All about Xeloda
Comments
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NinaCA, let me know what they say.
Cross-posting. So it's only been one month, three Faslodex shots and two 7/7 doses of Xeloda. My CEA dropped from 8.5 to 5.8, my 27-29 dropped from 379 to 314. My 15-3 popped up 1 point, so I would call that stable. Let's hope Xeloda and Faslodex keep doing their thing and keep droppingme down to normal like other people have. Mine have never done that. I so want it to happen.
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As I mentioned a few weeks ago, my onc, Dr. Evans, asked me to accompany him to a local high school to talk to the kids about my BC.
It was boys and girls..about 20 of them and the room was big and they were scattered out. Everyone had masks, including Dr. Evans and me. I would tell some of my story, and then he would talk about technical stuff. I am sure his stuff went way over their heads, since a lot of it went over mine. But the new treatments that he talked about were very encouraging.
I have been awake since 3:30 am because I was worried about being real close to people....a new thing for me to be around more than a few people.
But it went well and Dr. Evans complimented me on telling my story. I guess it is because I have been telling this story for almost 20 years.
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KBL- I like this TM trend!
Denny 123- thank you for doing this!
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Thank you, Nkb.
Denny123, I hope the students really learned something from your story. It’s so important for others to understand.
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I have been on xeloda since around mid June. I had posted on here that I had a bad reaction to my first attempt (dehydration, needed IV fluids and antiemetics and had to take a break). My MO then reduced my dose to 1000mg per day -- 500 in AM and 500 in PM. I know that is an incredibly low dose. I am also taking neratib, an anti HER2 drug which can also cause issues with appetite and nausea.
So as of this minute, I am again off of xeloda, despite the fact that the two drugs together caused my TMs to drop amazingly, and my CT scan came back with improvement in liver and stable in bones. I am having continued issues with lack of appetite and inability to eat in any normal fashion (high on the hit parade many days is a milkshake.) I had a Telehealth visit yesterday with my MO along with the pharmacist assigned to the breast center to talk about both drugs. We are going to leave the neratinib dose alone (it's at the lowest recommended dose). The pharmacist has suggested that we tinker with the xeloda however. Apparently xeloda is available in 150 mg pills, so we are going to try 450 mg 2 times a day to start, and then if that doesn't work, we may mess with it more. This will be a work in progress over the next two months to see if we can get this straightened out and do-able for me.
I just wanted to let folks know about this approach. It seems that most people don't have these issues with nausea/lack of appetite with xeloda so I must be the odd man out. I'm perfectly willing to stay on the drug if we can make it work along with the neratinib. But I can't stay on it the way it's going now.
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Hi all, I'm popping into this thread because I just read my MO's notes for my video visit yesterday. She noted that she is going to order a PIC3CA test. I'm kind of unnerved about that. Why is that test ordered? Is it a standard test? I'm checking here before I ask her.
We did discuss some other issues I've been having and she has ordered a brain MRI for me. I'm on hold with the clinic right now to get that scheduled.
Anyway, I thought I'd ask what your thoughts are on this test and how it might change my outcomes.
Thanks,
Carol
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The test tells whether you have a mutation that allows you to use Piqray, which is one of the newer drugs. It's also known as alpelisib. The test has nothing to do with your outcomes -- it simply shows whether you can use that drug.
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Thank you, BevJen!
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My new question I woke up to this morning, in my quest to have some control over this cancer, is to ask about the use of Xeloda with anti-hormonals. I believe Back in 1999 they came out with the information that taking tamoxifen and chemotherapy was a no-no. The tamoxifen reduced the effectiveness of chemo by 25%. This was before aromatase inhibitors were on the market. Fast forward to now, I'm seeing trials using AIs with Xeloda. Is there new information to support this that I don't know about? I am Her2 negative, no bone mets, ER+, ILC, so there seem to be no other drugs I can take with Xeloda. Right now markers over 1,500 and nothing is showing up on PETs. Brain MRI set for next week.
BevJen- Hope you get a handle on using both drugs. I like the way your MO is flexible and knowledgeable.
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Bev, hang in there, girl!!
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Hi all: My HFS is finally getting better. I have been using Aquaphor and putting on silicon socks (per a suggestion on this blog). I have been off Xeloda for about 5 weeks so I don't know if that is doing the improvement or the Aquaphor and socks. I am getting a CT scan and doctor visit on Monday. He will probably put me back on Xeloda but a lower dosage. I would like to go on 2000 mg per day (7 on/7 off) but he needs to make that decision.
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Wandering-YAY. I am the one who suggested the silicone socks. When I took a break from X because I was eating foods too high in folic acid, I tried going back to Aquaphor and cotton socks for a few weeks.
And my feet got so horribly dry....so I am back to the silicone socks.
Bevjen- good luck!!!
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BevJen, Just read up on low dose Xeloda, that it has similar efficacy as high dose. In a retropsective of dose adjustment studies Time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. More studies are indeed needed to help us figure out the best dosageing.
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NinaCa~ Could you please post a link to this study? Based on this it would seem crazy and unnecessary to start patients out on max dosages. Obviously, this is only one study and we know studies can be flawed, but it really makes me wonder if lower dosages of many of our drugs could work just as well with less se's.
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Jobur- also USC uses 2000 mg per day with everyone and says they get the same results.
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Hi All!
I just started my 4th cycle of Xeloda. I had a PET on Monday and all tumors ... ALL TUMORS .. have decreased. Considering I have mets in my brain, my liver, my bones, and in my lymph nodes, I am beyond thrilled and amazed. Dealing with peeling feet, but I will take that any day if my tumors are shrinking!
Tumor makers are also heading down by 50% or more. They still have a long way to go to get within normal range, but hopefully we will get there.
Maybe I will be blessed enough to join the ladies who have been on these meds for 3 years or more!
I also was interviewed by a company for the BC Awareness campaign earlier this month. It was fun and I hope it was educational and inspiring to those with MBC. I included the link in my blog in the PINK post. I mention the post name here only because we have had such good news over the past couple of weeks that I just had to blog about it. Three in one week! I am out of control!
Check it out. Feedback is appreciated.
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vbishop, I’m so excited for you. That gives me hope. I’m on my third week of Xeloda, on a 7/7 schedule, and I would love to know my tumors are shrinking. I won’t know until I have my lumbar MRI in January, but my tumor markers did come down after just two weeks on it, so I am so hopeful. I’ve never been NED.
I will look at your blog.
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vbishop: Yay! I read your blog. All you ladies hanging out with Madame X (is that the nickname, I saw it somewhere) must feel more hopeful. Great news. It may not be Lt Ned but it is his second-in-command.
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vbishop: Great post. Enjoyed your enthusiasm. I too had SE's from the Xeloda. I could barely walk. There are some blogs on here with great tips for dealing with that. I purchased some silicon socks and Aquaphor. I found it Is best if the socks are one size larger than your usual. I apply the Aquaphor, put on the silicone socks and a pair of cotton socks on top of that. The cotton socks are my husband's - mine are too tight over the silicone socks. I have been off Xeloda for 5 weeks so I don't know if the improvement is from the layoff, the Aquaphor or the silicone socks. I started back on Xeloda yesterday but at a lower dosage (2000 mg per day). I purchased the silicone socks and Aquaphor from Amazon Prime. Good luck. I have read some nice posts about this drug and with some good results. I had a CT scan this week and the oncologist said there was no advancement in my MBC. Pretty good news from someone diagnosed over 8 years ago. My tumor marker went up but not too bad since it had gone down substantially. I put lots of faith in the new CT scan anyway. My oncologist was very sweet and reviewed it with me on Monday. He seemed pretty pleased. I celebrated with a cup of ice cream.
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vickie, your video was awesome. You did a great job and your positive attitude is inspiring. Thanks for sharing.
Be
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I haven't been NED since diagnosed as metastatic either. Xeloda is giving me hope for the future. I hope it does the same for you. Hang in there! You can do it!!
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Thanks for checking out the blog. I try to choose happy everyday. Sometimes it's hard, but certainly a plus when you get there! Stop by again!
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You go, girl! I want to make it 8 years or more! You give me hope that its possible, something I wasn't feeling a few weeks ago! I use aquafor at night and it makes a world of difference. I use a Urea cream during the day. It isn't as "messy" as Aquafor ... but I really think Aquafor works better.
Yay for the good CT! Here's to many more years!
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OhioNana - thank you for the kind words! Love the name. I am a Texas Nana to three grandchildren and two step grandchildren. Being a Nana is the best, isn't it!
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Just for info… we thought Xeloda was failing in august as very slight progression. Having had massive SEs at the start we had dropped the dosage 3 times and reduced timescale to 10 days on and 11 off. I had little SEs on this. SO I suggested maybe I just wasn’t getting enough considering how bad the SEs were to start with. We agreed to up the dosage by extending the timescale to the standard 14 days on and 7 off and scan in 2 cycles time. This was delayed by over 6 weeks and I’ve now had 4 cycles. Today results in and I am STABLE. No more progression. My MO very pleased and I am hugely relieved!
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Well, I am sorry group but I will be having to leave this thread.
18 months on Xeloda was a great breather for me with all tumors "resolving" BUT I received new PET/CT results today. It found "Free fluid is seen within the pelvis and surrounding the liver. Increased FDG uptake is seen within the free fluid within the pelvis with a SUV max of 6." Otherwise, no tumors elsewhere. This is the ILC being sneaky, going to "other" places and it makes me less desirable for a clinical trial since they want measurement to prove success. Fluid is not considered "measurable". I will be starting TAXOL in 1-2 weeks, no port to begin with, and I'm looking into Cold Caps (at a more distant location than closer infusion center). Take Care and GOOD LUCK All - NINA
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Nina,
I am sorry to hear this! I sent you a DM. I really hope the Taxol works until we get a really good oral SERD or CERCE or whatever potent anti estrogen is in the pipeline.
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Nina,
I'm sorry to hear this news. How do they know that the fluid is ILC? How about contacting NIH and seeing if they know of any clinical trials that you might qualify for?
Good luck. I'll keep my eyes open for any clinical trials.
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Hi Bev, Just had a PET/CT with contrast today, only 7 weeks since my last one (no contrast then) and my mets finally showed up with increased FDG uptake in free fluid within the pelvis (SUV max of 6). My rising markers gave a sense of urgency to doing these scans frequently. I also had a Brain MRI scheduled but I think I will cancel since we know why the markers were rising (past 1,600). New ballgame now, new rules, new meds, new research, new territory etc. Thanks for checking on clinical trials, my MO was not hopeful since it is not a measurable tumor but maybe someone will be interested in measurable fluid. Hopefully Taxol will have some effect. Just wondering if I should add an anti-estrogen to the mix. Can't find any research on that. Onward on this journey. Hugs All
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Hi Bev, Just had a PET/CT with contrast today, only 7 weeks since my last one (no contrast then) and my mets finally showed up with increased FDG uptake in free fluid within the pelvis (SUV max of 6). My rising markers gave a sense of urgency to doing these scans frequently. I also had a Brain MRI scheduled but I think I will cancel since we know why the markers were rising (past 1,600). New ballgame now, new rules, new meds, new research, new territory etc. Thanks for checking on clinical trials, my MO was not hopeful since it is not a measurable tumor but maybe someone will be interested in measurable fluid. Hopefully Taxol will have some effect. Just wondering if I should add an anti-estrogen to the mix. Can't find any research on that. Onward on this journey. Hugs All
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