All about Xeloda
Comments
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WOOOOO HOOOOO, KESSALA!!!!!!!!!!!!!!!!!!!!!!!
I squealed on the 14/7 and 7/7 does appear better, but not perfect. About day 5, hands and feet start to hurt/burn, so I grit my teeth through day 7. On day 2 of my off week, they improve a lot.
It's funny how different oncs have different philosophies, and I believe that must mean it's more philosophy than science at a certain point. Whatever the case, it's working for you!!
Seeing good scans for all of us, if not now, in the future!
xoxox
Calico0 -
Milehighgirl (Sue), I'm sorry to hear your results with Xeloda weren't great. How long had you taken Xeloda before it failed you?
Kessala
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Kessala, I was only 4-months in. It did well on the breast tumors but I had progression near one of the lungs and new growth in the abdominal lymph nodes so doc. didn't want to risk the latter getting worse. I'll be starting a trial at the end of December so keeping my fingers crossed.
Many people have gone a good long time on the Xeloda so I'm likely the exception here. You'll do well!
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Milehighgirl, thank you for the heads up on the 7 day on and 7 day off trials. I am so very sorry that X isn't working and I really do hope that the trial will give you good results.
Cheers
Mandy0 -
Girls, I have more good news to share. My tumor markers went down again. To recap - the CA 27-29 was at 38 a 13 mos. ago when I was dx'd stage IV (lungs and bones). Started X Nov. 2012. Each month, my markers would drop a few points. After I had surgery to remove my ovaries, my marker went from about 24 to 11.6. This last check up - the marker was at 11.2. I was so scared that the other shoe would drop, and that the # would go up. For now, breathing a sigh of relief, and hoping next CT scan on 12/10 also brings good news. Fingers crossed.0 -
Liz, great news!
Tumor marker testing doesn't work for me. The tests always show me right in the middle of normal when in reality I've got extensive bone mets and multiple liver mets. Doctor tried tumor marker testing on me a couple times. They were a dud.
So now it's scans for me or just my impression as to how I'm feeling.
Great to hear Xeloda's working for you!
Kessala
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Lulubee, sorry just logged in after a brief break from the boards.. about the abdominal pain, it's mostly caused by gas, I see you already got great advice of meds for that..I don't take anything cos I feel no nausia yet.. walking at slow pace about 1 km per day helps wonders.. I regret not having started earlier, now it's too cold outside for going out every day..
Sue, I hope the new therapy deals with what X couldn't for you..
Lizlemon & everyone else with good news, I am so glad you are doing well..
About Taxotere combo with X, I couldn't tolerate both so had 8 cycles of Tax before moving onto some AIs then X. I posted a detailed diet suggesting thread which worked wonders while on Tax, maybe want to have a look at that..
Fatigue is the worst SE, so I take things slow & rest as much as I can.. best meds so far. Completing 13th cycle today..
hugs,
Ebru0 -
kessala and lizlemon- wonderful news!! May it continue for as long as possible for you and everyone else on X. Stagefree - good to see your "voice" again. The fatigue is so damn tiring!!!
I also find trying to walk is helpful (and makes my dog very happy), but man, it's starting to get cold...0 -
Greetings to all of the X ladies--
I haven't been on xeloda for very long. I'm on the 14/7 schedule, and tomorrow will be day 14 of my 2nd cycle. I haven't really had any SE's (yet... knock on wood!). I always take it immediately after I eat, and drink a glass of water to chase it. I'm feeling a little more tired than normal this week, but I had a crazy busy Thanksgiving, so think I may be recovering from all of that fun. I have my monthly appt. with the MO and zometa infusion tomorrow, and hope I might see a drop in my tumor markers. Unless it's too soon to see results?
After being on faslodex and aromasin, xeloda has been much easier on the weird aches and pains that I was having. Most of those have disappeared, which is a relief. Those days with little or no pain remind me of the good old days, before stage iv was in the picture!
It is so good to hear that so many of you are getting good results with this treatment. Fingers crossed that it works for me!
Ebru, good to see you back in the neighborhood. Have you posted anything about diet and xeloda? I'll try anything to keep GI SE's away...
Time to take my pup for a quick walk before the evening fatigue sets in.
Hugs to all of you!0 -
Hi All
First time post here, and I learned so much from the previous posts. I am 37 years old, diagnosed with stage IV inflammatory breast cancer in March with mets to liver and bone at that time. Did chemo, surgery, and radiation, and scans in Sept showed progression of mets to brain and lung. Xeloda was next on the list and I am just finishing cycle 1 at 1500 mg twice a day, 14 on, 7 off. I did have side effects from day 1, red fingertips and heels, burning sensation in the tips of finger, diarrhea and fatigue. However, toward the end of the cycle, the hand/feet got better and just left with fatigue and intermittent diarrhea. The side effects can be there one day and gone the next! Was very aggressive with lotion of hands several times a day and wearing gloves for dishes/cooking. Thanks for everyone sharing their experience so we can all learn together!0 -
Hollander and MDtoMom, hello and nice to hear from you. I do hope that X works for you both and that the SE's are controllable.
MDtoMom, I am so very sorry that you have IBC as well with triple negative, you certainly do have a challenge ahead of you, however saying that, technology is going ahead in leaps and bounds. I was diagnosed almost 7 years ago with IBC and I have seen the change since then, so there are many more options nowadays and I hope that Xeloda works wonders for you. I also had mets to the brain, liver, lung and bones just over a year ago and X is really kicking butt with all my mets shrinking and I really hope that you will have the same news for us soon.
Allow at least 2 cycles of X before you may see results, so don't despair if your tumour markers rise initially as mine did after the first cycle, but then they started to go down after the second cycle.
Cheers
Mandy0 -
Hi mandymoo
Thanks for the encouragement, I find it hard to find other IBC's to discuss (the IBC thread has too many people worried about diagnosis, unless you have some tips?) and at this point, the IBC really isn't my problem anymore since surgery and hopefully radiation did a number on the skin mets I had. I have high hopes for Xeloda but I know if it doesn't work, will be ready to move on to the next drug. This thread was so educational to follow so I hope I am around for awhile! It took a week reading all 100+ pages!0 -
Hi, Mandy, did you have the CEA tumor marker test run, and did it go up after a few weeks on X? My CA 27.29 made a plunge downward, but CEA went up 50%. I'm really stumped. Will get first post-X scan the end of this month.
xoxox
Calico0 -
Hi CalicoCat, I am not sure what the CEA tumor marker test run is. The only tumour marker tests I get are the CA15.3. I would love to learn more about the CEA tumor marker test and will look it up on the net, but any information would be greatly appreciated.
MDtoMom, I found the IBC support group whilst I was having treatment initially as they are mainly Stage3B or 3C and I gained a lot of information from them during treatment. After that, I went on with my life and checked the support group every now and again to help the newbies but after a year, I just got to busy living lol. When I was diagnosed stage 4, I did try to get back to that website and there is a "lounge" or something like that for stage 4, but I didn't find it user friendly. I have found this website invaluable and it is very user friendly. There are so many different threads and you will find that some IBCers are amongst them. I agree now that we are stage 4, that IBC is not really much of an issue anymore and we are more connected being stage 4. You will meet some lovely people on here who will be there to provide support when needed as well as invaluable information.
Cheers
Mandy0 -
Well, after 10 months on Xeloda my time on this 'easy' chemo may be coming to an end!
Had my onc appointment today & my tumour markers have gone up.......had more bloods today but chose to wait til after Xmas for my scans! I want to enjoy Xmas with my beautiful family & then fight the next part of this battle!!
So scans in the new year & we will see......the thought of going back in IV chemo is not too inspiring - not to mention losing my hair.....again!!!
(((Hugs))) to all.
Karen xxx0 -
Karen, Oh Dang!!! I am so sorry that X is no longer working. Hang in there and have a great Christmas. Here's hoping that the next treatment will kick cancer's butt.!!!
Cheers
mandy xxx0 -
Hi, Mandy, I don't know why my oncologist chooses to run the two tumor markers that he does (CA 27.29 and CEA) versus CA 15.3. I know the CEA is used for a number of different cancers, two of which are colon and lung cancer. Must be another one of those "philosophy" things again. I guess I should ask him sometime.
The CA 27.29 and CEA so far have been pretty good, but not perfect, indicators for me. I've read they can go up sometimes when the chemo treatment is being effective which makes things even more confusing, and they start to take on all the significance of reading tea leaves to me. In other words, who the hell knows? If I were flying an airplane, and sometimes, the altimeter could read one thing or another, and not really indicate my elevation, would it really be useful information, or just confusing? I guess that's where the scans come in to "break the tie".
xoxox
Calico0 -
Ladies,
I am somewhat confused on how and what is a great PET Scan. I had mine last week and the doctor said oh I'm so pleased with your scan, you have no new tumors, however the report shows that I still have cancer in my liver, kidneys, ribs, lungs (part of my lung collapsed from PE), in the medullary canal in my femur, in hip and disc has collapsed in my neck, still have cancer lesions in my spine and only in the L3 has it increased in size but all the others are the same as they were a year ago. So does that mean success?
I have very little side effects since starting back up on Xeloda. I keep cream next to the sink so every time I wash my hands I cream them afterwards. I soak my feet every morning and then coat with cream and put on socks, then again in the evening. Before I take my 2000mgs of Xeloda twice a day I take a pill for nausea and it's working no nausea. Again I do feel it cuts my appetite but that's all. I'm hoping that staying on such will maybe keep me as I am, which the doctors seem so pleased with. They told me I'll never be cancer free but if I'm stable I should be jumping for joy. I'm not I just see cancer throughout my organs and bones. But I'm willing to keep up with these meds in hope that one day they will start to diminish some? I'm starting to realize and grasp that this means three weeks to see doctors for the rest of my life however long I live and that I will always be on one or another cancer medication. So I accept this, doesn't mean I like it but feel I'll just walk the walk and maybe someday I'll be NED.0 -
Hollander, the only strict advice of diet is no milk ever & no dairy products with other proteins. I had already quit beef as MO said I need young meat (??) so lamb & more lamb..also more fish on diet. Also no chicken but turkey meat. as the chicks get drugged way too much..
The rest is the same with the old diet.
Hope you feel better.. The more exercise the better..and daily afternoon naps
hugs,
Ebru0 -
M360, for people like us who have Stage IV breast cancer a scan showing either stable disease (nothing is getting worse although nothing is getting better) or regression of the cancer is a good scan! It appears your cancer is stable according to your recent PET scan. This is good news!
Hoping for the ellusive NED (no evidence of disease) is something that quite rarely happens. Don't pin your hopes on achieving a NED status. NED doesn't mean the patient is cured. They still have cancer. It's just too small to show on scans. And eventually the cancer rears it's head again and they're no longer NED.
I've been taking Xeloda for four cycles now and just had a good PET scan result. I haven't yet spoken to my oncologist to find out the details. I received a phone call a couple hours after my scan telling me I've had a great response to the Xeloda. I was keeping my fingers crossed for at least a stable result. It seems I've had some regression judging by the nurse's comment.
I've been dealing with Stage IV since 2005 and have learned that anything other than PROgression is good news for us. I'm happy for you!
Kessala
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Well, somehow my post just disappeared so this is a do over
Karen, you've given X a really good run with few SE's. It's not over till it's over but I'm with you on having to psych up for the IV chemo. My first infusion round in this trial is 1/8 and I'm really having a hard time wrapping my head around it. But, I'm trying to focus on the fact that we have so many more options than we did even a few years ago. I'm almost five years out from first dx so I'm grateful. Just need to vent occasionally, lol.
MdtoMom, I'm IBC stage 4. I've never done the IBC thread on this site but found more helpful info and support by going directly to the treatment threads. You have lots of company and I for one would be glad to answer any questions you have if I can help. This is a great thread you've found and many friends to help you along the way.
Ebru welcome back. I love those afternoon naps when I can snag one!
Blessings all. Sue
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Hey Karen, funny how you had a feeling that the X was not working any more, I'm sorry to hear it though, and hope your next chemo will be effective for a long time. Yes, the thought of IV chemo and no hair is not appealing, but I think you'll look gorgeous anyway! Hope you have a sparkling Christmas with your family!
Great news for those who had good (or even "good") scans too!!
Yes, M360, I guess that is our reality - doctor's appointments, blood tests, scans, chemo of one sort or another (with it's se), for the rest of our lives. Bleak when you look at it that way, but all the treatment has allowed me to have continued good qol this year, and am hoping that will last as long as possible. It's a tough realisation to come to terms with. I also got confused, last ct scan showed progression, but not as much as thought, so that's "good" news. Damn, all the nodules grew and there are a bunch of new ones (again) in my lungs, in my head that is NOT good news. But I guess I get it sort of, the nodules are still all contained in my lungs, not in the lining, more good news. And apart from some sob no real symptoms, more good news. It's kinda wierd.... I was worried no one was taking it seriously anymore.
My next scan will be mid January, then we'll see if X is kicking butt, but first there is Christmas with the family, I'm so looking forward to that!0 -
I have had a few nausea attacks that came out of nowhere - while I was on X and on my week off too. It's a sudden, intense nausea that clenches your tummy etc, sometimes I throw up, but if I don't it goes away after a minute or two. I've had this happen a few times before I started X. Anyone experience that?
I'm on my week off of the first cycle, so far so good, no problems except for the gut ache, but I got the equivalent of GasX and that helped. And some regular nausea, otherwise a bit of fatigue and that's it.0 -
Carolben.....yes, it does all sound very confusing! I find so much of this cancer business confusing but pretty much go with what the medicos have to say. I do hope you get a good run from X. My first scan after starting X showed progression, second one showed 'liver mets barely visible' so I think it takes a few cycles to kick in. The very best of luck being sent your way.
Hair....well each time I get it to what I think is a nice place i.e. Doesn't look like post chemo hair, I'm faced with losing it again..... I'm not positive at this point that I'll be going off X but given the tumour markers rising & the way I've been feeling I think the scans will show progression.....:(
Milehighgirl....we are lucky to have options...unfortunately like Carolben, I'm triple neg & the options are way more limited.... But there is always hope!!
Good luck to all the newbies & I hope everyone gets as long as possible on X.
(((Hugs)))
Karen xxx0 -
I have a friend who is triple negative and BRCA positive and she just started a clinical trial in San Antonio for parp inhibitors. I hope and pray she gets good results and that it helps everyone.
xoxox
Calico0 -
Karen, just asked you why you were anxious on the other thread, and you pretty much answered my question here, thanks. I've gotten to know my body on a very much more intimate level. That's a polite way of saying I've become slightly obsessed with it and with every different feeling, ache and pain!! I still check my breast every day in the shower, and under my arms and the mastectomy scar!! But at the same time, we know when something just feels not right. I hope like mad that you don't have progression - when will you get your scan results? Yes, even tho we are 3-, there are still options for us, just not as many, as you say. You've had all the really bad chemos already, it seems to me, your onc won't want to make you sick from chemo, I don't think. Stage iv is more about qol for my onc.
Oh the hair - I hope to hang on to it on X, but it is strange, I have no control over my hair at all - will update my avatar, it's short and has more body, but unlike last time, it's not curly (sigh), it does its own thing, curls a bit, stands up, and has turned more white than ever! I had some great hats and beanies that I wore in the winter when bald, but it will always be sad to loose my hair, I think.0 -
Carolben......my hair grew on X!! First time it grew back straight & very thin, this time it's curly & thick, go figure, I've grown more hair while on Xeloda than last time when I had finished chemo after my primary treatment. I keep it quite short so I can control the curls,. You don't appreciate how good it is to have hair until you've had none!
Scans will be when I decide to book them in.....I get the results the same day. I'm tossing up between going & finding out & waiting till after Xmas in case it's bad news!! It's always on my mind anyway & part of me wants to know, part of me doesn't & the other part just wants it f##k off!!!
Yes, my onc is also about QOL but I think he was talking about Epirubicin next which I think is quite harsh.....could be wrong. I've told him he has to keep me alive to meet my grandson in March......my biggest wish at this point......
So hopefully your hair will keep growing while on X......fingers crossed for you & everything crossed that you get a good result from it.
(((Hugs)))
Karen xxxx0 -
Carolben - my hair was thinning on carbo/gemzar, but on X has come back as thick as ever!
I'm also triple negative. On my third round of X - tumor markers were down after round 2. Will find out next Monday what they're up to, then scans sometime later this month or in January. I0 -
leaving you guys but wishing you much success and hope with this wonderful chemo. I have a new primary I am fighting.0 -
I am on the 7/7 schedule, and my onc told me today that anytime I want to, I can take two weeks off between doses and don't even have to ask him. Now, that seemed weird! He's happy with my tumor markers' descent, but I didn't think he'd give me this liberty.
In his opinion, Udderly Smooth Udder Cream is the best to use for H & F syndrome, and he said to put it on my hands, put latex gloves on, and sleep like that.
xoxoxo
Calico
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