All about Xeloda
Comments
-
Hollander, thanks for the encouragement
I'm glad its going well for you & the new mass has gone!Crone- I haven't come across swollen ankles with HFS, but I'm only on my last day of cycle 3. I have had splits/blisters on my thumbs & have a blister on one of my toes, but otherwise not too bad.
Hope someone else can enlighten you...
What's really bothering me at the mo is my pelvis (ischium mets) is really sore- its got worse since my fall. I don't want to go back to local Drs so I'll wait to see my onc next Monday, & I have a CT coming up soon. The only way I can walk remotely normally is with painkillers on board, but I don't really like taking drugs (bad enough taking the X & omeprazole every day). I'll just have to tough it out.
Had a good weekend, it was Father's day yesterday- so went out to lunch with my whole family (DH, DS, DD, Mum, Dad, sister & her family, brother & his family & F-I-L!) and it was lovely & sunny. Today is overcast & cool. Roll on summer!
kt
0 -
Hi Everyone,
Hollader, so glad that you are having few side effects.
Crone, sorry your ankle is swollen. I hope it gets better for your trip!
I too am having the pain on the bottom of my feet towards the back of the feet (heal area) when I stand or walk. No cracking or peeling yet for the hands and feet. I am done my 2nd round tomorrow, then I'm off for a week. The pain started this weekend. I have been using the moisturizer multiple times a day, and started putting socks on my feet since yesterday (good thing summer is almost over here, I live in my sandals or am barefoot). I even wore my sneakers around the house to try to minimize the pain. It helped a little. I've been wearing my crocs around the house today with my socks (very stylish), and it helps a little with the pain. I'm hoping it gets bettter on my week off. I'm seeing my oncologist on Fri, hopefully, she can give me some tips.
kt, I hope you get some relief from you pain soon.
Hugs,
Lynne
0 -
I. Am. Exhausted.
This is the 2nd day of my 2nd week. It's not so bad as chemos go, since in addition to the exhaustion the only SE is that the bottom of my feet are hot - not burning but hot.
But oh my I am exhausted.
Leah
0 -
Leah, this chemo does make u tired I am always tired but in top of the I have anemia so it is so much worse. I feel like everything has been sucked out of me. When we do family things after a while I need to lay down. I never had this happened. I feel like I am a 42 year old women trapped in a 90 year old body so many achs and pains. I am on my last day of cycle 3. I hope with a little break my body gets better.
0 -
Hi Crone - I had swelling in my ankles after a bad bout of dehydration. I did not have the redness though and would definitely have it checked out before traveling. I would also be careful about visiting nursing homes - lots of germs in there!
I have a new side effect - swollen upper lip. I'm in my 5th round 7/7. My lips have tasted salty for the past two weeks or so, I can't tell if it is from my constantly tearing eyes or dripping nose or something else. The swelling started a few days ago, it actually looks pretty good, like I had a mild lip injection! Oh the unforeseen benefits of Xeloda!
0 -
Hello Crone:
I am going into my 3rd cycle of xeloda and I take b-6 vita. 100mg this helps with the hand foot syndrome . Ask your doctor. Has anyone had injections to pump up your red blood cells due to being anemia? What have you eaten or taken to boost your red blood cell. It looks I am anemic and I prefer to look into natural things vs this injection my doctor recommending
Thank you,
Mercy
0 -
hi all,
I am off the Xeloda train for now; my tumor markers were slowly creeping up and I was getting more and exhausted. PET scan didn't show any new lesions, so I am stable, but Onc wants to see if we can reduce the tumor load and increase my energy level. I am going to try aromasin/affinitor combo and see how that goes for me. Wonderful new side effects await...
For those still on xeloda, I will let you know what worked for me (I took it for about a year). One week on/one week off made a huge difference in terms of the intensity of the SEs and there are studies about the efficacy of that protocol in this thread somewhere. Besides millions of creams and lotions, taking Celexa really made a difference in theHFS. I had some peeling, but the redness was minimal as were the swelling and pain. Prescription Urea cream was good too. I had some ankle swelling..just tried to keep my feet elevated when I could. The roughest part was the fatigue. No magic bullet for that, I'm afraid. Take lots of naps and be kind to yourself. If you are non-functional you might want to ask your Onc for a Ritalin Rx. It does help some people. Good luck to everyone here- may the Xeloda gods be with you!!
0 -
Thanks for all the suggestions on the H& F. I will try the B-6. Saw the MO today and she was concerned about the feet. Gave me the option of taking week off, reducing dose or staying on same dose but reducing it if feet get worse. I chose same dose because my next PET scan is next Wed. and I'm hoping for a change in liver mets. My tumor markers have dropped since starting Xeloda and even though I am dragging and have sore feet, it is much better then the mouth sores with Afinitor.
I did ask about how many PET scans Medicare will allow. She said that they don't usually limit them when there is metastasis. Hope that's true because I am way past the number of three.
Has anyone had a flu shot while on Xeloda? If so, any problems?
Tomorrow we leave to visit my DH's cousin who is in nursing home. We are her only living relatives and she is six hours away so we feel bad when we don't get to visit. But on the way home we will spend a couple of days in Michigan for r&r and then on the way home, stop at Notre Dame to take grandson to lunch. I'm tired after packing but will leave the driving to DH and enjoy what I can. Being with family makes dealing with side effects worthwhile.
0 -
I got anemia from xeloda. I get an once a week I also take iron pills. As far as food claims, oysters, lots of meat, liver and green veggies are good also beans lots of beans....
0 -
thank you Stellaratovsky!
So you also get the injection beside the iron pills?
Mercy
0 -
Crone, I got my flu shot 2 weeks ago. She pinched the middle of my upper arm hard then put the needle in. The pinch hurt worse than the needle (she said that's why she does it). I have never had a hard pinch like that before. Well, I had a 2 inch hot red area for over a week. It also felt thick and hurt when you touched it. Not sure if it was the hard pinch or the Xeloda, but I never had a reaction like that before. Usually, it just aches for a few days at the most.
Also, my primary suggested getting a second flu shot in Dec because I'm on chemo. She said that she has noticed that when we get our shots earlier every year, that they are not lasting till the end of flu season. I'm seeing the oncologist on Fri and will ask her what she thinks (I'll also ask her about the B6 too! My feet are killing me and today my ankles were swelling too, and I've been staying off my feet all day and keeping them up and lotioning too).
Has anyone had headaches as a side effect? The past few days I've had a headache off and on. I never get headaches except when I have a sinus infection (which I haven't had one in a long time). I'm just hoping it's nothing.
Thanks
Lynne
0 -
mercy5nj, I get a injection once a week. But before injection they check my blood. They told me once I get to 9 or better then I will stop the injections I am currently at like 802. Anemia is really hard to deal with you feel like u are tired all the time, headachs and lots of achs and pains. You also get cold feet. I think if you eat proper food take vitamins and it gets better...
0 -
Thanks: Stellaratovsky,
For the advise I will follow through with food and vitamins. But you are right about it is very difficult to deal with especially dealing with two teenagers at home.
Thanks
Mercy
0 -
About to start cycle 4 tomorrow. SE's not bad, thumb splits are healing.
My ischium is still sore- hard to do some stuff. Saw onc today & they want to include my brain in next weeks CT scan because of my fall- just as a precaution, said its unlikely to be brain mets, but just in case.
Hope everyone is feeling ok
kt
0 -
Back from our road trip, weather was cool and rainy but seeing family and friends is sunshine for me. Found traveling to be tiring but so is daily life so might as well enjoy what makes you tired.
Talked to MO about Xgeva and my hope to lengthen the time in between or maybe stop. Her answer was no, I need them monthly and " forever " ( whatever that is).
I thought I remembered reading of people who took it for two years or every three months instead of monthly. Looking for info to back up my argument to stretch out the shots. They were no problem with any of the other meds but for me Xeloda and Xgeva is very unpleasant - three nights of weird dreams, trouble sleeping and feeling very sad.
PET on Wednesday, hoping for good news after being blindsided by the increase in number and size of liver tumors in June.
0 -
Crone in Indiana,
Hang in there! Sounds like a busy week for you, what with finishing unpacking, taking your scans, researching your meds, etc. I have scans tomorrow, am researching xeloda as my MO told me last week that I can stop abraxane due to toxicity and most likely switch to xeloda next week. It's a pill, right? Did you have weekly blood draws? Some of your side effects sound like steroid induced. And I think what you found is what is said about my monthly zometa, what with spacing it out. No such luck for me.
Love across the miles,
Anita
0 -
I think I found an effective remedy for HFS.
My wife started taking Xeloda in March, 1 week on 1 off. HFS symptoms were mild at first but worsened with time; two months later HFS became so bad with open cuts and ulcers in her foot soles that she had to stop taking the drug for 3 weeks to heal. The oncologist recommended going to a dermatologist who had no idea what he was dealing with; after the facts I found out that her prescriptions while effective in a non-Xeloda patient, are even making things worse in a Xeloda-HFS patient.
In the meantime I researched the topic, read all the literature I could find on the subject, and found studies on a topical product being experimented in the Czech Republik. It is not available in the USA, and I bought the ingredients and started compounding it at home. Two weeks after having started taking it, improvements were visible, even though my wife was back on her Xeloda schedule. Her oncologist approves of it, and I thought that there would more people here interested in it.
0 -
After seeing my oncologist on Fri, she is dropping my dosage from 3 pills twice a day, to 2 pills, due to my feet pain and redness. I told her it was only for the 2nd week of treatment that the pain was so bad I had a hard time walking, but she said she had a patient that had to have a toe amputed from HFS, and she is now aggressive when it comes to pain. So tomorrow, I start taking 2. She also ok'd the B6 at 50mg for HFS. She said it was being used with other chemos for HFS, but had not heard of it being used for Xeloda. I'll give it a whirl. What's another pill? If it works, it would be wonderful! I am going on vacation for our 31st anniversary next month and I'll be spending the first half of the week finishing up my treatment. Hopefully, lowering the dosage and the B6 work so I am able to walk around. I still don't have my tumor markers from Fri. Last ones went from 596 to 602, but it is normal to go up after the first treatment. If they don't go down this time, I'll be having my scans a month early, just to make sure that the treatment is working. I hope it does. I'm not ready for the regular chemos yet. I never had them the first time I was diagnosed in 2005, so this would be my first time around.
Good luck everyone!
0 -
Mompsych, I don't understand how Celexa helped with HFS. I looked it up, and it is just an antidepressant with no off-label use for HFS. Also I couldn't find any research paper on PubMed associated with both Celexa and HFS.
0 -
Could it have been Celebrex? I take it for HFS and am on Xeloda. It does help.
0 -
BlaineJennifer, I think you are right: she may have meant Celebrex or Celexa which are the two brand names of celecoxib, the active chemical in the drug. However, let me warn you against taking it, because many physicians are ignorant of what should be used.
I have had significant e-mail exchanges with the researchers working on a new HFS drug for Xeloda side effects. One of them expressly wrote that the type of remedy you are taking does not work. He explained that remedies like corticosteroids and NSAID work by abating inflammations. However, Xeloda-induced HFS is not like an inflammation, and is due to death of tissue around the capillaries in the hands and feet. So anything that works on inflammation is ineffective, and could exacerbate things. Actually the side effect of Celebrex warn of caution with ulcers (the case of Xeloda patients), and concurrent use with corticosteroids. The same researcher said that vitamin B6 doesn't work.
Again the problem with the doctors prescribing anti-inflammatory drugs, is that they do not understand the origin of the side effect they are dealing with.
0 -
Hi Lynne - I dropped from three to two and my HFS issues got so much better. One thing I've learned is not to be aggressive in removing the dead skin - I pulled a piece last week and it tore into living skin which was painful and took a long time to heal. May Xeloda be working for all of us. Clare
0 -
Hi ladies, I just want to introduce myself. I'm new to this thread and this drug. I will read earlier posts later tonight. This is what I posted earlier to the brain mets thread:
Had scans on Fri., CT, MRI and PET. Saw Doc today. He said: good news first... So I knew this wasn't going to be good. Good news is no edema in brain and radiation appears to have worked. Bad news: lots of progression everywhere else. Much more on bones, now in liver too, on abdominal wall and more in lungs. Doc says to start chemo in the form of taxol and xeloda, I think, I'm a little overwhelmed right now. Said hair will fall out. I just cut it short last Fri for a change. So much for that. I'm honestly not feeling very hopeful right now. Since I was dx it has only progressed. I have more pain, so they're sending me to pain specialist.
Bah humbug. :'-(
0 -
MomPsych, hope the new regimen is good to you.
Lynne hope the HFS diminishes
And all of you others with SE's!Hi Skylotus- 2 chemos at once! I hope its kind to you but kicks those mets & gets rid of your pain!
I've just finished work & time for a chill out. I'm still tired, but gradually finding the ischium pain is lessening
yay.kt
0 -
sky, I take gemzar and xeloda and it has been working great. I hope your new meds work aggressively. Tina
0 -
hi ladies. Can I join too? I'm starting xeloda this morning. Started ixempra yesterday. Kind of nervous about administering my own treatment.
That's good news about the edema resolving sky. I don't think mine has. I thought it had some days ago but some pressure feelings have returned the last couple days. Wondering if the chemo can help resolve that?
Will have to catch up from the beginning pages. I asked mo about b6 and she said I could take 50 mg. Is that comparable to what you guys on it are taking?
0 -
Hello Dellirium:
I take b-6 100mg told by docs from Slogan Kettering.
Mercy 5nj
0 -
Scanning through from te beginning. Found confusing info about taking with food. Some saying dr said taking with food makes it less effective. Others saying bottle says take with food. My bottle says take with food and the pamphlet for dr says take within 30 minutes of eating. It was my impression that was to avoid upset stomach. I took it right after eating. Now I'm confused because I definitely want it to be as effective as possible. Does anyone have any insight on this? Am I just being paranoid?
0 -
Our Oncologist said to take it within 30 minutes. At the beginning we were not clear whether we had to wait almost exactly 30 minutes and were even timing it. Then we found out that any time within the 30-minute window is fine.
0 -
yes wait 30mins after eating. I was on the week before and I took it too quick and began to have Nausea. This week I am on and wait the 30 mins much better. You will get gasy . I hope everything works out with you. My biggest complaint right now from xeloda is the fatigue.
Mercy5nj
0
