All about Xeloda
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Grannax, at the time of her scan and blood 1 month ago it is reported that ascites is mild. Her stomach does have some bloating to it. They are taking her off of Xeloda and onto Gem/Carbo.
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Just because TM's go up, doesn't necessarily mean there is progression. If she likes being on Ibrance, she should stay on it, or she can request more scans. If it were me, I would wait maybe another 3 months. Just my opinion. Good luck on what you decide.
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lisamariep, I have a problem with my bilirubin, but my MO said it could be either the liver or the Xeloda.
I could have kissed him today! He not only reduced my dosage but he told me to take a week off for my feet to heal.
I am so relieved. He put off my scans until I have a few more rounds of Xeloda under my belt. So the end of August. Hoping for no hurricanes this year. Last year I had to reschedule my scans twice
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Hi Rainedrop, thanks for the quick reply. Do you mind if I ask what your Bili levels are or were? Also , she just spoke to her MO and he said the same thing, could be either / or. Only way to tell is to stop the X, which he wants ,and retest the blood before starting any new treatments. This also can be helpful to see if future treatments can stay or be removed from the table. So now hoping it was a side effect of the medication.
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thank you goldie0827 ! she has a scan scheduled for 7/11 and after that I guess we will see if there is more progression since being in Ibrance. I have also read about genomic testing- which they test your blood to determine what form of treatment works best for you instead of letting the cancer continue to grow while trying different things. Seems like you have to go to a specialty place in order to get this testing done. Has anyone heard or done that testing? Hard to get anything out of the oncologist as they always just give you new meds and send you on your way
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Megan,
My wife Liz had a bit of fluid around her heart on initial Dx in November 2018. Before she started Xeloda in January they did some tests on her heart. I'm not 100% sure if it was to investigate the cause of the fluid further or for the Xeloda, or maybe both.
Grant
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thank you Grant- everything has been okay with her heart since the start of Xeloda?
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Megan,
Yes, Liz hasn't had any heart issues after starting Xeloda. She has been managing the typical SE okay so far. She is on 3300mg per day, 14/7.
Grant
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No, they did not test my heart before starting me on Xeloda. I’m 71, how old is your mother
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I just started Xeloda 1 week ago. They did no prior heart testing.
Gumdoctor
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Rainedrop - Sounds like good news. Hoping you great scans when they come around.
Gumdoctor
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Kendrasue - Yes I am ENJOYING YOUR ROSES!!! Thank you for sharing!!! I have some too and they are a great source of beauty and satisfaction. With great difficulty, I planted the 9 rose bushes all by myself late last summer.
Gumdoctor
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Just got the call about dose reduction.
Going from 4,000 to 3,000 mg a day, 7 days on, 7 days off. Start next Saturday.
Very hopeful I will do better with this new tx regimen.
Gumdoctor
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gumdoctor I'm sure you will.
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Megan. I've had genomic testing done. You'll have to tell your MO you would like to have it done. There are several companies that do this type of testing. I had Foundation One.the first time. Then, on a different BX of new liver mets my new MO sent it to Tempes. They take a piece of your tumor from tissue stored from BX. Your MO would have to order it. Mine were both covered by insurance. There are forms to fill out, etc.
But, let me warn you. It doesn't always show a better treatment for your tumor. Mine did come up with a mutation called ESR1. It only really tells the doc that my tumors have become resistant to any anti hormonal TX, Because of all the previous TX with AI pills, my tumors found a new source to feed on. So, AI etc. have not been working on me, therefore, progression. My answer for what TX is going to work is still a mystery. I was really bummed. There are some people who get answers because of other mutations/ alterations that show up. Some they have done trials already. So it's the future I think. But not reality yet. For me, the only firm info about my TX is that I don't respect to anti hormonal TX. That eliminates a ton of options. Therefore, my tumors are more aggressive, harder to control. 💞
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Lisamarie,my TBil was 3.6 at yesterday’s appointment.
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I started my fifth cycle of X yesterday. Here I go again with the FOF, Feet on Fire for two weeks. I got a lot of stuff done yesterday so I can just wear my house shoes if necessary. Two days till PET, 5 days till MO and results. UGH the life we live.💞
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Grannax and I are old friends from the Ibrance string. She followed our boat trip last year via my journal, when we bought the boat in Wisconsin and brought it back by water to VA. My husband, Austin, and I departed yesterday on a jaunt to the north, and Grannax asked for a link again. Grannax, here it is, and in the unlikely event that anyone else would be interested, the link goes to the journal, which will reflect changes as I make them.
Hugs to all, and good luck with that PET, Grannax!
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Looks you got off to an eventful start. Lo
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Without fail!!
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Can anyone recommend a sandal or flip flop brand and model style that you like and wear successfully without getting blisters or callouses? I've been googling "memory foam sandals or flip flops" and also "padded straps" and each item I find seems to have a drawback of some kind, like tight straps that cause blisters, or that the toe slips off the shoe bed, etc. Right now I'm wearing little white socklets and sneakers, but not quite appropriate for sundresses and summer skirts, and concerned about my feet getting too hot in them, as well. Thanks for any suggestions.
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Kendrasue, I like my slides from Naot. No straps, nothing between the toes.
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I loved my Ecco sandals and Clark’s.
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Megan, I have had genomic testing of the cancer twice, once from a biopsy of a tumor and once a liquid biopsy from a blood test. Typically they are done when progression shows it is time to change treatment. As Grannax2 points out, sometimes they help with treatment choice and sometimes they don’t. In my case the second one gave us an uncommon drug to keep in mind for the next change (neratinib for ERBB2 mutation).
I think your oncologist needs to do a better job answering your questions. Be sure to bring a list and make it clear that you have things to discuss. Ask the most important ones first. Get a second opinion if you keep getting brushed off. I fired my first onc partly because he was not interested in discussing things with me.
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Joyner recommended these to me. Just got here today, very soft and no rubbing anywhere. I ordered them online. They are called Vista. Just go to Roxy on line. They have tons to chose from. They don’t have a real thick sole but it’s very soft. 0 -
I like skechers memory foam flip flops & Clarks sandals.
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Hey, Xeloda buddies. Since this is one of my main threads, I wanted to post an update. I will have a “procedure” this week for a partially blocked bile duct. The blockage is likely cancer, but we won’t know what kind until the pathology report. The scary thing is that my TMs are normal, and if it is not a weird ILC met it could be primary bile duct cancer, which typically has a bad prognosis. That is a rare cancer, but my risk is higher than average because of a genetic mutation. So here I am hoping for bc progression! That is statistically more likely, I think. I am fairly calm, sad to see my family so worried, grateful to my onc and nurse for moving things along quickly for me. I am yellowish and very itchy from the elevated bilirubin. And more tired than usual. I started a thread call “Bile duct stricture could be ILC met” to see if anyone else had a similar issue, and received some kind words, but so far have not heard from anybody who had this happen. I will cross post to the liver mets thread where I also hang out a lot.
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thinking about you Shetland pony.
May it be progression and not a new primary. Ya, that sounds weird.
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Shetland Pony - Hoping for the best for you.
Gumdoctor
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Dear Shetland Pony, sending hope for the best result from your procedure. Kendrasue
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