All about Xeloda
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Wow, pnw, I read your other post about the trial you turned down and the terms sounded grueling. I would have turned it down, too.
mls, your garden helper is totally adorable!
Intolight, I couldn't imagine getting five inches of snow towards the end of May! Stay warm!
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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I hope for all of you a long relationship with Madam X. Mine has ended. Tumors in my liver have doupled from 1.5cm to 3.5cm so I've been switched to Halaven. I wasn't sure there was anything else to try, but there is! Side effects are not expected to be too bad. Guess my DH will expect me to start washing dishes again when my fingers heal. Ha! Not much success longterm, but a few months is typical.Hoping for more. Blessings to all.
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Nopink- sorry for your progression and I am glad you have more options! I don't know where you live and what is available, but, I am hoping a good response with this one and then on to one with a longer success. Sassy, enhertu, Doxil etc.
Hugs!
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Nopink....good luck!
Nkb-what is sassy?
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Denny- Sacituzumab govetican ( Trodelvy). It’s nickname is Sassy.
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nopink, I am wishing you all the very best with Halaven, I hope it is tolerable and keeps you stable a good long time.
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what beautiful flowers Divine! I’m trying to plant more. Each year I get more perennial. My weigela and clematis finally flowered after 2 yrs. I’m so happy.
On another note. My feet heels are burning like hell. And one foot has a huge bump in the middle of the ball of the foot. How do u deal with this burning sensitivity?! I feel like I’m 100. I’m only 50. I was hoping to go on vacation but I’m so afraid wveverything will be so tiring or impossible
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Dancing - Have you tried taking a daily 100 mg B6 supplement? Some say it’s a game changer. I only got partial relief but something is better then nothing.
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After 2 years xeloda has failed. I'm not sure what I'm going to next, I'll find out Monday.
Even though I'm not excited about new side effects to deal with, I am secretly happy I will get the use of my hands and feet again and maybe my eyes will stop watering and my fingerprints will come back lol
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mls1, sorry Madame X has failed you. You got one more year than I did. Hang in there as there are other options.
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dancing diva- you may need a dose reduction. That really helped me. Other things- ice for the burning. I am a big fan of Hoka shoes- very padded and do come in wide if needed, it’s like walking on clouds- they are pricey- but so worth it. Can get at Nordstrom ( and return if don’t work out) REI and return easily or running stores- return policy variable. Hoka has lots of styles- some more padded than others
I also love my Birkenstocks- took me awhile to get used to them after many years not wearing them. Their design takes a lot of pressure off my metatarsal heads where a lot of the pain was. They have lots of new styles and even some with hiking type soles. Good luck!
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nopink lol on the dishes. Keep that good attitude up. Good luck with whatever comes next
Rk2020 have not tried b6. Will def try! Thx
Never heard of Trodelvy. Like the name Sassy though.
mls I could only wish for 2 yrs. good luck with next treatment
Nkb if they reduce the amount I’m afraid it won’t do it’s job. Agh!! Omg am going to have to look into these shoes. I need clouds. I just used ice packs and it felt so relieving. I put socks in the freezer for tomorrow!!
I just came back from a few days away with a friend. . It was so difficult to walk. I’m always tired. I’m sad. I work to travel - I was really hoping to go somewhere this summer with my kids but I feel useless and a burden and with all these side effects not sure I can do anything. I’m still working and I have to rethink that. I know logically I shouldn’t be working. I have no idea how much time I have left and I should spend my summer taking care of myself and kids. But at same time I feel like leaving work- I’m leaving normal life- I’m back in the sick life and just waiting to you know. But I’m tired of being stressed. Work knows I’m back on treatment and they just keep pushing and I don’t know why I give a crap of my responsibilities. I feel like I need to justify a leave, even though I have the biggest reason for a sick leave.
Sorry for ranting and thank u for listenin. DD
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DD- USC only uses 2000mg per day- they do not do it based on weight and have just as good efficacy. if it works and dose reduction shouldn't change that (true of many cancer drugs) I went from 2500 mg per day to 2000 mg per day and it made night and day difference. Definitely discuss this with your MO- you need to walk if you like to travel.
As far as work goes- it is a big conundrum- esp if young- it's a transition- my first MO wanted me to stop working -I was 58 at diagnosis- he said people work too long and don't get to have much time doing something else. he said he was going to retire at 60 so he could do something else in his life. He did retire. I found it a difficult choice- but, was tired, bald and sad after all the chemo, radiation, mastectomy,- it's a lot on a body. my job was demanding. good luck with your choice. travel when you can!!
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Holy moly. I just got good scan news. This is the best news I’ve had since this MBC saga began in Feb 2020. In January, my cancer was out of control. The results are so good, I almost don’t believe the results. Xeloda is kicking cancer’s *ss!
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Dancing, I stopped working in May of 2020. My daughter had my grandson in August of 2019, and I wanted to be able to spend as much time as possible with him. If you have purpose outside of work, I’d go for it. It was the best decision for me. I felt I had another purpose. He is now living in my house while my daughter and SIL are having a house built. It’s been a bit of an adjustment having them here, but it’s much better than a month ago when they first moved in. He and I have such long conversations. He’s not even three. I don’t think I would have stopped working if I didn’t have him, but I was totally exhausted working.
RK2020, woot for great results. I’m so glad to hear Xeloda is having such great benefits. I’ve been on Xeloda for eight months. I’m crossing my fingers it works great for me too. I’m so happy for you.
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great news RK2020
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Excited for your good scan results, rk!
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Woohoo, RK2020! Excellent news! So happy to hear this:)
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Fabulous news, rk2020! I got almost three years out of X. I hope that you do that well or better.
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Question— I read on the Xeloda and DrugRX web sites where it sounds like one IV chemo treatment plus 2 weeks of BID Xeloda pills.
Are you guys getting IV chemo plus the daily pills?
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Hi All,
With all the issues with the BCO site I've been limiting the number of threads I'm active on but thought I would pop in as I'm back on Madame X after two back to back fails on other chemos. Part way through cycle three and feeling hopeful that it's beating back the liver mets as my TM dropped quite a bit. I scan on Monday so we shall see. I do know that despite the gap in treatment the side effects came back in full force. I am so fatigued and fuzzy with brain fog. Managing to keep the HFS under control but had a week dealing with deep blisters on my heels. Ouch!
DD, I just posted about work on Mel’s thread. Finally walked away in April and it was the best decision I ever made. Bit less money but I am managing well on it. Biggest change is my stress levels which have dropped exponentially. Worth considering a change.
Waving to all of you on this thread. I didn’t go back far so haven’t caught up.
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DodgersGirl, I’m not getting IV chemo, just Xeloda and Faslodex
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kbl— Thanks!
I think this will be my next treatment.
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dodgersgirl, same answer as kbl, no iv chemo with Xeloda.
Sadie, congratulations on the work retirement! It’s nice to hear that you are so happy about the choice you made. I am hoping for good things for you on your next scans. About the deep heel blisters, I had one earlier this year and when a river of lotion and vaseline didn’t help it, I tried these hydrocolloid bandages from Band Aid that seemed to be effective. One bandaid is supposed to last for several days extended wear, but I only left mine on for about 12 hours, or overnight. I didn’t know how it would affect the hfs so I used them with caution, and I only used two. But I think it made a difference. You mentioned your heels were doing better, and I thought I’d mention these bandaids in case you had additional issues with them.
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Divinemrsm——- thank you for the reply. Also for the info on Hydro Seal blister heels.
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sadiesservant - I can’t imagine having feet blisters. Hugs. I can’t remember…have you tried B6 supplement? Some say it’s a game changer. My HFS is mild but B6 still helped me substantially. My feet used to peel if I was in the pool longer then 15-20 minutes but yesterday I was in the Gulf for easily 3 times as long with zero impact to my feet. In your pocket for Monday’s scan
Dodgersgirl - I take xeloda alone. No IV chemo, no endocrine therapy. 14 days on/7 days off.
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rk2020— thank you for the info.
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Thanks Divine. I’ll keep those in mind if I have a recurrence of the heel issues. I don’t take any supplements rk2020. It seems whenever I have tried something the Cancer Agency has advised against it but will look into B6. Ultimately, I am not sure what my MO will want to do longer term. He has me stop X after six cycles last year as it was showing toxicity to my marrow. Now that I have failed Vinorelbine and Eribulin he may want to see if we can find a way around this issue. Hard to say… but first I need to see a good scan.
Dodgersgirl, I have been on Xeloda three times and have never had it with another IV chemo.
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sadiesservant—
Thank you for your reply.
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