All about Xeloda
Comments
-
Awwwe SP. so sweet. Sorry about your progression. How's the downsizing going? I clean and toss like a fiend waiting for new treatment plans.
I like keifer. I think that's been my downfall this week. No yogurt and my system is out of whack.
The replens seems to help. Would think BVstinks and yeast has a discharge. Will have to been seen if it doesn't clear up. I just haven't been in years? To see my GYN. No body parts left but prefer her to my PCP for that area. Don't know why I'm modest? After all we've been through.
No AIs. Don't work on my mutation but yes menopausal thanks to chemo. Just me and xeloda with zombie fingers, itchy Australian fanny and out of whack digestive system but I'm still here to steal my kids Halloween candy😝
Best of luck SP and keep in touch.
0 -
No progression, Zills. Over a year on Xeloda, tumor markers still low normal.
Surprisingly, it seems bv does not necessarily have a strong odor. Yep, I’m still modest, too.
Enjoy the candy! Two words: Pumpkin cheesecake.
0 -
Hi shetland pony,
What dose are you taking of the xeloda? Are you taking it alone or with other chemo meds. I am on a week break because big toe nails are white. I am taking it with Navelbine iv also every 2 weeks.
I need to go back on it (xeloda) think it works well on liver mets., but I have no appetite on it, and started spiking temps. was hospitaized for 2.5 days. Nothingcae of it. It may be too much to take 2 drugs together.
Raven
0 -
xeloda cleared my liver, now on second mec to get the mets to my bone cleared
Got a port yexterday for my infusion chemo since the veins in my right arm have collapsed
0 -
Hi dear xeloda-women!
I'm still rather new to this drug. I'm on my 3rd cycle. I have extensive liver mets (since May 2017). This is my 4th drug and so far nothing has worked for me (letrozol, faslodex/ibrance, taxol). Before I started on xeloda I had pain in my liver almost all the time. 1st cycle was very hard on me (4300 mg a day 14/7) - and I had to take a break before 2nd cycle where the dose is lowered to 3000 mg a day. I got almost all the SE you can get and the onc. actually wanted to take me off X because of too many SE. But I insisted as I will really give this a try - otherwise I'm thinking of stopping all kinds of treatment since nothing has worked, cancer just grows, and I'm only having the SE and extremely low QOL. I want to enjoy my last time on earth!
However, I'm still having the extensive pain in my liver (and actually the 3000 mg a day are also very hard on me). I would like to ask those of you who also have liver met (and many of them - and large!) - did your liver pain continue even if xeloda worked for you - or is the continued pain a sign that it's not working. The pain has for me until now always been a sign that the mets are multiplying and growing. But I really want to keep up hope!0 -
Yea SP! Guess I got confused. Love pumpkin cheesecake. Pretty much any cheesecake.
I get the lack of appetite. I think it has to do with lack of taste.
I love my port. So glad I got it initially. Just doesn't work for pet scans. Been trucking along with it for five years. Knock on wood.
0 -
Lisbet54, I was diagnosed same time as you. I tried Xeloda for 4 days and that was it for me. Apparently a small % of us cant metabolise Xeloda and I am one of them, maybe you are too. My Onc also biopsied me and realised I had gone from hormone + to TN. I was put on Eribulin and this kept me stable for 9months. It's a good chemo for H+ and TN
0 -
Hi-- I was wondering if people had an early indication of response or lack of response to Xeloda, especially people with lobular breast cancer. Did your CA27-29 or CA 15-3 correlate with progression? Did you have early rise/flare response in your markers and then later have them drop as an indication of response?
I just completed my second month on Xeloda (1500mg twice a day, 7 days on/ 7 days off) and my CA 27-29 continues to rise about 10% each month (56 when I started Xeloda, to 62 after the first month on Xeloda and now 69 after month 2.) My CA 27-29 has risen steadily since late spring, when it was in the low 40's--it had gotten to that range and stayed around there the last two years I was on Ibrance. Both my onc and I believe that my CA 27-29 is igeliable, and this rise is ndicative of disease progression, although we can't get objective confirmation via scans. Unfortunately, my lobular soft tissue mets (colon, abdominal, peritoneal,omental) do not show up at all on scans-- only discovered by direct visualization during surgery and a colonoscopy, and I have such extensive bone mets-- thousands of mostly pinpoint to 2 mm lesions-- that it is difficult to follow progression or response in bone. So we rely on symptoms-- especially those related to a paraneoplastic syndrome that flares when my cancer is active), labs (especially alk phos), and CA27-29 and CTC count.I will meet with my onc on Tuesday and I believe she will counsel one more month on Xeloda to see how the 12 week marker responds, and also see the result of the CTC count we are planning at that time. My CTCs were 2 before starting Xeloda, and still 2 after the first month on it. We did not check the CTC this month.
Also, has anyone developed tinnitus (ringing in your ears) when taking Xeloda? I have started to have fairly persistent, faint high-pitched ringing in my ears over the last week or two. It doesn't seem to be listed as a side effect anywhere I have looked, but I know there are often side effects that don't make the lists. And has anyone developed slightly blurred vision and maybe worse than usual dry eyes on it? That has cropped up recently, also.
Thanks for any information or insight you are willing to share. I greatly appreciate your input.
May you all have continued long responses from your current treatment, and may you find a moment of joy in your day.
Elizabeth0 -
my liver mets have cleared on xeloda, yeah
I still have bone mets so doc has added a second chemo to tackle that, too soon to tell
0 -
yippee! Ugh to second chemo
They don't test my markers. I have had dry eyes and some vision changes off/on. Gel eye drops at night help. Xeloda dries out everything!
There was someone that had tinnitus. And no it's not common. Try searching for it. Are you still in femara?
0 -
Asking once more - hoping that some one will answer: Since I started xeloda the pain in my liver has got extreme. Could this be a side effect - or may it be because it doesn't work and cancer is growing (already had liver pain before, but now it's really bad)
0 -
lisbet54: I have 2 liver mets, diagnosed via CT and PET/CT in March, 2016. I am on Xeloda,1500mg twice a day for 7 days on and 7 days off. I have had my tumor markers drop 102 points since I started Xeloda on September 7th. Prior to starting Xeloda, I was on Afinitor, which didn't do much for me except allow my TMs to jump up. When I stopped Afinitor to make the transition to Xeloda, 3-1/2 weeks pause, I experienced liver pain. Not severe but I knew it was there! I have no liver pain now. My MO has told me that pain can be caused from the cancer growing but also from the drugs fighting the cancer. I would think you would only be able to tell via a PET/CT scan what is going on in your case. My MO has me on Xeloda 1500mg twice a day, morning and evening (3000mg total), 7 days on followed by 7 days off. She said where she trained they used that dose and frequency and found that it kept the SEs at a manageable level (always with some exceptions) and kept patients on Xeloda. I'd ask about adjusting your dose (7 days on, 7 off) and getting a scan before abandoning Xeloda but I'm not an oncologist! Good luck!
0 -
Wallaby thank you. Yes I need to wait for my next scan to see if it's working. I know it may go both ways. Just thought that if others had experienced liver pain when starting on xeloda I could hope that it was this. But I put my expectations down. I have multiple undefined liver metastases (+15 and from a few millimeters up to 7 cm). So far nothing has worked and the growing pain has so far always been a sign that it's growing. Sigh!
0 -
Lisbet, ILC and multiple mets here, too. When I had progression I had some liver pain, especially if I pressed on my liver. But my first few days on Xeloda I had a different sort of liver pain -- a HUGE ache that felt like my whole liver, and it hurt more when I breathed or moved -- and that was a sign that Xeloda was working immediately and well. May this give you hope! But if it turns out that neither taxol nor xeloda work, then ask your onc to do a biopsy and some sensitive testing to see if the cancer has turned Her2 positive and needs anti-Her2 drugs.
EV11, my CA 27.29 has proven reliable, and tells us what is going on before the scans do. My monthly tumor marker did drop dramatically the first month on Xeloda, same as it did on Taxol.
0 -
Shetlandpony, thank you! I really appreciate your answer. I do think that the ache from my liver right now are much worse than I have experienced before. I had a CT-scan yesterday - so I believe I will have the answers in the middle of next week. I will report back and let you all know. Elisabet
0 -
My Xeloda will be here Monday. I’m a bit nervous as always when starting new chemo. This change is due to new modules in my lungs. It looks like most people take it for liver mets. Anyone else taking for lung mets
0 -
When I was on a clinical trial of Gemzar with Herceptin in 2004, for my liver mets, I did have pain. My onc said that it meant that the chemo was working, and he was right! 9 months later I was in remission from huge mets.
0 -
Hi
Liver Biopsy return her2 negative. I started Xeloda by itself?? Should I have something else on board?
0 -
funthing-- I think Xeloda is fine alone for HER2- disease; it's a chemo that doesn't specifically target the HER2 gene/HER2 pathway, so you are on an appropriate treatment SO LONG AS the docs think that you don't have HER2+ cells lurking in some other metastatic site. But since your Herceptin was for adjuvant treatment of stage 1 disease a while ago and this met is NOT HER2+, it seems reasonable to hold off on bringing and anti-HER2 med into the mix at this time. If you are really concerned, you can consider a liquid biopsy (Guardant 360 or Foundation ACT test) to see if there is a HER2+ MUTATION (different than HER2 amplification, but if one is present you might consider adding back one of the ant-HER2 meds.) Also, was the HER2- determined solely by IHC testing or did they add ISH/FISH to validate? If it's only IHC you might consider asking the pathologist to run FISH or ISH (two different but very similar tests-- only one of them is necessary.)
Here is good link that addresses HER2 testing in easy-to-understand term:
https://www.verywellhealth.com/diagnosis-and-testi...
IF you have any questions about the reliability of your liver lesion HER2 test, there are institutions where you can send your biopsy specimen to for repeat analysis...
Xeloda action also doesn't depend on the presence of absence of ER/PR receptors, so you don't need an antihormonal medications with it. In fact there are a number of reasons why usually you DON'T want to combine it with hormone-targeting medication (increased risk for blood clots and the potential for PEs, and increased pressure on the cancer cell metabolism which leads to the tendency to drive more aggressive resistance mutations are the top 2 reasons to not add an anti-hormonal to Xeloda.)
If you don't know the answers to some of these questions, look at your pathology report-- and if you still have questions, ask your onc. You need to have confidence that you are on the right regimen... I'd be surprised if in this day and age you did not have FISH/ISH done considering your history of HER2 + disease, but....
Let us know what you learn. May you get a loonngg and durable response from Xeloda.
Elizabeth
0 -
Leftfoot,
Yes, please let us know what drug is next. We will miss you on this site.
Best of luck to you,
Lauri
0 -
Miaomix,
Would you be so kind as to share your mineral water/lemonade recipe? I sure could use it to help me with potassium intake.
Thank you!
Lauri
0 -
Dianarose,
I am praying that your current course of treatment will give you more time. I do not like to see any of us give up....but I totally understand where you are coming from. Do you need phone support? I will be happy to talk with you. Just know that we all care and are here for you. If you want to talk, send me a private message, and I will call.
God bless my dear.
Lauri
0 -
hi Lauri,
I simply fill a pitcher with distilled water that's also carbon filtered to remove chlorine. To that I add the lemon juice from two lemons and 1/4 teaspoon of pure stevia powder for flavoring. In that I mix 2 teaspoons of ascorbic acid (the equivalent of 8 grams of vitamin C) one teaspoon of potassium chloride ( or the equivalent of 4700mg the FDA minimum requirement) and 2 ounces of liquid magnesium chloride (which I prepare separately) that basically amounts to 400mg.
I make sure the powders are dissolved and drink that throughout the day. Most times it lasts me two days.
It's important to also take 1000mg of calcium citrate, vitamin D and K2 daily to ensure proper absorption.
Please note that my MO told me to not take any antioxidants while on xeloda, but as soon as my liver markers skyrocketed I simply resumed my protocol and added NAC, and pronto my hemoglobin, white counts and liver markers improved considerably. I’m also drinking chaga tea and turkey tail mushrooms extract, so I could also be benefitting from those remedies.
Take good care of yourself.
0 -
bioboo1- I am currently on taxol/Herceptin/perjeta.
Weekly taxol, and every 3 weeks I add Herceptin and perjeta.
Adjusting to new regimen. I was really used to Xeloda after 5 years.
Best wishes that Xeloda treats everyone well
0 -
Hi all,
Thank you Eve11. Ive never heard of a liquid Biopsy. I will definitely request it. I always get fish with all pathology reports. Because of the strange receptor changes. Awesome information. The first recurrence was thought to be her+. Only after my cancer came back a month after I finished chemo did my onc suggest genomic testing Caris.
Im hoping Xeloda does the trick for awhile.
Has anyone taken supplements to build the immune system.
I've been reading about interferons and cirrhosis of the liver. Im trying to stimulate t cells naturally since Im not a candidate for immune therapy. I know it contradicts chemo. Lol.
I spent my whole cancer career avoiding antioxidants being afraid of taking a multivitamin , avoiding grapefruit and now its avoiding folic acid. Lol.
0 -
Miaomix,
Thank you so much for this recipe. I am going to make it today.
Best wishes, and thanks again for sharing!
Lauri
0 -
Hello Laurie....just be careful when you measure the potassium...the wrong dose, too much, can literally kill you.You're probably already aware but I wanted to make sure...So read the instructions and measure carefully.
Also build up the intake slowly over three days so your body can adjust to it.
When you want to stop you can't go cold turkey...you need to intake less over three days as well.
0 -
Is anyone taking Xeloda for lung mets???
0 -
Well, I guess not. I’ve asked twice and gotten no response. So, my journey may be singular.
I just swallowed the first 4 pills. Before taking them I started feeling sick at my stomach. Taking them only enhanced that feeling. Ugh. I hope I don’t get terrible SE, but if I do,then because of you guys, at least I know I can reduce the dose.
0 -
I hope you took the pills AFTER a good meal...
0
