All about Xeloda
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Pad good for after walking about shopping too!
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Schwilly, enjoy your time with your son. Nothing is as important as spending quality time with our family. As for me, I HAVE NO PAIN. Never have, not even from original diagnosis.
I just don't know what to do. I'm half thinking of stopping everything. X, MMJ, CBD oil. For me it's just so frustrating, seeing things getting worse, but not feeling any different than I did in 2008, other than SE's.
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Thanks Goldie - family is definately what keeps me going - especialky my DH & sons. (myolder son is a junior at UW in Seattle)
y markers have never been useful. I feel scans are what give me most info so that's why I didn't want to go off X until I knew it definitely wasn't working.
So very frustrating that the treatnent brings more so many more difficult effects than the disease. I wouldn't miss these sore feet but feel it might be a case of 'out of the fat into the fire' with the next treatment option.
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I will be joining you ladies soon, as soon as I am approved for Xeloda, which I will take with Herceptin.
I am a 16 year survivor of Stage 4 BC and have been on chemo the whole time.
Now I have recurrence in 3 lymph nodes in my chest, was on Kadcyla for almost 4 years until it stopped keeping me semi-stable.
Went on a phase 2 clinical trial from heck on Jan 9, called Poziotinib that I quit after 8 days because of the super nasty SE's.
Just got approved for Lynparza, an ovarian chemo, because my tumors are somatic BRCA2. But I saw my onc today who thinks it would be too hard on me.
So Xeloda and Herceptin, it is.....once I am approved.
Denise
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Sarah, what a handsome son ( and a beautiful mom). My oldest is a college freshman but much closer to home, which I am grateful for.
I'm like you trying to keep my dose as high as possible despite painful hands and feet. I'm on 3000 7/7 and my hands and feet hurt a lot even in my off weeks. Like you, I have had success so far so am putting up with it now (next scan the first week of April). I have mets in my tibia that had pain on progression but no other time. It's really hurting this week. I'm praying it is healing. I had smaller mets which have signs of healing but the tibial lesion encompasses most of the bone and has not budged. I'm going to be Pollyanna and hope it is healing.
Enjoy your time with your son. It's pizza night with my girls (18, 15 and 12) and my hubby. A good night.
Take good care,
Mary
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Also Sarah you might try Vanicream Moisturizing Skin Cream (You can get it on Amazon). My sister is a doctor who worked with pediatric cancer patients. This is what she used for kids on chemo with skin issues. It is very gentle. I don't get the blazing hot red skin I get right after applying other creams. It is not expensive either. I use several creams in rotation and have liked this one.
Mary
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Scwilly - my daughter's boyfriend was also at Emerson, its a great school and so exciting to be a young student on your own in Boston! He finished his last semester (film directing) at the LA campus. The smile on your face says it all...
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Maylark: thanks for your kind word and encouragement. I’ve just ordered some of the Vanicream Cream to be delivered next week when I’m back in California. Lets keep up our spirits. A few years ago I read some great words of a lady who had Stage 4 prior to my own Mets dx. She said ‘ no one wishes they had spent more days worrying’ So I try to live that mantra. Of course there are times when I don’t and a good cry/anger session is needed. Yet it’s good to have her thoughts in the back of my mind, Enjoy the company of you family.
Curei-ous: it’s so much fun seeing Ben and living central Boston for the weekend. We lived in the city in the UK so he has good experience and is enjoying Boston. That LA Emerson building and program is so fabulous and I love that Emerson is giving great opportunities for their students. Ben is a Film Major (cinematography) and so far has had loads of great experience and has been ‘crew’ on so many student projects. I am smiling a lot being with him these few days!
Hugs all round
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I have been reading through a lot of posts and will start Xeloda with Herceptin soon. I don't see any posts about diarrhea, and have been wondering how bad it is?
Through my 16 years of Stage 4, running a BC support group locally, and also being a volunteer ACS Reach to Recovery counselor, I have known a lot of ladies on Xeloda.
I recently had to stop Kadcyla after only 4 years which made me very constipated and am hoping the Xeloda will even me out.
Mainly wondering if I have a morning appointment, if I can delay the pills that morning until I am home???
Denise
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Denny- I have done five cycles of Xeloda and no diarrhea yet. No hand and foot either. Everyone is different.
I love reading your post as you give me hope. I’ve been stage IV for seven years and the fact that you are 16 years and going is awesome
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Dianarose-thanks for the reply! After my recent 8 days on a clinical trail of Poziotinib, anything has to be easier!
Denise
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I have had nausea and diarrhea with Xeloda but not too severe. When I have a dodgy stomach I take Zofran which definitely helps the GI issues. Also when I take pain killers I sometimes need a laxative. It's all a balance, I do seem to have 'grown' out the GI issues having been on X for around 6 months. For me it's not always immediately after taking the pills but built up over the course and sometimes lasted into my week off. Best of luck. Lsten to your own body - we are all different.
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Denny123. I have been on this site since 2009. You always have been such an inspiration to me. Really !
The stupid cancer in my body comes back and back....Always in some kind of important lymphnode.. weird.
Anyhow, The approval for X went really fast. I take it since last night. Lets see what will happen. Not great that you have to be here, but great to keep in touch.
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Thanks Mamita,
I am a kind of legend at my chemo center since I keep going and going. Don't know how much this old body can take, but I will continue to fight.
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My results are back. I've been on xeloda since November. I had complete metabolic response. My mo was shocked as I haven't been able to complete a cycle. So going to 2 pills continuously.
My diaherra was short lived. Usually my week off for a day or two. Immodium took care of it but I was tired.
It's the HFS. My social worker said a combo of Vicks and cocoa butter helped some. I'll try it and look into that cold pad for bed.
I'd like to stay on it as long as possible if my poor hands and feet will cooperate. Also need to figure out how to deal with the fatigue.
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Denny, I'm normally constipated. This is TMI, but with Xeloda I don't have to take Colace or Senna. I'm pretty regular in general but on day 14 the bowels flush out. Then they're good again. Otherwise I'm fine.
People who are normal in the normal sense would have more diarrhea.
Scwilly, glad you enjoyed you visit to our far city.
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pajim-thanks for the reply.
The Kadcyla messed me up and I have to take Miralax and about 350 mg of stool softerners every night.
Sounds like Xeloda is just what I need.
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I found Dannons immunity boosting yogurt shots and 3-4 prunes helped by gut and any digestive issues. Maybe I just adjusted to Madame X but it's still good for my bones.
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Denny, i was having constipation issues before Xeloda and it seems like when I started Xeloda it just evened me out, made me regular again. Also the nausea and fatigue I experienced in the beginning slowly subsided and I felt pretty good. Unfortunately after only 5 rounds I have to move in as it is not helping my peritoneal mets. So on to Gemzar.....I am sooooooo disappointed as Xeloda seems to work so well for so many. Damn ascites.
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Hi everyone. I am a member of a few other threads and now I am joining with you lovely Xeloda women. I'm waiting on my script to be filled and then I will take 3 pills in the am and 4 pills in the pm for 7 days on and then 7 days off and repeat. Anyone else on this regiment? I am not looking forward to the aching hands and feet but if it stops this cancer from progressing, I can deal with it. I am triple negative. Anyone else? What other side effects are common?
Kay
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Kaylynn- I just started cycle six and the only side effect I have is my nose runs constantly. Every one on this drug is different so you might not get the hand and foot problem. Hope it works miracles for you
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Hi Kaylynn, I've been on Xeloda since late August after big progression on Ibrance/Faslodex (3 months on). Most concerning was new liver involvement, which freaked out my doctor and she immediately put me on Xeloda. My first scan was in January and the liver met was gone and there was some improvement in bone mets. I started 4 in the morning 3 at night 14 days in 7 off. Almost out of the gate I ended up with grade 3 hand foot syndrome. I insisted on gutting it out for two cycles and then did a dose reduction 3/3 7 days on 7 days off. I still have pretty significant hfs but can manage. I've had no other side effects, except fatigue, which has been a constant since my initial treatment for primary. I'm not willing to do another dose reduction until after my next scans in April to make sure liver mets are good and treated and maybe more response in bone mets.
It is a strong doable treatment. I hope you have great results in it.
All the best,
Mary
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Artist----Gemzar was very easy for me, with a little nausea and hair thinning. The hair problem was when I was on it for 9 months.
But when I went back on it for 3 months for my chest nodes, no hair problem.
And no HFS.
Ugh to Faslodex-hated that so much. And since my nodes kept growing, my onc. said that I could quit getting it. I also had really bad back muscle pain right above the left injection site. No one knew the cause, and I have been getting injections of Lidocaine and Kennalog there, which seemed to help.
I was just on a clinical trial from hell-Poziotinib, and lost 15 pounds in 3 weeks, and the pains are gone...so far. So maybe the muffin top caused the pain?????
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Artist, do you remember talking with Woodylb about her ILC going Her2 positive? She had some very sensitive Her2 testing that finally determined this, and I think I remember that the Her2 treatment was really helpful when nothing else was working. See November 24, 2015 “ILC Specific questions ...”
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Welcome to the X thread Mamita49. Your question about the next line of treatment. I too have been able to escape hair loss but I’ve been on Faslodex, Ibrance and now Xeloda since April. I think my time on this drug is running out. I saw my MO Friday and asked her what next and she said there are no other pills but that IV would be next if she sees lots of progression. She fought to get me a pet scan so Tuesday I’ll have that and see what’s going on.
Goldie, my TMs have been inching. Mine went from normal to 60 to 65 to 100 and Friday they were at 135. My MO said she’s not frantic but concerned so a Pet Scan is scheduled very soon. I hope you find out why yours are going up.
As far as stomach problems, my MO told me to take Imodium and that seems to work for me. I’ve had so little SEs on this drug but I know it won’t last forever.
Good luck everyone with your appointments, scans, blood work and just dealing with this monster.
Hugs Anita
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Thanks for the info Denny. I sure hope it helps my immediate issue, the ascites as well as my liver. As far as hair thinning, mine is still only crew cut length after stopping Abraxane 3+ months ago! Yeesh!
Shetland, thanks for the reference. I actually PM Woody regularly and will inquire. It seems so hard to get these hard headed Onc's to look into this issue. My last one insisted that HER status RARELY changes especially with ILC. But she also insisted there was not a lower dose of Ibrance to which I had to contradict her several times......glad to be out of her care, but this new guy seems just as hard headed and tunnel visioned sometimes. Have to get testy next time!
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Has anyone found something that helps with the constant runny nose with madam X? Tried Claritin, no help. It’s to the point it’s embarrassing. Will just pour out like water with no warning.
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I wanted to let you all know that my sweet friend, Joan (JFV) has been moved into hospice this week. I know she has been somewhat active in this group recently and I thought you would want to know.
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Sherry- sorry, so sad
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DianaRose, You should ask the HER+ ladies. Herceptin is famous for runny noses. No idea how they solve the problem.
Sherry, thanks so much for letting us know. I hope she and her family are at peace.
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