All about Xeloda
Comments
-
@horsegirl1 Sorry you're back here but glad you found this thread. So many of us are a pro at managing the SE of X and are here to help. I hope X treats you well and beats back your cancer. Hugs.
1 -
@horsegirl1 Welcome to this thread. The Xeloda discussion is very rich in information and I learned lots of good little tips that help.
It's good if you start with a 7 days a week schedule. I started with 3600 mg over 14 days and I found that the 2nd week was painful in terms of fatigue and transit.
In general, the dosage is decided according to height and weight and we start with the highest dose according to these criteria, but if you find it too uncomfortable you can ask for a reduction in the dose. Personally I find that my body gets used to it and has fewer side effects over time. I am at 3000 mg/day and it is very manageable. Take care of your hands and feet. Hope to read you again soon.1 -
Thank you guys! I saw the other doses on here and I believe I have decided to stay at 3000 mg twice a day. I've never been one to just blindly follow my docs and it's worked to far. 3000 mg has been fine. No nausea, just constipation. I'm using the thick Aveeno on my hands and feet. I will tell my onc at my next appointment that 3000 mg is where I am staying. 😁 I am thankful she's 7/7. I heard the hfs starts around day 11, so that's great. I ride horses so I probably need gloves?
How many have had white blood cells and red blood cells drop low enough to need platelets or stop treatment? I read the side effects and about freaked out. 😬 The cancee is already shrinking. With it being in my skin it's easy to see, so I'm happy about that.
Yes, I read about folate and stopped taking my multivitamin since it contains folic acid. Is there a specific multivitamin without it?
I am having mild joint aches as well, but Ibuprofen knocks that out. I have been surprised how few side effects I have had. They prescribed phenergan and Compazine for nausea but that hasn't been an issue. I guess I expected this to be a savage beast, so I'm happy so far. Thank you for the welcome!! 🥰
1 -
@horsegirl1 I have never had an issues with labs that caused a pause in treatment. My hemoglobin fluctuates on the low side at times so I have had to take iron. Hope you have minimal SE
1 -
Thank you everyone. I am excited that I finally had a BM today. 😂 It's the little things. I ate fiber cereal last night and apparently it worked.
Yes, I read that Xeloda is based on body size. I am 5'6" and 120 lbs so 4000 mg seems drastic. The onc said my side effect profile was great with past meds, so I shouldn't have many SE with Xeloda.
It's a relief to hear there's no major drop in RBC and WBC. The Onc gave me a pamplet on Xeloda but I researched it maybe a bit too much and saw every single thing that could possibly go wrong. It eas terrifying.
It sounds really stupid, but besides having stage 4 breast cancer I am really healthy. 😂😂 My heart, liver, and kidneys are functioning well and I have no medical issues besides CA. Maybe that's why my Onc is being aggressive with such a high dose?
I really do appreciate all of you sharing your experiences to help us that are new to Xeloda. This forum helped calmed my anxiety (the worst part of breast ca IMO) before I started taking it. Hopefully Xeloda will help me defeat this monster. My Onc said there's a 50/50 chance I could be in remission within 2-3 rounds. Maybe that's wishful thinking? I have lived to see my children reach adulthood, so the rest is icing on the cake.
Again, thank you to all my beautiful fellow warriors, and may we all have a complete healing. 🙌💪
1 -
@horsegirl1 Definitely wear gloves as much as possible. My reds are down at the lower end of the chart, but that's apparently okay. I guess that you can buy multivitamins on Amazon without folic acid, but I don't trust those off-brand ones. My onc said that I really don't need vitamins anyway, since my bloodwork is taken every 3 weeks and they keep an eye on the important ones.
3,000 is still a lot, and if you have problems, you could cut back to 2,500. But as long as you watch your folic intake, you should be okay.
Denise
1 -
Does anyone deal with severe (and I mean severe) foot, ankle, calf and thigh cramps?
Yes, I drink tons of water, electrolytes are fine, stretching and massage don't help and I've spoken to more than one doctor about it.
Help! I'm losing lots of sleep here
1 -
@dulcea Yes, I had severe cramps in my calves, thighs, and hands at the beginning of the treatment. My doctor prescribed magnesium even though my lab results were within the normal range, just a little lower. It helped a lot with the cramps and prevented constipation. Good luck to you.
1 -
Thanks @soldanella . I do already take magnesium, but thanks for the reply. I keep trying things and report back!
1 -
@dulcea I'm also a Paramedic (no longer work in the field and probably why I always question my docs) and salt can also play a role in muscle cramps. My first thought was also magnesium, but second is sodium. Are you on a low sodium diet? Low sodium levels will also cause severe muscle cramps. 🤗
0 -
Thank you again everyone for the welcome and advice. I'm on my seven day break and the plumbing is all unclogging this week. 🤭 I figured this would be energy week but I've been a slug, sleeping a lot and not motivated to do much. Assuming this normal at first? I will definitely wear gloves with the horses when I ever ride again. It's encouraging that nobody has had severe RBC and WBC issues. That was one of my biggest fears, besides my hands and feet blistering and peeling. That doesn't sound like fun. Hope you are all having a great week!
1 -
thank you @horsegirl1 . I love salt and I'm doing what I love at this point, so salt is not an issue I don't think. Thanks for the thought and your expertise though. I also drink water with electrolytes. I may have found a solution to the cramps! I have taken a naproxen sodium before bed for the last two nights and I've slept through the night! woo-hoo! Might be a coincidence though.
For me, the loss of energy and motivation comes and goes. I have really good days and days I just want to sit on the couch. Do what your body asks and allows.
I also have low RBC (but not white) but the doctor doesn't seemed concerned. Everyone is different though. My liver does not like this Xeloda. The LFTs rise even after a week off. I am taking another weeks break to see if we can get it down a little.
1 -
I saw the NP yesterday and told him of problems I'm having with Xeloda. Out of this world fatigue, like I'm ready for a nap at 8 AM when I just got up at 5:30 AM. I have diarrhea more often than I should. And then there's the reflux. I think it's reflux even though it feels more like an ulcer and the pain radiates up into my throat and jaws. I have to keep water with me at all times for when the pain hits. I come to realize that my quality of life has really been low lately, so I shared the concerns with the NP. I asked him if he could talk to the MO and see if we can either reduce the dosage (I'm on 4000 mg a day, 14/7) or reduce the days. He got right back to me after he talked to the MO, I was upstairs checking in for my Keytruda infusion! He had already spoken with the MO and she said to reduce the dosage to 3000 mg a day and if that didn't help just to discontinue it. I'm in my off week so I'll start the 3000 mg Sunday
I do not have metastatic disease that we know of so X is strictly a prevention drug for me.2 -
@justsnapd8 With 3600 mg I had many side effects. By reducing to 3000mg it is much easier. I wish you that it will be better with the reduced dose.
@horsegirl1 Thanks for the idea about the lack of salt. My sodium level is within the low limit and my MO recommended broths. This also probably explains my muscle cramps.
No change in red and white blood cells for 5 months under Xeloda. Fatigue is very present on the days of recovery and the first 3 days of break then the energy returns. As much as possible I try to organize myself accordingly.I strongly advise you to wear gloves for all activities where your hands are heavily used and wish you a lot of fun when you get back on your horse
1 -
@justsnapd8 I can commiserate on the stomach stuff. They are telling me I have a mild hiatal hernia, but I know it's from X. I do take famotadine and it does help with the reflux, but not the pain, which occurs all over my poor belly. I have days too where I want to go to bed an hour after I get up. I just start moving faster and getting involved in projects (namely my job) and that helps to bring back some energy too for a few hours during the day. Hopefully your reduction in dosage will help immensely. I have my fingers crossed for you.
Will you always be in treatment for your diagnoses or will you some day be able to go off it?
0 -
@dulcea Maybe I'll look into famotidine, I've taken it before and not sure why I stopped. The NP mentioned protonics but he looked it up and there was a interaction somewhere he was concerned about. I think I was supposed to have 8 or 9 - 3 weeks cycles of X. I still have to do radiation and I can't do that while I'm on X.
@soldanella Thank you, I hope so!0 -
@justsnapd8 I forgot to say that you have to take the fomotidine two hours before or two hours after the meds. Having less acid in your stomach somehow affects how it breaks down the meds.
0 -
thank you all for. The helpful hints. I go from a cancer center in Florida in the winter to one in northern Minnesota in the summer. I had just started on X on the 24th - 2000 mg twice a day for 14 days and then 7 days off. When I got to Minnesota I saw my onc and she changed the dose to 3000 mg twice a day 7/7. She wants me to start that new dosage 5/8. That would mean this should be me week off, but I have only taken the first regimen one week. Any clue on what I should do? Take my week off and then start the new regimen? Also is 3000 mg the lowest daily dose for the 7/7 that any of you have experienced? Meds seem to work extra hard on me, so I was just wondering about that.
1 -
@gigil You do mean a total of 3,000 a day, right? It's okay to start on the 8th. I started at 2,000 a day at 14/7 (and I am MBC de novo). Because I ate too many high-folic foods, I had bad HFS and I was changed to 7/7.
My onc typically prescribes 2,000 a day, and never more than 3,000.
The 2,000 a day at 7/7 worked well for me, but since I didn't realize the high-folic problem, I had to take a 7 week break for my feet to heal. But I presented with a spot on my liver so I asked to go up to 2,500 at 7/7. And that kept me at NED for 7 years so far (along with Herceptin).
1 -
denny thanks you for that input. It helps a lot. Yes, she wants me to go 7/7 3000 mg a day. I have been tolerating the 2000 a day, and I am a bit apprehensive about going to 3000 so suddenly. If you do 2500 a day, how do you take it? Do you do 3 tablets one time and two tablets another?
1 -
@gigil coincidentally, I just read yesterday studies that show it is better for the dosage of 3,000/ day at 7/7. The efficacy and toxicity is better. I have been taking 2,500 7/7 for a little while from a reduced dose of 3,000, but now I want to go back to 3,000 based on the studies I read. I tried quickly to find in my history the studies but it was deeper than I thought. If you want me to find them, then I will when I have more than a minute. The PFS was only an extra month or two, but I will take that!
1 -
dulcea that is reassuring. I am so glad my doctor is right on top of that. She said she sees less side effects with that regimen. Have you read that Xeloda can actually knock the cancer back in some instances?
0 -
@gigil I haven't researched that type of information but for me, it has kept the cancer mostly stable in my bones and liver and knocked back cancer in my lymph nodes so I think it's possible.
2 -
@gigil I take 2 pills in the morning and 3 in the evening. If you have problems with 3,000, you might be able to go lower. I did quite well at only 2,000 except for what I ate. It did keep me at NED.
And now at 2,500 a day, I have been NED for 5 years. Will have a CT scan soon and I am worried a bit since I was off chemo for 2 months since my 23-year-old chest port gave me sepsis.
And yes, Xeloda definitely can knock back cancer in most areas.
3 -
Denny that is good to know. I got my new supply of meds today. I hope I do as well as you have on this med. Thank you for your valuable insight. I have some travel coming up and I am a little apprehensive.
2 -
On my week off I developed a severe sore throat (also in my nose and ears) so I was told to wait until my throat was better to resume round 2. I was only delayed a day and started back Monday morning instead of Sunday. By Monday night my throat was sore again. I took Xeloda Tuea morning and then had a late afternoon nap. When I woke up my throat was so swollen I was gagging and onc said go to the ER. They said my right tonsil was very swollen but I don't have tonsils. I didn't take my dose last night or this morning and called my onc.
The nurse said stop taking it and it's a reaction to Xeloda. 🥺 I was negative for strep, covid, flu, and rsv. I am awaiting a call back now to see what to do. Yes, Xeloda works great for cancer for me. Since it's in my skin I can see it shrinking and disappearing rapidly. It's been like a miracle and now I feel so defeated because it sounds like I won't be able to continue when this was working so well. My throat is already better and they prescribed a lidocaine mixture that I swallow. This was my only major side effect and it was pretty scary. I could breathe fine but trying not to vomit with severe thriat swelling wasn't fun. Anyone else experienced that and been able to continue at a lower dose?
I was taking 3000 mg/day. The nurse was glad I hadn't taken the prescribed 4000 mg because it could have been worse, but she said I would probably have the reaction at any dose. 🥺 I'm not happy right now because this seemed like it was kicking cancer's butt so fast and I was looking forward to it all disappearing. Thanks for listening.
1 -
@horsegirl1 I am so very sorry to hear your news. It's just not fair! Is there a way for them to absolutely confirm that you are allergic to it? Have you started taking anything else at the same time like a supplement or other medication to help with side effects? I'm grasping at straws but hoping it's not the X!
As for me, I am moving on from Xeloda due to bad scans. Actually my bones have never progressed at all since day 1 but my liver likes to be a jerk. I don't think anything I've taken has helped at all except one scan showed almost everything was NEAD after 3 months of verzenio. I am racing through treatments like there is no tomorrow (ha! get it?) My last CT scan, they compared to a PET and they weren't sure if there was progression comparing the two different methods of scans. Fast rising TMs and LFTs rather gave us a clue since I have had neither of those issues. I have been off X for two weeks so far. I have had a low grade temp every night for the past two weeks and significant stomach pain (all over, comes/goes but mostly there, not C). Any thoughts on that? MO thinks it's all just due to X since she can't see anything on the CTs. I went to the ER once because the pain was so intolerable. Ouch.
On to Enhertu next week and my life is in for a big change. I just took off my wiglet three weeks ago and have been enjoying thick, curly hair and have not worried about the wind! Now I will be losing that again. I am trying to make it to June 16th when school is out and I don't leave vulnerable children high and dry. At that time I can also retire. My MO said I should be able to tolerate work until then ( along with nausea meds) and with a few days off here and there. For some reason, I don't believe her.
I wasn't ready for this.
Good luck horsegirl1. I wish you the best and a solution for your allergy or another good treatment that wipes out the cancer.
2 -
@horsegirl1 I am very sorry that you are having this side effect with Xeloda; It's even more frustrating now that your skin lesions have diminished. I also feel a little discomfort in my throat but much less than you. I hope you feel better quickly now. These periods of uncertainty about a treatment change are always distressing. I wholeheartedly agree with you.
@dulcea I'm sad to see you are leaving this thread. We've been following each other for some time with Truqap and then Xeloda, and my MO has already told me about Enhertu when X no longer works. So we'll definitely meet there. I'll be following your "new experience" with interest! I agree with you: this race for treatment is exhausting, even if we try to minimize its impact.
I hope your stomach problems disappear quickly now and that you can reach June 16 without too much inconvenience. I think you're very brave to be so present to your students during these difficult times. I wish you good results with Enhertu.3 -
@dulcea I'm sorry you aren't going to be able to take Xeloda anymore. 🥺 That "GI" cocktail they have me with lidocaine helps numb the entire GI tract so maybe that would help you? Gas X is a lifesaver sometimes too. I don't know if it's gas pains but that can cause horrific pain. It's worth a try? That has to be absolutely miserable. 🥺 It's amazing that you are so dedicated to your students and hanging in there for them. The fever is concerning. Have they checked you for ecoli/salmonella?? It sounds like an infection of some sort. What is your onc saying?
I never heard back from my onc today after speaking with the nurse so I don't know if it's an allergic reaction or a smaller dose would help. I will call again tomorrow if they don't call me. I haven't taken anything to help besides the lidocaine mixture the ER prescribed.
@soldanella, yes, it's really defeating because the Xeloda has been rapidly shrinking everything. It's working and I was so hopeful I could be NED in a few rounds. Maybe they can prescribe something to combat the reaction like Benadryl and Prednisone? If I could tough it out until it all disappears..…no answers yet. My throat is still very sore but no longer swollen. That was pretty scary and I don't want to do that again. I hope to get answers tomorrow, and it's extremely frustrating.
You are all so tough and strong, and I appreciate your advice and encouragement. Yes, fighting to live while combating side effects is tiring. I was fortunate to be NED for several years and just live life like a normal person.
I spent so many years worrying and planning my departure, leaving my husband and kids behind. If I could take that back I would, because it didn't happen. My completely healthy husband passed away in 2021 to Covid while I survived it (we both got the delta variant when it was really bad). That wasn't on my bingo card but it goes to show, we are all living precariously, with or without a terminal illness.
Much love to you all and I pray for a complete healing and lack of pain for everyone here fighting this mobster.
2 -
@dulcea I’m so very sorry that X hasn’t been effective your stubborn “jerk” liver. Guessing it was confirmed before that it’s the same type of cancer? It’s a blessing and a tease at the same time when we’re sailing along living a “normal “ cancer life then our treatments fail us. Nobody realizes it’s a daily struggle because we all just keep taking the punches like champs and use that for fuel to keep fighting each battle.
I admire your dedication to your students they are lucky to have such a caring teacher.I’m sure it’s bitter-sweet but it may be time to focus on yourself.
Sorry on top of all this you’re dealing with abd pain and fever.When my LFT’s were very elevated ( 10x normal level)I was having horrible abd pain. Do they think X caused elevation or liver mets? I was thinking that perhaps you will get relief when LFT’s start coming down? Obviously just a lay person’s thoughts here and not sure how high the LFT’s are.
I will follow you and keep you in my daily prayers. May Enhertu be the one that quiets down your liver! Sending positivity, strength and big hugs❌⭕️
1
