All about Xeloda
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Dianarose, That does not sound good! Quality is more important to me than quantity! I feel like I haven't gotten much quality since January. Dh was in a horrible accident in January, and has since had months of physical therapy and two surgeries and has two more to go. He has been taking care of me for the last couple of weeks, but in a couple more weeks he is having another surgery! How is this going to work? I have to feel better fast! Are we having fun yet? Ugh!
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I too met with my MO today. He called for scans within the week, come back and see me next week. Meantime stop taking the drug. I suspect he suspects liver mets.
Sigh. I was hoping for a month or two more. I feel generally fine. Weaker than I was a year ago but that's likely due to the 'keep off your feet' issue one week out of three.
Who knows? Maybe the scan will show nothing? [Fat chance] Now I get to walk down to the cancer center and back three times next Tuesday for bone and CT scan.
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Bigbhome, I hope the lowered dose helps. I'm on 2500 and tolerating it fairly well. My MO wanted to go to 3000 and I said no, lets wait. We can always up it if scans/TM don't improve Quality of life is very important to me too. I hope you get relief and feel like you are enjoying things and able to be there for your husband. That must be so so hard.
Pajim, ughh. No to liver mets! Why do you think he suspects that? Are you having any symptoms?
I have a lot of body stiffness and achiness especially in hips and legs and I don't think it's age (I'm 61) I think its the X
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I'm pretty stiff too and I'm only 50. Was on the anti-hormonals and it's continued. I get random aches and pains. Makes me think I need a supervised exercise program or something.
intothewoods, there was a lot of "well your liver function tests are high" (no higher than they've been over the last year) and "your bilirubin is up" (yep but they diagnosed Gilberts years ago which is random rises in bilirubin). I have zero symptoms so I think he's full of s---. But abnormal liver function tests are his hot button. Last Christmas I had a blood draw right after returning from an all-you-can-eat-and-drink week in Mexico. Tequila anyone? He freaked out at my LFTs. Needless to say everything was fine.
TMs are rising and have been for the last five months. We had planned on scans at the end of the summer (summah in my part of the country) but he moved them up. I'm hoping he just forgot we'd talked about August. Lest you think I'm passive, when I need something I get it. Otherwise I keep him happy.
Truth is I suspect he there's a clinical trial he wants me to consider. The one Susan02138 is in. I'll find out next Wednesday.
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dear. pajim thank you for suggesting this thread. Many helpful tips. I'm on day three of first round of Xeloda 1500 morning and night. Starting to get swelling in both ankles. Skin pretty tight so following your advice to lather up with cream twice a day. Do you recommend socks and gloves? I hate sleeping with either one. Can do it if it helps tho. I also noticed an increase in nause. Because of neuropathy in fingers typing can get challenging, But this is all so hel
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oh my, my posts are getting all messed up! So
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i have been on 8 pills a day, 7 on and 7 off, last visit she lowered lowered the dose to 7 pills a day, but i do not feel any dif. Bad hand and foot so will see whant mo says next week. Tired, well that is a given for sure! Not sure the number of rounds but started beginning of the year
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Pajim, he may indeed be full of sh-- based on your LFT history. I too had a Mexico vaca Christmas of 2016 and enjoyed tequila daily. How can you not? No problem with my liver function tests in January. I occaisionally will check in re alcohol consumption and my once mostly has said the LFT are fine and an occasional drink (once he said a small daily glass of wine) won't hurt. Sadly, one of my greatest pleasures is no more because even if he gives me the green light wine just doesn't appeal or taste the same way anymore. I'm leaving for a river cruise on Monday and am curious if the new environment and the "vacating" of the mind will change that.
On the stiffness issue, I've recommitted to getting in a daily short yoga practice so hopefully that will keep stiffness, aches and pains to a minimum. I hope you are enjoying summah (that's how a former roomie from RI also pronounced it- thanks for the memory) and all news is good news.
Proudtospin I hope you get some relief soon. Even 7 pills seems like alot.
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yeah, i think 7 pills is a lot as well, but my numbers were through the roof when i started. I had down a dif med at dif hospital that failed and sort of encouraged to go somewhere closer to home. It was wierd really but this hospital is branch of sloan kettering and i feel good about the place. My numbers are all steadily moving down. I really hope to ket them down more but have to admit to pain in my left side the last 2 weeks, not sure what it is
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Goldie- did you get the foot cream yet
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Hi all! Just going to jump in, had 2 little mini get aways. DR, I did get the cream. Have not been diligent with it as my feet had cleared up some from my 2 week break. I was shocked at how things cleared up just from that. But now the feet are cracking again. One on the bottom of each foot. Hands are still doing well. So I will try to be better with it now. How often do you put it on and how much. The tubes are quite small! I use about a lima bean size and mix with some coconut oil, then wear my rubber flip flops around the house. As socks just seem to absorb everything.
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gee, what is the name of the cream? I see my onc tomorrow and have been having serious issues with my feet
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The cream is Ciclopirox Olamine 0.77%
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Goldie, I had been using it twice a day but now they are cleared up I use it once a day. My feet look 110% better. I rub it in good..
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well my onc and i will be having a conversation on creams. My dermatologist gave me one, it cleared up my hands but feet still crumy but better
I have been wearing socks to bed, how to you ?
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STARTED XELODA YESTERDAY!
Hi Everyone, I've been lurking in these boards and thought that I would post. I was on IBRANCE and was successful with it for about 5 months... then out of the clear blue my tumor markers started going up, was sent for a PET scan and it showed the cancer made its way to my liver. They retested the tumor and now i went from ER+(65%) to ER-. Not sure what happened but it freaked me out.
My MO said that Xeloda is the next line of treatment, I made an appointment with Dana Farber, not telling them what my MO said and they told me that Xeloda is my next line of treatment as well. I started yesterday.
Im encouraged to see many posts here that people are having success with Xeloda and that even some show NED.. I love that acronym!
Thanks for letting me share. I look forward to connecting with you all.
Tina
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Proud, I do not wear socks to bed. If I do, it's my silicone ones. I feel like socks just absorb what goop I put on my feet.
Hi Tina welcome, but sorry you or any of us need to be here. Me, I have been with Madame X for 4 years. Hoping you get a long run with her.
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thanks goldie, been thinking the socks are sort of counter productive. I stopped wearing glovex to bed and my hands have stopped pealing. Tonight, off go the socks.
Well on to mo this afternoon, lets hope only good news
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Good luck with the MO today Proud.
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thanks goldie, i do not have my test results yet, 2 days till they post them but......i get to drop my dose to 3 and 3 a day and hope my feet will be better. Next month another blood test and sept is pet scan but feeling postive!
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hi ladies, i didnt think my feet were that bad but onc insisted on an extra week off due to cracks appearing. Hate to have a week off. First 3 month scan was very positive (clearing one side of liver completely, rest looks scared from chemo presumably like cirrhosis but chemo induced). Now feel dull pain in liver maybe once or twice a day. It scares me but due scans after this next cycle. I will make a note of the cream u mentioned goldie. Ive been using udder cream which has been better thsn most so far!
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Lilly, I can't say yet for me if that cream is working yet. My hands and feet were pretty bad, so told my onc I was going to to take a break. So my last cycle, I only took my pills for 1 week, instead of the 2. Then I took 2 weeks off. I was amazed at how things cleared up. But it didn't happen until after my 2 week break. They are still doing pretty good. Feet are starting with the HFS, hands still pretty good. I think it's been a good month and a very welcome reprieve! DianaRose has had good luck with the cream, reporting things are 110% better!
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morning, well feet and hands are looking pretty good this morning. I stopped wearing socks to bed. Still using bag balm at night and udderly smooth during day, feeling positiive that i finely have a handle on these side effects
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Some important info for those of us suffering from hand and foot problems.
https://www.ncbi.nlm.nih.gov/pubmed/24971407Randomized trial of vitamin B6 for preventing hand-foot syndrome from capecitabine chemotherapy.
BACKGROUND:
Capecitabine is an oral fluoropyrimidine that is used to treat various malignancies. Hand-foot syndrome (HFS) is a dose-limiting toxicity of capecitabine that can limit the use of this agent in some patients. Some investigators have observed that pyridoxine (vitamin B6) can ameliorate HFS that is caused by capecitabine. We designed a prospective trial to determine if pyridoxine can prevent HFS in patients who receive capecitabine.
METHODS:
In our double-blind, placebo-controlled trial, we randomly assigned eligible patients who were treated with capecitabine to receive either daily pyridoxine 100 mg or placebo along with their capecitabine-containing chemotherapy regimen. Patients were observed during the first 4 cycles of capecitabine treatment. The primary endpoint was the incidence and grade of HFS that occurred in both study arms.
RESULTS:
Between 2008 and 2011, 77 patients were randomly assigned to receive either pyridoxine (n = 38) or placebo (n = 39). Dosages of capecitabine were equally matched between both arms of the study. HFS occurred after a median of 2 chemotherapy cycles in both groups. HFS developed in 10 of 38 (26%) patients in the pyridoxine group and in 8 of 39 (21%) patients in the placebo group (P = .547). Therefore, the risk of HFS was 5 percentage points higher in pyridoxine group (95% confdence interval [CI] for difference, -13 percentage points to +25 percentage points). Given our study results, a true benefit from pyridoxine can be excluded. No difference in HFS grades was observed.
LIMITATIONS:
Single-institution study.
CONCLUSION:
Prophylactic pyridoxine (vitamin B6), given concomitantly with capecitabine-containing chemotherapy, was not effective for the prevention of HFS.
Decadence is decay in standards, morals, dignity, or skill at governing among the members of the elite of a nation that can never get enough of what they don't need.
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cross posted
I had my first visit with RO after my gamma knife treatment on my brainin s May. It was interesting.
He said I was 4 spots short of excellent. The great news is everything they treated appears to be gone. Woo hoo. That's 30 spots.
The less than excellent is I have 4 spots on this MRI. Looking at them he says 3 of them are questionable as Cancer- they might just be artifact. The last one however was there when looking at my scans in Zmay it wasn't treated as it really could have been an artifact at that time. It is also near my spinal cord in a very tight space in the cerebellum.
After much discussion we decided to do more treatment at this time. It is mostly because we know we have an insurance battle to come and that will probably take the amount of time we would have watched the spots for anyway. It might be gamma knife again or it could be one day if cyber knife. I am going to ask for gamma knife so if anything new shoes up they can test it. Cyber knife is limited in hue many lesions it can treat at one time.
I am not happy that it appears something grew in my head on my current treatment. However it is tiny and found have been there before so maybe this treatment is keeping me stable. I don't know.
So I'm feeling s little down. Running out of treatment ootions ifvtgese buggers keep growing in my head.,
I have s good team so envision another round of gamma knife in August-September.
It never ends.
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hi Leftfootforward, I can understand your frustrations with the results, but you also have a lot to celebrate. They got rid of most of the lesions...and the new TX will take care of the rest.
Be strong and positive, sending many good wishes of a complete healingyour way.
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LFF, happy for you on the good side of things, sorry there are still more spots. I hear you on running out of options, it scares the bejeebies out of me.
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Well ladies, after 13 months on Xeloda, and a relatively easy time, I'll be moving on. My onc was only half full of s---. The bone scan shows that the bone lesions are actually better, but there's a single good-sized lesion in my liver.
I did finally get an explanation of why he freaked out. He had a recent bad experience with a patient. We forget that oncologists are people too.
We don't have a plan yet. It's off for peer review. Actually my MO is looking for an immunotherapy trial for me. But I suspect my first port is in my near future.
It's been fun! Except for the blisters in Copenhagen last October.
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Pam - very sorry about the Xeloda fail. I have been following your updates and was rooting for it to continue working. I wonder if they are going to try Afinitor or Verzenio as a monotherapy before they suggest IV chemo though.
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Pam- if it is a solitary liver tumor, could you ask about s local treatment for it only and stay in Meds keeping Hines stable? I had a line liver tumor pop up while on Celoda and was able to convince my team to treat it with either sblationnor resection and stayed on Xeloda.Y9 is also s great option for solitary liver tumors .
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