All about Xeloda
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My scans were stable at 6 months on Xeloda, but scans today at 9 months show progression in the liver. I see my MO on Monday and expect a treatment change. I've tolerated Xeloda pretty well since switching to 7 on/ 7 off. Have appreciated everyone's tips on handling side effects. Thankfully I've had a good summer so far and able to work in my yard and garden. Sad about the progression and expect next treatment could be IV.
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So sorry about the progression Wenniwi - I wonder if you can give Elacestrant a try? since you have ESR1 mutation- maybe a liquid biopsy to look for other mutations since it has been a year. I have a few new ones besides the CCND1- which were "actionable" with Lynparza- not sure if outside of a study however.
Let us know
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weninwi—so sorry about the progression. Good luck and please keep us posted!
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I read back a ways and it looks like mood disruption is A Thing on Xeloda which would track with my experience. I could barely stop weeping the last four days of the last cycle and really lost my marbles on the very last day after my last dose (morning) . I was working a solid Thousand Yard Stare over the weekend and wondering if I was going insane. And yet today I woke up and feel like a 'normal' person almost with no weepiness or rage. Im only having very very minimal issues with HFS (finger tips feel a bit rough and thats about it) but mood, bone/body pain and fatigue seem to be my biggies.
Does the mood thing pass or should I ask for some valium? I dont know if I could do another cycle like the one I just came through, mentally.
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Three cycles of xeloda, and each time my wife's tumor markers sent up 18-25%. For the fourth cycle, we added in lugols iodine and an aromatase inhibitor, and tumor markers were absolutely stable. I'm afraid it might be too little too late, because if she show progression on her scans, they will ask us to change drugs.
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husband11,
What benefit does Logols Iodine provide? Hope your wife's scans are stable.
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There have been two small clinical trials that showed that 5 mg iodine per day increased response to chemotherapy, and doubled the rate of progression free survival at 5 years. There's a ton of research on iodine and breast cancer, most of it just in vitro, or mice grafts, but a few human trials with breast cancer patients.
Also, some work that shows iodine increases estrogen receptor signalling.
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sondraf Yikes sorry to hear about the mood swings, that's a bummer! I can't really say that I've ever had that, mainly deal with the HFS crap. Just restarted X after 6 week break for SBRT and I'm now applying Voltaren gel twice a day for the HFS…we'll see. Hoping your next round isn't as harsh with the mood swings.
husband Sending positive vibes for your wife's next scan. Good news on the markers and fingers crossed it reflects on her scans.
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Cookie - did they say they had to pause drugs for rads or was it just convenient timing with the HFS healing? I suspect I have some in my future based on this hip, but to the usual pelvis spot (may it finally FINALLY die) and onc seemed to say (or I understood) that the benefit of X was to not have to hold for rads treatment like you would with Ibrance etc.
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sondraf Gosh that hip/pelvis has been a bugger for you for quite some time. Yes a quick death to the spot would be wonderful!
Mo said that SBRT combined with Xeloda may enhance side effects. She said because I have a low burden of disease she was comfortable to hold for 2 weeks prior, during and 2 weeks post SBRT. Also felt we could give my HFS a break and then start the Voltaren to see if that will help.
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If I understand SBRT correctly, they are spot treating with radiation, areas of cancer spread to the bone? My wife's onc said they don't do that in Canada. She said that if the systemic treatment didn't work everywhere, that we would have to switch systemic treatments.
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Cookie - I think there are a few things going on that just came together at the same point in time. I know I wrenched it doing breaststroke last November, which started to impact the hip flexors, meanwhile the pelvic spot was growing slowly and (i think) impacted my gluteal nerve which means the hip flexors take even more strain in the walking cycle. But that is my current guess (Ive looked a lot at hip diagrams for months) based on what info I have access to, the PT sessions, and the oncologist comments. We dont really have orthopedic oncologists here (or at least not that Im aware of) so not sure what to do really. A giant cortisone shot! First step is chat tomorrow with latest scans and then we see. Thankfully I no longer have the groin pain.
Husband - they will do targeted SBRT to troublesome spots or to attempt to keep on a therapy if everywhere else is clean.
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sondraf Agree at least the groin pain is gone. Well you have certainly done great research which is wonderful. We definitely have to advocate for ourselves. Wishing you a positive visit with your MO tomorrow.
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Well that was a mixed visit for sure but I knew it was going to be. Some lesions are better ans some are minimally worse but they are comparing to my late April scan which was two months before I started this stuff. We DO have orthopedic oncologists and I've been referred to one for his expert read on my scan and if surgery makes sense over rads (although they are leaning towards rads).
Staying on xeloda for now but will scan in 9 weeks as tumor markers are going down a bit, and will go back to monthly xgeva from 3 monthly, but swap to 7/7 from 14/7, stay at same dosage. They are gonna pop some morphine in my party bag this month too :)
I realized there was a better journey to the hospital using a different tube line that has escalators so it was easier today and should be ok going home, or at least less stressful.
At any rate, there is a plan and next few weeks will get this taken care of and then onward and upward.
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sondraf Ok glad to hear you do have ortho onc, that's a positive point. Sounds like your MO is pretty thorough, lol "party bag"..love that. Seems like your heading in the right direction with your plan. Also seems like Xeloda is starting to work for you with the markers going down, fingers crossed. Hope the ortho agrees that rads is a good option rather than surgery.
Great that the journey there was much easier this time!
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hi everyone,
newish here, just wondering if anyone has experience of Xeloda working in all areas of metastasis except one? First scans after 4 months on X showed great improvement in all organs and bones except for this one spot in bone, which has gotten worse. Does this mean the treatment isn’t effective? Does it have to show improvement in all spots? Scared about being taken off something so soon.0 -
No progression shown on my wife's scans, so we are continuing with xeloda. Thank God.
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very good news husband11, keep going! Thank you for keeping us updated about your wife’s condition.
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@aymelle Im having this issue right now and they are rescanning me in early October after two more cycles to determine what exactly is going on. Im bone only and X resolved some of them and yet it didn't seem to touch the main issue in my hip. However, I believe you can get tumor flare on Xeloda where it looks like progression but isnt, hence they are having me scan again pretty early and try a few more cycles. Frankly I think Ill be moving on from this one rather quickly although it will come down to the radiation onc and where/what to radiate if X is holding everything else stable or if there is enough to just swap out the treatment entirely.
Long story short, yes, they could radiate one spot to extend a systemic treatment if everything else is being held well.
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@husband11 Wonderful news, thanks for sharing.
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Fantastic news Husband11
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FYI: I'm now off Xeloda. Was on 9 months. It was my first chemo. While on treatment I developed a color change (to dark gray) in two of my toe nails. Had a Derm appt yesterday. Provisional diagnosis: melanonychia…..due to chemotherapy including Xeloda. Expectation is that it will resolve as the nails grow out, but I was told to return in 2 months to follow-up.
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Dears,
Finally gathered myself to write here, after reading and silently supporting all of you for years.
I’m 43 years old and since Jan’23 I”m battling my 2nd diagnosis, this time metastasis to the liver and various lymph nodes. Same hormonal cancer came back just as I was preparing to celebrate 5 years cancer free.
1st line of treatment Ribociclib didn’t work, 2nd line of treatment Alpelisib/Piqray worked but only for a month or so and started 3rd line 2 weeks ago, Xeloda.
I have a supraclavicular lymph node on the ride side which was slowly growing under Ribociclib, went to almost normal under Alpelisib and now it’s furiously back, in 2 weeks of Xeloda it grew so much I find it unbearable and think I’ll die from this. They scheduled me for radiotherapy intake next week, in the meantime I find myself desperate because of fear, anxiety which are directly triggered by how my neck and shoulder feel and look like, the pressure is very big, I feel my skin will burst open.
Do you have any advice for me, did anyone go thru something similar or any suggestions on what to do?
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kariz - don't fret, the radiotherapy will take care of that pretty quick! You should start to feel some relief by the end of the (probably 5) sessions, but radiotherapy will continue to work on a spot for two months. Spot radiation like that has worked wonders for me and others for managing pain and keeping us on regimens that are otherwise working. Unfortunately its really uncomfortable and stressful in the lead up to the radiation appointments so I understand your feelings. You are almost there though!
Wenn - I have a big toe that just turned grey the other day and figured it was from chemo. This toenail is a disaster anyway and I was growing out some bad nail bits from nail varnish. Can you update if it peels off or anything?
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sondraf,
Yes, I'll post an update after I see the Dermatologist again in 2 months. His PA was reassuring and said it does not look like melanoma.
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Yay husband! So glad to hear your wife is responding. I started xeloda at the same time as she did and while my scans have been somewhat stable, tumer markers have been going up and my primary onc is on a leave of absence! Hopefully these next labs show the markers at least stable, if no we will rescan, do a liquid biopsy and make plans for the next line.
I do have a bit of hand and foot, the Diclofenac helped but what really helped was vitamin b6. In the first few rounds I all but eliminated folic acid and used the cream but still had a bit of SE. When I added vB6 I sill have a bit of sensitivity but no blisters and I can even hike and walk as much as I want! (In between naps!) ;)
Weniwi - very sorry to hear about your progression. Wondering if they ever add a targeted therapy to the Elacestrant? Seems like it would make sense even though the trials combining a targeted therapy with Elacestrant have not yet published anything that I know of.
I did SBRT 2ce while on Ibrance and it gave me another year and a half!!! Woot!
Kriz - so sorry you find yourself here but I have found everyone here gets it and is so supportive both emotionally and with deep information on options to review with your oncologist. For emotional support, I have a very strong Qigong practice. It fills me with light, happy, bright energy, calms me, helps me to sleep and learn to relax. It is part of the traditional Chinese medicine system. The style I like is called Ren Xue. https://learnrenxue.org/about/meet-yuan-tze/
Do let me know if you have any questions...I have also been teaching it for a number of years.
Hope Xeloda works well for you and that you get relief from that angry met!
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Hi everybody
I'm just writing so many posts because I'm so scared...I wasn't here since 2018, my first diagnosis, and I wish I didn't need to be here for this. But I like all the support I'm receiving. After long discussions with different oncologists and medicine a availability, they opted for capecitabine. I wanted opinion from other people that was on it. Were you ok with it? Anybody lasted long time on it? My first line didn't last very long...but at least fortunately I had a super strong response, that brought me back to normal life. I hope capecitabine is going to work well for me.
Any advices?
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amel,
I got 6 months with stability; progression by 9 months. But my Mayo oncologist told me she has one patient who has been on Capecitabine for 3 years. My main side effect was the hand/foot syndrome. Finger numbness is real. Foot burning, redness, peeling, and numbness is real, but can be managed. Just follow all the many tips offered here. Daily or twice daily lotion for feet (maybe with 10% or 20% urea); reduce folate in your diet (i.e. reduce dark leafy greens, avocado, etc); switch to extra cushioned shoes (I settled on Sketchers). The main adjustment that reduced my hand/foot symptoms was switching the schedule from 14 days on/7 days off to 7 on/7 off. I thought Capecitabine side effects were manageable, and the oral route is a plus. Since Capecitabine is a chemo, it's important to focus on maintaining or increasing your endurance and strength with daily activity and exercise. I have my usual daily exercise routine, but started PT with visits every 2-3 weeks specifically for this purpose and it helped. My hand/foot side effects have now resolved since being off about one month. The best to you.
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