Hi everyone.
I wonder if anyone is taking Xeloda with another drug. I recently got a surgery to remove endometrial cancer and the biopsy showed spread to abdominal cavity and gyno organs that were removed. I am on Xeloda now and it’s helping bones and liver. I wonder maybe something else has to be added because of this progression. Thank you very much Hoping for new drugs
Best,
Marina
You can take something else besides Xeloda. Lowering the dose can help with the side effects but follow your oncologist's suggestions or get a second opinion.
Cheers, June S.
Hi June. Thank you
I am on Xeloda and Faslodex.
Thank you
Have you taking Faslodex with another drug? I was taking it with ibrance but then I got progression to liver. Now I am taking Xeloda that helped bones and liver but I have progression to abdomen organs.
No, I only went on it when I started Xeloda. I have cancer in my stomach as well. I did Ibrance and Letrozole for two years, now on Xeloda and Faslodex for eight months.
Thank you for sharing. Are breast cancer cells in your stomach? Mine just spread there. Do you have other places? I have bones, liver but Xeloda helped and now abdominal
I have it in every bone and bone marrow from my skull to my femurs and stomach. I also have two micro mets under my armpit. It’s never been found in my breast. I have lobular. It’s very hard to detect, so it may be in other places but not showing on scans. I have it in three places in my stomach, the antrum, the body, and one other I can’t remember. The Xeloda is helping because I’m able to eat. When it stops working in my stomach, I’ll know because I’m unable to eat a lot and start losing weight. That happened in the beginning and then two years after Ibrance. I didn’t have known progression, but I knew something was going on again. The Xeloda has helped my stomach but not my bones or bone marrow. There is way too much for it to get rid of it in my bones. I just had an MRI of my cervical two days ago. I now have compression on my spine. I’m not sure if it’s the cancer causing that or because I have a lot of degeneration in my spine.
Thank you for sharing. The stomach Mets were discovered during surgery. They never showed in my pet ct. I had a primary endometrial cancer and when they biopsies many spots they found breast cancer cells in lots of places. My oncologist would like to discuss a new treatment with me this week. D we hat dose of Xeloda are you at. I as m on off lab er l 1500. Are you also on Faslodex? Xeloda was helping bones but with these new findings, I do not know what my oncologist will decide. Gor how long you have had it. I hope for new curative drugs. Good luck to you.
Yes, I’m also on Faslodex. I’m sorry about how many places you have it. Mine was a missed diagnosis for six years, until it spread to my stomach and I had symptoms. They thought it was multiple myeloma and didn’t investigate further when all those tests were negative. I’ve had it since before August of 2013, but no medication until June of 2019. I had an endoscopy that found the stomach mets.
Sorry, forgot to tell you what dose. I’m on 3,000 daily, 7 on and 7 off.
Thank you. I am on 1500. I was on 2000 but due to elevated liver enzymes the doctor lowed the dose.
I am on xeloda. Have to be very careful of the side effects. Once noticed call your onocologyst. I got an overdose and didn't mention how really bad the side effects were. A low dosage would be a great start. It is a good drug if your body can stomach it 88% successful. 2 cycles and my liver tumor was down 1 cm.
I am also on letrozole
Deb ❤
I am on Xeloda and Navelbine oral.
Thank you very much for sharing. Where are your Mets? Mine recently spread to the abdominal. For how long are you on this treatment? What is your dose of Xeloda? Any side effects? Sorry for so many questions. Hopefully new drugs will come out that will cure us. I am very depressed
Best,
Marina
Sorry for the late reply. I have brain, liver, lungs and bone Mets. I’ve been on Xeloda metronomic dosing since Oct 1, 2020. I don’t remember when Navelbine was added but I think it’s been about a year now. I’m still on Xeloda, Navelbine and Xgeva
Hi, Thank you so much for your reply. What is Xeloda metronomic dose? How many mugs? I am taking 1500 mgs now which is a low dose. Are you tolerating navelbine well? Hope for new curative drugs. I hope and pray that they will be out soon. Best,
Marina
Metronomic dosing is continuous daily taking of Xeloda but at low dosage. Mine is 500mg 3 x daily total of 1500 mg but no rest day or week off.
Thank you. I am taking the same dose one in the morning and two at night with one week off
That’s a very low dose to have a week off unless you are experiencing side effects. But if it works for you, then that is very good.
I am expecting pet ct. it worked in the past but then the surgery I recently had for endometrial cancer showed spread of cells to abdominal which was not detected by any imaging test
Are you tolerating navelbine well?
When I started Navelbine, I felt very fatigued and felt like I just wanted to stay in bed the whole day. My onc decided to reduce the dosage but my tumor markers started to go up. So we went back to the original dose of 40mg MWF or 3 times a week and surprisingly, there have been no side effects since,
I just started Xeloda end of May and had the dose reduced to 2500 a day, as I had side effects that were had to tolerate and I brought a medical docement with me stating that by lowering the dosage to 2500, that it did not lower the effectiveness of the drug and that at that dosage, the toxicity was much lower. I am now on my 2 nd cycle and doing well. We all too hope a new drug comes out. I read on here a couple of days ago, that another person just wrote about ErSo and that Systems Oncology was ready to start human trials but needed to fast track it via the FDA. If they can do it for covid, surely they can do it for us too. I am trying to find that information, but can't find it. I asked the person who wrote it to explain to us where she got the information from and I am still waiting. She started another change.org petition. The original one was started als September asking for 35k signatures. The new one is asking for only 2,500, which is quite low. Anyhow, I am sending positive energy and prayers your way. +++++
Hi. Thanks for your reply. I am on 1500 mg of Xeloda but recently got progression to the abdominal. The cells were found there during the surgery to remove the primary endometrial cancer. I hope for ErSo. I signed that petition. Where are your Mets? Good luck
I hope you are doing well. I was on ibrance and fasoldex for just about 14 months and then my doc wanted me to start a trial. I was not comfortable doing that and did my research on the next treatment because it had 2nd mets now. First in 2019 and then in 2021. First they were all over chest, ribs, spine, collar bone and nodes. 2nd time, same places, but also on hips, pelvis, etc. I am er+, her2 neg. Doc sent tissue to be studied to make sure my biomarkers have not changed, still waiting. Just had ct and all organs are ok, but have fibrosis in lungs and broncheisis. Won't see regular doc until the 8th of July and have a bone density test in the morning to see exaclty what is going on. I also take vitamin d3, bromelain for my lungs and quercitin to keep my estrogen at bay. My heels and big toe hurts the most on Xeloda, but I use peppermint oil with extr virgen olive oil on my feet and hands. Lemon oil in tea for nausa. I have some sleeplessness and I think it is just from anxiety. I also take cbd paste with oil to help with pain, degenertive spine issues. I have to say that I have to force myself to eat in the morning - have blueberries with oatmeal and it really helps with a good bowel movement every morning. At night for dinner I too have to force myself to eat, then again a boiled egg/apple prior to taking meds at night so I have no cramping in my tummy. Marina, do you have family that helps you? I have read your prior info about the thicking of your endo lining, etc and I think you also had a pacemaker too. I am alone and struggle on a daily basis to maintain positive thoughts and feel that this site is the best ever that I have joined. Everyone is just so kind. When you are down and need a lift, reach out, we will try to lift you back up! I feel for you for having so much going on, it is like one thing after the next. Hang in there, hopefully the new message from kiss_my_grits about Erso is on its way to be fast tracked for human trials. 🙏 Blessings, Paula
Hi Paula,Thank you for your reply and positivity. I am going through a lot now. The thickened endometrium turned to be cancer. I ad a surgery and my pathology report revealed breast cancer cells in abdominal that did not show at any pet ct. I also had an urological surgery but it did not help my kidney. It is still functioning 15%. Now I have lots of gastro problems. I have to get the toxins out of my body. I stopped Xeloda and even vitamins
Good luck to you
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