All about Xeloda
Comments
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@ces68 : I am happy for you that the break before your 7th cycle reset things and that your stomach is doing well.
For the eyes I'm going to follow Denny's advice and see if I can have Systane gel because the drops aren't really enough. I'm going to make an appointment for my annual ophthalmic check-up and will discuss it with the ophthalmologist.
Fatigue is not easy to manage and at 3600 mg/day 14/7, I feel like the cycle is really long. My oncologist wants to hit it hard but he said that we would reduce the dose if the disease regresses.
I hope you will continue for a long time with little SE.
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@dulcea It took me a long time to figure out that I have post-prandial hypo-tension. You can Google to see the details. But for years, I would get so tired after eating (especially lunch). My onc thought that I had hypoglycemia, but I bought a glucose testing kit and my glucose is fine. I have no idea why I got the post-pran, but now it makes sense.
After I eat, my blood rushes to my stomach to digest my food, which takes blood away from my heart. That causes my BP to drop. And I don't know if I wrote this already, but when I had my echo, the tech had just taken classes on post-pran and said that the vagus nerve that is involved, affects the digestion and goes clear up to our brain. And that explains why I have double-vision, since it can also affect those nerves. And lately I have realized that when my BP is low, my vision is worse. As my BP rises, my vision is better.
@dawn68 Great news that you are feeling better and I hope that it continues!
I don't know about everyone's weather, but I am in PA where we have over a foot of snow and ice and right now the temp is 9 degrees with a wind chill of minus 7. The next 2 days, we will have wind chills of minus 30! I hate winter….
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@denny123 : How can I understand you, I hate having to fight the cold. I hope your house is heated well. Here in Switzerland we have a mild spell and a little sunshine which gives us a taste of spring, which makes my brain start looking for ideas for my vegetable garden at 1600m. 😉
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@soldanella Last winter wasn't too bad, but this year, it is ridiculous. I have oil heating and keep turning up my thermostat. I sell stuff online and my computer is down in my family room, which is much colder than upstairs.
It is now 59 days until spring and I am ready! I am on gardening sites on Facebook and the flower and vegetable pictures and posts are starting up again. So there is hope!!!!
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Oh boy. My eyes are really bad. I think they are also bothered by certain types of lighting because at work, my eyes are tearing up the entire time I'm there. I have to tell every one that I'm not crying!
And yet another symptom: mouth sores. So bad that my MO decreased X by 300 mg. They were pretty bad a few days ago, but seem better now. The worst part is not being able to drink enough water because it hurts too much. The magic mouthwash makes it easier to eat, but you can't taste the food. I did experience this on one of my other TX too. Such silly side effects.
Last night I had some bad stomach pain which made me wonder if it was what @dawn68 had experienced. It felt like gallstones again but I had my gallbladder removed almost a year ago, so it can't be that.
I guess I am still thankful that I don't have hand/foot stuff.
0 degrees here (MA) this morning with about 6 inches of snow on the ground. I don't mind winter but I do mind 0 degrees! Tomorrow will be 30 so it should feel like summer! @denny123, I am also perusing seed catalogs etc. It's never to early to plan a garden! Stay warm everyone!
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@dulcea I had mouth sores in the summer and it turned out that the flavored water that I was drinking had a lot of citric acid.
And I also have pains in my gallbladder area sometimes. And since I have diverticulosis, I was eating too much popcorn. And in the summer, corn on the cob gives me pains also. So think about what you are eating. I have to avoid seeds and nuts, also.
Hopefully you can clear up the mouth sores so that you can drink more water, which will help your eyes.
This morning, PA was minus 11 degrees! Really tired of this….
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@dulcea and denny123 :
Ah well girls, it's definitely winter. It’s snowing here this morning and we’re going to have to work the slope to get the car out.
Dulcea I'm sorry for the mouth ulcers; it is something very disagreeable; I use mouthwashes with baking soda for prevention 3x/day and also it is good to avoid tomatoes, lemons, nuts and cheese.
From the start I had pain in my stomach. The MO prescribed me Alucol, a whitish liquid to swallow which acts as a gastric bandage to be taken 4x/d 1 hour after meals. I don't have any stomach pains anymore.I'm going to come down from my mountain (the rental is occupied until March) and find the city with milder temperatures but also grayness. Good luck to you for the cold winter weather. Enjoy the catalogs!🌻
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thank you @denny123 . I did a quick check of my electrolyte drink and yes, the first ingredient is citric acid. So I guess that's out now. I do tend to dehydrate easy so have always had some type of electrolyte in my water. I know about the other foods that are acidic and do stay away from them.
I am brushing my teeth with baking soda (toothpaste hurts!) but will rinse with it too.
I have only had the stomach pain twice so hopefully that was just a one-off or two-off. This pain is higher like right under my sternum. I just can't have those pains again!
@soldanella I am trying to picture what you are looking at every day in the mountains. I bet the snow is beautiful too. Lucky girl!
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@dulcea I am in PA and would gladly send you some snow! The last few days were close to or below zero all day.
I am now drinking the iced-tea flavored stuff in the little packets and diluted with a lot more water than recomm3nded. My city water has a metallic taste and Brita filtered water also tastes terrible to me, lately.
So the flavoring helps. It does have citric acid but I don't have problems with it since I dilute it so much.
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@denny123 : Thank you for sharing. We went back down to town but I would like some snow from your place!
I am on my 10th day of my 2nd cycle of Xeloda (3600mg 14 days then 7 days off.
Now for 3 nights I've been having insomnia to the point of having to take a sleeping pill, I just can't fall asleep! I try to take naps during the day but no sleep comes.
Additionally I have small spots on the top of my face that itch a little. Should I ask my oncologist about a dose reduction?
Today I "celebrate" my 2 years of stage 4 diagnoses. I thought I wouldn't make it in such good shape. On this forum and thanks to the kind messages I found very positive glimmers which allow me to move forward peacefully now1 -
@denny123 I have plenty of snow here. It snowed 6 days ago and about 6" and since it's been so cold, we still have it. It crunches under the feet when it's this cold. I would love to see Soldanella's view of the snow in the mountains though.
@soldanella I think when side effects really interfere with your life is when you dose-reduce. Weight loss, severe nausea, severe diarrhea, neutropenic fever, are the side effects that I was reduced doses for. Some things we can put up with and some things we can't. Can you deal with a few itchy spots or is it very severe? That's how I think about it anyway. If you are tolerating 3600/day, then stick with it. I am afraid at having reduced by 300 mg/day to now taking 2,700 mg/day. Will it make the cancer come back?
And BTW, my mouth is better already having reduced the dose and stopped my citric acid-containing drinks.
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@soldanella My onc won't prescribe over 3,000 for anyone. I am at 23 years of Stage 4 and did okay on just 2,000 at 7/7. But when my feet got horrible, my onc took me off Xeloda for 7 weeks. I then developed a liver spot (the spot is still there, so most likely not cancer), so I asked to go up to 2,500 a day and have remained on that. So I have been NED for 7 years now.
If I can stay at NED for so long on a lower dose than what you are receiving, it sure seems to be enough.
In the beginning, I had a red itchy spot on my scalp and was prescribed liquid Clobetasol for it. But it stayed until my dose was reduced and is now gone.
@dulcea I'm glad that your mouth is better now. I tend to blame chemo on every weird thing and I am now looking for other reasons for my various problems.
Like my onc tells me, a lot of my problems are caused by my age….75. ugh.
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@dulcea : I am glad that your mouth ulcers have diminished
It is indeed an important reflection the benefit/risk of asking to reduce the dose but in any case my oncologist is very attentive and I trust him. If he thinks that I can continue like this, I will.
Another night where I do not sleep, I count sheep in the snow! ;-)@denny123 : my MO told me that if the next PET Ct is good in March and the SE are too bothersome, he would reduce the dosage. I hope to hold on until then. He is very attentive to the quality of life.
Like you, I had a lot of pimples on my scalp under Truqap that have completely disappeared under X.
I agree, we blame X for all our discomfort, even if we get older. But after all the years of treatment that you have had you can be very proud of yourself.0 -
@soldanella Thanks! I hope that you can get some sleep. I had problems at first, but sometimes Motrin PM helped me. But sometimes I only get 3 hours of sleep a night. So I take a nap the next day, and then that night I can sleep.
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I'm in the 2nd cycle, on the 4th day of break from Xeloda (14/7) and it's not easy. It's mainly the stomach that has been bothering for 15 days, a lot of nausea, cramps and colic. Immense tiredness, I'm just starting to recover from my nights. The first signs of M/F syndrome are starting to appear, with burning feet and small sores on the fingers.
I am waiting for a call from my MO to know if I can reduce my current dose (3600mg/d) because it is exhausting.
In good news, Ca15-3 is down as are my liver enzymes. Cea continues to rise probably because of the chemo. Some symptoms such as breathing difficulties, pain in the ribs and throat have almost disappeared. That’s a good sign!
Hope you are doing well under Xeloda1 -
@soldanella I am sorry to hear about your stomach issues. Yes, definitely ask your MO to decrease your dose.
The fatigue has caught up to me too. I am very tired in the afternoons and like I said before, if I sit down, it's all over for the day. I miss the weekends of doing 100 things. I just want to sit and watch t.v. now. That sucks. I keep telling myself it could be worse though.
Where on your fingers are you getting the sores? I have sporadic psoriasis in my fingertips but this time it is worse and I was wondering if it was due to the X or just the psoriasis getting worse. Still nothing on my palms or feet though, so I am thinking it's just psoriasis.
My tumor markers are following the same pattern as yours too. It sounds like maybe the X is working for you if your cancer pains are reduced significantly. That's great news.
Do you still have insomnia?
Quality of life is important so remind your MO of that! I'm sure he/she shouldn't have a problem with reducing your dose. Let us know how that goes.
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@dulcea yes, fatigue is really a very present topic. I also realize that I find less pleasure in doing activities that I used to love. Playing the guitar takes a lot of energy just to get started, even reading becomes difficult because I can't concentrate so much. I shorten my walks because of the still slight pain in my heels.
I have psoriasis on my scalp and elbows and it had developed a lot under Truqap. With Xeloda it has completely disappeared! On the tips of my fingers there are small cracks like when you cut yourself with sheets of paper. So I put on plasters and my husband is on dishwashing duty!
I finally got better sleep in 3 days.
I'm happy for you that your markers are going down too. It’s good to hear you say it. We are on the right track, I hope so.
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@soldanella…you really should ask for a decrease. Even though I am watching my folic acid, I still get the cracks on my fingertips and where my fingers bend in the inside of my hands. I use Bacitracin and bandaids.
For me, the cracks are when my hands get too dry.
I also get so tired but it is probably because I have been on chemo for so long.
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@denny123 : Thanks. My oncologist just called me and reduced from 3600mg to 3000mg/day (14/7). Phew!
I've already bought plenty of plasters for my hands.Still some intestinal problems today but it's starting to get better.
When will your port be taken away? Do you have a date already?
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@soldanella I am so glad to hear of your dose reduction. Hopefully things get better and soon!
I also have lost interest in everything I used to like doing. My poor dog! I don't think it's depression (yet) but a side effect of X. It's just making us too tired to do anything. I need a pep pill!
And overnight, I have developed two identical cracks/peeling, one on each foot which I assume is H/F. My toe tips are a little flaky too. I thought it was just the soles of the feet and palms that were only affected. I was putting clobetasol on my finger tips assuming it was psoriasis and they have cleared up but I wonder if the H/F goes in cycles like psoriasis does. Very flaky for a few days and then healed up and normal for a week or two, then back to flaky and peeling again. Interesting how this is so similar to psoriasis for me. Maybe I'll continue with the clobetasol and see if that continues to work. Or maybe I'll do an experiment with one hand with diclofenac and one with clobetasol. LOL. I also just bought a lot of band-aids and have a bunch on me now!
Hang in there everyone.
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@soldanella Yay for your reduction! I sure hope that it helps. I have an appointment with the surgeon tomorrow about my port. I am going to ask if I can keep my current one and just get a new one on the other side. My nurse daughter warned me about the possibility of the bacteria spreading through my body, causing complications, if my present one is removed.
@dulcea I do have foot cracks pretty often since my feet are so dry. And I do eat folic acid foods, although in moderation. Since you just stated on Xeloda, you will probably have a lot of problems in the future. Before I knew what to eat, I had so many toenail infections. They will just start to bleed and get very sore. I hope that you escape all of the problems, though.
As far as a cycle of problems, mine can happen anytime and if I eat too many folic foods, I can expect to have problems the next day. I am on 2,500 at 7/7.
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So here it is!! I'm on the 5th day of the first week of my 3rd cycle and I've had a fever since yesterday. I saw the oncologist today urgently, my white blood cells and neutrophils are OK. He thinks I'm having the flu again, the cold season definitely doesn't do me any good.
As the platelets have dropped below the standards, we stop the Xeloda and we do another check in 2 days.🤞1 -
@soldanella chicken soup and bed rest. Stay home and stop getting the viruses that are out there! Do platelets go down as a result of the flu or X? I hope you feel better soon. I'm glad the fever is not due to X so that you can continue on it. How have you been feeling on the lower dose?
I work in a "petri dish" (400 students ages 5-12) and have done so for 20+ years so I have built up a good immune system catching everything the kids could throw at me. Knock on wood - I will regret saying this - I don't get sick anymore. Well, except for COVID. Even if I do catch a cold it's like a half cold.
I have my scan coming up in a few days and I fear I will be on to something else. X hasn't been that bad so I do hope to be able to stay on it.
Get better soon @soldanella !
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@dulcea thanks dulcea. yes, I use salty broth because my sodium level is also low. The decrease in platelets is due to Xeloda.
I'm not sure if it gets better with a lower dose since I only took it for 5 days before my flu.
I think you are very courageous to work under Xeloda, personally I think I would fall asleep in class.
I wholeheartedly support you for your next scan, hoping that X does a good job.0 -
@soldanella hope you are a little better by now.
Work is my sanity against cancer. No one at work knows I have MBC so it's like I'm living a normal life there. I only work 5-6 hours a day too. I could not work 8 hours. I wake up in the morning well-rested and just start the day and keep going. Often I come home and crash on the couch for a few hours before getting up and getting ready for the next day. I am wide awake at work though because I work in a behavior program and I must be on my toes the entire time I am there. I can't fall asleep because I need to keep everyone safe. Maybe it's the adrenaline that keeps me going. It's good for my brain to still do the academics and to foresee trouble brewing with my young friends to nip it in the bud. My watch tells me that I walk over 3 miles a day at work. I'll take that! It truly is keeping me alive.
That being said, I look forward to weekends and school vacations. I do feel like this is the end of my working career and often think how much I'd like to retire now, except I am not old enough to collect social security, which would be helpful. I would be worried staying home all the time though as I have lost a lot of motivation and the couch might be my best friend then. I am a mover and doer and want to continue that as long as I can.
Sorry, didn't mean for that to be a novel about my life! I think the point is we all need to do something instead of just sitting around thinking about cancer. You still ski and hike you said, right? Good for you! Keep it up!
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@dulcea I think it's great that you have such a rewarding job that keeps you from thinking about cancer and I understand your apprehension about retirement. Your job seems fascinating to me.
Personally, I retired early last year; I have been a nurse for 38 years. I have saved enough to live for 5 years on my capital and I receive a small old age pension. At the time of diagnosis with my husband I calculated 5 years of survival (I know it's a bit stupid) lol. But I told myself that I should make the most of my remaining life.
The xeloda stops me from thinking about doing activities (lack of motivation!), under Truqap I had much more energy.
I saw my onco today, the platelets are still going down (75,000 to 55,000). We'll check again in 2 days. He thinks it's due to my flu condition.
I asked him to do 7/7 with X to have fewer side effects and toxicity. He agreed. PHEW!2 -
I got a CT scan yesterday and it showed shrinking or disappearing tumors in by liver and lungs. Xeloda works!
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@Anglais It’s great to hear that your metastases have diminished and it’s very encouraging for me. What dosage do you take? Are you doing 7/7 or 14/7? Thank you for sharing.
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@AJ That is absolutely wonderful news! It is nice to hear of success on Xeloda. IS that your second scan on it? Congratulations! Thanks for letting us know.
@soldanella I hope you get better soon. And that's great news to have your doses split up more. I hope that decreases the toxicity and side effects.
I think about retiring all the time but my husband and all my friends are still working so I would have no one to play with. I go glamping in the mountains with my family on long weekends and that's what I want. Family. That and my 40+ orchids, my 50+ house plants, my new interest in watercolor paints, and my dog! I stay busy!
Hang in there everyone. Spring is coming….as I watch it snow..
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AJ - A big congratulations to you!
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