All about Xeloda
Comments
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Pamela23- I have had lots of hair “shedding” since starting Xeloda. It has finally slowed down a bit - I haven’t heard many people talk about it. The literature says 6% incidence. I wasn’t sure if my hair loss was from 3 months of severe anemia that I had right before and during the beginning of Xeloda.
I had my hairdresser color my hair about 5 days ago - it’s a temporary dye she has used for years- no peroxide. So far so good- between the thinning and the gray- not a good look. I am also wearing it shorter due to the thinning.
Welcome Mae! My foot issues resolved after lowering my dose from 2500 to 2000 per day. At USC they use 2000 per day on everyone regardless of weight and have very good results.
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Welcome Mae, to this exclusive club nobody wants to join, I hope this treatment serves you well , without too many S.E.'s.
I spoke to my onc. nurse about hair loss and she said she had not heard of hair thinning, but mine is definitely falling out. I am hoping it calms down soon or I will have to sort out my IV chemo wig. When I was on Ibrance I used to colour my hair on my week off with semi permanent dye,but due to covid it has been difficult to get access to the one I like. I wish I could embrace the grey/white roots ,but no, I need to find a new product, because it makes me feel better.
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Hi illimae! Welcome!
I agree with Sandi since I use Aquaphor at night on hands and feet with silicone socks and food service gloves. Aquaphor or Udderly Smooth through the day.
I am only on 2,000 a day at 7/7 and am also on Herceptin.
Sketchers shoes with memory foam.
I am constipated, so I take Miralax & stool softeners every evening.
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Hi Bliss and Intolight- Regarding slippers. I am now wearing slippers all day long. I have found DEARFOAM slippers that I ordered online, with gel infused memory foam are the best so far for me and I love them. Of the 5 pairs I ordered online, 3 worked well (Darcy Microfiber Velour Clog with Quilted Cuff Slipper (covers toes), Women's Lane Knit slider (open toe), and Women's Cindy Furry slider (open toe same shoe but different fabric and color). The others gave me problems with the back of my heel (Mama Bear clog slippers and Kristy Sherpa slippers). I Don't want anything rough or hard touching the back of my heels. Instead of returning the other two they said I should give them to a charity organization. So far the extra week off and reduced dosage has cooled down my HFS in the first 7 days. Whew.
NKB- I haven't been able to fix my signature, but I had one liver met show up in 2002, it disappeared after 6 months on femara, and stayed away for 13 years until 2015 (taking only femara). After liver mets reemerged I took Ibrance + faslodex for 4 years and had to stop Dec. 2019 when it went to my small intestine (on the outside!!) and was removed surgically (hard to diagnose, scary). It came back to the liver when I was just on Aromasin this April so I went on Xeloda IMMEDIATELY (Covid kept me away from a lab test that might have shown the Aromasin wasn't working sooner). .After starting Xeloda the mets were no longer visible on a followup 3 month PET scan) BUT other areas are lighting up so we need to "keep an eye on them". There seems to be downs with ups. Recent tumor marker went up so PET may be moved up if the trend continues.
AS for CREAMS I agree that Aquafor is soothing at night (greasy for daytime) and even Bag Balm if you like the smell, but during the DAY anything with Ureacin or Urea in it is GREAT. I have Pedinol (ureacin-20, found at Kaiser pharmacy), Atac-Tain Cream (10% Urea, 4% AHA from Amazon), and Udderly Smooth-EXTRA CARE 20, Replenishing- with Urea from Amazon (I gave away the plain Udderly smooth cream it did nothing for me). I use my urea/ureacin creams constantly during the day (one by my computer and the other two elsewhere).
Off to my virtual cancer group in a few minutes.
Nina
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Thanks for the warm welcome, suggestions and PM info (Joyner), I appreciate it!
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So tomorrow is day 14 of cycle 1 and then I go to the oncology for a follow up next Wednesday. I has me nervous even though I know there is most likely no chance they will know if the Xeloda is working or being effective at all. I wish I could go in there and have him say "This is amazing - I've never seen it work this fast!" Instead I know he'll look at my blood and say "Stay the course". And I get to go home and cry some more because I don't want my life cut short. I want to live until I'm 80 or more. I still struggle to find success stories of women with Triple negative - am I placing too much focus on that? I find myself looking at the signature lines and seeing ER+/PR+ and thinking to myself "Well of course it's working for them - they aren't triple negative". Please don't think I am diminishing anyone's diagnosis - this is crap for everyone. I just can't figure out why if I'm going to fall in a tiny percentile of anything - why can't it be as a lottery winner?
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Deanders, I'm not TN, but can relate to what you're saying. I start day 1 of 3rd cycle tomorrow, have labs and Herceptin tx, then will see MO. I have a fantasy of her telling me all good news like it's gone! While I have had regression in my liver, PET last week shows 6 new small spots in my lungs, I'm unclear if this is working or not with one foot forward, two back. I'm a bit worried with this news, but then tell myself to take a deep breath and try to be patient and live each day the best I can. Reaching out with a virtual hug.
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Nina, 17 yrs on just Femara and then Ibrance? That's awesome, but sorry it moved to your intestine and now you're back at it. Thanks for the slipper suggestions. I need to get new ones. I wear Clark's slippers everywhere, even out to dinner. My MIL bought them for me and I found they were the only comfortable footwear originally with my neuropathy. When I was still working, I wore them there, too.
Re: hair dye. Once I stopped working, I decided to just let my hair go gray. I'm happy to not be dying anymore and I'm liking the gray which my hairdresser said is in style now. She's actually dying young women's hair gray!
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Mae, glad to see you here! Welcome. I second the suggestion of drinking lots of water. Also, when I did experience H/F, I got information here to stop the Urea cream because it can exacerbate the H/F, and it did mine. I used Bag Balm instead since I had a bunch on hand. I still use it at night, but use Udderly Smooth 20% Urea during the day. I wish you good luck with Madame X.
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Deanders, this may or may not be helpful, as it is inconclusive. I am on my 20th month of Xeloda and am doing fine so far. I have a PET scan (my regular every-e-months' scan), so we shall see. I had a skin met in Jan 2019 which tested as triple negative, after having been ER+ for 30 years. It is possible, per my onc, that they didn't have enough tissue for a proper reading. That is obviously what I'm hoping, but my test says that I'm TNBC now.
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Nina-I am glad that Urea works for you. It made my feet much worse since they were then too dry and cracked.
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Denny123, the Urea40 made my feet worse, too. But the Urea10 and Urea20 products have been fine during the day.
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Sandi-glad that it works for you! I just bought anther tub of Aquaphor! I should buy stock in the company.
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I'm writing down all the tips and tricks too since I just started my second 7 day cycle yesterday. I find the anxiety of taking the pills is worse than actually taking them, One thing I'll tell Mae--I had constipation so get a stool softener in your arsenal. NOT a laxative. That gave me bad cramps combined with constipation.
Deanders --I can't imagine how you feel. I am trying to find answers too, although I'm scared to hear the answers. I was diagnosed 3 weeks ago and was told the course of action was Xeloda until the markers came down then hormone therapy. Because we are still in appeals for a PET scan, I really don't know much and feel i the dark. I was OK with that until the last few days. I know she said I wasn't a candidate for surgery because it's infiltrated in the liver. Tomorrow I get a second opinion. But I wonder how bad is it? How do we know the prognosis? I googled it once and freaked out, then haven't googled anything again.
My situation is unique in that I've had shortness of breath for 2 months that landed me in the hospital for testing twice in August. I was discharged the second time with an oxygen tank since they found the breathing problem is secondary to the inflammation in the liver. It got a bit better after the first round but I am hooked by a 50' tube to an oxygen machine in my kitchen. For weeks I couldn't even brush my teeth without getting out of breath. Now I can slowly do other things but I'm basically homebound unless someone takes me and my "portable" (still big in my opinion) oxygen tank out. This breathing issue and being home has been going on for 2 months. Will I feel normal again? Do people on chemo pills feel normal on their off weeks? How long do remissions usually last, and do you do all normal things like exercise and just live life? I know it's a lot of questions but I'm at the point of reaching for my Xanax because I don't know what to expect and scared to hear something bad.
For those with liver mets, how long has it been since diagnosis?
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I was diagnosed in December with liver mets. I took Ibrance with a clinical trial drug that wants to replace fulvestrant but after 4 months I had progression so now I'm on Xeloda, which so far is working. My tumour markers went from 1000 down to 160 as of 5 weeks ago. I try to carry on life as normal but at the end of second week my hands and feet hurt too much to do anything useful. My week off isn't much better, I'm chained to the toilet with diarrhea but life goes on. I still work (I'm a dog groomer) and get out for walks when I can and am building a waterfall/stream in my back yard so it's all good
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Mls, the waterfall looks even peaceful in the photograph.
Pamela23, I also was diagnosed with liver mets due to SOB. Liver mets traveled to lung arterioles.. called microtumor pulmonary tumor syndrome..similar to a PE (pulmonary embolism), but cannot be seen on Xray or CT scan. I had a VQ scan to confirm problem. It has been 4 years since liver mets diagnosed.
Today, my liver MRI showed no new liver metastases and the lesions are stable, neither growing or shrinking. Guess that is good!
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Mls-Love the waterfall!!
Pamela-As of this Dec 12, it will be 19 years since I was dx'd with Stage 4 MBC de novo. I had liver mets upon dx, but they couldn't get to the "spot" with 3 biopsies, so the assumed it wasn't mets.
But it was, and in 2004, my liver was filled with mets, with the biggest one being the size of a baseball. I went on Gemzar& Herceptin and in 9 months my liver was clear. And it is still clear to this day.
I had a chest node recurrence 10 years ago, but am NED, as far as I know.
Denise
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MLS, love the waterfall. Beautiful!
Pamela, everyone is different. Today I had a video appt with my onc and she said she was surprised at my results. I had multiple liver and bone Mets from the beginning over four years ago. Today I am NEAD on a PET scan. This is the first time those words were applied to me and my onc said she was surprised at the results so soon... after only 3 cycles.So we stay the course and monitor as usual. I do have shortness of breath on Madame X so we are watching to see if it improves. My H n F is minimal but present so I moisturize often. I write this to sa keep the faith. Good results are possible for you.
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Intothelight, what a lovely surprise you had. I would love to hear NEAD. Thank you for sharing positive news that we can all appreciate.
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Someday..NEAD.
But not now..stable with no new mets. I should be happy, but why do I want more than that?
I had my appt with MO yesterday. My MO looked at my hands and noticed the skin cracks at each fingertip next to the nail. She said to keep those areas moisturized to prevent bleeding, infection. I had totally ignored my hands as the palms were not red.
She also does NOT want to increase my dose from 2300 mg/day. My platelets are 98k, WBC 3.5, all liver enzymes normal and Ca15.3 continues to decrease. Any changes now could negatively impact my CBC labs. So with HF okay and MRI stable, she feels I am on the most tolerable dose.
Please liver mets disappear.
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Gorgeous waterfall Mls!
You ladies really gave me hope with your responses. It calmed some of my anxieties and fears and I can't thank you enough for that.
I noticed people mentioning Ca 15.3. My doctor is looking at CA 27.29. I wonder why one would be used over another?
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My MO in her old location used Ca 27.29 and at her present location she orders Ca15.3. She told me it depended on what the hospital lab was using where blood samples were sent.
She said they were basically the same..the purpose is to monitor the trend of the results over time, not the actual single result. Not everyone's cancer can he monitored with these tumor markers.
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Bliss- Thanks for the Clark slipper tip I'll try them. yes I used my Dearfoam slippers to walk the dog yesterday. Since my reduction to 2500 daily (8 days do far), my HFS has improved greatly. I've been preparing for the worst and wake up feeling happy I can still walk. I still have to be careful not to wear anything that will Rub and create a sore. I also noticed your recent tumor results were Her2+ (IHC). Both times my tumors were sent back for FISH testing after Her2+ (IHC) and both were FISH negative. Are you taking Herceptin? I hear there is a trial now for those people who test IHC Her2+ and are given Herceptin. Supposedly people were mistakenly given Herceptin when diagnosed not using the FISH test and some responded well to that treatment when they were only Her2+ IHC.
USC Study? Someone mentioned a study at USC that said 2000mg daily was the best dose. Did I remember correctly? And was that everyday without any days off?
Sandi- I didn't notice my finger tips needed care until this cycle so I try and remember to put cream on them when I do my feet.
Denny- While Urea can by drying, I find it helpful as previously reported to use different concentrations of the product. The 10-20% helps during the day and the gooey Aquafor (or Bag Balm) at night helps soothe. I'm also adding Epsom salt cold foot baths, and ICE.
Does anyone have special gloves or socks to put on at night so as not to spread the "goo" all over the sheets and keep moisture in?
🤗
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I am on day 3 of my second round of Xeloda. I went for a second opinion today and received a lot of information--including seeing the images of my liver. Lots of mets and the liver is very enlarged. One thing he mentioned was that he puts his patients on a rotation of 2 weeks on Xeloda, one off. Right now I'm a week on/a week off. Is 2 weeks on pretty standard?
My cancer is very aggressive and he said his first choice would have been to blast with IV chemo but I went through that 4 yrs ago and it really did a number on me. I had denied it with my own MO and she respected my decision but really didn't know the severity of my condition. The oncologist today made it sound that most of us will be on 1 regimen until the cancer gets smarter then we'll move to another and keep repeating until the liver eventually goes into liver failure. Uplifting, right?! I appreciated the band aid being pulled off but I also know many of you have had success for many years giving me hope.
Needless to say he said to keep with X and see how it goes and that it may work for me for years. Now I'm just wondering about the length of the cycles. Maybe my MO will go up when I see her Tuesday.
He also said a bone scan would pick up things better than the PET I'm fighting the insurance for. I had a head MRI in Nov for something unrelated and nothing suspicious showed up and I've had several scan of the lungs in the past month from shortness of breath and nothing showed up. So now it's a question of the bones.
The kicker is that he thinks this has been in the liver since before I had the lumpectomy 4 years ago.
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Pamela, My MO gave me a PET Scan to check Bones and Lungs after CT showed liver was clear. What showed up was mets in the liver and rectal area (nothing in bones or lung). The PET scan was much better at picking up MY liver mets. So far I'm responding well to Xeloda (resolved on recent PET). I'm 2 weeks on one week off, but my dosage was reduced to 2500 mg a day this cycle (7th) and I have less side effects. I've been lucky to have a lower tumor load (only one or two on the CT scan, PET only shows areas of uptake not size of mets).
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Nina, glad your H/F has improved. Originally I was Her2++ by FISH. When my liver was biopsied, it was Her2+ IHC, but Her2- according to FISH. MO considers me "low" so she has kept me on Herceptin. However, I saw her yesterday and depending on what a chest CT shows in two weeks time, she may take me off X/H/T and switch me to Piqray + Faslodex. Liver also showed PIK3 by F1. MO does all three antigen tests every 6 wks. This time CEA & CA 15.3 were up, but CA 27.29 was down. We shall see.
I use food prep plastic gloves on hands and old hospital footies at night with goopy Bag Balm.
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Nina-my podiatrist told me not to soak. I buy silicone socks on eBay for my feet at night. And I use the cheap food service gloves on my hands. I am also on Herceptin.
Pamela-in 2004 my liver was filled with mets. I went on Gemzar and Herceptin and in 9 months my liver was clear. IV chemos aren't all bad. Gemzar was easy.
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Denny--what were your worst side effects of Gemzar & Herceptin? Did you have hair loss?
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My hair thinned a bit, but I didn't need my wig. My platelets went low, and I read to drink RED grape juice, and that did seem to help.
That's it-no real side effects to worry about.
I went back on Gemzar for 3 months (10 years ago) when I had my chest node recurrence, but it didn't work on those. That time, my hair and platelets were fine.
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Denny--so thin as in only YOU noticed? I already went through IV chemo and chose Xeloda over IV this time for several reasons, specifically the permanent side effects I got from the Taxotere/Cytoxin IV I have 4 years ago. The hair loss was more of blow to the ego but the self confidence and sense of self went out the window for well over a year so that plays with the mental part of this disease. I may consider IV if I didn't have to deal with that obstacle.
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