain clashing a bit. At least it gets better and I can kind of recognize it's happening and talk myself through it, but not fun.
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Was called by a different oncologist this morning than one I see. Evidently my oncologist is on vacation. They scared me, as I wasn't expecting to hear from them. But, they told me that my scan from Friday showed NED. What a relief. thanks for all the support. And thank you Xeloda.
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That is the best news, leftfoot! So nice of them to call and let you know the good news, too.
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Hi all my Xeloda pals! I totally identify with all the posts to do with sore red feet and irritable tummys. Here I am up in the night creaming my feet for the umpteenth time. Got some Vicks Vapor Rub so going to give that a whirl! I find my irritable tummy is worse during my pill free week. Not only do I get cramps but dreadful flatulence - I have to find a quiet place where I can do my loud trumpeting without embarrassment! I dread getting invited to dinner parties or other gatherings at this time in case I spend most of the night on the loo! I also have increasing indigestion - I ended up going to my doctor to get checked out last week because the indigestion tablets were not doing the trick and I was worried in case I was getting the heart problems I know can happen, albeit, I know this is not a common side effect. I have stepped the indigestion tablets up a little and all is well on that front now. Oh the joys of Xeloda! It's such a comfort to come on here and speak to others going the same things. Hope we all keep well on this drug despite the rotten side effects
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Leftfoot-Congratulating you again but on this thread. So happy for you!!!
Babs0 -
that is wonderful news, left foot forward! I read this thread faithfully but don't post much. I'm happy about your scan
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Leftfoot, wonderful news indeed!
Today was not a good Xeloda day. Started with some serious GI stuff, and then I slept for most of the day. After my third nap, I woke feeling better. A turkey soup for lunch was good and helped me regroup my energies. I get some blood work done on Friday. I am hoping for some great numbers. not ready to leave this protocol just yet. Tomorrow is my last day of cycle 5.
*susan*
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Probiotics helped me a lot with the upset stomach & bad colon pain. I just started getting the burning of the feet and finger tips. I use coconut cream & used alovera today & wraped feet with saran wrap. I may also try the vicks tonight.
Terri
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Congrats Leftfoot!
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Just out of curiosity, does Xeloda come from a specialty pharmacy or just a regular one? I'm still waiting for authorization so wondered how much more waiting I will have to do.
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NicciJ- there is a generic form of Xeloda available so there is at least 2 sources. I just think it takes insurance a while to authorize the meds as you will be on them hopefully for a long time.
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Nicci, it comes from a specialty pharmacy because it is a chemo. I recently went through the waiting period for authorization and processing and it can be so frustrating. I called the insurance company, doctor's office, specialty pharmacy and authorizing pharmacy my doctor uses to process approvals every day until it was filled. I am sure my annoying calls sped things up. I was really worried as I had a major progression so I ended up paying for a short supply out of pocket on day 5 of waiting for the processing. Good luck and I hope you receive your meds soon!
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Leftfoot, congrats on scan results! NED is wonderful!!!
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Well if nagging and annoying them is what it takes to speed things up, I can definitely do that. I doubt I need it as fast as you did, but I'm nervous as hell right now having spent 3 months on the Ibrance that did nothing while everything in my lungs and chest wall grew. My chest feels tight when I breathe and my breathing is kind of shallow-very noticeable to me and constantly on my mind which in turn makes me nervous. Aaaahhh!!! LOL! Ha, sorry-little bit of venting there!!
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And thank you, btw, JFL!!
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As you all know, I've been on Xeloda a long time, and I have had enough cycles go by at this point (60? 70?) to figure out some support foods that help me do better during the on-weeks. I do best when I am proactive about preparing ahead just a little before starting a cycle. When the malaise sets in mid-week, I simply do not care about nutrition anymore. Food is a bother. I start craving bad carbs. By Day 4, I just want to live on pastry and donuts and spaghetti. By the end of the week, I am sometimes forcing myself to care about drinking water, even.
Do you ever feel this way?
Maybe we could all share some of our self-support strategies and get some hive mind going on this. I am interested to hear what helps others. I'll go first... here are the most helpful things that I try to do every cycle:
- I boil a dozen eggs the day before a cycle starts, and put them in a ziplock bag in the fridge, unshelled. They will keep for at least two weeks like this. Handy for salads, awesome protein. I eat one or two a day. I buy the best eggs I can find-- free range, organic, omega 3, no soy. I had chickens as a child and I like good eggs!
- I fix a little container of lemon-dill tuna salad. A spoonful between meals is a nice shot of protein, and the lemon & dill soothes the tummy. I have this on hand almost every cycle.
- Smoothies. These keep me going, and I can adjust them for the Xeloda side effect du jour. Here's how I do that. I keep lacinato kale in a glass of water in the kitchen window all week. I toss 3 leaves in the VitaMix with a cup of ice, half a lemon, an inch of fresh ginger, and a cold granny smith apple. If my tummy is wobbly, the ginger and lemon is amazing; fresh pineapple is loaded with digestive enzymes also. When I feel like my blood counts are slipping (and I can tell by now), I throw in a raw beet. When GI issues hit, I add half a banana, a little yogurt, maybe a spoonful of raw oats. I often toss in a scoop of wheatgrass powder. If I need protein, I add a scoop of protein powder or half an avocado.
- Green Vibrance powder. This stuff is like crack, as they say. I start every day with a shot of it. My magic morning potion is one scoop in 8 oz water, with which I wash down two capsules of Inflamma-less and one Gaia Adrenal Health capsule... and then I get to have my morning coffee as a reward for being such a good girl. It does not taste good but it never fails to make me feel better. I'm just sayin'-- maybe you should try this stuff. Watch the video about what all is in it. (CRACK, I tell you. Just kidding. Sort of.) Cheaper on Amazon.
- I try to make a pot of vegetable soup to keep in the fridge so I always have a meal ready. A food processor makes this quick. I just saute garlic, onion, and celery, then add carrots, potatoes, frozen corn, frozen peas, a can of fire-roasted tomatoes, a box of chicken broth, and some seasoning. All organic if possible. This is comfort food for me.
- Bananas. I don't love them, but they help the gut issues, boost potassium (usually low on chemo), and they are easy to grab on the go. Same goes for little clementines which are good for tossing in the purse.
- Mamma Chia squeeze snacks. These are a grownup version of the kid squeezies. Good for wobbly moments when there's no nutrition in sight and you need something fast. I buy them by the case. I keep one in my car console and another on my nightstand in case I wake up too hungry to sleep.
- When blood counts are at their lowest, I make sure I get some good beef. My husband always takes me out for a gourmet cheeseburger on day 8, when the cycle is over-- it's our routine now. I am partial to Grub Burger Bar and Hop Doddy. I want grass-fed beef, sharp cheddar, loaded, lots of pickles, and an ice cold Shiner... YUM. I always feel better after getting my beef boost. :-D
- Avocados. With salt!
- Apple slices with a little almond butter.
- Walnuts (I keep a jar on the counter all week).
- Citrus Fresh essential oil in my water-- just a drop or two and I'm much more likely to keep drinking it.
- Green tea with a little honey. Tonic for the body, a nice energy boost, and the honey soothes the gut.
- Candied ginger. Great for icky tummy. Addictive. I love it covered with dark chocolate, too. I don't eat much sugar so this is a big treat!
Okay, your turn! What helps you?
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Congratulations LFF on your great news!
As far as specialty pharmacies go, it's really irritating to me that insurance often ties you to one and you don't get to shop around. With my insurance, I'm now on my 3rd specialty pharmacy in less than a year. Fortunately, this one (Briova) has been really great (they contact my doctor and insurance, follow-up on preauthorization, and they found me a grant for my copays) but I had bad experiences with long waits and "not my problem" attitudes at both of the other two and I'm really hoping my insurance doesn't switch up again!
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LFF, Happy Dance with NED. The best guy to dance with! I sure wouldn't mind stealing him. However I show progression on my last scan.
LoveToSing, I hear ya about spending time on the loo!
Susan, sorry you had a bad day. I hope today is better for you. I find for myself that I start feeling better about day 3 or 4 on my off week. Good luck with those labs. Praying for lower numbers for you.
Terri, I have a visual with your feet wrapped in saran wrap. But do try the Vicks with socks. I also sleep with it on my hands with gloves.
Nicci, mine comes from a specialty pharmacy. We use a mail order one, Right Source. I also have help paying for it. I only have to pay like $25. It's also called Capecitabine. Good Days is where I get supplemental help, for any of you that might need it. I do have insurance, but It's a $15,000.00 deductable!
Wow Lulu, you got it going on girl! I don't have a regimen to share.
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This is my first post in several years...and have not been to the site for a coupla years...
In 2007 was diagnosed with ductal and lobular ca left breast , two positive nodes. ER + . In 2013 I was diagnosed with mets to my liver. Have been on Xeloda ever since...
I am on my 49th cycle of Xeloda...my tumor marker went down from 2000 in February 2013 to the lowest point this past August to 22( normal range for this test is 0 - 25) so it has worked for me ...now the tumor marker is beginning to rise ...it was 40 last week ....indicating the cancer cells are beginning to override the Xeloda . Last week a cat scan of my liver indicated one new small tumor and continued shrinkage of the large tumor.
Side effects for me include HFS, diarrhea, and dry eyes.
Can't wear my contacts easily.. I take chia seeds daily in cereal for controlling the diarrhea which in the beginning was explosive with gas and really uncontrollable...the dose was lowered and my palliative care dr recommended the chia which has been a lifesaver .
For my feet I wear gel socks at night . In the am my feet look and feel normal but as the air gets to them they dry and peel...by evening I have to put the gel socks back on....my toenails are soft and non existent...no pedicures possible....my hands are less affected but are often dry with painful cracks....I am a baker so my hands are in water a lot....gel gloves work well but hard to wear during the day...creams give me minimal relief...
I have been buying the gel socks and gloves online...earth therapeutics....
I am not looking forward to changing chemo but change I must in several months as the tumor marker climbs up...
I don't see any mention of tumor markers in this post...I have this blood test at the end of each two week cycle .
Medicare pays for the Xeloda ....to date I think it has cost about $10,000.
Hope this helps ...
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Landaffqueen, welcome back and thanks for posting! I too was dx'ed in 2007 with both ILC and IDC, ER+. For me, it's the ILC that recurred, in my bones, and in a big way. How about you-- do you know which type recurred? Like you, I also took a break from the boards for a while, but have come back recently.
TM's are mentioned here pretty frequently, actually. Mine are checked every 6-8 weeks.
Thank you for sharing your experience with us. I am hoping that the Xeloda will find that little bugger in your liver and shut it down. Maybe your TM's will take another fall over the next few cycles, who knows? Stranger things have happened here in the Republic of BC.
I hope you stay with us on the boards for a long time.
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Just got my TM's back, So happy!!!! My CA 15-3 went down to 70 from 128. Before I started the Xeloda on 1/1/16 my TMs were 248. My CEA also went down again this month from 24.4 to 18.1 (but this TM doesn't really matter for me). My CA 15-3 has always been the bellwether of my MBC.
I get my TM's tested monthly and scans done every 3 months unless my CA15-3 jumps up..
Since I started on Xeloda, my Gastro Dr recommended I take a probiotic which I have and luckily, I haven't had any stomach issues. I have a warm glass of water with lemon every AM before breakfast-it's supposed to help with stomach issues too. I slather myself with Vicks on my hands and feet every night and then wear moisturizing socks and gloves which helps a lot. I try to wear gloves at work, but it isn't always possible. My must have are my sketchers for walking!
Susan-sorry you had a bad day!
Landaffqueen-welcome back and I hope you can stay on Madam X much much longer!
Babs
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Babs! Woo and indeed HOOOO!
Thanks for sharing your tips, too! I find that both the probiotics and the lemon water before breakfast are game changers, as well.
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Hey all-
Does anyone on this thread have experience with brain mets? I saw my MO today and explained some side effects I thought I was having and he thought it sounded weird and started asking me all these questions and told me he wants me to get a CAT scan of my brain. It has me a bit bugged out.
I'm hoping this is just a CYA thing they are doing. Any input is so appreciated!
Renee
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Thanks Goldie! Ouch about your deductible! Believe it or not I have no deductible and my out of pocket maximum is only $1500.00, which I have already met due to my first round of Ibrance. So that was nice having that met already at the first of the year. So now all of my scripts, office visit co-pays, scans and everything don't cost me anything. Now my premium is $450/month but its definitely worth it to me. And Goldie, I'm so sorry to hear about the progression on your scan. What will that mean for you, a change in treatment? Or just watch very closely for a while?
Lulubee, you are truly amazing! That's a lot of healthy stuff! I could do the soup, the walnuts, and the dark chocolate. Oh, and the burger! Definitely, the burger. I will try to work on eating healthier if I ever get my prescription! Aaah!
That is really great news, Babs, on the TM's!!!!!!
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EASY-I buy the 4-pks of Breakstone's cottage cheese which is really good and just one of those cups has 10g of protein. I also get these protein shakes from HEB called "Opti-Meal" that are 10g of protein that are really GOOD, I think. I usually hate those kind of things and really anything healthy like smoothies, etc. I get the one called "Cafeccino" -I know, strange spelling but that's really it. Tastes just like chocolate milk with a hint of a coffee taste. So cottage cheese, toast, I like "Knead for Seed", and protein shake for breakfast...About 24 min grams of protein. EASY
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Renee- I have had brain mets. I recommend a brain MRI as its better than CT scan for diagnostic purposes. Hoping you don't need it but there is a great brain mets thread. oM me if you have any questions.
Hoping for the bes
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I love all the healthy tips on this thread! Thank you lulubee and everyone who has taken the time to post.
I've been having a really severe foot reaction this cycle. My right toe is very swollen and blistery to the point where walking is painful. It even throbs when resting sometimes, so I'm kind of worried that it is infected. I've been putting the vaseline on my feet, Neosporin on the toe and also soaking both feet in Epsom salts ,which is soothing and takes some of the pain away. This morning I woke with the side of my left foot peeling badly and very painful.
The only change I made this cycle is adding one extra pill - from 2 at night to three- which I thought would be good (onc agreed) since my markers were rising slightly on the 2000mg dose. But I had to quit a day early because I just couldn't handle my burning feet. Kind of a surprise because it crept up on me. They were fine for he first week and the big trouble started the second week. Funny, my hands are less problematic this time.What a strange drug reaction this HFS is! I see the NP for blood and checking in on Wednesday. I think she will freak out when she sees my feet.
Landaffqueen- Your non-existent toenails are something that I can understand, as I'm afraid my left big toe will never be the same and I may lose the nail. Love the gel sock tip. How have you managed for this many weeks?! My hat is off to you, and I hope that whatever treatment comes next is kinder. At the very least, it should give your hands and feet a break.
Thinking of you all while we go through this. Congrats to those with lower markers and great scans. That's why we're putting up with this- it makes it worth it.
Take care, all.
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