All about Xeloda
Comments
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Thanks for all the high fives!!!! And for being there for me!
Babs
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made it to another birthday today. I enjoy counting up now. Every year is so greatly valued. One thing cancer does is put things in perspective
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happy birthday left foot!
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Gio, I'm sorry you wife has to deal with all of that. I pray it's working for her. And I hope she is living with a QOL.
Another birthday is def. reason for celebration. Happy Birthday, a day late.
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Happy Birthday Leftfoot-and hopefully many more!
Babs
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Happy Birthday Leftfootforward! Wishing you many many more to come! Enjoy!
Kessala: Thanks for the feedback on the peeling skin! Yes, so very tempting, but I will try to just clip away the skin that's already dangling. My hands and feet are peeling all over the place, but thankful it is not painful. I start my new cycle this Friday. I appreciate your feedback!
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Hello. I am kind of new here; I have been reading for a few weeks, and need to belong. This seems like such a great group. My breast cancer came back last year, and in one year I have been on Afinitor, Taxol, and Faslodex. Only to find after 8 months that my cancer mutated and lost the estrogen receptor, so the Faslodex wasn't working. It was just in lymph nodes everywhere, but they have been getting bigger and more numerous in my body. In December, we found a mass behind my eye, and now a lump in my thigh.
So I have just started Xeloda. I am on my 3rd round. I have been reading about the side effects, and thankfully, reading here, it does seem to work for some people. I have had nausea, spending long time in the bathroom. I have NOT started the hand/foot syndrome yet, but from my Dr. , and everyone here, it seems like it is only a matter of time before I will get it. I have a question - I have been putting Gold Bond hand cream (it has urea) on my hands and feet. Is it best to moisturize to head it off, or if I am not having issues to wait and see? It seems very painful and hard to deal with. I am currently on 1500 mg twice a day. I am trying to be positive. I think the spreading of the cancer that I have now started before I started on the xeloda on Jan 3. I wonder how long it takes to start to work.
Thank you in advance for any advice.
Gay
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Hi everyone,
I am new to this thread. But not new to BCO as I have been posting in the Bone Mets section on behalf of my mom. As a quick recap - she was diagnosed with Stage 4 to her hips, pelvic, spinal bones in late November and did radiation, is on Falsodex. and Zometa. From Christmas until now, it seems like she is almost pain free, her limp is gone, and she feels like her old self. she was even able to get cleared to go back to work on a very limited schedule (12 hours a week as a nurse).
Yesterday, was her first PET scan since diagnosis and since her initial rounds of treatments. Fortunately, there has been no spread in her bones although no shrinkage in tumors at all. Tumor markers have elevated slightly. My mom remains optimistic that she feels a lot better than she did a few months ago but a bit disappointed in no shrinkage. With that said, there is bad news and that is that it may have spread to her liver as there are 3 spots that were not there 3 months ago. I know the liver is a bit scarier than just in the bones and she wanted for me to ask you all if anyone has tried Xeloda which is the form of chemo they will start her with. I am going to point her to this board as there seems to be a lot of useful stuff here.
She is uncertain and nervous as to why they want to take her off Falsodex as it is targeting the hormone receptors of her cancer (she is ER/+PR+/HER-) to go on Xeloda. She is afraid it will make her worse and wants to go for a second opinion. Although she isn't joining the boards yet - she asked me to pass along any advice you may have for her and just how bad is it if it spreads to the liver so soon.
Thanks!
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Ganderson,
You can save yourself the cost of urea cream, and just buy any emollient that is gentle on your feet. The cream is not something that counteract capecitabine, but an aid to decrease friction as much as possible.
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Gay. I would start moisturizing now. It can't hurt!
Daughter lov. I will pm you later cause rushing to an appt now
Babs
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I agree- I started working on my hands and feet with the first dose. It only takes a few minutes a day and it can't hurt. The oncology nurses where I go are all big proponents of urea, and I figure they must know something. So I go back and forth between regular lotions and urea creams. I like Eucerin Intensive Repair Extra Enriched Foot Cream for daytime because it's not greasy or slippery, and absorbs really fast
Stay hydrated. Wear cushy flats whenever you can (I like Skechers GoWalks). I don't go barefoot anymore, even in the house, and I try to wear protective gloves when I work. I figure the less bacteria and chemicals I expose my skin to, the better.
I wrote a long post on this several pages back. I will try to find it and post where it is for you soon.
Edited to add: This variety of Eucerin foot cream does contain urea.
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Babs6287 So delighted to hear about your great scan! Just to let you all know that I started Madame X on 11 February and tomorrow morning, I take my last tablet of my first cycle. Been creaming my hands and feet each night but no sign of any hand foot syndrome yet - hope it stays that way. When did the Hand Foot Syndrome start for all of you? Don't like having a permanently dicky tummy and having the trots! Missing swimming but really fatigued a lot of the time. Hope I get good scan result in a couple of months too.
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Okay, found it. My post from December about taking care of hands and feet is on page 167, partway down.
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Happy (belated birthday), LFF! Happy for your great scans, Babs! And, Susan, congrats on the grandbaby! Love all this great news!
And welcome to our newbies, hope Xeloda works wonders for you/your mom!
Giovanni, I'm joining others in hoping the new regime is just the thing to battle your wife's cancer.
I have to respectfully disagree about urea cream just being an emollient. It's supposed to help by breaking down excess keratin that forms in response to the Xeloda which helps with the calluses and helps the emollients get through to the skin to moisturize. I've found it very helpful and I was using high quality moisturizers including Eucerin with some urea but less than 20% and Aquaphor. I could see the difference very quickly. And recent studies seem to point to it being beneficial for Xeloda caused HFS(http://www.ascopost.com/News/30676). Not everything works for everyone, of course, but I would hate for someone to skip something potentially helpful based on incomplete info, especially since the cost of 20% urea cream is comparable to many other moisturizers on the market!
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RosesToses,
I quote from the journal article I mentioned more than one:
Although a control group study found that the use of urea and lactic acid-based creams (as well as keratolytics) are ineffective in preventing HFS symptoms, specialists recommend their use in cases where there is keratosis plaque formation (grade 3), since these agents facilitate the penetration of other moisturizers and the removal of this necrotic layer.
In other words, the problems caused by HFS are not the callus, but the fact that cells in the sole of one's foot sole or one's hand palm experience accelerated death. The emollient serves to decrease the damage by diminishing friction on the skin. If one helps with desquamation that doesn't really decrease the damage.
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Giovani, I think we're talking apples and oranges here, the difference between preventing the problem and finding ways to deal with it and make the impact less severe.
I think for most of us preventing the problem would be great but ways to make the side effects less severe and go on living our lives also have value. And especially if those ways are simple, inexpensive, and readily available.
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Hi, and wow! Thanks for all the quick responses, gciriani, babs, lulubee, and Rosestoeses.... I will look at page 167 for the tips of the hand/foot care. I actually have several tubes of "Gold Bond hand Ultimate Healing Hand cream" I had been using and liked, and when I look at it, is has urea in it. I will just keep using it on my hands, and I have already started a morning/night foot regimen concentrating on the heel. I wear soft socks all the time. Never barefoot. I had an MRI today for the mass in my upper thigh to see if it is cancerous lymph nodes or a "mass". We will see how we will treat it depending on what it is. It is making my left leg swollen. As I am on the third round of Xeloda, I am just hoping it will shrink it before we have to do anything else. (radiation or surgery). Thank you again for giving me some good advice.
Gay
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Back from a long day at Dana Farber. The big news is that in the last 21 days, my tumor markers have dropped another 15%. That is another big drop.... since the previous 21 day period showed a 20% drop. Guess I will tolerate these side effects as long as MadameX is taking me to the party. We have decided to delay the next set of scans until June. I will not return to see my oncologist for two more cycles. No hospitals until April! We discussed the increase in HFS and I pointed out that it has been showing up earlier in the cycle. I asked if I had permission to delay the next cycle start if I felt that my feet and hands needed a little more time to heal, and she agreed. Her preference is not to delay too much but a few days is fine, but she also wants to control toxicity so I can stay on a drug that seems to be working. This is the art part, isn't it?
Had my first Xgeva injection and the headache began almost immediately. Taking some Advil, and then I will get a little work done in case I have those "flu-like symptoms" tomorrow.
*susan*
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Susan that's so wonderful!!! Sooooo happy for you!!! And a break from a hospital is like having a vacation!!!!
Enjoy and hopefully you'll get the HFS under control. I know this is my week off and I hardly feel a difference. It's not easy but we'll deal since X is working!
Babs
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Congratulations, Susan, so happy for your wonderful news!
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Congratulations to Babs for your scans and susan for your tumor markers.
Babs, your good scans in spite of higher CEA markers give me some hope. I just checked my CEA from my labs this week and it's rising a little bit. I'm somewhat concerned. I have MRI and CT scheduled in a couple of weeks, so that will be pretty telling, I imagine. I really hope the drug keeps working for me. My CEA never really went down on this drug- just stabilized, but my scans after the first three montjs did show improvement. Hoping for more.
Welcome, new sisters. It's so helpful to know we have each other to share info with on this site. It's a great place to find hope and compassion.
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My body, the GI part, seems to be back to almost normal, my hands are better and and those pesky feet have improved so I started cycle 4 this morning, one day late. Someone was very 'helpful' last week and threw out my rye starter [a criminal offense] so I had to start a new one. This morning's breakfast of a rye toast with cheese was less than satisfactory I am afraid. I do dislike bread failures, especially when it is the heart of my chemo food regimen.
Hope everyone is doing well and tolerating their Xeloda.
*susan*
ps. On the subject of CEA, this test has not been all that helpful for me. The 27.29 one on the other hand, has been eerily accurate.
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My Cea 125 had never been reliable for me but my CA 15-3 has always been right on. The CA 15-3 decreased last month and hopefully will again tomorrow when they retake it
Babs
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just got my markers back from Tuesday. They all jumped. Two are still in normal range but are so far from my normal I'm scared. The last one is high but just out of normal but is within my normal so Not so worried about that. So who knows. I was just scanned in January was clean. I hate all this. It can drive someone crazy.
So wit 3 week and retest. If still wanly then scan immidiately instead of waiting till late April.
You all understand. You go all sorts of dark laces and then walk Orval back.
Hoping xeloda is still irking for me.
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LFF, funny typo! I'd say Xeloda is definitely irking for you right now, so sorry it is! Hopefully it will just turn out to be something quirky and completely unrelated to cancer rising. Do your markers tend to run really low?
Babs good luck with the appointment and markers today! And Susan, sorry about the starter, but with Xeloda doing a great job for you, here's to getting the new one through many generations and back to being just right again. Glad the side effects are responding well to the extra day, too!
My onc only does CA 27.29 at my appointments, but it's always been exactly in line with my scans so I've come to put a lot of faith in it. Which is also why my current jumps down have me feeling good about Xeloda.
I have my first scans since starting Xeloda in April, I'm really hoping things are continuing in the right direction by then. I'm on the last day of cycle 7 of Xeloda, some hand/foot side effects but nothing I can't live with so I'm really hoping this drug works for a very long time. In the meantime, I've started seeds for my garden and more to get in flats this weekend--looks like I'll be ok for some gardening this summer, something I wasn't at all sure about 2 years ago when I was first stage iv.
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LF- are your TM's reliable for you? We certainly live a roller coaster life of emotions with this damn disease!
Roses-thanks -should get my TM's later today. I'm not too concerned because scan of 2/22 showed liver and thoracic mets decreased in size.
Babs
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I think Xeloda is irking all of us! Heck, I am irked by having cancer at all!
LFF, hope that your increase in TMs is due to an infection or something random.
*susan*
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Wow, lots of posts to catch up here. I have been away. Most questions have already been replied to, so I won't add my 2 cents worth. Other than the fact that H/F syndrome has been accumulative for me. I have been on X for a year now. At the end of my ON cycle, they are really bad and hurt just to the touch. The skin looks and feels like an alligator!
Babs, good news on your scans! Happy for you. I feel my best about half way through my week off and half way through the first week on. Praying for good markers today!
Gay, I'm sorry about the swollen leg. I hope it's nothing serious.
Susan, Yay for the drop in markers. But I'm sorry you have issues with Xgeva. That one does not bother me in any way. I find it so odd how things affect us differently.
Sandilee, if it's any consolation, my onc says he really doesn't look at the CEA, as it's not that important in BC. In other cancers yes, but not so much BC.
LFF, what kind of numbers are you getting. You mention being within normal. Mine have been in the 70's. normal being like in the 30's. My onc says he want to treat ME, not my TM's or my scans. Because I feel so good. No pain at all, just all the stupid SE's from X. He said if they jumped to 80 would he be concerned, no. If they jumped to 100, yes. Please try not to worry, I know it's hard. We can have our glass half full, or half empty, the outcome will always be the same.
Roses, I too have my seeds started. Well, did that back in January! Will plan on doing my canning during my week off when my hands are at their best, and of course will be wearing gloves.
I have been drinking a tablespoon of Braggs organic acv with the "Mother" (whatever the heck that is) every day. And I'm also going to try hemp oil. Ran it by my onc, and he is ok with it, just as long as I continue my traditional treatment. I told him absolutely!
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Checkup news-- still NED after 28 months on Xeloda!
My onc told me, "You have a hall pass for a few weeks, so go live your life and think about cancer as little as humanly possible until your next checkup." I smirked a little-- I mean, the reality is we need to mindfully support our bodies every waking hour of every day on this stuff, now don't we? But still, I set an intention to take the spirit of what she said and run with it.
My hope and my goal, always, is to be a cancer patient on the days I have to see doctors and nurses, and on all other days, to use whatever energy I have on that day to cultivate liveliness into my identity-- to wake up and say, "Today, I am still an alive being living a lively life."
That awareness is always followed by gratitude, and gratitude always opens the heart and heals. I'll take all of that I can get.
Blessings to all! Winter is fading and the flowers are about to wake up and startle us all over again. I can't wait!
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yay Lulubee.
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