All about Xeloda
Comments
-
I will be leaving the group once more. Thursday I find out for what.
Love you ladies. Good luck
0 -
We will look for you left. Good luck.
0 -
So kind of you to reply me.... I ll get back to you as he answers me these questions...
Yeah he is very caring indeed... MAY God help and bless all of those kids who help and take care of their parents...
Thanks dear
0 -
Leftfootforward I wish you good luck with the nextchoice of treatment!
0 -
I was taking 1250 mgs twice a da
0 -
Hi lovelies any tip or solution for dyspenea I. E shortness of breath... Mets with lungs/liver/bones.... My mom doc are switching to Kisqali(ribocyclib) due to intolerance of Xeloda.... GI increases to an extent... Want to remain hopeful:(
0 -
Good luck leftfoot!
0 -
Wishing you all the best LFF. I too will be leaving, but not until I get scans. Probably some time this month. Need to do some research on the offers I was given. Ibrance/Letrozole, Verzenio/Letrozole, another one with Letrozole, but I can't make out is writing, it looks like he wrote K=sgali (suggestions anyone), and then Afinitor/Aromasin.
0 -
good luck goldie
0 -
Hey goldie
Dear it's Kisqali(ribocyclib) comes in the list with ibrance(palbocyclib) and verzinio(albanacyclib) (I guess)
0 -
Thanks San, I had another friend tell me what it is. Now to do some research and see which one I want to try.
Thanks LFF.
0 -
Good luck Goldie!
0 -
Good luck Goldie! I will miss seeing you here.
Hugs and prayers,
Claudia
0 -
Checking in with my sister Madame Xers. I continue with my 2/2 pills a day (14 on, 7 off). No side effects I always say but I have noticed that sometimes my palms itch intensely. A good itch and they seem to settle down. I suppose that is a side effect. Almost never do I have nausea and I don't take the pills with food. Just get up in the morning and down they go. I'm lucky and probably the low dosage has something to do with it.
I've had a pretty long run with X. At least 3 years and the cancer is still just in my bones. But there is a little progression all the time so at some point I will have to do something else, or something in addition. I was doing Xgeva but I had insufficiency fractures of my sacrum so the onc took me off it just in case.
0 -
Hey there everybody, I was active on this thread all through my three-year stint on Xeloda, which ended in December 2016. Since then, I've been on Taxol and now Halaven, so I post elsewhere these days. I think word is circulating a bit that I wrote a post here several years ago listing all my tips for minimizing HFS on Madame X, because I've gotten some PMs asking for it and asking for help.
For the record, it's on Page 167 of this thread, but I'll repost it here. All the best to all of you!
Lulubee
--------------------------------------------
I've been pretty vigilant about my hands and feet, and my troubles there have been manageable so far. My best advice for you about that:
- give your hands & feet regular slatherings of a thick, super-rich lotion (I like original formula Nivea)
- never go barefoot (but especially when you have slick lotion on your feet!)
- get some cushy, lightweight shoes like Skechers GoWalks with memory foam insoles
- give up heels and any shoes that concentrate pressure on your soles! (sigh)
- wear good, flannel-lined rubber gloves when you do housework
- let someone else open jars and prune the roses (i.e. avoid tasks that put pressure on the palms)
- don't expose your hands or feet to water for longer than the length of a normal shower
- exfoliate your feet very, very, VERY gently, and only a little at a time (I use only a soft washcloth and a little olive oil soap).
- don't stay on your feet for too long at a time, especially when the drug concentration in your body is higher
- elevate your feet for a few minutes mid-afternoon or whenever they feel sensitive
- get enough healthy fats in your diet to support your skin
- SLEEP to allow your skin to repair itself
- and hydrate hydrate hydrate!
0 -
Thanks! There is so much information out there and much of it is conflicting. I have been soaking my feet in luke-warm water for two weeks followed by an application of GEHWOL Cream which comes in both a universal foot cream and a salve for cracked skin. I am thinking now that the first episode of my feet having white patches which then peeled started last Friday with half an hour in a warm pool at the Y during a weekly breast cancer program. Are swimming pools also out?
0 -
Lulubee-good post. I have found that soaking my feet for 15 minutes a day in Epsom salt has really helped the pain in my big toenails.
And for opening glass jars, I love the Robo-Twist that automatically opens them! Got one at WalMart last year.
0 -
Marianelizabeth, water is water is water. My oncologist (who does BC exclusively and has scads of Xeloda patients) strictly said no swimming, no hot tubs, no prolonged bathing on Xeloda.
The pool is probably the worst offender because of the friction from walking on the pool floor which requires toe gripping and pushing off the front pad of the foot against water pressure, and also because pool water is chock full of chemicals.
The only time I ever soaked my feet while on X, white patches of skin slid off afterward in thick slivers, leaving raw, red endodermis exposed. It was extremely painful, debilitating, and slow to heal. I almost had to use a wheelchair for a while but was able to stay home instead.
I'm so sorry. It is very difficult to find a way to exercise with HFS. It often rules out walking, swimming, and pedaling. Even some yoga poses put a lot of pressure on the hands and feet, which draws Xeloda into the epidermis and traps it there.
Gentle Pilates is an option which does not impact the feet as much.
0 -
Goldie,
I was on Letrozole and Verzenio before Xeloda. Letrozole for 7 months and then added Verzenio for 5 or 6 of those months. It seemed to work for about 3 months, good scans, then stopped. SEs were fatigue and diarrhea. I really felt lousy even though the diarrhea was manageable with Imodium. I feel so good on Xeloda but I just am anxious to see if it's working. Scans end of month. Maybe you won't have to change or you'll do ok on which ever therapy you go to. I'm beginning to see how we get attached to everyone in the group. I want everyone to stay on Xeloda and get better.
0 -
lulubee, as above, white patches too and awful pieces of skin coming off. Since you posted yesterday, and I stopped soaking, they are already improved.
0 -
Hi all, just a note of hello that I may be joining you all soon after progression on AA. My doc is offering a choice between Xeloda or weekly Taxol. Any thoughts? I am stage IV de novo so have not had IV chemo yet, and I am wondering if too much of my decision for Xeloda is based in not wanting to go in weekly or lose my hair with Taxol... Appreciate any thoughts...!
0 -
Thank you Claudia, that is sweet of you to say.
Winning, I do 2 in the morning, 3 in the evening. My morning 2 I can take w/o eating, but don't dare try it with 3!
Mariane, I would think that that the chlorine would not be good, but hey, I say, if it isn't bothering you, go ahead. Not sure if that is wrong or not!Denny, I had some epsom salt here, and tried a soak last night for the first time. Crossing my fingers. Sunday is my last day of my 2 weeks, then I think I'm going to take 2 weeks off.
Lulu, I've never had patches come off, but I do have some deep cracks on the outer edge of my heels, with that raw red skin exposed, and yes, hurts like the dickens and forever to heal.
KLMPK, Versenio is one of my next options.
Jamie, I would say to at least give X a chance. Can't blame you for not wanting IV chemo.
I've had a wonderful 10 days with my DD, who is visiting the states from the VI, where she lives. She headed back to Michigan for her last leg of the trip, but she extended it, so I will get to see her again when I head there on Tuesday. Here are a couple of fun pics we took.
0 -
Jamie,
I would try Xeloda. I'm 1500 (3pills) twice a day. 1 week on and 1 week off which i think makes a difference with side effects. I have minimal side effects. The HFS (hand, foot) thing. For me just redness. I'm still bowling with no problem. I can't think of any other SE. I feel really good and just hope it's working and I can stay on it forever. Does not effect my quality of life at all, but everyone is different. I should also say I'm 74 for whatever difference that makes.
Karen
0 -
Jaimie - I agree with Karen. Give Xeloda a try.
Lulubee - Thank you for taking the time to share with us. I am off to Amazon in search of flannel lined rubber gloves. I need at least two pairs, one for house and another for barn.
Goldie - You both look like you are having a great time! You also both look adorably cute! Thanks for the smiles!
I just wanted to add to the HFS info, that I am no longer able to take a warm shower, since the warm water makes the bottoms of my feet feel on fire. I also can not do any hot water cleaning because my hands burn. Yesterday, I decided to throw caution to the wind and wore my sloggers to the barn with no socks. Then work sandals to the grocery store, and then sloggers to mow the grass. When I hopped in the shower last night, the pain was awful. I kept my feet up and they feel better today. Will not do that again!
Hugs and prayers,
Claudia
0 -
I miss my days on Xeloda. I did well for a year. Theses brain mets are a totally different animal. The pain is horrible. I’m on scheduled pain pills 25/7. I’m very weak which can be from the full head radiation treatments. I have one more to go. The first time your head gets locked I. That thing is freaky. I was hoping that the radiation would help bring my eye sight back but I still can’t see shit and have double vision. It sucks! I have ten more weeks of immune therapy. They keep telling me i don’t have much time left. I have never been so sad. I totally love my life and know it’s going to end. Hate cancer!!
0 -
Hugs to you Diana, those are words we all dread to hear. I am so sorry, and you must be so scared, I know I would be. Wish there was more we could do, cuz words don't really cut it. Not sure what a hashtag does but #hatethisdisease.
0 -
Diana--It makes so very sad to read your words...I hear your heartbreak and can only begin to imagine how you feel. I hope that between the radiation and the immunotherapy you have a remarkable response and can prove them wrong! I'm holding you in my heart.
Sending peace and strength your way--
Elizabeth
0 -
Dianarose hang in there and stay strong. Doctors don’t really know much otherwise cancer wouldn’t be such a dreadful disease. Many women on this board made big turnarounds. I’m one of them.
A year ago I had two caretakers and was ready to put my affairs in order and now I live independently, of course that could change but the point is that my doctors were wrong.
You're getting Immunotherapy...lucky you!! Isn’t that great? That's what I hope for myself...
Why are you in pain? Aren’t you getting pain managment meds?
I hope you get well soon and prove them wrong!
0 -
I have a lot of head pain this morning. Feels llike I gothit with a hammer and the top is on fire. I took the pain pill earlier and just took some Tylenol. Mornings are tough. Always filled with pain.
0 -
Dianarose, I’m sorry about your suffering...in the past few days my fentanyl patch doesn’t seem to be doing much to relive my back pain either and I might have to talk to my palliative care managment team about getting more pain meds.
Have you talked to your doctor about what your experiencing, surely there's more than a Tylenol you can take, although they have worked well for me in the past. The problem is that they affect the digestive system.
I hope you feel better soon....
0
