All about Xeloda
Comments
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Thanks, Denny!
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Hello,
I am cross posting with the Ibrance thread to see if anyone has similar F1 report.
After progressing on I/L, I had a liver biopsy and F1 done.
I am still ER+ and HER2-. I am negative for PIK3, PDL1, ESR1, BRCA1/2, ERBB2. No reportable alterations.
MS-Stable, Tumor Mut Burden 3 (ATM Inversion exon 55, FGFR1 amp, GATA 3 plus few nonactionable others.) Recommended clinical trials: PARP inhibitors...???what??
ATM therapies with clinical benefit: Olaparib, Talazoparib, none for FGFR1.
So why did I progress on Letrozole (and Ibrance)? What is driving the cancer now? I am confused.
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I have been dose reduced for the second time due to red burning feet... now 2300mg/day. Hope it kills liver mets.
I understand JoynerL what you are feeling..fearing dose reduction is less effective on fast growing cancer cells.
Sigh.
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Sandi-Parps are pretty good. My friend was on them about 8 years ago.
I almost had Olaparib (lynparza)...in fact they sent me the $14,000 worth of pills (I only had to pay $4 for them, though). But I never took them since my clinical trial of Poziotinib got rid of my chest node.
The pills have expired, but I still have them.
I don't worry about what drives my CA. I just let it up to my onc to figure out what is next.
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LOL-now our are newspaper has a big report on "Covid Toe". Seems that it can appear as red and swollen areas on the toes.
Umm, I have been blaming my X for my red toes.
Insanity at its best.
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And I just got a update on my awful fingers! I sent those photos to my brilliant dermatologist, and she just called to say that it is a condition called parenychia. I looked it up, and there were my poor fingers!
She said that I liked brought it on by my aggressive cuticle pushing and that it was exacerbated by the Xeloda HNF. In any case, she is calling in a steroid cream and said that the condition should straighten itself out in 10-14 days. She also noted that wearing the nitrile gloves 24/7 causes moisture to be trapped around my nails and that moisture also exacerbates the problem. We agreed that I would cut off the tips of the fingers on the gloves and contnue to wear them. A plan!
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Joyner- I was just writing to you about that. The cuticle provides a seal to prevent infection and when you tatter that seal you can let infection in - esp your thumb. I am glad you let your derm know.
I am wondering what your MO knows about the lower dose and efficacy- once it works I am wondering If the actual dose matters? I felt very comfortable going to 2000 since so many people seemed good with that- not sure about lower.
Wandering- yes I saw that article which made me worried about it- I was taking a supplement for my hemolytic anemia and my MO didn’t think the interaction was huge - but we stopped the supplement- still getting it from food.
I have fading fingerprints and numb tips- but is better this cycle - white cotton gloves?
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I think I will be more calm about dose reduction (now 2300mg/day) once I get my scan after cycle 3.
My MO said that taking X at higher dose with my reddened burning feet could cause damage to feet and could weeks to heal. She did not want the possibility of me not being on tx that long.
Denny, why did your MO recommend a PARP for you? Did you have the mutations or was it from your HER2+ status? When I meet with my MO next week, I am interested in her interp on my F1.
Naesha..did you ever get answers on your hypermetabolic lymphs shown on scan?
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Sandi, I think your F1 report suggested PARP inhibitors because of the ATM inversion, ATM being related to BRCA1. Whether the mutation is germline (BRCA positive person) or somatic (just a mutation in the cancer) PARP inhibitors may work.
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Sandi-When my Kadcyla quit working, my onc ordered Foundation One testing that showed the my nodes turned from her2+++ to Her2- Somatic.
That is why he ordered Olaparib, which I never did take.
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Denny, wow..interesting to have that change in your HER2 status. Maybe someday, my new FGFR amplification will magically disappear..just dreaming.
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Sandi-that can happen often. I lost many Stage 4 friends in the past and now I wonder if that testing had been available back then, maybe they could have changed chemos to prolong their lives.
Now if/when I have another recurrence, a biopsy will be necessary to see what properties it has.
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I had a Foundation One test 17 mo ago when I had progression on Ibrance/faslodex, after 21 mo of success. My genetic status from the test indicated that I might benefit from Herceptin, even though I'm HER2 negative. My onc pointed that out to me as something for us to explore when the time is right (or wrong, as the case may be!!). You all are more sophisticated about this stuff than I. Girls who were "Ibrance dancers", I miss Curious!! She was such a great resource on that string.
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Joyner-I am on Herceptin with Xeloda. I was Her2+++, now possibly Her2-. So I guess Herceptin is still helping....for whatever the heck I am now.
I was on a Zoom meeting tonight with the Pittsburgh PA. "Our Clubhouse" (based on Gilda Radner's clubhouse). 7 of us MBC gals. Sobbering. I am the longest MBC survivor, but one gal is only 35 with a brain tumor that she just had surgery on. And she had a baby right before the surgery.
I really feel blessed.
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Looks like I am headed to 7 day on/ 7 day off schedule.
Cannot seem to get to 14 days without grade 2 feet probs.
1st cycle: 3300 mg/day. 13 days on, but due to red burning feet, stayed off 12 days to heal
2nd cycle: 5 days on, had to go off 2 days to heal feet, dose reduced 2800 mg/day. Then 5 days on, off again 1 day to heal. Dose reduced again to 2300mg/day. On 3 days..damn, off again. Now with red fingerpads, red thumbs, burning red feet and non itchy rash on arms, shoulders, upper back and legs. Some red spots look worrisome. Took Benadryl..did not help. So now off 8 days before starting cycle 3. Now I am freaking out those raised red lesions are skin mets. Or does Xeloda cause rash? My RN said rashes were not common on this drug.
Sucks..wonder if my liver mets are dying. Feeling defeated.
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SandiBeach57- I hope that the new regimen works for you? What dose will you be taking for your 7 on, 7 off regimen?
I decreased my dose to 2000 and stopped the folic acid supplement I had been taking and have been much better this cycle. some red feet and warmth, no pain or hobbling.
I have a theory about some of the rashes- don't know if it is correct though. 5FU is a metabolite of Xeloda and is used topically to treat pre-cancer sun damaged areas- it makes the areas turn red and ugly and eventually they are cured. I have noticed lots of redness on my nose and on my right hand and maybe crusty areas on the scalp where I had my part for many hatless years. They are fading a bit now so maybe they are resolving. This may not be at all what is happening to you.
I hope that your liver mets are shrinking and your feet are much better soon.
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Sandi-good luck and I hope that 7/7 works for you. It is working for me.
Yes to the rash! I am on some Facebook Xeloda groups and constantly see pics of rashes.
I have red patches on my scalp, and the only time that they went away was when I took an X break for 2 weeks. If they get sore or itchy, I use Clobetasol oil on them. They are usually only on my middle part.
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Wow..everyone here has been so helpful. Thank you for the rash input. The RN told me it was rare. Grrr.
It makes sense about the 5 FU, the rash areas are in places of sun damaged skin.
My MO will discuss dose next week. I am on 2300mg/day right now. I am 5'5" and weigh average 125 pounds..not that makes a difference anymore.
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Sandi, I'm now on 2000mg/day 7/7 after starting at 3000 in Jan 2019. At the beginning of this April I developed a rash/red spots on my abdomen and back, and my dermatologist thought it might be shingles. Since I had had a skin breast cancer met just before I started Xeloda, she biopsied. It was not a skin met, and it was not shingles. It was "indeterminate" inflammation. I hadn't thought about its being from the Xeloda, but I supposed that it could have been.
Don't lose heart! Xeloda has kept me stable for 17 months!
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I have been on Zeloda since Aug 31. It's barely holding the cancer at bay. The last couple of months my body's been acting weird: lot of falling episodes (had 10 in one day) Dr said it's Vertigo ???, extreme fatigue sleep 12 hrs nightly and still take two naps a day, decreased appetite, constant runny nose, coughing up a lot of mucus. Hardly any cognitive function, when going to the docs last week I hit three things with the car. And for the life of me I couldn't tell you how it happened. Lazy Lazy Lazy For the last 25 years years I've gardened, Hugh veggie garden , a couple of large flower beds. This year I haven't even been out there.
last week the NP told me to take a week off Zeloda. The Onc called yesterday and said take off till the end of May we'll do scans and see where we stand. I take 2000 a day, has anyone had anything like this? On a good note I've never has gastric issues nor HFS. Absolutely no issues.
Thanks anyone if you have any thoughts, although I don't have a large tumor load I don't like being off meds for so long
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Snooky- sounds worrisome. If not better with your time off Xeloda, perhaps an MRI? There are drugs that help vertigo, perhaps your PCP should be involved to help with that.
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Snooky...I don't have a clue. But I wouldn't worry about taking a few weeks off. I had about a month off when Kadcyla quit helping my chest node mets.
Of course, that made me crazy (er). But then I had a clinical trial that got rid of the nodes in 8 days. But that trial was really toxic to my blood so I had to be off chemo for another month.
Now I have been NED for 28 months.
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Snooky..I have read so much on what side effects to expect on Xoda and those things you mentioned sound worrisome. Are they really Xeloda SEs? Could scans be sooner and will you hsve a brain MRI? Maybe worth another phone call to your MO.
When were your labs last checked? We always assume cancer, but maybe you have something else going on. I agree with Nkb and maybe touch base with your family doctor.
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hello all! I join you here after six months on Verzenio (with Faslodex). I’m currently in my week break after cycle 2 of Xeloda now and wondering if it’s doing anything. After cycle 3 we will scan to see.
I moved to Xeloda after wheezing and squeaking was bothersome. Even though Verzenio was keeping tiny spots in my lungs stable, two areas were growing and blocking my middle lobe in my right lung. It’s been worrisome. After my first Xeloda cycle it seemed to improve but this last week the wheezing has returned. I wonder if my airway completely shut or if it was open during the time that the wheezing stopped. I felt like I could breathe normally for awhile after starting this drug but now it’s back to squeaky sounds. Mostly when reclined but also upon yawning and taking deeper inhales.
I also wanted to chime in to say that I have had red bumps on my arms the last week. And wondered if it was Xeloda or the sunscreen I used. I also experienced vertigo like symptoms recently as well. The fatigue has been pretty intense actually too. I’m 36 and pretty active usually and this second cycle of Xeloda knocked me down. I’m on 1650mg x2 daily. I assume I’ll receive a dose reduction for cycle 3. The H&F stuff has been rough after cycle 2. I could barely walk it was so painful. But it’s getting better in my off-week.
All the best to everyone here. I recognize a few of you from Ibrance boards. Hoping this drug is keeping everyone stable or better!
Ash
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Also wondering... have ++- ladies had luck on Xeloda with lung mets? I tried to look back in the thread but my current dizzy spell make scrolling difficult.
Snooky I wonder if we are experiencing the same thing? Though I haven’t fallen, I have felt like I might at times. Im young and fairlyactive usually. I am so damn fatigued and all I want to do is sleep. Guessing the two cycles of 3300mg daily are catching up.
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Ash. I was very tired on 1st cycle at 3300mg/day..wanted to hibernate all day in bed. I was nauseated, had diarrhea on day 10 and bad HF (feet only). Stopped dsy 13, took a break > 7 days. I did have red small lesions on chest, later arms, upper back and few on legs. Started cycle 2 at 2800mg, no nausea, no diarrhea, not as tired, but feet inflamed at Day 5 and took 2 days off. Restarted at 2300mg and lasted 5 days before feet turned red. So I am now on a 8 day break. Will start 7 days on/7 days off. Hopefully my liver mets are dying..
My red lesion/rash has improved..so feel it is from Xeloda
Keep us posted on your lung mets.
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Welcome, Ashlyn. I'm betting that your MO will reduce your dosage some. Good luck going forward! We're here for you. We may have interacted on the Ibrance string, too.
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I'm new to this thread and actually asking this question for a sibling now on Xeloda--has anyone used MediHoney for hand/foot side effects on Xeloda?? If so did you have good results with that?
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Mysticalcity, this won't be helpful. I ordered some but foolishly didn't realize that it literally has the consistency and stickiness of honey. I couldn't use it because of those properties. Just too hard to deal with. May have worked great.
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Myysticalcity, I used Aquaphor at night with cotton socks, alternating with Natura gel socks. (Amazon). I use OKeefe's foot cream during the day.
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