All about Xeloda
Comments
-
has anyone had a toenail bed that just won’t stop bleeding? My big toenail,The blood cakes up but starts up again after wearing restricting shoes or showering. Doesn’t hurt just super annoying and gross. My feet are a mess. I just realized I’m missing a middle toenail too. I feel like I already posted this but don’t see it anywhere so maybe I posted in a different thread or maybe BCO ate it.
0 -
Kikomoon,
When I was on xeloda, my toenails were always hurting. The nail from my big toe, which had started to separate from the nail bed, just fell off one day after a shower while I was drying my feet. The nail that fell off had a lot of blood on it, underneath.
I think that nail issues are a side effect of most chemo. I have no solutions -- just wanted to let you know that you are not alone.
0 -
I had it too with big toenail. It turned black and felt a little loose- then one day all the blood drained out of it and it has almostreattached.
0 -
Glad that we are all still here, but what a mess this is!
Kiko-I have been on Xeloda for over 4 years and my big toenails keep getting bloody when they get loose. I am in the process of losing those nails for the third time. But then they seemed to reattach themselves for several weeks. But now my left one is bloody underneath again.
My other toenails are about gone.
It's now been a year since I finally realized that folic acid in foods was the cause of my severe HFS. It is doable to avoid that stuff.
I plant a container garden on my back porch railing and will plant iceberg and red lettuce this year. And no eggplants.
During the hiatus of this forum, I had a CT scan and the spot on my liver has not changed in size. Considering that in 2004, my liver was filled with tumors, a stable spot is preferable.
Denise
0 -
I’m so glad you’re stable, Denny123.
0 -
Kbl- thanks!
0 -
With the jumbled issues on the new forum format, I don’t check in as often as I used to (and sure hope every single tech problem and glitch are cleared away soon). But am so happy to hear things remain stable for you, denny!
0 -
Denny good news!
I’m glad and sad not to be alone with toenail issues. Big toe still just a bleeding oozing mess, gross! I have now lost 4 total toenails. Who needs them? Wish this big bloody one would just go away if it’s so irritated.
0 -
kiko-are you watching your folic acid?
0 -
hi all, I’m new to Xeloda. I’ve been on Ibrance and Femera for 5-6 yrs and things started lighting up on pet scan so I was switched to Faslodex shots but that doesn’t seem to be doing anything. My TM are skyrocketing to the 400 so I’m being put on Xeloda.
I’m a bit of a wierd case. I have my mediastinal nodes lighting up and the new thing is pleural effusion in one lung. Is this common? Not having cancer in an organ but getting pleural effusion anyway?
I’m starting my 1st pill this week so we shall see how this goes. I’m supposed to get the liquid drained. This is FREAKING ME OUT. Just put me under! I feel like it’s going to hurt me.
Ibrance was easy and Xeloda is scaring me I guess cuz it’s new and don’t know what it’s going to do.
Anyone has Xeloda shrunk anyone’s lymph nodes if there was no tumor elsewhere ? Somebody mentioned previously that it did help with their pleural effusion so that makes me feel better.
Cheers,
D
0 -
hi Dancingdiva - first, let me say how wonderful that Ibrance worked for you for so long. I was on it only 8 months or so before I had to switch. And i had a pleural effusion that prompted the change. I had two thoracentesis done. Then I had a pleurex catheter put in and drain it daily. I was on Xeloda for a couple months, and I didn’t really have any problems with it. I got used to it faster than I did with Ibrance. The hand and foot syndrome is a common side effect so keep the bottoms of your feet and hands moisturized. It’s nice that you are starting with a low dose.
0 -
dancingdiva - I don’t have a lot of answers but I can tell you that so far I’m tolerating xeloda better then either Fulvestrant/Ibrance or Anastrozole/Verzenio. I’m on cycle 4 and have followed all the common tips…put pill in spoonful of yogurt to protect your mouth, use lotion with urea for hands and feet, wear cushy shoes inside the house (I wear Oofos), limit folic acid until you know how your body reacts etc. I get minor burning in feet at night but my feet have always been extra sensitive since I had neuropathy from taxol. My fatigue is minimal and nothing like the soul sucking fatigue I had on Ibrance or from radiation. I’m halfway through cycle 4 and get scanned later this month.
0 -
dancingdiva - I forgot to tell you the best part of xeloda. I have enough energy to dance again!
0 -
Question re: cumulative impact of X as far as side effects go — for those who've been on X for a little while, have side effects gotten worse over time? I've been on X for almost 3 months - TMs have dropped significantly, next scan in a month or 2 to see if things are stable or shrinking (fingers crossed). I have had minimal side effects so far - fingernails are in terrible shape, but otherwise I'm feeling way better than how I felt on Afinitor, Piqray, verzenio, fulvestrant, ibrance, letrozole. When I told my MO that I was feeling pretty good so far, my MO said cryptically/prophetically/pessimistically (but probably realistically) that the effects of X, in terms of side effects, are cumulative - so now I'm waiting for the other shoe to drop, as in when am I going to start having problem side effects with X. I'm trying to enjoy this time while I'm feeling pretty good, but it's hard not to think about side effects that could get worse at any time.
0 -
RE: reducing folic acid. I found these notes I made for myself when starting Madam X. Thought it might help.
- reduce folic acid (synthetic B9) supplements, stop multi-vit
- natural folate better - spinach, kale, arugula, collards, romaine, beans, peas, lentils, brussel sprouts, broccoli, asparagus, okra, corn, cauliflower, eggs, oranges, lemons, limes, grapefruit, papaya, mango, cantaloupe, bananas, avocados,nuts & seeds,fortified grains in bread, pasta & cereal, wheat germ
- Tell DH you can't wash dishes anymore! Worked for me.
0 -
the pharmacy just called me and said they’re giving me the generic Xeloda. Is that ok?
also my doc didn’t mention anything about folic acid? What’s the issue with that
0 -
My understanding is that folic acid can exacerbate problems with HFS, if that is one of your side effects from Xeloda. I'm also on the generic.
0 -
im also on generic. after about 3 months I had foot pain and decreased to 2000 per day and it went away. several months later I had low ANC on the 14/7 schedule and switched to 7/7 and have no further low ANC. My TMs plunged to their lowest of any treatments so far and I started it from a very sick place.
0 -
I take generic Xeloda, which is capcetabine. Side effects can be cumulative but still very tolerable. I started on 3000 mg with a seven days on, seven off routine and about nine months in, needed a dose reduction to 2000 mg due to increasing hand and foot syndrome. I’ve been on the lower dose over a year and it feels like the hfs is gradually increasing ever so slightly and yet it’s still tolerable. Like others, this treatment has been easier for me than Ibrance and Verzenio. I take line dance classes and do water pilates and will start walking in town couple days a week now that weather is getting mild. I’m not a ball of energy by any means, but I am able to remain active at a low key pace that works for me.
My advice is take it a day at a time and be open to possibility that Xeloda will work well for you and that any side effects will be manageable.
Btw, while on Verzenio, I had a lymph node light up on a scan (only time) and due to other progression to the bones, I went on Xeloda instead and the lymph node issue went away.
Best wishes to all beginning this treatment!
0 -
Thanks very much Divinemrsm and Nkb for weighing in. I’m on generic 3000mg 7 days on/ 7 days off with minimal side effects so far, as noted above. It’s helpful to hear from both of you that a dose reduction may be an option if things change. It’s also crazy how much my TMs have dropped (although still high). I’m going to try to enjoy the energy I have for now and hope that it continues for a while. Thanks again for your thoughts
0 -
I have been on Capecitabine for over 4 years. The natural folic acid containing foods killed my feet, especially my large spinach and avocado salads for lunch. I avoid most of those foods now or only eat them in moderation.
Thsoe salads made my feet so bad that my onc took me off Xloda for 3 months, but I had already figured out the problem (after 3 years of infected toenails and pain). I went back on Xeloda in 7 weeks. It has been a year now that I am watching my folic acid and have not had any infected toenails since.
I take Centrum multi-vitamins that have folic, but when I stopped them for a month, I lost some hair and my fingernails got pretty bad. So now I am taking the vitamins every 3rd day.
I use Aquaphor at night with silicone socks and food service gloves. Lotions with urea make my feet really bad since urea is an exfolliant.
0 -
I think someone asked me if I’m taking in too much folic acid because my toes are so awful. I don’t think I’m taking in too much folic acid but will keep an eye on it. I have found that 10% urea cream ordered on Amazonis actually making my feet better. Can’t do anything about the toenails though. Not painful just gross looking.
0 -
thanks gokale. I had a good run on Ibrance. Let’s hope I can keep dancing!!
D
0 -
today was first day of Madam X as someone put it(love it). I am taking 1500mg. Didn’t know there were different doses. I felt tired, my hands got tingly, and tonight my entire left side started hurting. My arm and leg are aching like when I used to have rheumatism pain which I’ve had since I was a kid. Maybe it’s a coinchidink or not. We will see. Having the water sucked out of the lung tomorrow. We will see how that goes too.
I can’t get used the different website! And I miss the colors!
D
0 -
I found some cute, comfy summer shoes that hide messed up toenails. I put insoles in mine, but do in all shoes. Ilse Jacobsen, Tulip with perfs, many colors. Slip on sneaker-like.
alt="">0 -
Ilse Jacobsen Tulips are great!
Dancing, I had thoracentsis a week ago, and it wasn't bad. And it helped enormously.
0 -
Hi All, just figured out how to find all my threads again after the big crash! Sadly I’ll be leaving the xeloda thread as an MRI this week showed up extensive bone mets on my spine and some progression elsewhere. Quite a shock as the CT looked stable. So I’ll be changing treatments again and hoping I’m not running out of options. Vinorelabine/ Navarin is the suggested next treatment. Not too confident about it but we’ll see what my Once says next week
0 -
karenfizedbo15, so sorry to see you go. I've been off Ibrance for seven months, but I still check in on the thread periodically to see old friends. Please keep in touch. I hope the next treatment kicks a**.
0 -
Karenfizbo15
I’m sorry that you have progressed and have to change meds. I did hear that Europe has an oral option for Vinorelbine- will you be getting that? We don’t have the oral in the US.
Please check with us how it is going
0 -
Karen, sorry to hear about your progression. I have never heard of Vineoralbine so I will be following you to see how it goes. I have been off Xeloda for almost a year but I still hang about to follow friends and for information. I had a good colonoscopy report yesterday so I hope to begin Verzenio any day. Hang in there!
0
