All about Xeloda
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Woodlands— your Alaska trip sounds amazing. Sorry for the HFS irrations.
I was only on Xeloda for 4 months. Didn’t have any HFS. Whew.
Found out today that I will start IV Doxil soon.
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After 18 months on Xeloda I have moved on to Enhurtu. Thought I would recap my time on this tx as I say good bye to Mdme X.
Prior to starting X my tumor markers were doubling each month to a high in the 1200s and my last scan showed "innumerable low-attenuation lesions" in liver. After 3 months of X my tumor markers were back to normal and liver was clear! I started at 3000mg a day but had terrible GI/ big D issues and reduced dose to 2000mg after that 1st good scan. Well, apparently that dose was too low, though much better tolerated, because my next 3 month scan showed slight progression in bone. Dose adjusted back up to 2500mg which held progression back for another 6 months, then slight progression again and a new wrinkle with mets to left ovary. The last 6 months I was back to 3000mg, easier than the first go round, but QOL definitely suffered with some degree of constant D and fatigue. My feet seemed to get a little worse with each cycle but never so bad that I couldn't walk. By the end of my X days they were peeling badly and big toenails were almost gone. This month's scan again showed slight progression in all bone mets and ovary so decided it was time to move on.
Some odd things I noticed while on this drug was that my hair and fingernails grew like crazy. My hair, which thinned on previous treatments is back to feeling thick again and while my toenails tried to disappear my fingernails are long and strong. Before X I had to keep them short and polished as they were weak and badly split.
So for those just starting Xeloda, dosage seems to be the key with this drug. Stock up on some good foot lotion and slather it on. I used Gold Bond foot cream, it sinks in fast and is not as greasy as some others I tried.
For those already on X, may you have good results with tolerable se's for a good long time.
Best to all~
Jo
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Woodlands-I have been on Xeloda for 4.5+ years. For 3 years I had blisters and constantly infected toenails. Then after eating spinach & avocado salads for over a week, I had really bad infections. I finally figured out that the fact that I was eating foods high in folic acid was the reason. I had read about folic, but my onc didn't know about it.
I had to stop Xeloda for 7 weeks for my feet to heal up. Now that I am eating foods with folic acid and folate in moderate amounts, I haven't had any infections for over 1.5 years. My hands and feet are no longer burgundy or sore. I suggest that you google to find the 15 foots highest in folic and folate and eat those in moderation.
I can't use urea since it made my feet worse. I use Aquaphor at night on hands and feet. Aquaphor on feet during the day and Profoot Heel Rescue foot cream on my hands.
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jobur, I’m sorry you have to move on. Can you please pop in and let us know how you do on Enhurtu. That might be up next for me, but I’m still doing okay on Xeloda for now. I hope you do well with Enhurtu.
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Thanks kbl! Actually I was glad to be able to move on once Enhurtu became an option. Previously it would have been Taxol or another IV chemo. Since going back up to 3000mg, I was getting really tired of some of the se's, and I hated trying to time my life around eating 3 pills, twice a day, 12 hours apart and after a meal. So far Enhurtu has been a nice improvement, but I will keep you posted. Hope X continues to work for you with tolerable se's.
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The fatigue is the worst. I’m napping every day now, sometimes 20 minutes, sometimes two hours. The energy level is definitely low.
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So I’m leaving Xeloda too. I’m Her 2 low now so they are putting me on Taxol and Herceptin and something else. My hands are peeling like crazy and hard to bend and the tips of my fingers are tingly and numbish . My feet are sore and red. Some of my toenails are turning dark. Xeloda has been the worse for me. Afraid of what taxol will do. First time 8 yrs ago was fine. But now?? My fingers are already crap. I’m afraid.
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dancingDiva- how often will you receive Taxol?
I hope you find it tolerable and effective.
Hugs to you as you move from Xeloda.
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After only a brief period on Xeloda, I'm leaving too. I took it from May 25-Sept 21, only four months. During that time my symptoms became worse and my cancer markers shot to the top of the charts.
Doc ordered a port to be installed and IV chemo treatment with navelbine which I started yesterday.
The navelbine is my third treatment this year following 5 months of Lynparza and 4 months of Xeloda.
I hope the navelbine has positive benefits as I absolutely hate this port, hate it.
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I will be on taxol once a week which is just annoying with going to H so often plus blood tests the day before. That’s twice a week. Herceptin and Perjeta are every three weeks.
I had my port installed 8 years ago and it’s still there. Will need it now for taxol again. It’s under the skin and doesn’t really effect me.
Pnw I hope it starts feeling better for you. You just got it so you need an adjustment time. Im sure you will get used to it and it’s better than needles.
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denny123 - thank you so much for sharing. I am so happy to hear that you have been on Xeloda close to 5 years! It is the only medicine that has worked for me, and I hope to stay on it a long time.
I am finishing up my 3rd year of a de novo MBC diagnosis, and December 2021 is when I started Xeloda. My blisters have finally gone away (I am the cruise girl who suffered my first hand and foot infection during the trip) and Brooks shoes is sending me 2 pairs of shoes because my newish Brooks shoes were feeling too small. My Dad always said, "If you don't ask, you won't get."
I am so happy that Brooks customer service responded to my email. My toes are still sore from the awful foot infection I had during our cruise, so a larger size in the toe section will help so much.
I rented a wheelchair from the cruise line so we could go on excursions and I wouldn't have to walk on my heels to keep the pain away. We even used the wheelchair to wheel me from the back of the ship to the front. Anything I could do not to walk on my feet helped me to be pain free. I am starting to walk 1/2 mile on our park trail, and am seeing the difference in my attitude now that the pain is almost gone!
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Sorry for everyone who has to quit Xeloda. Since I have been eating fewer foods with high folic acid, my hands and feet are tons better.
I have another CT scan coming soon...maybe in November. Meanwhile, I am going through a ton of tests, including a brain scan. My BP goes up and down severely. It will go really high, and then when I eat something, it tanks to being too low. And I am having kaleidoscope vision flashes. It was the only way that I could describe it and when I googled, kaleidoscope really is a thing. I could have low blood sugar, I guess. And I sure prefer that to a heart problem or TIA. Waiting for an endocrinologist to return my call after he reads the office notes from my PCP.
Then a week ago, I had a really strange event....got really hot and dizzy and confused. My BP was 177/100. After I felt better, my BP was 199/110. Next time I have to call 911. It could have been a heart problem or an almost-TIA.
All of this is making me crazy and worried. I am waiting for a call to get a Holter heart monitor that I have to wear for 2 weeks. That really doesn't sound like fun.
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Denny123, so sorry you’re going through this. I had the monitor for seven days. It wasn’t too bad. I was allowed to take the wires off to take showers. When I would feel something, I would hit a button and describe it, if I remember correctly. I hope they figure it out for you.
My H&F is the worst it’s been this month. Man, it’s like paper cuts, only a lot worse. And why is it every time you reach for something, you hit it with the finger that’s hurting? Ouch.
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Woodland- I wore COZY CROCS (they are Crocs that are lined with fuzzy fabric) for most of my Xeloda time. Wide and plenty of room for my toes, I couldn't have anything rub my feet.. I also wore dearform slippers, which I even wore shopping because they were the only shoes that were comfortable. Lost some toe nails, and used toe coverings, like Zen Toes, to keep the toes from rubbing each other. Saved me from having blisters.
Denny- The kaleidoscope vision might be Ocular Migraines. I've had them for years. they don't hurt but can be distracting, I've learned to sit back and enjoy the colors until they disappear. I had a doctor interrupt his dinner to call me back ( I was panicking when I had my first event) to calm me down and tell me how "normal" it was, not to worry, they just happen. I had a recent ER heart scare, it started as a visit about my bad cold triggering a closed airway and I couldn't breath. During the visit they found high triponin levels that indicated I might have had a heart attack so I was put in the hospital on a heparin drip. It turned out my closed airway probably caused the elevated levels and after extensive testing I was declared to have a normal heart. Blood pressure was swinging high too normal. I decided not to take daily 81 mg aspirin or blood pressure medicine and just focus on cancer.
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denny123, I’m so sorry to hear of the latest medical issues you’re dealing with and want to let you know you’re in my thoughts. And the same to you, ninaca.
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NinaCA, wow, I can’t imagine how scary that must have been. I hope you’re feeling better. I’m so happy for you that your heart is okay. The scares are the worst.
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I had scans on Monday. For the most part, stable. There's an area in my left thigh that the onc thinks is questionable so she is sending me for a radiologist consult to get his opinion on if it is a spot that needs radiated. At the end of September, after an unusually busy week that included line dancing and all-day walking at a festival, that leg began hurting. I mentioned it to my onc last week during a Zoom apt. I was not sure if I pulled a groin muscle or what. It is sore but not painful. I can walk, move around and bend the knee but am limited on how high I can raise that leg. So I am not quite sure what the issue is. Guess meeting with the radiologist is the first step.
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I hope they can help the pain, DivineMrsM. I’ve never had radiation. I hope it helps.
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Kbl, nina and divine-thanks for the kind thoughts.
I had my carotid scan on Friday and the tech said that it looks good. Will have my brain MRI tomorrow. I can't see my endocrinologist until January. My BP fluctuates wildly, and has been for several years. I joined a group on Facebook for hypoglycemia, which we are sure that I have. And their diets are so restrictive in some cases. They often have weird events like I had. Before my weird event, I had an evening snack of toast, a pear and 2 Slim Jims. And a couple of people said that the pear might have caused the problem???
kbl - are you watchng foods high in folic acid? They definitely cause my hand and foot problems.
nina-glad that you are okay. My Dr. insists that if I have a weird event again to call 911.
Divine-I hope that your leg pain is fixed quickly.
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Hi, Denny123. Sorry, I was out of pocket for a few days. I eat like crud and don’t eat many things with folic acid. My hands and feet are a little better now.
I had a brain MRI last week. All clear. I hope yours is the same. Please keep us posted.
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kbl, glad to hear all is clear on the MRI !
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kbl-thanks! I just got a call that my brain MRI is clear! I have been wanting one forever to check for BC mets.
This dumb possible hypoglycemia is making me crazy since I don't know what to eat. The suggested foods have high folic.
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Thank you, DivineMrsM.
Denny123, so glad yours was also clear. I’m honestly at the point of hating to eat, but I don’t have your issue of possible hypoglycemia. Ugh. I’m already a picky eater. I hope you can figure it out.
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denny, glad to hear of the clear brain MRI !
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denny and kbl, so happy to hear of your clear brain MRI. I had one last week and mine was clear also.
I am long gone from taking Xeloda (a year) but still lurk here a bit to keep track of you all. My onc wants to put me back on Verzenio thinking she pulled me too soon and it is working. My last PET and spine MRIs all came back clear. My markers are low too. Verzenio is easier on me that Madame X. Take care!
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intolight, great to hear of another clear brain MRI ! Kbl, denny and you just performed a hat trick of sorts! Also glad you’re doing well on Verzenio—it did zilch for me and was so hard on my body. Xeloda is entirely more tolerable for me. Isn’t it interesting how different treatments work differently for all of us?
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New to the xeloda thread, but looks like this is my next treatment. Been through I/L, faslodex, didn't tolerate affinitor, and my ER and PR is going down. My doctor warned me of diarrhea with this med (I already have with all my other treatments as well) and is worried it will be too much for me. Is this a big issue for you? Any other pro tips? Thanks for the advice!
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kelq, this med doesn’t give me diarrhea.
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intolight, great news for you too. So happy for you. Hope Verzenio keeps working great.
KelQ, I have not had any diarrhea in my 13 months on Xeloda. I have constipation. May I say it’s been bad this week. I hope you do well on this treatment. I’m hoping I get many more months on this one.
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kelq- I'm past Xeloda but I found lots of helpful information here for side effects. Also we had many discussions about 14/7 or 7/7 schedule, with lower dosage of pills over time. My summary of what we recommended for side effects:
CREAMS AND LOTIONS USED DURING XELODA CYCLE TO MITIGATE SIDE EFFECTS
PRODUCTS THAT CONTAIN UREA-Urea is used to treat dry/rough skin conditions, nail problems, removes dead tissue to help wound healing.It is a known keratolytic. Keratolytics are medications designed to dissolve skin flakes and scales. "These products and others containing urea, salicylic acid, or ammonium lactate can be useful."Some people find it drying.
Atrac-tain Cream- A moisturizing Cream with 10% Urea and 4% AHA
Udderly Smooth- Hand & body Cream- Extra Care 20 in pink containcer (the PINK item has urea in it, not the less expensive red one).
O'Keefe's- Healthy Feet, - This gets used on my hands too since I have it on my hands to apply to my feet!
O'Keefe's-Working Hands (same ingredients as healthy feet except one added, Allatoin)
NON UREA PRODUCTS
Aquaphor- Healing Ointment – Petroleum is the active ingredient -,cools my skin and makes it more pliable. It's a bit greasy but works its way into the skin and can be the only thing that feels good.I buy 14 oz jar.
WEAR THESE WHEN WALKING IN NORMAL SHOES PRODUCES BLISTERS OR HURT
Dearfoam Slippers for Women, Darcy Velour Clogs- I used even when shopping
Cozy Crocs- Crocs that are lined with fuzzy fabric for comfort.
EXTRAS
Cotton Gloves with fingers tips missing (helps to hold on to objects)
Heavy Duty Industrial Rubber Gloves -Uxglove. They are protective when washing dishes, helps get a grip on objects.
Toe Coverings- silicone toe caps (you can cut to size), or individual toe wraps that go around the toes to reduce friction from rubbing other toes.Zentoes, etc.
Silicone Socks- If using a greasy cream it helps keep the product on the foot at night, or when you need it.
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