All about Xeloda
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Sandilee, yeah for you. You keep on keepin on too!
LFF, glad you survived 5th grade camp. Are you smarter than a 5th grader?
Hi Lisa, sorry you have to be here and wishing you much luck with Xeloda. It seems to work well with most. And thanks for the tip on the Vicks. I'm up to trying anything! I've been with Madame X for a year now.
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Mediclisa. My feet feel better today-thank you. Like you I'm afraid to lower my dose even though my MO said I could/ should. Since X is the first treatment that has worked for me I'll hang tough at 4000 until I really can't.
Thanks again
Babs
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Goldie - Congratulations on being on Xeloda for a year. Reading your post gives me hope. I love your positive vibe with the "don't look down....." Try the Vicks - it seemed to do the trick for me. I worked this weekend and logged in 12,400 steps and I feel I couldn't have done it without that healing. For about $4.00 - it could work for you.
Babs - I am glad it helped you even if it was a little. I am always searching for different lotions, oils, etc., to try. I am going to try Vicks every 4 days if needed as I am going into Week 2 - only 56 more pills to go - yay! I also bought NatraCure Cold Therapy Socks on Amazon for about $34.00. You put the gel packs in the freezer. On the days that I am not going to use the Vicks (warmth), I am wearing the socks at night and now trying Eucerin Intensive Therapy Lotion. The coolness feels really nice on my feet. I also bought Earth Therapeutic Aloe Moisture Gloves Ultra Plush that I wear at night with the lotion for around $9.00. I also ordered MIcrowave Therapeutic Hot/Cold Gloves for $10.00 - will see how the coolness works on my fingertips with lotion, should be here soon. I am searching for the right combination as I am on my feet for my job and have to do a lot of typing! Good for you for sticking it out with the 4,000 mg....it's tough! I told my MD to let me worry about the side effects and it's his job is to keep me alive. Will see how long I last on that dose! I have my scans and blood work on the 25th - hoping the liver and lymph node lesion settles down and the bones stay stable without adding any more spots! That's all the tips I have so far - not much, but will keep on trying! The snow here in WI is finally melting and Spring is around the corner!
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Lisa, I had some Vicks and I did try it. On my feet and hands, wore gloves and socks to bed. They do seem a bit better. Going to put it on several times today and do the same tonight. The "Don't look down on someone" came from when I saw ladies on this site fighting. It really upset me. We are all going through the same thing. Must we really fight? Goes with the same "if you can't say something nice to someone, don't say anything at all". I started out with 8 pills a day, it was horrible!!! Dropped down to 4 a day and worked my way up to 6 a day. I think our bodies need to learn to adjust to the medicine. Please do keep us up to date on your "trials" for the hands and feet.
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Lisa, I LOVE YOU! I can't believe how well the Vicks Vapor Rub helps! My hands and feet are like %75 better! And I'm into my second week of X, which is when they really start to get bad and it's like "DON'T TOUCH MY HANDS". It would hurt to open them, hurt to close them, etc. Vicks is my new best friend. And Benadryl for the itchy rash I get on the tops of my legs, arms, back and chest. I forget who turned me onto that.
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I've been reading the posts about using Vicks VapoRub on Xeloda skin and paying attention to see what results other people have had.
I looked it up. It's really VapoRub. Weird. Anyway...
Goldie's reaction really startled me. She's had such great results!
You're putting socks and gloves over that goo, right Goldie? Does the scent remain after handwashing? As I recall that stuff smelled pretty potent.
And now I'm putting Vicks VapoRub on my shopping list. I can't believe I'm this excited! As my mom used to say when I'd overreact to something like this, "It don't take much!". Meaning it doesn't take much to get me excited over the silliest things. And the bad grammar was totally on purpose.
LOL
Kessala
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Kessala, the smell is not there after washing. But when you put the gloves on, which I did during the day and night. But at night, my hands are usually up by my face, and I can smell it. So after a bit last night, I took the gloves off. Hands looked good in the morning. But after showering and not having put anything on, I can see the cracking and splitting, but it's not near as bad as without the Vicks. The worst spot I get is the webbed area between thumb and first finger.
2.5 years for you with Madame X. I don't love her, but I do like her!
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Help! My nose has been replaced by a faucet that does NOT have an off setting! I've been on Madame X since first wk of Dec. This cycle the rhinorrhea - runny nose is non-stop. Just running mucus not any congestion. It has gotten progressively worse with each "ON" week. I have to keep a tissue stuffed in each nostril or I drip on everything. I have tried Zyrtec, Claritan, Flonase, Nasonex, a bunch more antihistamines I don't remember the names. I tried 'em all. I had a tissue stuffed in my nostrils and actually dripped through onto my Kindle in 30 min. The stuff running down the back of my throat is adding to the nausea, just what I need. Zofran to the rescue.
All suggestions welcome. It's always something!
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Sparki, I too have the drippy nose, on top of allergies. Eyes do the same, burn and water. The nose seems to be worse for me if I'm doing something active or bent over. Just sitting, not too bad. I take Benadryl, but only at night. But I do find myself running for tissues! I'm sorry I don't have an answer for you.
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Sparki, I've got the same nose dripping problem as well as watery eyes. I'm not congested, no coughing, have no allergies, the discharge is not mucus but like clear water. I bend over, gush. I am active around the house doing chores, gush. I can barely lean over to make our bed without dripping on the sheets!
One time after multiple nose blowings and wipings and the "water" flowing constantly I tore a piece of Kleenex in half and rolled each half into a tampon shape. I gently screwed each "tampon" into my nostrils and continued my housework. I looked like a demented walrus but I was able to ignore my running nose until I finished my vacuuming.
I notice the nose running mostly when I'm up and doing things, bending over. Not a problem during the night or when I'm sitting watching television.
My eyes have the same problem. Water-like discharge mostly overnight. By morning so much of this watery mess has dried onto my eyelashes I have to pry my lashes apart with my fingers so I can open my eyes. Like the nasal discharge the liquid from my eyes appears to be tears and not infection. In the morning as I'm starting to wake up and do things around here my eyes water so much that it runs down my face.
This has only been happening to me since I've been on Xeloda.
Kessala
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Round 4 is done! The bottle is empty and I can have 7 days of "normal." This cycle was a bit easier in some ways. I never got the constipation, which is one of the things I hate most in the world. I'll take fatigue over constipation any day of the week.
Can't really comment on Xeloda and my eyes. Since I have thyroid eye disease, my eyes are always in some kind of distress. Lately has been worse, but the dust from our construction zone is my primary culprit. However, the amount of sneezing and sniffling I am doing is just down-right distracting! Such an annoyance. I have even been woken in the middle of the night due to a sneeze. So ridiculous. I need my sleep.
*susan*
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Sparki-I too have the runny nose. In the AM, as I'm getting ready for work and putting on my make-up, my nose just keeps on dripping-so annoying. My MO said it's not a SE from X-I think she's wrong after reading so many have this too!
Kessala-I'm still using the Vapo Rub- thus far thus good. And today I bought Sketchers!
I'll try almost anything to be able to tolerate the SEs since X is working for me!
Thanks all
Babs
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Goldie - I am SO happy it is working for you. Hopefully, others will have the same results. It is so weird that I saw the little blip on the internet and tried it! I guess I really don't smell it to much - brings back memories of my mom putting it on me for a cold. Yay - a small victory against Madam X!
Bab's - I am so glad the Vick's is also working for you - great on the Sketchers. Again, it is night and day with my feet and I did a 14 hour day today and didn't have an issue. They honestly don't hurt like they did and also aren't peeling so much.
So for the drippy's out there - Try Vistaril (hydroxyzine) which is also an anti-histamine. My Internist prescribed it for me when I couldn't sleep and Benadryl wasn't cutting it. It will take care of sneezing, runny nose, hives, nausea and vomiting. I feel it works better than Benadryl. A nice little side effect is for anxiety and tension - it however doesn't "dope" you up. My Internist felt that I wasn't sleeping because I am always thinking - haha, so I take two of them at night when I just can't sleep and it helps me. I don't wake up "groggy feeling" like I did with 50 mg. of Benadryl. I bet you could take just one per day and maybe that would clear up the drippings - check with your MD.
My Hot/Cold gloves are on their way and I will let you know how they work. I am so excited that Xeloda is working for most of you and have been on it for years - very encouraging - gives me hope! 40 pills to go till my week off starting on Monday! Can't wait!
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Kessala,you describe the watering perfectly! I have lost a lot of my eyelashes due to that, especially my left lower lashes. I guess I sleep on that side the most.
Susan, I never had constipation with X, just the opposite. Explosive/Watery Diarrhea! I think I would rather be constipated! Never heard of thyroid eye disease.
Babs, I agree that your onc is wrong about the watering not being a SE. BS I say! I have some sketchers too, with the memory foam soul. I'm afraid I'll never be able to wear flip flops again!
Lisa, thanks again for the info. Monday starts my week off too, but this round I'm taking 2 weeks off. I am traveling to MI to see family and my mom does not know of my new diagnosis. Last time I was there, she said "what's wrong with your hands?" I blamed it on gardening and AZ sun. A few days later, they were somewhat better, for which she commented "your hands are looking better, I thought maybe you had some kind of disease or something!"
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Well, I spoke too soon. Had my doc appointment yesterday to go over my scans. My onc did note that my liver scan showed no progression, but he is concerned about my CEA continuing to go up about 20pts every three weeks, for the last few cycles. He feels it portends that the cells are growing and developing resistance. My CEA has always been a good indicator for me, dropping when things stay stable for awhile, and rising steadily when things progress. I was kind of surprised and disappointed, but he wants me to stop Xeloda and try Tamoxifen while the tumors are still small, which I have never been on. Faslodex did keep my bone mets stable for over three years, so he would like to try another hormonal with the hope of a longer run than chemo could give.
I don't mind trying the Tamoxifen, but I wasn't ready to hear it's time to switch after only eight months. He said I could wait another cycle if I wanted and monitor the markers closely, but after talking about it, I agreed to another blood test for CEA right then, and it if climbed up again from three weeks ago, I'd give Tamox a try.
So now I'm waiting for the test results. I'm on my week off of Xeloda, and suffering a bit with HFS, so a rest from these side effects does have some appeal, at the moment. But it sure catches one off guard when the doc suggests a switch you're not expecting. What a roller coaster this is. But I trust this man with my life, and he's been doing this BC cancer thing for 30 years and I am grateful that he is monitoring me so closely. If my markers level off this week, he said he'd feel ok about waiting, but, he's probably right. My markers probably are going to continue rise at this point, and hitting the cancer from another angle might be the best strategy.
His concern about waiting is that if the tumors take off and grow a lot while on Xeloda, I wouldn't be able to try Tamoxifen at that point because I'd need another chemo to knock it back. I'm crossing my fingers that my CEA decides to drop this week. Not a great bet.
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Sandi, sorry for the roller coaster ride. How old are you? And why not do Tamox. and X?
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Sandi,
Disappointing, but if those markers are generally accurate, I do see the logic. So much of this roller coaster is art, not science. Waiting with bated breath to see what this month's CEA numbers are like.
*susan*
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Hi, Just thought I would drop in. I'm not sure if I have posted since starting Xeloda in January. I've been taking an MBC break or more accurately, ignoring my MBC.
I've been catching up with the last several pages of this thread and I'm so happy for all who are doing well on Xeloda or another regimen. Many hugs to all of you. Sandi and others who have heard disappointing news, my thoughts are with you. I've been there many times this past year.
February 26th marked my one year since official MBC diagnosis. Well, I made it a year! I had been plagued by a chronic, dry, tickly cough almost since the beginning. Since starting Xeloda, my cough has largely improved. It's still there, especially at times, but not like it was. (I have lung mets)
The best news of all--both the CA-125 and the other one (can't remember what its called) have dropped from 233 to 175 and 123 to 96, respectively. This is the first time I have ever had a drop in my markers--other than a slight drop of 10 points when I first started Taxol last May. Otherwise, I went on to have 3 different tx's fail in the last year. Xeloda/Tykerb is #4 and seems to be working. I've had only mild HFS which was the worst after round #2. I'm finishing round #3 tomorrow. We'll see how it goes.
I was thrilled with the drop though. I have never experienced this and was quickly losing hope.
I hope everyone is well and hey, spring is just around the corner. Even here in north Michigan I have bulbs coming up.
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Sandilee. I know you're dusappointed. But at least you got 8 mos on X without any progression. I think your Dr is being right on top of things which is great!!!! He's being smart about attacking this before you have progression.
Like Macy I've had my first drop in markers( both) and my first regression on Madame X. I only had 7 mos on Ibrance/Femara and 2 mos on a trial with progression while on both. I was so discouraged until now.
May everyone find NED!!!!
Babs
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Thanks for the good wishes, everyone. Goldie, I asked that very question, and my onc said that Tamox and Xeloda don't work well together.I am 65.
I think I'll know my number tomorrow. It will be posted on my doc's portal, but the CEA has to be sent out to be read, where the regular CBC and chemistry are done in house. Trying not to bite my very sore fingers.
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Sandi, Well, you said you trusted your onc. So I guess you will go with his suggestion. I just always thought that Tamox was for women who haven't gone into menopause. Maybe ask if there is an AI you can take with X?
And NO, don't bite your sore fingers!
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Hi ladies! Just poking into this thread and starting to see how the HFS can be terrible. I want to put together a little goodie basket for my mom as she starts Xeloda next week with the more known to work lotions/creams to help treat HFS. She already has psorasis and very dry hands/feet even before starting this treatment and sadly, she may not be one of the lucky ones where HFS doesn't affect them? Feel free to PM me your top products.
I'm thinknig very cozy spa slippers / gloves, body wash or soaps for the shower, and of course lotions/creams/etc. to help with it. Any suggestions would be great.
Thanks!
- Jaimie
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Daughter, it all depends which SE's she gets. H/F syndrome I think is the most common, and I don't know of anyone that has NOT gotten. Vicks Vapor rub is the new one I'm trying, and works the best. Especially if you put it on and then wear gloves and socks. Nothing gets rid of it, except stopping treatment. It should let up on her days off. Most likely she won't get it right away, altho some have. Some have nausea, I don't. I got a horrible rash, and take Benadryl every night for that. Mouth sores are possible, I get them during my last days, and just swish with salt water and baking soda. Fatigue is also a SE. My nails are now lifting, but I have been on X for a year now.
Good luck to your mom. How old is she?
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Thanks Goldie,
She is 57. I posted in the Bone Mets thread a bit and a little bit here already but she was diagnosed Stage 1 (ER/PR+ HER-) at 54. Now is 57 and diagnosed with bone mets in November and as of February she has lesions in her liver. She is BRCA2+. My aunt followed a similar path except was diagnosed at 34 and passed away at 41. I'm 28 so looking into genetic testing this year.
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Your mom is the same age as me. So sweet of you to be so concerned and wanting to help. I'm terribly sorry to hear about your aunt, so young. Please do keep an eye on yourself, and good luck with your genetic testing. Many women here, that had liver lesions have had good luck with Madame X. Praying that your mom does too.
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DaughterLove15,
According to the research I gathered about HFS, all of the creams and lotions discussed here are palliatives, except for uridine-based cream which has undergone clinical trials in Europe. So I would not spend money on expensive lotions, but just buy a common emollient, and then prepare on my own uridine cream.
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Has anyone tried Excipial hand cream for HFS? It is an over-the-counter cream made by Gallderma, which makes many prescription skin products. It seems surprisingly light, mild, no weird smells and is easy to use. It absorbs immediately into hands. I don't know how it works but it does help. I use both the day cream and the night cream on my hands. I had extreme HFS on my hands when I did dose dense Taxotere nine years ago. Bright red, raw, painful, cracked palms that looked like I fell in a fire and a huge, calloused painful blister than would pop to reveal even more raw skin between my thumb and forefinger. After I finished Taxotere, I have continued to have "HFS-type" problems on my hands, including dry, raw, painful calloused thickened area between thumb and forefinger and in other areas on hands, which only seem to improve when I am on vacation from work (must be aggravated by stress!). I have been to the dermatologist who wasn't able to diagnose me and the prescription he gave me didn't work. Anyway, I found Excipial in CVS a few months ago and it is the only cream I have found in the last 9 years that helps. After less than one week on Xeloda, I am already seeing an increase in hand issues. I am hoping that the Excipial will continue to work. I might switch to the night cream for daytime use, as it is light enough. And I already started applying the cream multiple times during the day (up until now, once in the morning and evening was enough).
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I just want to report that I don't have HFS, which probably is the result of a low dosage of X (2000 mg/day) and/or I've been on it only since October, 2015.
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I'm using the cheap cotton gloves I bought for plane travel back when I was on Femara/Ibrance to sleep in at night after slathering on my Udder Cream with urea. I does make a difference, especially for the first few hours in the morning. My hands seem both smoother and less sensitive.
My CEA numbers are in, and they only went up 3 pts. this cycle, rather than by 20pts, as it had been. That's leveling off, to me. It will be interesting to see if my onc considers that stable enough to continue Xeloda, or if he still wants to switch me to Tamoxifen.
Goldie, Tamox is fine for post -menopause women. It was used for both before the AIs were created. The AIs were shown to work better than Tamox for post menopause, and they are only for post-menopause, so usually they are the ones they go to for older women. I've already been on a couple of AIs-- Aromasin, my first drug, and Femara/Ibrance, which failed, as well as Faslodex which worked for 3 years,, but have never been on Tamoxifen. My onc thinks, because it works differently (doesn't eliminate estrogen- just blocks it from reaching the cancer) that it is worth a try. He says it's an old drug, but is a good one and can be long running, if it works for me. Crossing (not biting) my fingers. :-) It also won't degrade my bones like an AI,, which is important since I have numerous bone mets as well as my tiny liver tumors.
My feet are on fire,today, so the idea of switching is a bit more appealing right now.
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Sandilee that really isn't much of s jump thank god!!! Have you tried the vapor rub. I tried so many of the other suggestions and this has been the best for me. I also bought the sketchers which also helps!
Curious to hear what your mo decides
Babs
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