All about Xeloda
Comments
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Agartha, I’m no oncologist either but I’ve been stable for quite so time and my MO did say that if it became a problem, I could drop it. Her reason is the strong belief that HER2+ is driving my cancer and I’d remain on Herceptin for sure. Currently, I’m doing fine and hoping it helps with pesky brain mets. Perhaps your onc is thinking something similar, just a thought.
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Party-that's scary but so glad that you are seeing improvement!
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thanks all. I will ask my concerns to my MD but those answers are very fulfilling for me. All the best
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Hello all,
I’ve been on Xeloda for about 3 months and am wondering if I now have hand foot syndrome. Only the ball of my left foot is sore and painful to walk on. It came out of nowhere, I haven’t even taken my daily walks for a few days, but I do walk around the house barefoot quite a bit (just ordered some Dearfoams). No blisters or cracking and looks maybe slightly more red in color than the other foot. I will call my doctor in the morning but wondering if this is how HFS presents
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Kikomoon, without looking at it I don't know, but it is possible. Is it warm/hot to touch? I never got blisters and was able to keep mine from cracking, but soreness, redness, and heat do present to me. My fingers only peel slightly on the back...looks like hang nails only on the back instead of the tips just beyond the cuticle. Hope this helps.
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IntoLight- thanks for the response. It is not warm or hot feeling to touch. When walked on it feels kind of like I’ve got something in my foot. I just thought when it presented it would be more uniform over both feet
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Kikomoon...that is HFS, so you need to cushion your feet with socks or slippers. I have been on Xeloda for 3 1/2 years and that does happen now and then.
I would also slow down with the walking. That is impossible for me now.
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kikomoon- After 17 months on Xeloda my experience it's different on different days, different cycles, different doses, etc. I've lost toe nails, had blisters where I needed to protect toes with toe covers, cracked skin all around, fingers that don't bend all the way and hands with cracks on the creases, and then everything can feel fine ! Go figure. Be kind and proactive to feet and hands- I use Aquafor for dried sore skin and then a urea product over it after it has sunk in to help with the peeling rough skin. Stepping on an ice pack is great for the souls of your feet. Be careful about letting anything rub for too long on your feet or hands (I use garden gloves, and slippers without backs). Don't let the side effects of Xeloda get in the way of the goodness it can do for your cancer.
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I apologize if this message shakes anyone up but everyone here has always been so supportive and I thought you should know.
It is with indescribable sadness that I have to announce the passing of my incredibly loving, beautiful, smart, strong wife Liz. She fought so hard for herself but mostly for me. Liz passed away peacefully at home while I was holding her hand as she took her last breath.
I can't thank everyone enough for all the love, prayers and positive thought love and caring we received over the past few years.
It goes without saying that this will affect the rest of my life but I get comfort knowing Liz isn't struggling anymore and that one day I'll be reunited with her.
I love you Liz. I loved you before, I love you now and I'll love you forever.
Everyone here continues to be in my prayers.
Grant.
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Grant,
Thank you for letting us know. And thank you for being such a wonderful advocate for your beautiful wife.
Much peace to you. You will see her again.
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As you know, Grant, you both continue to be in my prayers nightly. Liz was blessed to have had you in her life, as you surely were to have had her in yours. Sending love and sympathy…
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Grant, thank you for taking the time to let us know of Liz's passing and for posting this beautiful tribute. I am sorry for the loss of this beautiful lady. You are a wonderful example of love and support. God bless you and your family.
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Not great news for me. 2nd Scan shows fluid on lung again though small - and nodes in pleura slightly larger. Plan short term is to increase Xeloda dosage by extending from 10 to 14 days to see if the dose was maybe just too small to be effective. Bearingin mind the SEs were awful initially and are now fine. My MO was clearly surprised as my first scan was so good. We'll try this for 2 cycles and rescan. She said this is not normal practice, but neither was my severe initial reaction expected. Cross posting to xeloda / lung mets threads for any advice.
Feeling the heavy loss of so many of us recently and I might be wise to take a break from BCO for a while just to keep my head straight.
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Oh Grant,
I am so sorry to read this! You were such a loving and caring husband with such strength and courage. My prayers are for your beautiful wife, you and your family.
Denise
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Karen...Sorry for your progression! I have been faced twice with rapidly growing mets but have been NED now for 3 1/2 years.
Hopefully an increased dose will be effective for you.
Denise
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Grant, I am so sorry to learn of the passing of your wife, Liz. You have my deepest sympathy. The photo you shared of her is absolutely beautiful, she was so elegant and gorgeous, and from your description of her, she also had a beautiful soul. She was fortunate to have such a loving husband who was there for her most especially in her time of need. I hope in time you will be comforted by the good times the two of you shared, knowing you had a good life together.
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I greatly need input from women with experience with xeloda. Today was my visit with MO confirming the dx of metastatic disease. Multiple bones with place if most uptake on PET being tumor the size of a strawberry in my sacrum and uptake to L 3,4&5. There was uptake to a lesson on my liver@1.5cm that was not conclusive for mets. The ER PR was+ but very weak. She has suggested xeloda and xgevia.
My questions all revolve around my heart history. I have had MI with stent, have a mitral valve leak, history of DVT and am on Xarelto. High BP, congestive heart failure. I am reading about possible problems with xeloda and blood thinners. Today she mentioned my"complicated" history but felt this was the right way to go ... The more I read and the whole depression of dx I am just wanting to throw in the towel, let them do the rads for the back pain and let it be.
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bettysgirl, I can’t advise you regarding other health problems but can say that Xeloda was a very tolerable treatment for me. It wasn’t without side effects, none of them are, but I found it very manageable. I’ve been on it twice and this time around it did an amazing job on my liver mets.
This is a hard time for you but there are treatments that can beat this back. Sending hugs.
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Betty...I'll send you a PM about Xeloda.
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Betty--good luck on Xeloda. I have been on it for 3 1/2 years and it actually lowers my BP so I had to decrease my BP meds. So watch for that.
I am also on Herceptin and my Echo's every 4 months have been fine.
I just recently realized that my bad foot problems were caused by my eating foods high in Folic Acid like spinach, broccoli, dried beans (healthy stuff!).
Now that I am watching those foods my feet have been almost normal.
I also use Aquaphor day and night.
I have been on IV chemo for 19 1/2 years so I have quite a history but X has kept me at NED so far and at a low dose of 2,000 a day at 7/7.
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Grant: I am not usually on this thread as I am not on Xeloda as a treatment. I am so sorry for the loss of your wife; a beautiful woman, a beautiful soul, a beautiful life/soulmate. May your memories of her give you comfort and in time - smiles when you remember her.
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This has not been my best week during my cycle week off. I have stomach pain and mild D where usually I am fine. I am hoping it is a stomach bug or something--no fever. Hopefully my abdominal MRI Friday doesn't show anything. I am a bit nervous...
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Fingers crossed, IntoLight...let us know.
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InotLight...good luck!
I have my CT scan on Tuesday and my onc is worried about a swelling inside my supraclavicular area. I will see him on Friday for the results.
Always something to worry about....
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Denny, will pray your CT turns out to be nothing serious.
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Thanks hon.....prayers for both of us. And everyone else!
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Denny, if an issue, the SBRT did the trick on my "slightly enlarged" periclavicular node.
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Denny and IntoLight --
Thinking good thoughts for both of you.
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Thank you everyone for the kind words. I laid Liz to rest on Friday. I know that she is now at peace.
Denny and IntoLight - My prayers are with you both. Stay strong! Healing prayers for everyone else as well.
Grant.
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Grant-Again, I am so sorry. But you were an amazing help for her all through her treatments. Bless you.
Thanks all for the good wishes, all.
Joyner-SBRT sounds good.
I k eep telling myself that maybe the node was swollen because I had had my second Pfizer shot 7 weeks before he checked me. And I will be sure to ask for future scans that include my neck area. I thought they had included that area, but it has only been my chest.
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