All about Xeloda
Comments
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Imagine, when is your next scan scheduled? If your TMs are reliable, are you on a scan schedule or only when it looks warranted. My insurance scans every 3 months. Only twice on Ibrance did I scan at 6 months in the four years I was on it.
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Mae, when I started Xeloda at a high dose, I was very nauseous. I took Zofran 30 minutes prior to Xeloda. It helped a lot. I think I had cracker with peanut butter with Zofran. I did eat a little more (yogurt) with Xeloda. It really helped. With dose reduction, no longer nauseated.
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Intolight,
Not until end of November 3 months from last scans.
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Illimae, it sounds like you have really been through the mill and I'm so sorry to hear it.
I just went off Xeloda in late August but used to drink a vanilla Orgain in the morning before taking my Xeloda. If you can do that it might take care of your nausea. I hope that you get some relief, my dear.
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Imagine, I'm on the 7/7 cycle too. My markers were 400 at baseline, in 800's after 1 round of X, 1000 after 2nd round. My MO said it's normal to go up in first few rounds because of all the activity going on and there are some by products given off at first which skews the numbers. I see her again next Wed, which will be the end of my 3rd round) for another blood draw and she's hoping it at least plateaued and should be going back down soon.
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Mae, I never felt I would vomit but my sense of smell seemed to heighten and I felt like somethings I smelled made my stomach sour. If I took an anti nausea med, I felt fine the rest of the day. I could count on 1 hand how many times that was. I agree that keeping your stomach full helps. Like you, I can eat very little. I lost 12 lbs in 6 weeks (July- mid Aug) thinking it was acid reflux but found that because my liver is so enlarged and pressing a bit on my stomach and not being able to eat much for those 6 weeks, my stomach has "shrunk" so I eat small portions every 2-3 hours. After I eat what would be considered under a regular portion size, I feel incredibly full and once it's digested I feel like I'm absolutely starving. But I'm happy I got my appetite back. Still hard to gain weight though since I lost my taste (flavors) 4 years ago from chemo & these pills the past week have made me lose the little bit of differentiation I could detect from different foods.
Anyone else have taste changes?
Bliss-- I am so sorry about the lung nodules. Praying for you! Is that why they are taking you off X?
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Hi Pamela23, most people I know have put on weight since covid19 [ comfort eating ?] but I too lost nearly 12 lbs in July /august: caused by some palliative radiotherapy and a pleural effusion at the same time. I am quite pleased, as I was overweight, but I am struggling to eat enough to not lose any more. I feel very full quickly and so I am not eating 'normal' sized potions any more .I have just finished my 3rd course of madame X and my sense of smell and taste have been ultra sensitive. I had some Cajun chicken yesterday, which I used to love, but I ended up in tears as my mouth was burning. Thank goodness for yogurt and ice cream. My doctors did give me a meal substitute, called 'Ensure plus' which has 300 calories, so I drank that instead last night, when I took my last X tablets before my week off. Hope all goes well with your next blood tests.
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Thanks all, I’ll try the suggestions. I am at the highest dose to start with, so it makes sense.
Pamela, no loss of taste, in fact I’m tasting everything for the first time since January, food is marvelous!
Kattysmith, I have been through the wringer this year and struggled more than anytime before or since MBC but I am here, feeling good most days and looking forward. We do what we can 🙂
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Pamela23, yes the lung nodules are part of the story for taking me off X, but looking at my CT results again, I see there is an enlarged medialistinal (sp?) node and a couple liver lesions slightly enlarged which is more concerning to MO I think after 4 cycles of X.
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Hi everyone! I'm new to this group. I'm coming over from the Ibrance forum since its not working anymore after 3 1/2 years. I'll be starting Xeloda next week. I have a primary tumor that's gotten bigger along with some lymph nodes and slightly increasing TMs. I was diagnosed in Jan '17 with de nova mets, with some lung pleura. My scans have been good since then and my MO pushed to get my surgery for the primary tumor but two different surgeons said no since I was stage 4. Said it wouldn't affect overall survival. My MO said she would press for surgery if it wasn't for new lymoh node in neck. The primary tumor has grown to the skins surface so she is putting me on Xeloda so I would love to hear some positive stories from you all. I have to wait to get it from the specialty pharmacy and then come in for education on taking it. It was such a let down to have to discontinue Ibrance and go on to oral chemo but I knew it would be inevitable. Hope I can learn from you how to deal with side effects I may have and anything else that may help.
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Hi elenas. Welcome to the "Madame X" group!
You wanted a positive story so here goes: I was on Ibrance for four years until I had progression resulting with ten tumors in the liver and three new bone mets. My first scan after starting Xeloda after 3 cycles put me into NEAD. My MO was surprised at the quick response so it can happen. I remain on X to keep everything "dormant" and am tolerating it fairly well. Praying for good results for you too.
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- IntoLight: Thanks for the encouraging experience.Glad to hear of your results on Xeloda and hope you continue to tolerate it. I'll definitely be checking in here with you all.
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Hi Elenas, I was on Ibrance/Letrozole 39 months. Then Mets returned to liver. Have been on Xeloda 7 months and doing fine. Last MRI scan showed stability of liver mets and liver enzymes are now normal. Ca15.3 greatly decreased.
Watch for Hand and Foot Syndrome and please consider contacting your MO if feet/hands become painful, red, blistered. It is better to dose reduce than to keep going off to control symptoms. I am on 2300 mg/day, started at 3300 mg/day. My Feet get mild red now towards end of cycle, but clears up when off drug. I use the 7 day on, 7 off cycle. At the beginning it was very painful and debilitating, but dose reduction fixed that.
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Hi Elena! Welcome! I have been on X for over 2 1/2 years and so far it is keeping me in NED. My August scan was denied, so I hope to get one in Nov.
I am an 18 3/4 year survivor of Stage 4 NBC de novo. I am also on Hercpetin IV.
I use Aquaphor at night on hands and feet with silicone socks and food service gloves. Aquaphor on my feet through the day and that or Udderly Smooth on my hands during the day.
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Hi Denny123: Thanks for the welcome. I feel better already. I'm also on Herceptin for a separate cancer in my left breast discovered last year. The primary tumor in my right breast is HR+PR+HER-., so I'm a complicated case. I'm glad I feel as well as I do. That's why I'm anxious about how I'll do on Xeloda.
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Good morning, Elena! You and I overlapped on the Ibrance string for a while: I was on Ibrance from 2/17 through 11/18 (21 mo or so). I developed hypercalcemia, and my MO moved me to Xeloda. I'll PM you with the Xeloda suggestions I copied and pasted from reading the "X" string when I first started. You're getting good advice above. I have not personally found Xeloda to be harder for me than Ibrance, and I was very comfortable on that. Hand and foot, yes, but manageable as long as you pay attention and don't allow it to get ahead of you. I have been NEAD on Xeloda (except for this recently avid lymph node) for 21 months now. No changes to treatment planned. SBRT radiation to that pesky node. Good luck, my dear!
Sadie, hoping for the best for you in your treatment!
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Hello ladies! I hope you don't mind if I join you on behalf of my wife. I see some familiar faces from the Ibrance or the Piqray threads. It looks like my wife's cancer may be hormone resistant as neither of those treatments were successful and her lung mets have traveled to her liver. She has a bone scan scheduled for next week. Fingers crossed.
I've gone through this thread and learned about the importance of lotions such as O'Keefe's Working Hands and/or Aquaphor. We're encouraged about the SEs of Xeloda (especially compared to Ibrance or Piqray). We're also encouraged about the success some of you have had with Xeloda. It's been frustrating that hormone treatment didn't work for my wife, but hopefully Plan C (Xeloda) will. She's on 1500mg and on a 7/7 schedule.
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BLMike and wife! Welcome!
Yes..there are positive stories here.
For me: Aquaphor at night with socks to protect sheets. If feet get a little red, I switch to gel toe socks at night. I use either OKeefes or Udderly 20 urea cream during day. Keep toe and finger tips moisturized to avoid skin cracks.
Drink lots of water..I am serious about that. I also take Pepcid AC when needed usually several hours before or after Xeloda. My MO recommended that med, not the prescription. I think she told me the RX one interfered with Xeloda. I will confirm that.
Sometimes I wear exam gloves at night with Aquaphor. Use gloves for cleaning and dishwashing. Pamper feet with ice if starts to burn a little. I walk and slow jog.
It is not bad once you get the right dose figured out. My counts don't get beat up like Ibrance/letrozole. I like this drug better.
I developed FGFR1 amplification mutation..suspect that is why I/L stopped working. Hope she gets F1 or similar and tumor hormone status checked via bx. I also had them check PDL1 and PK3..both negative.
Ask away..several long timers here.
I am now 2300 mg/day, 7on7off. Don't let symptoms get severe..call your MO. Better to dose reduce than to keep going off to recover.
Sandi
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Welcome, new members of the Madame X club. I am just about to start 4 round .1st round at 1500 per day; 2 weeks on, 1 week off, just to see how I coped. The second round upped to 3300 per day ; 2 weeks on, 1 week off. I feel like I am having iv chemo during the 'on' weeks: fatigue, slow physically and mentally, but really perk up on the week off. I have not had any problems with predicted diarrhoea [ the opposite actually] nor hand or foot problems. Try and drink frequently and eat a meal with a good amount of calories when you take the tablets [just like Ibrance] it helps prevent nausea/sickness. Don't let any problems runaway , let your medical team know as soon as you can, they can help you ,so you do not have to stop taking the tablets.
My last blood tests 'looked positive' according to my oncologist, although I will wait for the next scan before I feel confident.
I think this drug is tolerable, I hope we all have a successful run on Madame X.
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BLMike...welcome and how nice of you to help your wife!
I have been on X for over 2 1/2 years and swear by Aquaphor at night with silicone socks and food service gloves. (I prefer the food service gloves since they are looser than the exam gloves, so my hands don't sweat as much). And I use Aquaphor on my feet through the day and also on my hands, or Udderly Smooth.
1,500 mg a day should be quite tolerable for her.
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Thanks so much for the warm welcomes. We've ordered some Udderly cream and it sounds like we'd better pick up some silicone socks and food service gloves also. Thanks for the suggestions.
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Hi Mike
I too came from the Ibrance group (4 years) and started Xeloda when it failed in April.(currently on Cycle 7) I started 2 wks on 1 wk off (I'm amazed at all the different schedules here) 3000mg a day (6 pills) and had it reduced for Cylce 6, with an extra week off because I could barely walk. I was foolish, should have contacted MO sooner and had dose reduced- I was acting "tough". I am FINE with lower dose now, 2500 mg daily (5 pills).
Be sure if you order Udderly smooth Cream it is the Udderly Smooth Extra Care 20 with Ucerin (markings in Pink). I ordered the first one, Red marked container, and gave it away. The more expensive Extra Care has Ucerin in it, a VERY helpful ingredient, not as greasy and effective for me during the day. I found other products with Ucerin- Atrac-tain,(from Amazon) and Pedinol (Kaiser). I have them strategically placed around the house and yes, Aquafor at night (more greasy but cooling and less smelly than Bag Balm). Best footwear when I have H&F is Dear foam slippers (ordered online).
I'm an 18+ year survivor for MBC. Only Liver mets until this year when MBC also went to the outside of my small intestine, needed surgical removal (unusual place-does anyone know anyone who has had it there?) and then it came back in the liver. After being only on Aromasin briefly I immediately started Xeloda (would have done sooner but Covid kept me from the labs at first) Magically After 3 cycles of Xeloda the areas were "resolved" on the PET Scan!! Unfortunately 2 new lymph nodes showed involvement. It's like Wacka Mole! Scans have started going up after going down, but only half as much this time. PET scan in November.
Genetic Testing- I noticed people talking about Foundation One. I checked and I had a CancerNext panel which only covered 34 Genes. Is Foundation One test better and more comprehensive? I will contact the person who did the recent testing and ask why they chose the one they did.
Good Luck All- Keep Positive, Stay as healthy as you can and Eat Chocolate as often as you like.
Nina
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Mike, welcome to you and your wife! I agree with what others are suggesting. I'm going to PM you with my Xeloda comments list, which I cut and pasted from the string when I started Xeloda 21 mo ago. It has worked very well for me.
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NinaCa...I think you meant Udderly Smooth extracare20 with Urea, not Ucerin?
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Hi Nina! I am also 18+ at Stage 4. Dec 12 will be the start of my 19th year.
I had Foundation One testing when Kadcyla stopped working on my 2 chest node mets. The testing showed that my formerly Her2+++ had changed to Her2- Somatic.
So my next chemo was to be Lynparza. Meanwhile I had a clinical trial of Poziotinib which cleared out my nodes in 8 days.
Now I am on Xeloda and Herceptin..going on 2 1/2 years now. NED so far.
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Yes SandiBeach57- You are correct!! !The three creams I have say Urea on the ingredient list. I got the word Ureacin from my Pedinol Cream which turns out to be a trademark name. It's the Urea that differentiates them from all other moisturizing creams. Thanks for the correction so I won't make that mistake again.
I forgot to mention I also use Toe Caps on individual toes as needed (I also call them Toe Condoms). In addition there are toe wraps that can be cut to size. My medical supplies are multiplying overnight! NINA 🎶
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It’s only my 2nd cycle but the nausea and vomiting was too much and we’ve reduced my dose from 4,000 to 3,000 mg per day.
From what I’ve read here, it looks like dose reductions are fairly common with X, is that your experience too?
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illimae....yes, dose reductions are common. I am only on 2,000 but was changed from 14/7 to 7/7.
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Yup. Went from 3300mg/day to 2300mg/day. Also now 7 on7off. FEEL SO MUCH BETTER!!
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Illimae--it was my hand/foot that got bad last 2 rounds by day 4-5 (2nd & 3rd round of 7/7) that got my MO to go from 3000 to 2000 for next round. Looking forward to not having to be off my feet for a few days every other week!!
Imagine--last week I got my blood draw after 3rd round & my Cancer Markers are finally heading back down (baseline 400s shot to 1000s, now 800s) so hopefully you'll see them start to drop soon. My AST also went from 195 on 8/1 to 67, so very promising.
I am getting stronger everyday after being sick all summer with extreme shortness of breath secondary to what we now know was MBC. I'm off my oxygen I had for a month and took my first long walk yesterday, something I couldn't do for months. I did received bad news that my bone scan came back positive for mets. I've wrapped my head around it and continue to fight!!
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