All about Xeloda
Comments
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Annamaria...my biggest liver tumor was the size of a baseball. Gemzar & Herceptin cleared all of them out and my liver is still clear.
I continued on Herceptin for 6 years alone, then had to get other stuff for a recurrence in 2 chest nodes.
The nodes are now gone and I am back on Herceptin with Xeloda.
So far, so good. Next scan in Nov.
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Denny - thank you for answering so soon. May I ask what treatment you were on when off of Xeloda?
How long have you been on treatment?
I just had my scan that showed the new tumors - for over a year things were good then IBrance must have quit working or the breast cancer found a new path around the IBrance stop sign.
Even though my spread was what they call Oligometastatic my oncologist wants to keep me in daily treatment for infinity. Does your oncologist think the same way. He told me that once you have this crap you will always have the diseaseLooking forward to your answers😊
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AMP-This is my line of tx...A/C, Taxotere, Gemzar& Herceptin..then Herceptin alone for 6 years. For my chest node recurrence, I tried Aromacin, then Gemzar again (didn't work), Faslodex & Kadcyla.
Then Foundation One testing showed that my cancer properties had changed from Her2+++ to Her2- Somatic. While waiting for those results, I had a Clinical trial phase 2 of super nasty Poziotinib (got rid of my nodes in only 8 days), and now I am on Herceptin and Xeloda...NED now for over 2 1/2 years.
So I am an 18 3/4 year survivor of Stage 4 MBC de novo. And yes, my onc told me that we will treat this as a chronic disease and I will be on chemo forever.
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Denny-Wow you have survived a lot of medicines and changes to your treatment plan. 18 yrs. is statistically a dream when one reads the survival statistics showed for women with metastatic breast cancer. Very glad and happy for you!!
When I reviewed your list of medicines - I could not help but wonder how you dealt with all the different side effects over the years. You must have felt somewhat bad or learned how to deal with the medication to survive the day plus the night.
The two medications the docs want me to take I know nothing about but plan to do a lot of research before I meet with him on the 5th of Oct if only To at least try to understand how they work and why these medication were picked for me.
I also will be asking about Foundation One. I think my doc, surgeon, tested the tumor when they removed the original met measuring 2 cm. A year and a half ago.
Thank you for all your time and information.
Annamaria
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AMP- thanks.
My Foundation One testing was because Kadcyla had quit working on my chest nodes after 4 years. I have known for years that the cancer can outwit the chemos and change properties. This is such valuable information because it explains why chemos suddenly quit working.
When/if I have another recurrence, they will try to do a biopsy, if they can reach the site...to see if it is Her2+++ or Her2- Somatic.
Please let us know what kinds of chemo you might go on, since some of us have been on so many of them. And you can also look for a thread on this site exclusively for that chemo.
None of my chemos left me unable to live a somewhat normal life, except for the Poziotinib that got rid of my chest nodes in 8 days. It left me with blisters all over my scalp, hair loss, blisters from the nose down to my chin. Severe thrush. My nurse daughter called in palliative care to get my bloodwork since I couldn't leave my house. It sure did a number on my bloodwork, and took awhile to recover enough to go on Xeloda.
BUT, it sure did the job to get rid of m nodes! However, it is still in Phase 2 clinical trials because of the severe side-effects. The other 7 ladies in my area on the trial ended up in the hospital, but it didn't work on their cancer like it did on mine.
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Has anyone used CBD oil on their feet to relieve pain? Last Thursday I had a hard time walking on my feet but after some Tylenol and icing them and elevating them, they got better by night and that was day 2 off of X.
Also I get a nuclear bone scan tomorrow. Is it similar to an MRI machine? I'm a bit claustrophobic, should I request an Ativan?
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Pamela,
My wife Liz has been using a topical CBD cream for pain in her leg and she says it helps. The pain is not Xeloda realated (she stopped Xeloda in June) in terms of HFS but it's pain nonthelsess.
Grant
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Thanks Grant, my friend is a podiatrist and asked if I've used any. My husband used and icy/hot CBD oil on his shoulder last week and it helped w/ pain and asked if I wanted to try it but I don't like the icy/hot feel. I'd be willing to use a normal formula. I'll let you guys know.
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Pam, Nuclear bone scan is alot better than MRI. For on thing all that noise is gone. The worse part for me, is you get the injection and then have to find something to do with yourself for three hours while the tracer moves through your system. It doesn't feel\ clasturphobbic (sp) at all.
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Hello Denny - I will,on Oct 5, be talking with the doc. My team has recommended Piqray and Fulvestrant.
Hope to find a thread on here and learn of the difference between I branch and Piqray.I will let you know what the doc say to my questions. You have been so helpful for me.
My daughter is also a RN🐎
Annamaria
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Thanks Snooky. The good news is that they said I can leave the hospital after the injection & I live 5 min from the hospital. So I can at least be comfortable and productive at home in between.
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Annamaria-good luck!
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Annamaria, my MO intends to put me on Piqray + Fulvestrant if Xeloda fails. From what I understand, Piqray is a targeted therapy, not chemo, and is targeted to the PIK3 mutation. My liver biopsy was sent for Foundation 1 testing and came back positive for PIK3. I think you said your MO sent your specimen for F1 testing, so you must be postive for PIK3, too. I haven't looked yet to see if there is a thread for this treatment, but wish you luck on it and hope you'll report how you're doing on it.
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My bone scan results from yesterday came back with areas suspicious for metastatic bone cancer. I am so deflated. I just digested the fact I have liver mets, I was NOT expecting this. I start round 3 (7/7) today. I see my MO next week and we'll discuss the results and she want to add an injection called Denosumab. Anyone else have this injection?
The past 2 days I've felt the best I have in months. This news has punched me in the stomach, I'm just not sure what it means for me.
Who else is bone AND liver mets? I could use some encouragement!
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Pamela,
Don't get discouraged. There are so many encouraging stories on this forum/thread. I pray everyday for healing.
Liz has mets in her liver, lungs, head and bones. She gets Zometa every 3 months which is similar to Denosumab. Liz's side effects from the Zometa are minimal.
Grant.
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Pamela, I have been on denosumab (Xgeva) monthly for the past two years+, and I've had no problems with it. There are lots of folks in your shoes who are doing well. Try not to be discouraged!
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Pamela, I had liver and bone mets dxd in May 2016. I am currently on Xeloda with no met activity noted on my last scan so it can happen. I am also on Zometa every three months with minimal SEs. Hang in there!
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Pamela...Sorry. But you can beat this!
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I know this means I have to fight harder but I can't believe I've been walk ing around with this for what they think has been 4 years. maybe it's the unknown of where I fall on the spectrum of "how bad is it". With my BC four years ago, all the medical staff was saying how lucky I was to catch it early. I don't feel so lucky this time since I have no sense of how late of detection it is. Your stories give me such hope. I know I'm a fighter, it just came out of left field--not how I wanted to start my day.
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Any vomiting a lot, like at least once per day?
It’s my 3rd week of the Herceptin, Xeloda, Tukysa combo, I know it’s not the Herceptin but since both X and T are new to me, I’m not sure which is causing it, maybe it’s both.
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illimae, I am taking Xeloda and clodronate (pill form). I do occasionally feel nauseous but have not yet vomited So maybe it’s one of the other drugs
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illimae, I am taking xeloda on its own, I was given anti emetics by my cancer team, as sickness is a known side effect. luckily, I don't have to use them as my nausea is usually at night just before bedtime. I have noticed it is worst if I have not eaten much. I was on Ibrance for a couple of years and it was recommended to have a meal of at least 400 calories when you take the drug. I hope this helps and you feel better soon.
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Illimae, I've been on Xeloda for 23 mo and have never had any nausea. Hoping you sort this out quickly.
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Thank for the input, I appreciate it. Unfortunately, I can’t eat much as I’m recovering from nerve damage during brain surgery that left me starving for the last 7 months due to a paralyzed vocal cord. I have been eating solid food for almost 2 months but very small meals is all I can do.
Last CT was stable with a single bone met, so I’m looking at other causes for this issue.
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Mae, so sorry your having vomiting. I had slight nausea in the beginning and did vomit once, I think in my 2nd cycle. I suspect it is the Xeloda especially since you're not able to eat much at a time. Hope this goes better for you going forward.
Pamela, I was dx with bone mets only in June 2015, then liver mets in Dec. 2019. I also take Denosumab (Xgeva) shots quarterly. I only had SEs with it once when a substitute nurse injected too quickly and I had nausea for seveal hours. Ask for a slow injection. So far, my bone mets are inactive, now if we can just get my liver mets under control. Hang in there. Hugs.
Now me, well yesterday was the end of my Xeloda run having finished my 4th cycle. CT scan on Monday shows liver mets stable, yet small lung nodules slightly growing, and suspicious for mets. I have the PIK3 mutation, so MO is switching to Piqray + Faslodex as soon as insurance approves. Ugh, up and down on the rollercoaster ride I go! This will be 3rd tx change since December dx. Wish me luck as I'm a bit nervous about Piqray SEs. I'll take what comes though if it will kick the BC back!
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Bliss, sorry about the lung mets. I was hoping we could keep our journey through Xeloda together since we are at the same exact cycle. Hope Piqray works for you and takes care of everything else.
Illimae, I rarely vomit, ever, but I do have occasional nausea. I take Zofran or Compazine for that if it gets bad enough. I haven't figured out which one is better yet.
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IntoLight, thanks. I was hoping the same especially since you had such good luck on Xeloda with your liver mets, but was not to be, and so it goes. I hope you have continued success.
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Does anyone on this thread know how long it takes for Xeloda to work? My TMs are still going up slightly every 3 weeks, I have only been on 3 weeks on and off 3 weeks? This is driving me crazy as I do not have a doctor that will explain the markers. They did go up on Ibrance and that is why I was scanned in August with a small progression so I was switched to Xeloda. I am so hoping this works as I have hardly any side effects yet.
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Imagine, it is different for everyone. I am confused by your post though...are you on 3 weeks on and 1 off for 3 cycles? Or 3 weeks on and 3 weeks off which is weird? Some on this thread have good results for over a year but I don't know how quickly. I have good results after 3 cycles, but my MO said this was faster than most. Give it time and don't panic over TMs as they are unreliable for some. They are not reliable for me.
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Into light
They have always been reliable for me, I started on Xeloda on August 28th 7 days on and then 7 days off. Is that a cycle? if it is I have taken 3 cycles. Just finished 3rd round of 7 days on last Thursday
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