All about Xeloda
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Lynn,
No, you did not send me your xeloda primer via PM -- but I would love to have it. My MO has been going back and forth on whether or not to use this drug with me, but the decision is now made so that would come in handy.
Denny and Shetland -- thanks for your tips.
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👍👍
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Hi BevJen,
I feel pretty confident that you won’t have issues at that dose. It’s been a manageable drug for me with fatigue and HFS being my biggest issues. And to be fair, I think I was pretty sapped after a year plus on Verzenio.
I haven’t posted but interestingly, my MO wants me off Xeloda after six cycles. His view is that it will only drag me down to continue. I am having a follow up conversation with him in the next few days but I suspect he wants to pull back to avoid developing resistance to this treatment as I had a profound response - one liver lesion completely resolved and the other substantially smaller. I’ll know more soon. Interesting the difference in approaches between MOs and countries. I was set for the long haul on this drug but must say, after only one extra week off, my feet are sooooo much better and the brain fog has lifted!
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Bev- also drink a full. glass of water with the pills. take within 30 minutes of a meal. I find that I set a timer when I start the meal so I don't forget.
aquaphor is my favorite, mostly use it at night and after showers. ginger tea if nausea- I don't get nausea with Xeloda. It started working right away for me and I was quite sick when I started it so wishing you the best of luck
so glad that your bones are stable
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This is a good site to monitor your Folic Acid intake...FolicAcidNow.Net.
I was surprised to see what healthy items that I have eaten are so high in Folic. Now I eat a lot of carrots...no spinach, no broccoli, no dried beans, etc.
My week on 1,500 per day went well, and my feet and hands are perfect. I started back on 2,000 a day this morning. So I will be able to determine what my problem was.
I have been on Xeloda for 3 1/2 years.
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Hi All: Want to share some good news for a change. Had a scan yesterday. My oncologist said it didn't show any progression even though my tumor marker went up substantially two weeks ago (back down this time). I'm on 3000 mg Xeloda - 7 days on, 7 days off. I've been on that regimen for two cycles and started a new cycle today. The oncologist doesn't want to see me for 4 weeks which for me is an unbelievable relief. I usually go in every two weeks maximum. 4 weeks for me is like a vacation. Went fishing today for the first time in about a year. Beautiful weather and a really nice float on the river (Missouri). Life seems normal even if only temporarily.
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It sounds like your temporary rise in TMs could have been from tumor cells dying off. Awesome. Enjoy your time off!
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Update on my acute Keratitus (damaged corneas)....
I saw my eye Dr yesterday and 2 weeks of the Prednisolone Acetate eye drops really helped me.
I am supposed to finish up the bottle of drops, and use Restasis twice a day, along with Systane drops through the day. I basically need to keep my eyes moisturized.
And he told me to use Refresh or Systane eye ointment at night before bed. I did that last night and for once, I didn't have to pry my eyelids apart when I awoke.
And I should avoid Allergan allergy drops if possible, since they dry out the eyes.
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Denny, the ointment was a game changer for me(how did I not know this before?) Idon’t even need to use the drops as often through the day. It is awfully messy though and once the ointment is in I can’t see a damned thing lol
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Thanks for the heads up. I will definitely see the eye doc and take you up on your advice although I am not as bad as you sound.
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into-it is kind of weird tht I didn't have the bad eye problem for the first few years on X.
Mls1-I agree! It is like being underwater for a few minutes.
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Denny, I had a couple of ocular migraines right away, but no one seemed to equate it with X. They haven't reappeared but the blurry eyes are daily. I probably need more than Systane so I will try to get in.
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Wandering, So glad to hear things have taken a turn for the better and you are enjoying summer. Did you catch anything fishing? Keep enjoying those precious "normal" days.
BevJen, Official welcome to the X thread! I agree, 2000mg sounds like a good starting dose for minimal se's. Fingers crossed. Good reminder from nkb about taking with a full glass of water within 30 minutes of your meal.
Sadiesservant, That is so interesting that your mo is taking you off X because you had such a good response. What is his philosophy of treatment? Keep changing things up so cancer can't/doesn't mutate around the current tx? Did I get that right? And what will be next for you? Hoping it's an easy tx that still keeps everything stable!
Best wishes to all.
Jo
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Jobur and SadieServant, interesting approaches. My MO took me off X when it looked like a slight progression, but when it was not found in closer scans, she allowed me to go back on so we don't blow through treatments too early. I will know in three months whether that was a good decision.
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My husband caught one 17" rainbow - I got skunked. We were only out a couple hours but enjoyed the spectacular weather. Our neighbor is going to Florida for a week so we are keeping an eye on his house. Cannot go away ourselves but we live 1/2 mile from the river so we can get out for an afternoon. We have a drift boat with a little motor which makes our trips really easy. Summers here are really short so we need to enjoy when we can. Like everyone else we need to take advantage of feeling well while we can.
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Jobur, I waited to respond as I was waiting for my MO to connect with me. I sent him a long list of questions, including the rationale behind stopping treatment. There are a few considerations, one of them is toxicity to the bone marrow. The penny dropped when he mentioned this. My red blood cells have been a problem since Ibrance and I am considered as having quite a bit of chemo already (while it was many years ago, I was on pretty heavy duty chemo with early stage disease - it's easy to forget that). While I am holding my own, my RBCs remain stubbornly low and other measures point to my marrow struggling.
He also feels this is a good time for a break as I am still feeling well and he considers me to be in remission given the profound response to the Xeloda. Liked the sound of that!
Ultimately, my cancer is slow growing so we watch with scans and if we start to see progression we treat. I’m comfortable with this and am a bit thrilled to think of a summer without the side effects. Already, after only one extra week off, I am able to think more clearly and feel so much sharper. I may be back on this thread soon but for now I intend to enjoy my freedom!
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Thursday ( cycle 2, day 13) the hand and foot stuff started.
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Sadie, that sounds good! My onc likes to give me time off once in awhile to let my body heal a bit.
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Sadie, yay for the break, I hope your summer is filled with good health and good times.
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quick question: I'm starting xeloda tomorrow. Already nauseous. Was anyone in that state when they started x? Not sure how I'm going to deal with the meal before the pills -- I am not eating any full meals right now.
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Hi BevJen, I don't always eat a full meal before taking X, but I do try to eat something nutritious. For breakfast a lot of times I eat some yogurt, granola and maybe fruit in it. I seem to do fine on it. But I do try to eat a full dinner whenever possible. I am sure others will chime in. I eat crackers if needed for nausea and Zofran helps too. Good luck. I hope it works great for you.
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Bevjen-try not to be nervous. I never get nausea after I take the pills. I would at least eat some toast a half hour before taking the pills. I always do better when I eat carbs.
I have a full breakfast before my morning pills, but I need my breakfast!
Some ladies put the pills into gelatin capsules first. Some ladies also take Zofran first.
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Bevjen, I don’t always eat a full meal either, sometimes it’s just a half bagel or banana if I’m heading out early. I did have big problems with nausea and vomiting early on and the two usually prescribed meds didn’t work for me. I ended up with a dose reduction from 4 pills am & pm to 3 pills each and the integrative meds group gave me promethazine. Promethazine is an antihistamine from the 1950’s but it’s also used for motion sickness and that stuff was magic, solving the problem immediately, now I guess I’ve adjusted because I only have to take it for a day or two towards the end of each cycle. Worth asking about if you find yourself in the same situation.
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BevJen- I eat oatmeal or cream of wheat - instant and toast and some fruit for breakfast - I was given an rx for promethazine with my first Xeloda rx. I never used it. I use ginger chews for nausea- but, haven’t really gotten it with Xeloda. I was in bad shape when I started it and did do lots of soup and crackers. It is always rather terrifying to start a new med.
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BevJen, I also rarely experienced nausea on Xeloda. My breakfast was simply a scone with some cream cheese so not a huge meal. I have heard that protein of some kind is important but can’t say for sure. I was religious about the BIG glass of water which wasn’t easy as I am not much of a water drinker.
Hopefully you will have few, if any, side effects.
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NKG- Thanks for the information. I was able to find an article with current, June 2021, information about a 7/7 vs 14/7 for metastatic colorectal cancer (mCRC). Nothing related to breast cancer but a good article- I'll check with my MO who has not done 7/7- I'd love a change in schedule. They indicated that - " No significant difference was seen with regard to ORR, PFS, or OS." (ORR- Overall Response Rate, PFS-Progression-free survival, OS-Overall Survival)- with Colorectal Cancer patients. It was a retrospective study and didn't say how long a time period was covered. Have not found any articles relating to metastatic BC. They also found significant reduction in adverse effects in the 7/7 group. They did not mention doseage but I think the usual dosage is 2500 mg a day.
Conclusion (from Clinical Colorectal Cancer Publication)
Patients with mCRC who received the 7/7 schedule had significantly fewer dose reductions and treatment delays compared with patients who received the 14/7 schedule. Although no difference in efficacy outcomes were observed, prospective studies are needed to confirm these findings.
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The literature states that a high-protein meal or snack before taking the pills, increases the efficacy of the pills.
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Sadiesservant, I am a little disappointed that your mo doesn't have a new and exciting philosophy for treatment, but so happy you are getting a tx break this summer! Hope those red cells respond and make a great comeback. Love hearing that word "remission"! Have a wonderful summer.
NinaCA, Thanks for the interesting info regarding 7/7 vs 14/7 dosing for mCRC. I hope someone does a follow-up study. Like you, I am on 14/7 and would love a change in schedule.
Regarding morning meals, I've never been a breakfast eater and food has zero appeal to me in the morning. So my "breakfast" consists of no more than a muffin or piece of (naughty) coffee cake. While I'm sure a nutritious breakfast would be better it doesn't seem to effect the efficacy of the drug. According to my spec pharmacist, the food prior to Xeloda is simply to slow down the absorption of the drug to reduce se's.
Denny, What literature are you referring to regarding protein increasing the efficacy? I always read all the info given to me when starting a new drug but have not seen that mentioned.
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Hi all: I have started posting my food to a website: www.cronometer.com. One of the elements automatically tracked is folic acid, which several folks have said is causing HFS if too high. This website tracks tons of items and seems to be accurate. It's free but has an upgraded version. I have been using the free version which gives me all the information I need.
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jobar-it was with my Capecitabine info when I first started the pills 3 1/2 years ago. That info stuck with me since I always eat an Eggland egg for breakfast.
Wandering-that site looks good. Thanks!
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