All about Xeloda
Comments
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Oh, Theresa, I'm so sorry that you think you'll be changing treatments. That's always such a physical and mental upheaval.
A question for you all: are these the gel slippers you are talking about, or others?
If these are the ones, do you use lotion AND wear these slippers, or do one or the other? I worry that lotions, etc would damage the gel liner.
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Hi everyone! Am going to order those slippers too! Bad news this week. Once told me I have a mass in my abdomen that's causing most of my pain (have been hospitalized a few days this last month for pain) and also the liver. Who knew it could hurt so bad! Just started my third week on, praying it works! Liver counts are way up, along with tumor counts. Am really getting scared, and wondering if I shouldn't have pushed so hard to try xeloda! And my insurance refused to pay for oxycontin, said it's not on their formulary!!! What the heck is that all about?
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Oh, Gracie, I'm so sorry to hear your news!! I just read in the past couple of weeks in Oncology Business Review and in the newspaper that opioids cannot or should not be denied cancer patients who are in pain, regardless of the opioid crisis.
Take a look at this and see if you can get help with the denial!
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Thank for that article Joyner, hopefully they can get it straightened out on Monday!
Anyone else dealt with all of this tumor load and still had success with Xeloda? Desperately need some good stories!!!!
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Joyner, those are the ones I have. I use the lotions and wear them, so far no damage to the slippers. And I have had for several months. I do confess, I don't wear them every day
Gracie, we always hate to hear bad news. I am so sorry for you. I have been on X for 4 years, but I only have bone mets, no organ involvement at this time. Good luck to you!
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JoynerL - Thanks for the well wishes. Changing treatment is no fun. I use lotion with the heal-only version of the gel booties.If by some miracle I'm able to stay on Xeloda, I'll look into the gel slippers, actrec lotion and Adapalene. I also use the cotton sock booties from Amazon that I believe you recommended. My feet get physically hot after taking Xeloda. When my husband is traveling, I sometimes sleep diagonally across the bed with my bare goopy feet hanging off the bed (no blankets on feet), just to keep them cool.
Goldie, I really appreciate you posting the photos of your feet. You are one tough gal! Ouch! Your comment about "the table beside your chair in the living room" made me laugh out loud. My son brought his girlfriend home from college last weekend, and I cleared my living room table into a big basket.
Denny, My left toenail started to feel a little infected. Thanks for the Betadine tip! It worked for me too.
Chats, Has your lower back and sciatica pain improved? I hope they were caused by gardening and not progression!
Hugs to all, Theresa
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Good luck to you, Theresa, and keep us posted!
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Theresa, hoping you can stay on x! Thinking of you.
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Hello, new friends. I've come to join you, as I'm preparing to begin Xeloda. I succeeded for 2 1/2 years being stable on Arimidex, living life as usual, until it failed. Then I moved to Ibrance and Faslodex, still able to live normally in between the intense fatigue, etc. My first CAT Scan and Nuclear bone scan, taken six months later, shockingly showed the first rise of tumor markers and progression. So, I've taken the enzyme test recommended by Sloan Kettering (I believe) before beginning Xeloda, and the results just came back—no risk for me to take Xeloda as far as lack of that enzyme is concerned. There are so many things I'm trying to put in order this week, to give myself the best chances for hopefully the least suffering, which is worrying me. May I ask a question of all of you before I call and speak with my Nurse Practitioner? Are you able to swallow the 500 unit pill comfortably, without trouble? I've heard a lot about how "huge" that pill is, and I think I made an error by requesting my oncologist to prescribe 150-unit pills instead. This was on Friday. After thinking about this over the week-end, the problem that arose with that, for me, was that it turned into 7 pills each time as opposed to 2. I know myself—that would probably not work well with me psychologically, or maybe even physically. But even more importantly, that wound up adding 100 more units of Xeloda a day, turning the original dosage from 2,000 daily to 2,100 daily. I don't want that. My oncologist doesn't work today, so I've decided to contact her Nurse Practitioner shortly to tell her I've changed my mind and want to go with the 2,000 dose via 500-unit pills, before the order gets submitted. I very much wanted to check in with all of you first. Any input you kind people could give me would be so greatly appreciated.
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Kendra, I take 2 pills in the morning and then 3 in the evening, all 500mg and I can swallow 3 at one time. They are a little over 1/2" long. Here is a pic next to a standard paperclip. Hope this helps in your decision.
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Kendrasue, the pills are about the size of a typical vitamin tablet or calcium tablet. I can't imagine that you'll have any problem with them. I take all three of mine at the same time, both morning and night. Good luck!
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Sorry... I was talking about the 500 mg tablets.
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Goldie, your wonderful paperclip graphic for size comparison, and the fact that you can take all three 500 pills at once, absolutely definitely helped with my decision! Thank you so much.
Joyner, your great size comparison to vitamin and calcium tablets, and the fact that you take all three at once, too, did the trick! Thanks for the good wishes.
So, I just called my nurse and she said the pills have not been ordered yet and she will directly notify my oncologist of my choice back to 500-sized pills.
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A good move, Kendra. We're on your team!
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Kendra,
My wife Liz takes 1800mg per dose. Therefore three 500mg and two 150mg. She doesn't have any difficulty taking all five at once.
Grant
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Wow, Grant, three 500's and two 150's all at once?! All the evidence is pointing to the fact that swallowing just one 500 pill ought to be a snap. It has never occurred to me to take more than one pill at a time. Maybe I'll wind up becoming an “all at oncer" myself.
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Piece of cake....you can do it!!
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Kendra,
Like Lynn said, "piece of cake". I know you can do it.
Liz dispenses all 5 of her pills in a small dispensing cup. She holds a mouthful of water and takes the pills and then swallows the mouthful. She just told me that she can't even notice the pills.
Thoughts and prayers go to all of you!
Grant
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Today I had the appointment to meet Onc for my scans results. I feel physically fine, no pain , a little fatigue (who doesn’t have fatigue!), no HFS, good appetite and good bowl movement. Other than scan reports keep telling me my condition is “slightly worsen”, nobody would suspect that I am stage VI. So I am all pumped up to argue with Onc that I will not change to IV chemo, or I would rather stop treatment until I really have any symptoms or start feeling bad. Surprise, Onc came in all smile and told me it is stable! First time in many months, I am relieved. I know this happiness will only last until next scan! So, silly me,I asked for recheck in 6 weeks instead of regular 4 weeks. That way, I will have next scan in 4 months, not 3!! I also changed my 5 years monthly Xgeva to 6 weeks interval. I know I should not try to be a doctor, but the quality of my life, physical and mental, are more important than quantity.
I am on 4000/day, 4 big horse pills for Xeloda each morning and evening, in addition to other 5 or 6 pills. I have no problem swallowing them.
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Cling....YAY and HALLELUJAH!!!
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Cling....YAY and HALLELUJAH!!!
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Cling - Thanks for sharing your awesome news! May Xeloda work for you for a long time!!!
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Thank you Joyner and Theresa for the emotional support! It is a beautiful day today!
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Great news, Cling! It’s always so nice to get a report like that. Glad to hear your good news.Happy dance!
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Cling that is good news, but how the heck do you manage 8 pills a day. When I first started I was on 7, was horribly ill. Doing 6 I still had a rash over most of my body that itched, drove me bonkers, I am currently and have been on 5 for quite some some time.
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Goldie-I wear the socks all night with Aquaphor. I did get the new stuff that you suggested, but so far I am doing well on Aquaphor, so going to stick with that for awhile. The socks that you pictured (page 329) are the ones that I have, but the heels still slip off. I wouldn't be able to stand the 5 toe-kind, since I don't like the toe-thing. Especially when my toes are sore. And yes, I slather my feet and hands with Aquaphor and wear the socks and food service gloves all night.
The Betadine spray works great and although my toe is no longer sore, I still use the spray a few times a day to stay ahead of whatever.
Cling-I have been on IV chemo for 17 years, so don't be afraid of it!
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Goldie, as I mentioned before, this is the third encounters I have with Madam X. 8.5 years ago during the first time, I was so sick with 3000/day. So just one day Onc reduced the dosage to 2000/day. This time(after I rebelled on IV chemo), she allowed me to start at 2000/day, and go up one pill a time as I can tolerate, top at 8 pills per day, 7 on and 7 off . I will stay on 8 pills now, and I think the increase method is much tolerable.
Denny, I am not afraid of IV chemo. Went thru severals in 8.5 years, lost hair several times, then with regrowth of curls (I have straight hair from birth)! I just retired after 36 years of working, just don’t want to be tied down to IV chair on a weekly or even monthly basis!! I want to fly, I want to play, while my physical conditions are still good. Pills of X give me this flexibility. I am only half way compare with you journey, you are my model!!!
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Denny, I don't much care for the toe ones either, which is why I only wear at night, and they don't slip off.With lotions and such they get too slippery to wear during the day. I managed 5 hours last night with them. I'm glad the Aquaphor is doing good for you. The atrac-tain is doing really well for me too. I am a "picker", so always peeling that dead flaky skin, but I don't have any to peel! I don't have sore toes, just the nails lifting, mainly on the big toe. But continue with the tea tree oil and ACV. You have been on IV chemo for 17 years? Is that the Herceptin for HERr2+. We all want your success! May I ask how old you are? I am 60, going on 40!!!!
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The picture on the left is after using the Atrac-tain.
The picture on the right is with all other kinds of lotions, that didn't do much good.
Neither are very "pretty", but it is what it is!
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Wow, Goldie, I guess I have to count on my blessingsthat I don’t have HFS yet! Under the HFS, do you have problem walking?
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