All about Xeloda
Comments
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Alesta, that's how I felt this round, which is my third. Kept feeling like I was on verge of throwing up and really hard to stay awake. Not such good se when your still working. I'm on 2 day of second week and am feeling much much better so I hope you will soon also.
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Seems like the Side effects of this drug change all the time. Mine are different every day. Hope you feel better soon.
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I think we can safely say the side effects are consistently inconsistent.
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I think the only thing that is saving my fingernails is the fact that I have had acrylic nails forever. I do have a black line down each of the big toes.
Been on Xeloda 30 months now and this last week I have been dealing with white pockets on my gums.
Never ends.
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Saying good-bye to the Xeloda thread. Bad scan results today. New mets and increased size and activity on existing ones. On to the new drug Perjeta-anyone who know someone taking it please let me know. Just approved June 6 so little info on it here. Also dreaded Taxotere and Herceptin. There goes my cute hair.
I lasted 7 cycles-so wish it was more. I did well on it=very few SEs and livable ones at that. Good luck to all of you.
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lilylady: I'm sorry to hear it. I used to do Herceptin, then the cancer changed. It used to give me flu like symptoms for a day. Best wishes to you.
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Lillylady....so sorry to hear xeloda quit working for you. Never heard of your new drug, I'll have to look that one up. Hope it does the trick for ou with little se's. Die cancer, die!
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Sorry Lilly Lady. I got a year on xeloda and went to navelbine and now Gemzar...the last hairsparing option according to my onc. I've never heard of perjeta either but glad to know there is another option out there. The prospect of losing hair again has got to be tough. I know I dread it. Transitions are tough period. Here's hoping it is effective and with minimal side effects.
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Lilylady - sorry to hear you're getting off the X train. I haven't heard of your new treatment, but I hope it works well with tolerable side effects.
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Lilylady, sorry about your progression. I have heard good things about your new treatment. Hope you get great results.
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You know the hair thing for me isn't the vanity part that bothers me as much as it is that it makes you so identifiable as a cancer person. I hated wearing a wig-always felt lile I was going outside with my cat balanced on my head. Both of mine did actually look better than my real head ever did just nevet got a comfort level with them..
At least I won;t have purple toes for the rest of the summer-heres hoping I can hang onto my toenails-lost most of them during big chemo last year.
Thanks for allthe support. This is a great thread with lots of info and caring people on it. Tried to start a Perjeta thread but looks like I am on my own for now. It is a Her2 only drug so posted it over there. Having partners always make getting thru this easier. I will be like Apple and drop in to seehow everybodys doing.
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Best of wishes lily lady. Hopefully this next choice will bring you progress.......the good kind.
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ive heard good things about it hope it works! my rad onc notice some progression this last cat scan but decided to go a little longer on the new dose of x. have 2 more brain mets so cyber hee i come need to figure out something to do with all the masks i'm accumulating. finally had some energy these last few days. i can't believe i'm saying it in july but a few rainless days would be nice love ya all thanks for being here
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So I have spots or freckles all over, I have reg freckles on my body but noticed them on my belly breasts back legs ect. They are bright red, purple and brown. My onc said it was an allergic reaction and took me off xeloda for now and put me on benadryl. My reg doctor said it is petechiea-small hemorrhage under the skin and im now waiting for lab results to find out why I have it. How long have you had the freckles from the xeloda? Maybe it's not as big a deal as my doctor makes it out to be.
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Lucan...I notice more spots with every round. My skin is darker especially the lines in my hands.
Feet have been very hot and sore this weekend. I think its the heat, because they feel much better if i stay in the house with air on. My skin was sticking to my leather sandals so I went to Walmart and found some slippers with rubber soles and terry cloth over cushioning on the inside They look like flats that I normally wear to work except the tops are nylon material. I think these will do for work. And they were only $7. Can't beat that for foot comfort.0 -
Wondering if any of you on xeloda still have artificial nails? I'm wondering if I should have them removed. Has anyone addressed this with their onc? Thanks
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I had the gel nails almost the entire time I was on X. No problems at all. Not sure about the acrylic nails though....
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Thanks Lynn, I have acrylic. Hope to keep them.
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I really am sorry for the bad things many of you are suffering; in fact, I don't say much here anymore because I feel I can't join in - I seem to be the only person who doesn't have side effects from Xeloda; that cannot be true. My hands and feet are slightly dryer but I don't treat them any differently, my nails are much harder but they look good and I have only had diarrhea twice in seven cycles and I think that was from me indulging in too much fruit. I feel glad that it's not affecting me badly but feel a bit guilty about the problems I'm not having and many of you are. I hope that your bodies eventually become more accustomed to the drug and the symptoms subside.
Lilylady - I choked on my mug of tea when I read that your wig felt like a cat on your head and I'm giggling every time I think about it - that made my day. Wishing you the best of luck with your new treatment.
Barbara
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I hope I haven't been whining Banjo, vit X has been my friend. Other than dry, peeling hands and feet, an occasional drowsy day, I'm thrilled to be on this one. I think it might have been about 6 months ago I started a thread about how I was F'ING sick of being Sick.
The last three months have been a reprieve of sorts. I feel pretty good. Don't tell Social Security. ;-)0 -
Same for me. I'm just posting minor se so others can be on look out but for the most part this has been much easier than arimidex. At least these se are sporadic and fleeting unlike the constant aches of arimidex.
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Swannay
think the only thing that is saving my fingernails is the fact that I have had acrylic nails forever. I do have a black line down each of the big toes.
Been on Xeloda 30 months now and this last week I have been dealing with white pockets on my gums.
Never ends.
Dx 7/21/2009, <1cm, Stage IV, Grade 1, 1/7 nodes, mets, ER-/PR-, HER2-
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Nobody's whining; you all have difficulties and it's useful to share and give helpful tips. I just feel uncomfortable being symptom-free but still part of this drug group. I feel the odd cushiony feel to my feet when walking but that's all I can manage! Should worse things develop, I know I've got an excellent resource of advice here to make things better.
Barbara
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Glad to hear your se are minimal after 7 cycles. I'm only at end of my third and hope it stays like this.
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Ladies with foot problems - does it start as blisters? I have a big blister on each of the pads of my feet, right below my toes. I don't know if it's the sandals I wore this weekend (the same ones I wore for 9 days in Paris and never had a single red mark on my feet) or if this is h/f syndrome. All I can say is "ouchie" and I canceled my mom's doctor appointment because there was no way I was up for all the walking involved and the three hour round trip. I bought some BlisterCare bandages - I hope they work! I haven't had any other serious SEs, but I just finished my second round of X and I guess now might be the time if I were going to have any issues.
TXGigi - 30 months, that is so encouraging!!!
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LUVRVING
Best thing you can do so to try to stay off your feet as much as possible. I tried the compeed blister things but think they may have made things worse. I can highly recommend gel insoles - buy a couple of pairs and put them in the freezer for when you need them (but don't put the gel sides together cos they stick). Also I found soacking my feet in salt (or epsom salts) water was good, along with resting my feet on a bag of frozen peas for a while also helped take the heat out of things.
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Thanks for the tips, Alesta. Just by coincidence, the Genentech support RN just called me and said that yes, the blisters are hand/foot syndrome and I should stop taking the meds and inform my doctor. I just took the last dose of this cycle so not taking it is not an issue. We live on a lake, the water is cool. I have applied waterproof bandages and I plan to spend a good time of today soaking my feet. The blisters have not opened up, so I'm not worried about infection but I think the cooling effect will be wonderful. I love the frozen peas idea, I'll make sure I have those ready and waiting!
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I sent my MO an email letting her know about the blisters and she responded fairly quickly. If the blisters are resolved by the end of the week, I'll start Xeloda again on Tuesday. But she will reduce the dose to 1000 mg twice a day (I was taking 1500 mg).
Apparently, if you have blisters, Genentech has to report this side effect to the FDA.
My feet were in the lake all day, now they are clean, greased up and in socks. Walking gingerly when necessary.
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I had 1 blister the end of my second cycle and it cleared by the next so by time I went to doc it was gone. It has not come back yet and tomorrow is day 14 of 3 rd round. Keeping feet cold really seems to help. I've got to get some of those jells. But I seems to hve problem with my skin sticking and am thinking they will stick to the jells.
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Frapp - funny you mention the skin "sticking"...I noticed my feet sticking to the hardwood floors this weekend and thought it was odd. By then the blisters were present, too.
I bought some Band-Aid brand blister bandages. They are supposed to promote faster blister healing. I covered that bandage with a bigger waterproof bandage. I hope this works.
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