All about Xeloda
Comments
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Thanks, Syrmom - I plan to call my onc tomorrow - A part of me does not want to, as I want X to work for me. I am already on an extremely low dose due to past problems with blood counts. I only take 1000 mg total for the day!
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Thanks, also, Syrmom, for the glove advice - I am so bad about wearing gloves, but will now.
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Hi friends I was on A/A combo until new disease showed up on my iliac bone bone last Thursday. New plan is stop A/A and start Xeloda. I will take 2,000mg after breakfast and dinner for 7 on 7 off repeat. This thread has 97 pages so hard to catch all posts. I am aware of HFS can happen to use Udder cream twice a day or more. I thought I read no ibuprofen or alieve, but read many complaints of headaches, can u give me tips of what works to prevent SE. Like on afinitor I put in marshmallow creme, do u do that for Xeloda too? I will start med on Tuesday and appreciate any suggestions. Thanks!
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I take 1000 mg AM and 1000 mg PM. Use Udder Cream on my hands and feet. I take occasional Tylenol or Advil for headache. Xeloda has been very good to me. This is my 13th cycle - two weeks on followed by one week off. Hope Xeloda is good to you too!
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I also use udder cream. It came in my X "Welcome Pack" - great, "Welcome" to more chemo. (sorry, just had to toss that in). The scent and texture do not annoy me and the price is reasonable, so I'm going to stick with that one for awhile.
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Hello chef - There has been an "area of concern" on my last two CT scans and bone scan, on my iliac bone. That will most likely be my next area of mets. Do you have a lot of pain from it?
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sorry, Chef - I should have said "Welcome to this thread" before babbling on. I am in my 2nd week of first round of X. The people on this thread have been absolutely amazing.
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Well the hand foot syndrome has hit me with a vengeance! I can barely walk. Today is my last day of my second cycle of 2000 am and pm. Any advice ladies? Thanks!
Deyla0 -
So sorry for your pain, Deyla. I am only in 2nd week of first cycle of X. Hand symtoms are just starting. I cannot help, but just want you to know I am thinking of you. I care for grandchildren ages 6, 11 and 13. They are great and understand I am ill. I cannot even begin to imagine how challenging it is to care for your little ones. Sending hugs your way.
Sherry
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Ask your MO but a reduction in dosage might be in order.
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When I went for a second opinion last week to a cancer institute, the onc there said everyone's metabolism is different and he adjusts the dosage according to symptoms. He said it's not a failure to have to reduce the dose. He tells his pts. not to allow themselves to get toxic before calling him. The key is to find a dose that is manageable and will be effective. This is only day 6 for me, so I'm sure a host of side effects will show themselves eventually. Meanwhile I keep lotioning the hands and feet, keep the doses 12 hr. apart and take after eating. I'm a headachey person and have noticed and increase in headaches. Been o.k. with either Excedrin or ibuprofen, take 2 -200 mg tabs, been o.k. Tylenol doesn't work well for my headaches.
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Deyla, based on what I've been told, I would say stop the med and call your onc. He/she may have you stop for x days and resume at same or reduced dose.
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Looks like Madame x will soon depart my cocktail of meds.
For ladies with liver mets, ER/PR- and HER2 +, what is the next step?0 -
im not the same profile as you, but, My onc kept me on Xeloda and added Ixempra infusions. Has not been fun (no its been hellish) but first scan did kick the liver back 30%. So that's something.
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Deyla, the HFS hit me hard initially also. I was on 14/7, had it changed to 7/7 to reduce HFS. Practically cured it. When my feet would get really bad I found (oddly enough) standing made them hurt less than staying off them. Try not to peel, because you could peel to the quick which will really hurt. Mine crack vertically but split horizontally, most likely from my weight flattening the edges of my heel. My skin got very hard, it was awful. I still have some foot stuff going on, but the hands are much better. I use a cuticle tool to shave off the edges instead of peeling. I did not find any lotion to be particularly helpful, but lotion then socks did help. Wear the loosest shoes you have, anything constricting your feet will cause more pain. That's all I can think of at the moment.
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The difficulty with both Deyla and myself is that we are combining X with Ixmpra infusions.
Infusion every 3 weeks, Xeloda 14/7. That gives us one week off.
I was on 7/7 and really upset I had to go back to 14/7 but onc explained the need to track the rounds effectively. If I did 7/7 I'd never really have a week off.
I'll admit here I just couldn't finish the 14 days this time.0 -
Oh! Oops, didn't realize that.
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Had really good news last week. My second cycle dropped my TMs 40 points! Worst SE so far has been fatigue and that has been significant enough that I'm switching from 14/7 to 7/7. I also started swelling in my ankles which causes my feet to ache and miserable to walk on. So I got out the grandma socks (compression socks) and it feels sooo much better!
Because of the strong, positive response it has us rethinking my joining the PARP Inhibitor trial. Since that trial adds Cisplatin and Vanelbine with the PI, we feel it would be a significant drop in QOL compared to the Xeloda SEs. I'm good with that -- do the trial when things quit working again.0 -
I've been on X 14/7 for 4 cycles now. I read that the onset of HFS correlates somewhat weakly with improved response. This was a study on a relatively small number of women, so cannot say how reliable the info actually is. Noticed a post about ankle swelling, is that from xeloda? I swear I read the insert and did not catch that. I can only say in my case this stuff beat Afinitor by a mile - hoping the next scans will prove me right!
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Hi girls I found a bit of relief from the HFS in the feet ny soaking in fairly cold water for a while if they feel like they are burning and are very hot.
Then lather them with a urea based cream to keep them soft so they don't crack.CT and MRI have shown that tumors are stable - yeah Xeloda - keep on working!!!
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For foot cream, I like Gold Bond, it has urea. It also cools your feet, when they feel warm. I lather up and put the ceiling fan on above my bed. Nice!
I start round 3 Wed. I hope it's working, because I am handling it so well.0 -
Keepingfaith- Hang in there. I have the same type of cancer as you. So far (only 5 months) I am doing well on Xeloda. I also take Tykerb because I had brain mets as well. My MO assures me that there are many chemo regiments out there that we can try when/if Xeloda stops working. How did you do on Herceptin? Is TDMI1 possible for you?I will keep you in my thoughts and hope that they can tweak things for you without too many SE.
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Thank you for all the advice ladies! I see my onc on Wed so we'll see if they want to change my cycle.
Deyla0 -
What anti nauseau meds do you guys take with xeloda? I had a rough time, did zofran and it wore off..
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Hello Tweety - I have used compazine throughout all my chemos. It works on my nausea, but really makes me tired.
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Hi Chefmiche -
Welcome to the Xeloda thread. I've been taking it for 6 months, and I have had no HFS at all. I take 1000 mg. a.m. and p.m. 14 on/7 off. So...it's possible that you won't have that SE. Most do, but not all. Also, I don't get any nausea from it. My only real complaint on it is the fatigue - but that comes and goes in an unpredictable pattern.
Otherwise, it brings my tumor markers down every month, and my CT scan showed no progression. I'm really hoping that it keeps working for me, as it's very do-able for me, and doesn't disrupt my life a whole lot.
When I first started taking it, I had a fair amount of constipation - but over time, that pretty much went away. Additionally - my WBC's are actually HIGHER now than they were after before starting it! When I started they were at 4. Now they are 5.6!! Also, I don't bruise nearly as easily as I used to. It's quite amazing. Even my friends have noticed this. When I get a blood test, my arm no longer looks like someone beat me with a rolling pin! So - clearly it's got other benefits for me going on as well.
I hope you have an easy time of it, and that it works wonders for you Chef!!
Take Care -
LL0 -
Tweety,
You might ask if you can get your hands on some phenergan. Great anti-nausea drug, but may cause drowsiness.
LL0 -
Haven't been here in awhile. I'm having a problem with congestive heart failure. I was having a bit of swelling in my feet shich I showed my oncologist but she glanced and never examined. She switched me at that visit to Xgeva. Know lots of patients with bone mets have high calcium levels, mine is low. I got the Xgeva on Wed. and by Friday I was calling to say my feet were really swollen; she never called back and was not in the office on Monday. She also had not orderd this round of Xeloda - that was the 3rd time she had not ordered my medicine from the pharmacy to be mailed to me.
I am seeing a new oncologist tomorrow - was to see her on THursday but because of my problem, they are seeing me in the morning. Am packing an overnight bag at the suggestion of my palliative care nurse in case they want to admit me to try to pull the fluid from me. Palliative care nurse wanted me to see PCP to make sure I was ok to wait. He is the one that said I have congestive heart failure - he heard wheeing in my lungs indicating fluid is there.
Don't think this is the Xeloda as I started taking it 5 days later - in trouble before that. Have any of you had congestive heart failure?
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Nan - so sorry you have to deal with the CHF on top of everything else!! I am glad you are seeing a new onc. My thoughts are with you.
Sherry
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Naniam, I have no information on CHF but wanted you to know that I'm thinking of you.
Pat0
