All about Xeloda
Comments
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Nicole and Denny, good luck with those scans. I will have nuclear bone on the 24th.
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Just updated my diagnosis information but it was difficult to get it all on there-in fact it is missing some of my past treatments. I decided to just not bother. I will keep up to date on my current treatments-who needs the stress! It's been good to have contact with others who are on the same journey and taking the same treatment. I'm in California and my treatment is through a doctor who works for UCLA but at a remote office so I feel like I am getting good advice. It is still good to hear how different some of the treatments are for similar issues. In three weeks I find out if I need additional treatment for the new lesion on my liver which is 1.2 cm. Doctor is trying HT first since it is 100% ER+ and I have been ER- since 2017 even though I was originally ER+ since my very first diagnosis in 1996. My doctor said cancer sometimes changes from positive to negative and in rare cases back to positive. He doesn't know yet whether I have a combination which seems odd to me because he said it is not a new cancer. I hope I'm making sense here! Yes, I am still on X 2000 mg per day 7 on and 7 off.
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My chest nodes turned from Her2+++ to BRCA2 positive Somatic, which I guess is equivalent to Neg. Who know what my next tumors will be....
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Fingers crossed for all!
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My BC was ER+, PR and HER2 negative for 26 yrs. Then progression in year 27 to bones only (so far) and a change to ER- last February.in year 28. Now triple negative, which is scary and has limited future options. However, so far, so good, on Xeloda. This is a sneaky disease.
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Joyner, I can't believe cancer came back 27 years later! Was it indeed breast cancer that spread to the bones? You must have thought for a long time that you were cancer free! Not fair!
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My MO was totally shocked, as certainly I was. Yes, it was BC, for sure. I had had a CT of my chest for something completely unrelated....and there it was...in the bones. They did an immediate bone biopsy to confirm diagnosis (thinking it might be multiple myeloma or lymphoma), but it was a recurrence of my original BC.
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I wish that the Foundation One testing was developed many years ago. I lost a lot of Stage 4 friends because their chemo quit working. Perhaps the testing would have shown a reversal of the cancer properties. This really gives us a lot of hope now.
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Denny-what is Foundation testing?
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I had foundation one..and it said my cancer had all the mutations for Ibrance to treat....and I only got 3 months out of it. The unfortunate thing with F1 is that its not like say... a UTI test..where they test different antibiotics against the bacteria to see which one will work. Foundation 1 just tells some of the mutations your tumor has and what meds usually work with that mutation. They are good...but tumors have many many different mutations and again even when they see the one you have and they treat it with what is "suppose" to work...doesn't always work.
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Live....this.....FoundationOne CDx is the first FDA-approved broad companion diagnostic (CDx) that is clinically and analytically validated for solid tumors. The test is designed to provide physicians with clinically actionable information — both to consider appropriate therapies for patients and understand results with evidence of resistance — based on the individual genomic profile of each patient's cancer. Every test result includes microsatellite instability (MSI) and tumor mutational burden (TMB) to help inform immunotherapy decisions. You can also order PD-L1 immunohistochemistry (IHC) testing† to help inform your therapy decision. FoundationOne CDx has national coverage for qualifying Medicare and Medicare Advantage patients across all solid tumors.‡
It did show that my chest node recurrence was no longer responding to my Kadcyla because my tumor properties had changed. It indicated that my next tx could be Lynparza. But while we were waiting for the test results, I had a clinical trail that did get rid of the tumors.
But when I have another recurrence, who knows what properties that will have?
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On Sunday, the 17th, I will complete my first 14 days on xeloda. I take 1000mg twice a day following meals. Truly, this is a wipe-out drug. Before this chemo drug, I was only afinitor and fulvestrant for 11 months. Before that I was on Ibrance and exemestane.for 17 months. My progression free survival time is averaging around 15 months, so I am hoping that xeloda will extend my progression free survival time. My oncologist said I am on a low dosage of xeloda, but honestly I don't think I can sustain a decent quality of life on a higher dosage. The nausea, abdominal pains, and fatigue is quite challenging. My meals are smaller and the amount of water I drink in one setting is 6 ounces, so my stomach is not to full. I am drinking about 36 to 40 ounces of water daily. Does anyone have other suggestions for surviving xeloda? Normally, I am in Silver Sneakers three days a week, but I was too fatigued to go this past week. HELP! I welcome your suggestions. My one week break is coming soon and I'm hopeful that will replenish my energy and calm my digestive system. As far as the hand/foot syndrome - no issues. MAWS
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Wow, Maws, I'm so sorry that you're struggling so with this regimen. My experience has been very different: some hand and foot and some fatigue, but nothing like you're going through. I pray that it's temporary and that your system will adjust.
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Nicole and Denny-I hadn't heard of Foundation 1 but I did have a comprehensive test done to see what kinds of treatments would work for me about 18 months ago. I have to dig it out to see the results. It showed I don't have Braca 1 or 2 or something that I needed for immunotherapy to work. My liver biopsy was sent off for more detailed reports and I don't have those results yet-just the basics.
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Joyner-sorry you had a reoccurrence after 27 years. My reoccurrence was after 17 years and it had spread to my bones and lungs. It was ER+ at first and then 2 years ago changed to ER-. This small tumor that appeared on my liver last month is back to ER+. Cancer is playing games I guess! I have been on X for 2 years and just added HT.
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Maws-I used to have very high energy before being on medication for cancer but it seems the X has wiped me out more than the others. I, too, get very tired and have trouble with my digestive system. It isn't as bad as it was in the beginning but not as good as I would like it to be. I have lost weight since being on X and don't have weight to lose. I get full very quickly and often feel on the edge of nausea. I hate to take anti-nausea drugs because they make me fall asleep and also are constipating and I already have problems with that. My doctor has me on X for 7 days and then off for 7 days. I can't imagine being on it for 14 days before a break. I have an appointment in two weeks to see a gastroenterologist and also a pulmonologist to see if they can help. I have small nodes in my lungs and a small amount of fluid in my pleural area making me have some breathing issues with exercise. I take 2000 mg of X a day-I tried a higher dose but could not tolerate it. I'm sorry you are having tiredness and digestion problems but at least you make me feel that it isn't just in my head! I have to mention that I have always had a delicate digestive system which may explain that. Is it possible you could talk to your doctor about trying 7 days on and 7 off?
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Living I am about to start X on the 25th ...I talked my MO into the 7 days on 7 off and 2000mg a day . I am hoping that will make the difference for me. I am worried now hearing you say that the anti nausea meds are consitpating . Constipation is a big issue for me!!! I do miralax everyday and Magnesium Citrate at night...and still have a problem
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Nicole-not everyone feels nauseous with this drug. I have a very sensitive stomach. I don’t take any anti-nausea drugs. I drink ginger tea. I take Metamucil and sometimes Miralax. Wait to see how you are on X. It seems we have different reactions like any drug. I don’t want to have infusions so I prefer to take pills.
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maws-I started at 2,000 a day at 14 days on, but my feet quickly got very sore. So I was immediately given a 2 week break, and then went to 7 days on a 7 off.
So tell your onc right away. The HFS usually starts on the week off.
I am always fatigued, but after 17 1/2 years of chemo, that is to be expected in my case.
I like OTC Emetrol for nausea since it works better than Zofran and isn't constipating (although I am always constipated, Emetrol or not).
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Live-I asked my specialty pharmacist about Metamucil and she said not to take it with X. She agreed with Miralax. And I also take 300 mg of stool softeners a night too.
That has kept me "going" pretty well.
I am now having problems sleeping again. Melatonin quit working. Will have to check the sleep-aids when I hit WalMart tomorrow.
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I will try the OTC Emetrol-thanks Denny. I take the Metamucil at least two hours before taking X-don't know if that is good enough but my oncologist knows I take it. What brand of stool softener do you find works? Isn't it odd that several of us have problems with constipation but the literature about X talks all about diarrhea? It's barely mentioned-makes me wonder if they even know. Does anyone here have diarrhea issues? I buy an OTC sleep aid from Costco that has 25 mg of Doxlamine succinate and have to break it in half because it works too well. I use it occasionally when sleeping becomes an issue. No, I have not asked my doctor about it.
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I get constipated with Xeloda. I think it’s cos it dries everything up. My functional medicine doc recommended magnesium citrate which works great for me. Magnesium is supposed to help with sleep quality but for most I have an odd constitution and it keeps me awake if I take it late in the day. Antihistamines have the same affect on me when it makes others drowsy.
I was interested to see that some are struggling with insomnia with Xeloda. I have really struggled with insomnia and never put it down to the Xeloda. I have tried all the prescription medications they all keep me I’m on Temazepam which is a benzo. It helps but I’m told I can develop a tolerance. Are there may affected by insomnia since taking Xeloda? It might explain why it takes me ages to get to sleep the later I take it, but my 12 hour schedule is later cos I end up sleeping late.0 -
The instructions for Xeloda says take with food....within 30 minutes after eating a meal so I try to eat a substantial breakfast and take a late dinner and take my Xeloda. I happened to come across this below on an FDA website which seems to imply that food limits the absorption. Now I am totally confused. I have a mass on my sternum that I can feel and I feel like it’s growing. Now I’m wondering if taking the meds with substantial amount of food is reducing the absorption. I’m on 7 days on/off and get burning on my feet bit otherwise no major side effects.
“Food reduced both the rate and extent of absorption of capecitabine with mean Cmax and AUC0-∞ decreased by 60% and 35%, respectively. The Cmax and AUC0-∞ of 5-FU were also reduced by food by 43% and 21%, respectively. Food delayed Tmax of both parent and 5-FU by 1.5 hours“
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KatySmith I noticed that you are immunotherapy December 2018. Are you ER and PR+ / HER2-? If so, what was the immunotherapy, and how was it. Was it effective amd for how long did you take
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liveinthepresent could you kindly share the name of your Costco sleep aid?
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Can anyone tell me some suggestions for SEVERE constipation besides Miralax (which is doing nothing for me) senna (does nothing for me) Colace (also does nothing for me) and I take magnesium citrate 400 at bedtime (I am going to try and up this dose) ... I will buy prunes today or prune juice...but today I thought I was going to have to to the hospital...I could not get my bowel movement to pass...I was bleeding so bad (I have a fissure) I think I might be having a prolapse beginning thats how hard I had to push to get it out...I just do not know what else to do. I am told now that the first (and only) injection of Zoladex I got could be making it worse..and I JUST got that 1 week ago...sigh.... Also I drink over 60 oz of water a day.
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Nicole, can someone give you an enema this weekend? Constipation is THE WORST. I'm so sorry.
Katty
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Have you tried a self-administer Fleets enema? They're easy and effective, at least for me.
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I am going to start a thread about it to get some ideas..I don't want to hijack this thread...but thanks for the enemma suggestions..I have never had one or done one....
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It's EASY!!
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