All about Xeloda
Comments
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Interesting hearing about mixed responses. I was on TDM1, and it was very effective for the lesions in my liver and the cancer in my lymph nodes. Unfortunately, after initial success with the lung nodules, they began to grow. As a result, my MO has taken me off TDM1 and has me starting Xeloda and Tykerb. I'm happy to be going after the lung nodules, but I'm concerned about stopping the treatment that has been effective for the liver and lymph nodes. Anyone have experience pursuing two lines of treatment at once?
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Such a sweet boy.
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Bluebird, thanks. Actually that toenail thing happened 3 years ago. It still doesn't grow right but its very graduating improving with the sanding and making sure it's always soft. When I soak my feet I use Johnsons foot soap which I LOVE. It makes the feet so incredibly soft and feels so nice I don't even take the feet out when it's starting to get cold.
I can't remember who asked abt CIves markers and where her Mets are, but mine were up to over 5000 and still just bone. More active but no new lesions. I don't know why they went so high. I was on ibrance/faslodex for 16 months and they steadily went up the whole time. I had two scans that both showed improvement during that time, with the progression showing at the 3rd scan which was when I stopped taking it. It's weird and I don't know what to make of it but I feel fine and have never had any pain. Onc is surprised I don't have pain in the spine from the looks of my scans. He karate chops my back at every appt.
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Zills and HLB, me too! I've been used to looking younger than my age (so I never tell!) but cancer treatment is hard on us. Me too on liking ginger tea as well. I get tea bags with just ginger in them so it's easy. Ginger is good for nausea and is also a great anti-inflammatory. I love it with or without honey, hot or cold. Sometimes I put it in smoothies. Me too on dry eyes as well. I use waterproof eye make-up on days I want to use makeup. Even with frequent eye drops I can find myself walking around with tears rolling down my cheeks. And that just makes me feel tired and sad and sick. I haven't been able to find that Refresh PM someone here recommended. All my stores are out. But I'm not sure I want to use a product that has petroleum jelly anyway.
HLB, I'm so happy to hear how much your TM dropped! Photogirl, yessss to your improved scan! What an adorable little hound dog.
Zills, thanks for the Jin Shin Jytsu links. I will look into this. I like adding things to my wellness practices.
Sadiesservant, I hope Faslodex is very good to you. It sounds like you have a smart and careful oncologist.Snowfall, I do think X has a reputation for being a good one for liver mets, so hopefully that will be the case for you and you'll see improvement everywhere.
I am on my 11th X cycle, so that is about 8 months. TMs and other labs coming up soon.
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DianaRose and HLB: I have bone mets (all sclerotic), lung and liver mets. The lowest my TMs (CA27.29) have been was around 200 after 18 months on letrozole alone. When I switched to Ibrance/Faslodex after the liver mets showed up, they were in the 2-5000 range up one month and down the next. They take giant steps forward, no baby steps!
Hoping for giant steps backwards with Zeloda, the lung mets are mostly gone and we aren't worried about the bone mets. Last scan showed improvement in the left lobe liver mets, but a bunch of tiny ones turned into one big one in the right lobe.
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Shetland, I got some stuff on amazon called lubrifresh, which is basically the same, mostly petroleum jelly. Six tunes for $20. It works well but I still prefer the coconut oil, which I think works a little bit better and also makes your lashes grow. i wonder if your tear ducts are blocked? With mine being dry I don't have enough tears, but way back when I did chemo the drainage ducts became narrowed and tears ran down my face all day long. I got a 20x magnifying mirror and if I press on the eyelid I can see a row of white dots pop up just beneath the lash line. It's the solidified oil that is supposed to be liquid and coat the eyeball every time you blink. Even when I had decent looks I never looked good without eye makeup. Ppl thought I was sick. Now they probably think I'm on crack.
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Snowfall - I was asking that same questions for a few months during October and November. Didn't get anywhere. Was on Xeloda w mixed response and wanted to add Faslodex or Ibrance or something and keep the Xeloda. But since it wore me down too completely I had to go ff and recover. Which I am doing. Today applied for SSDI online, took hours. Yesterday I carried my own laundry bag across the house to the washer and inserted clothes and started them!!!! huge HUGE HHUUUGGE deal, I could barely walk from one chair to the next. And I am now eating a meal pretty well.
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For those who are on the 7 on and 7 off cycle do you find it easier? Just finished cycle 5 of the 2 on one off and felt like crap for two weeks.
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I did 7/7 for about a bit, but it didn't work for me. I also tried 1 pill (500 mg) 3 x's a day with no break. That was super easy, but after about 4 months TM's started to creep up.
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DianaRose, I have been on the 7/7 from the start of Madame X so can't tell you if there is a difference. What I can tell you is that by day 5 of the 7/7 my feet and hands get to the point that I can barely walk and my hands are stiff and peeling. The nice thing about the 7/7 is that I know I only have a couple of more days and then things will get better. I know this regimen is working because I had scans yesterday and my liver tumors have shrunk by more than half. All other mets are stable and there is nothing new. This is my 4th round on X.
I say if the 7/7 is an option, give it a try. If it doesn't agree with you go back to what you are currently doing.
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Goldie and NO1- thanks for your input. I just finished cycle 5 and have been lucky. No hand or feet issues. I have been using Eucerin advance repair cream. Must be working. My issue has been really bad heartburn. It’s annoying. I have had a ton of stressful events in my life lately so I’m sure that’s not helping. Some days feels like a truck is sitting on my chest.
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HLB, smiling ruefully at your crack comment. Not so far off considering the "poisons" we take to stay alive.
Bluebird, to hear that you were able to do a load of laundry and eat well makes me very happy! That is great news, and we here understand what a big deal it is.
Dianarose, do your docs think your heartburn is from your meds? And not caused by cancer in the vicinity? ILC, you know... I have had gerd for several years, and when my liver gets enlarged it increases. However, Xeloda does have gastro side effects. I guess you know to sleep on a wedge, avoid eating two hours before bed, avoid acidic foods etc.
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My report: I had my labs done and my CA 27.29 is 10! (That is low normal.) I asked my onc how to adjust my X schedule so I will not be on week 2 for an important dance performance coming up. She said that since my hands were very red and my fingertips had been painful and peeling for a bit, I should take two weeks off and let them heal more because the damage is cumulative. I'm a little nervous about it but also looking forward to the break. I have been on X about 7 1/2 months, 2 weeks on 1 off. When I started my TM took an immediate dive and has been in normal range the last five months. I am trying to enjoy this time of success.
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NO1, glad to hear you had some good results with your scans!
DiannaRose, my DH used to have bad haeatburn and was taking Omeprazole daily. He found a supplement (not a drug) that helps him and he no longer is on heartburn medicine. It's called Zypan.
Shetland, good news for you too. I don't think taking an extra week off is detrimental to us. We need to heal.
I told you all about how I was lubing up my feet and putting plastic bags on them, then I ordered some silicone socks (they are for swimmers). I like them a lot. Especially if I'm sitting or sleeping. I only keep them on for a few hours at a time. While they are on, my feet feel wonderful. But shortly after taking them off, all the lube absorbs into my feet of my socks and we are back to square one. But while they are on, there is relief. I put socks on over them, especially while in bed. Being silicone, they want to stick to the covers. I ordered the largest size, as I wear a 10. They are really too big and it seems like they stretched some. For $3.00 a pair, they are well worth it.
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Shetland- your tumor marker number is great news. So happy for you!
Goldie- I take Omeprazole already. I think a lot of my issues right now is stress. Go to the cancer center tomorrow so my labs will tell what is or isn't going on. I think I need to pay attention better to what I am eating. Stuff like salad and broccoli really bothers me. I pray it's not from the cancer. We just booked two cruises. One for May and one in November. I really want to be able to go. Hubby has to get through his prostate surgery next month. He hasa scan next Thursday to make sure it hasn't spread. Too much stress at my house.
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Oh, Dianarose, that is way too much stress. I'll be waiting and hoping for good scan news for you both. I applaud you two for planning these cruises. "Damn the cancer, full speed ahead!"
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I am on Xeloda 7 on/ 7off. Switched from 14 on/7 off after terrible mouth sores day 6 of first week of treatment. Sores cleared up within 2 days. Otherwise I feel better than I have on any other treatment. More energy, more appetite. Liver numbers way down. Wondering how long this could last. Grateful for good results.
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Gratefulone, that's awesome that you feel better and your labs are better, and you found the right schedule. It could last years! My onc says some people stay on X for years. I sleep better on X than I did on anti-estrogen therapies, do you?
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I sleep better on Xeloda too but get so much fatigue in the day. I may ask about a 7/7 schedule myself to see if it helps. I get the hiccups a lot lately and I feel my feet are starting to get sore. i already have rouble walking with the ascites belly which it odes not seem to be helping much. Hope it's helping my liver.......
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Diana, I understand your stress. My husband had prostate surgery as well, and his hospital stay was 3 days. Hopefully your dh's surgery will remove all the cancer. My dh's had spread but the surgeon was able to get it all. What stage is he?
Bluebird, So good to hear you doing better.
I had CT and MRI yesterday after 4 cycles on Xeloda, and had mixed results. Progression in ribs, thoracic spine, lumbar, pelvis and sacrum. However my liver lesions are stable, so I am continuing on Xeloda. Still holding at 2 weeks on, one off.
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Lindalou- I’m not sure if they know the stage of my husbands cancer yet but we do know it’s grade 4. With it being that aggressive it makes me nervous. His doctor said one night in the hospital, but we will see. My husband is a great caretaker but a lousy patient lol.
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Had labs today which were good except my tumor marker went up six points. I know it’s not much but with me it’s always been an indication something is going on. They want me to do another cycle then check again. I’m just feeling defeated and discouraged today. Just the thought of going back on A/C gives me a panic attack. After 13 1/2 Years of dealing with this I’m getting tired. I was so hoping to get a couple of years on Xeloda.
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Does anyone know the standard error of the tumor marker tests? I don't but will ask my onc next week.
Dianarose, it could be that six points is within the standard error. I know it's hard to stay calm and wait, but it really might not be anything at all.
I hope that tomorrow is a better day. You're going through a lot right now. My husband had the prostate surgery whilst I was having Taxol for Stage 3. One night in the hospital and he was home with a urinary catheter for a bit. Like our drains from mastectomy. 10 days later he was fine.
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Pajim- my husband is worried about having to wear depends for awhile. How long did it take before your husband had that part under control. Also how much pain was he in after his surgery?
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I know madam X causes peeling hands. My hands and feet swell so much that it hurts to walk or open a jar. Am I just being a wuss and need to suck it up?
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Diana, My husband had a catheter for about 7 days. Afterwards he did have to wear Depends, but not for too long. I'd say a month. He slowly got back urine control. Be your dh takes extra special care in taking care of the catheter. They will give you instructions how to do that. He also took pain meds for about a week and then weaned off. Hope this helps.
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Lindalou- thanks for the information. It’s encouraging. Hopefully things will go smoothly and he can come home the next day. The hospital is about an hour and a half away. He’s worried about the flu. So many have been admitted here with it. He wants me to wear a mask and leave once he’s out of recovery. I feel bad not staying as he never left my side each time I was in the hospital.
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My dh's surgery had to be done abdominally not robotically because the cancer had spread. What is your husband's surgery going to entail? We were about 2 hours from home as well. I ended up staying in a nearby hotel which helped me. Perhaps you can get a take how the flu outbreak is from his surgeon/nurse and go from there. Wearing a mask is a good idea. It is nasty here too. Do take care of yourself as well.
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Dianarose,
I was hoping Xeloda was a magic bullet too but does not seem to be helping the ascites which is my most pressing symptom right now. Guess we'll see with a scan in a month or so. Thinking about you as you help your hubby get through his surgery! Watch out for this horrific flu though.
Zills, every SE can be miserable and we ALL totally get it! They prevent us from feeling well and going about our day. My feet are starting to hurt too especially at night in bed. I to have trouble opening jars, cereal boxes, ect. It's so discouraging! So far no peeling or cracking so I guess I am lucky so far.......
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I have hot feet too and they are very tender, red and peeling. So I saw this -a gel pad its designed for people who like cool pillows - so its pillow size - but I use it in bed to keep my feet cool. I don't even need to put it in the fridge or freezer each night as keeps and feels nice and cool by itself. I definitely feel an improvement. Its not expensive - here's the Amazon Link
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