All about Xeloda
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SanJF I have Granicip and Clopamon prescribed to manage my nausea. I'm also having Lifegain (http://www.nativa.co.za/products/category/lifegain...) with or for lunch - I find my nausea worse in the afternoons & evenings and having a liquid lunch is easier on my stomach. I'll take an extra Clopamon mid afternoon and then I'm able to eat a decent dinner (as opposed to an apple, which is all I could face before I started playing with solid food intake at lunch) and take another one with Xeloda after dinner - that reduces my nausea levels to where I can fall asleep easily.
If you're battling with appetite loss as I am I'd highly recommend a supplement like Lifegain - there must be similar in the US. It was recommended by my oncologist, and a friend's oncologist when she was being treated for chondrosarcoma. At least you know you're getting essentials in.
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Hi All,
I am concluding my third month on Madame X with increasing amounts up to the currently 4 /4 - 7days on and 7 off. I’m experiencing problems with reduced breathing capacity. Sinus condition and phlegm in the morning.
Are these typical SE or something unusual? Is there something I can do, short of taking less medication? No sign of H&F disease yet, thank God for that!
Thank you all for your support.
Miao
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Maio, Wow! 4/4! I would be a puddle on the couch and unable to eat! I too have been having sinus issues and I wondered if it had anything to do with Xeloda. Lots of phlegm and nose full! Also, some sharp stabbing pains in my sinuses. No fever, so no infection! I will confess that I have taken my migraine pills too help deal with the worst of it and that it helps!
Seeing Mo on Friday to check blood work and to decide if I can handle 3/2, 7 on and 7 off. Im thinking that if I can stay on the top of the nausea, it's doable. I alternate zofran promethazine everyday. It has helped my qol slot! I will ask him about the sinus stuff too. Way more se's on this drug than I thought! I am starting to feel like wee are getting them under control, finally!
Do your hands hurt? I swear that I feel like I developed arthritis in my hands overnight! They hurt to bend and I even feel a popping sensation in my middle finger on my right hand when I flex them! Wth is that!
Claudia
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Hi Claudia,
No pains in my hands yet, but my feet do get hot and sore after I walk for couple hours. When I do feel pain, usually in my lower back after activities, I use a magnesium oil spray that immediately relaxes those muscles. I also take a good quality DHA oil that probably reduces inflammation as well.
I'm also on an antifungal diet, and taking various antifungal supplements that hopefully are reducing the SE while not compromising the results. But I won't really know till I get scanned next month.
You could try taking some digestive enzymes and probiotics while eating, it might help with the nausea.
How long have you been on X?
One more thing....does your breathing and phlegm problems manifest while you're having breakfast? Have you noticed if a particular food triggers it? For me it's coffee, breakfast, and Xeloda at the same time, I'm going to try green tea tomorrow morning and see what happens.
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Miao, I'm going to pay better attention and try to see what triggers it. Thanks for the tips! The nurse called in more zofran and I am back on track now, yahoo! I do take a probiotic in the morning. As long as I take my probiotic, omerprozole(sp) and zofran before I eat I do well.
I'm not sure what an antifungal diet is? I will research it as I know that mushrooms are really good for you!
Claudia
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I have noticed the sinus thing also. My nose is constantly running, mostly in the morning and then it settles down later in the day for the most part. No pain, just runny. My hands are also sore and stiff and I recently had some cracks under the thumb nails which have been very painful. It is hard keeping them moisturized since I (we all) use hands so much. I can still knit, so I’m happy! Again, they are more stiff in the morning and get more flexible as the day wears on. I did have nausea a few cycles ago but Zofran took care of it and it has not been present for a few weeks. It seems the SEs come and go and I never know what each cycle will bring, but overall, things are tolerable. I increased to 3/3 for this week (from 2/3) so I will see how it goes. I was on 4/3 originally and it was unbearable, so good for you Miao to be able to handle 4/4!
Donna
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I suffer from a runny nose too - when I eat. I hop up to blow my nose at least 3 times during dinner! Doesn't seem to matter what it is I'm eating.
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Hello Donnabelle and Karz,
It's good to hear that I'm not alone dealing with those symptoms, which on a scale of one to 10 are quite tolerable. I had another episode this morning however, that gives me pause. When I got up to go to the bathroom this morning I felt very weak and lightheaded. My urinination went on for ever....which surprised me, when I got up I felt even more lightheaded like I was going to faint, my breathing was short and the fatigue immense. I measured my BP and it was 107/95 I went back to bed and started replenishing my dehydration with plenty of water and various minerals. It took bicarbonate of soda and four hours later I started feeling normal again. my BP was at that time 130/ 80
Is this a common SE of X? Have you experienced this and survived over the years of this therapy?
It's listed as a serious SE by the manufacturer.
I have bloodwork scheduled on Friday, so I'll soon find out if something is out of wack.
Except for the sinus condition and fatigue I can't really complain muchabout this medication.
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Mia- when I get up in the morning I have to sit at the edge of the bed for a couple of minutes as I’m so dizzy I can’t walk. I go to the ear doctor on Thursday. I’ve been having issues with one ear so maybe that’s part of it. I haven’t really had much trouble with my feet till the past week. They don’t hurt but get so hot like they are having their own hot flash.
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Hi Everyone,"
I was away, but now back and reading everything. I have now been on Xeloda for 1 week on, 1 week off, and I'm now on the 5th day of the second week on. I'm feeling great. After faladex and verzenio I feel like no cancer and no drugs. Yay. But I'm wondering if this is short lived. I have had redness in my hands but not much on my feet. I'm actually using an aloe lotion i got in Aruba that seems to be working fine on my hands. Couldn't find udder cream til the other day. But here goes the crazy part:
I have had a cough off and on for a long time. Sometimes really bad. I will not bore you with a very long story, but someone told me to "put Vicks Vapor Rub on my feet at night" I kid you not. I started about the 24th of July. It really does seem to be helping my cough, and my feet are not red or dry at all.
So "intothewood" your Vaseline might be what does it. My Dr. is at the Mayo Clinic and he says that the 1 week on and 1 week off is supposed to be as effective as 2 weeks on, but reduces side effects. That side effects tend to happen or worsen about the 11th day or so. So 1 and 1 helps that. Has anyone taken this drug without side effects?
Karen
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hello Dianarose,
Yesterday's, my MO told me to continue taking the full dose, which I did in the evening, as I felt much better by 1.00 pm yesterday.
This morning I was okay again, no fatigue or fainting feeelings.
To combat fatigue, since I am hypothyroid, I have been supplementing my medication with 5 drops of 2% Lugol Solution, and OMG at times I feel almost like my old self again. I have more energy and can get more done before I get exhausted, I have mental clarity, my mild depression is gone and I feel optimistic about the future....which is weird because nothing has changed in reality about my prognosis...
It will be interesting to see if the extra energy I experience will translate in better hemoglobin numbers.
Good luck at your ear doctor...I too have issues with my right ear, please let me if the fainting feeling we're experiencing is related to it.
Thanks!!
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Mia- what is Lugol
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Diane, Lugol solution is basically a form of iodine that the body can easily absorb invented by a French doctor in the 1800s. Lack of iodine causes cretinism among various diseases, as iodine is involved in many body processes. It's essential to human health.
The Japanese women ingest 300 times more iodine than we do, based on their diets rich in soy, algaes and fish. its believed that their diet protects them from breast cancer, because when they come here and eat the typical American diet their BC risks are the same as for the rest of us.
Iodine is also a disinfectant, an anti microbial and an antifungal. In the case of a nuclear attack, you would take Lugol to protect your thyroid from the radiations.
Today is a special day for me...because I managed to do many things one after the other witha little rest in between, usually one of the chores would have wore me out....tomorrow I plan on biking to MSKCC for my bloodwork. It will be a one hour bike ride in the heart of Manhattan...I could not even envision this a few months ago!
I hope the capecitabine works for a long time. I love the week on week off type of thing. It gives a chance to recharge, I hated how femara made me feel. For lunch today I’m having two of these, made with raw vegetables. Chlorophyll is another way to oxygenate the cells.
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I agree Miao. I hope Madame X works for me for a long time. It is so easy and flexible and the week on/week off is kinda cool and convenient. I had such a good response after two months, but I realized that some of that may be due to the fact that for part of that time I was on a higher dose. So now that I have the SEs under control, I asked the doc if I could go up from 2/3 to 3/3 because if this is working, I want to throw as much as possible at the damn tumors! So far on day 3 of the higher dosage I am doing fine. It’s a weird phenomenon, but having had such success makes me worry even more because I want it to continue and not just be a one time thing. I guess we can always find something to stress about.
Donna
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Donnabelle, I’ve just finished my first course of 3/3 from 2/2 but on a 14/7 regimen. I had few SE with the lower dose but TM’s we’re going up & I could feel progression in my joints & breast & skin mets so we upped dosage. I’ve had burning feet, fatigue & nausea at the end of the course & now 3 days into my “break” BUT I can feel a difference in my cancer symptoms. I have scans, blood work today & will talk to my Onc tomorrow, maybe do 7/7 like you? I just keep hoping I’ll wake up one morning & find out this has all been a bad dream. Maybe we’ll both find that sweet spot soon?
Les
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Donnabelle, I know how you feel, I remind myself during those fearful moments of all the brave women on this board that have been doing very well on X for YEARS, it's so great that we can learn from each other and those that have used these drugs before us.
We need to also use positive thinking to our advantage...who knows...there might be something about that theory, although no one can explain it....like Lester let’s hope that we can all wake up tomorrow from this bad dream....
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well had to call my onc office today. My blood tests and such have shown great improvement over the scary numbers i had at the start. My onc has even lowered me from 4 x 4 , 1 week and one off to 3 x 3, i have been so excited about how good things have been looking. But....last 2 weeks i have had a pain in my right back area, sort of even with my boobie. Finally called the onc even though my reg appt is next Wed. Glad I called, when i described all to the oncs office they said they want to move up my next pet scan to monday so she have the results before my onc meeting on wed.
Deep breath and hoping the pain is something i caused by overdoing my gym stuff and not the crazy c ,a pal who is retired nurse suggested I may have done something dumb like a cracked,rib or something
Gonn be a tough weekend,
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Hi Donna,
I was just reading your C history and saw that you were on Verzenio. Your time line is similar to mine. Orig Dx in Aug 2013 at Stage 2, Taxol & CA, then Lumpectomy, then radiation. Femerol from 6/2014 until 10/2017. Routine check, TM's 34 then 36, then pet scans with suspicious cells. Then Falodex 12/2017 adding Verzenio in Feb 2018. 150 mgs twice a day, then reduced to 100 twice a day due to SEs. Mid May had clear or almost clear pet scan and TMs down. Late June TMs up and new pet scan showed more cells. Cancel Verzenio and start Xeloda 3 (500 mg) twice a day, 1 week on and 1 week off. I feel really good. I do not miss Verzenio. My question is why did they take you off Verzenio?
Karen
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and after a short two months with Xeloda and Navelbine I'll be starting a new treatment when I see my oncologist on Tuesday. CA153 has jumped from around 800 to almost 1500.
Will be the 6th treatment regimen in a year. Really hoping to find something that will work longer term for me!
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Oh Katz, I hope that your next treatment is the one that will make a difference for you,
Proud, I hope your pain is as simple as a muscle strain. Please keep us posted when you get your PET results.
Lester, yes! to finding the sweet spot! I hope your scans show good results.
Miao, I am amazed at how in tune you are with your body and are able to respond with supplements to help with your symptoms.
Kim, after a few months on Verzenio/Faslodex, my scan showed shrinkage in the liver tumors, but I had a new spot on my spine. We decided to continue for a few more months, but my next scan showed marked growth in the liver mets which is why I switched to Xeloda. Great success so far. After two months the liver Mets shrunk 50% so I’m jazzed!
Praying for good news for us all!
Donna
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Thank you Donna,
I hope I can get clearer in my posts so that I'm a better contributor. I'm getting so much out of it that I want to add to it just not take.
Thanks,
Karen
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my ALT and AST which had been normal for the past three years have skyrocketed since I started taking X.
Are these the signs to what’s to come? Mets to the liver? Or I am freaking out for no reason?
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I've been lurking here since April when my MO said that Xeloda was the next option, but today it became official. I'll be doing 2/2and 7 on /7 off to start. Hoping it comes quickly & works! Per MO's recommmendation, going ahead and making sure to really use good lotion, etc. before it even starts
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We are getting lots of members joining this thread so it's hard to keep up with everyone. Wishing those that have to move on, all the best. I have been on X for 3.5 years. My TM's have been creeping up, but last labs they took a rather large jump, biggest one for me, but not as big as some of you. I am hovering in the 200's now. Onc is letting me stay on X for now, as I have some trips planned. Scans in November, then probably moving on to Ibrance or another one, but don't remember the name of it. I guess it's fairly new. Will have to call to find out. He also said that if we were not doing TM's, he would just keep me on X until I have symptoms, of which I have pretty much NONE. No pain what so ever. Very grateful for that.
So, wishing everyone well and sure praying for a cure! Have a great weekend all.
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I think my MO will be taking me off Xeloda. The last three cycles my marker has gone up each time. She is supposed to call me on Monday. Really bummed out. Just got used to having my hair back. Plus the side effects have been tolerable.
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so sorry to hear the dang pills not working for all, but also hoping my pet scan does not end up showing nasty stuff on Monday either. Got a neighbor pal that offered to drive me down for pet, not necessary but i never turn down an offer of help.
Took a 2 year old oxe pain pill so slept like a rock last night!
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Dianarose, I’m having a pet scan next month and I suspect the same will happen to me if there’s progression, but since I’m feeling so great, and like you I find the SE manageable, I’m going to request to remain on it till I start to feel sick, since we are likely to experience progression no matter what we’re on
Of course, I’m not sure how my Mo will respond to this. Probably won’t go along, but I will try.
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Mia- the first chemo I did was CMF. It did not fail me. The idiot MO I had at the time just had me do a normal regimen then took me off. My tumor marker went down to 34. It's very doable. I worked the whole time. Most don't lose their hair but I did.
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Diane, I don't know much about CMF, I will research. Is there a chance you can go back on it?
They are more flexible these days about going back and forth on various hormonal and chemotherapy TXs.
They have found that there's a renewed response to old TX after they are stopped for a while.
I forgot: what does CMF stands for? Thanks!
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Mia- I’m going to discuss my options tomorrow with MO. I don’t remember what CMF stands for. One part is an infusion. One part s push anthe the other is in pill form. Of all the chemos I’ve been on it was the most doable. Never once needed a nausea pill. The only side effect I remember was had a hard time sleeping. Now I have Xanax it should help with that. I don’t want to ever do A/C again!!! I hate not having a plan or not being on something. I have had a terrible pain on my lower left side that is scaring me. It goes around to my lower back. I had scans about two months ago and it said there was less cancer in my abdomen. Now higher tumor marker and pain. I tend to go down hill fast. It’s a living nightmare.
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