All about Xeloda
Comments
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Letmywife, when I say minimal, I read that it makes a difference of 2% or so in stats. Research says it is a "negative prognostic indicator" but that makes it sound more significant than it is.
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letmywifelive- well I have been on herceptin twice. Both times it did a number on my heart so had to be discontinued. I was also on Tykerb for a bit, but a solitary tumor ended that as well.
But I have been off all Her2+ directed treatments since march if 2016 and xeloda is doing its job. I am thankful for that.
Each of us is unique. My body doesn't seem to tolerate the early her2 tratments. Good news for me is I haven't been in any of the new ones so I will have options if/ when xeloda stops working or I can no longer tolerate it.
I know how very lucky I am.
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Left,
You will continue your success with your current treatment. I am confident about that and also pray for you. We all need a treatment that works and if it is Xeloda which is keeping you well for a long time and you are tolerating it well, there is nothing more you need.
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Am I the only one on 2000 MG daily, 2 500 mg in the morning and 2 500 at night. No break?
I have not had HFS,(on it 6 months) and the only side effect has been hair loss.
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Fitzwins no break as no break after let's say 2 weeks? Hmm i never heard of no break? If it's so could it be you misunderstood instructions? The 2 500 day and 2 500 nt it's what my daughter has been on, 14 days / 7 days off.
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I'm on 2x500 am and 2x500pm also but 7 days on and 7 days off. Doing fine and wondering if I should go back to 14/7 schedule. I've also never heard of 'no break', but if you don't have too bad side effects then maybe it's good??
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Fitz, I'm on the same dosage as you but thankfully get a one week break. I just had a hellish weekend with hand/foot - felt like I was walking on hot coals. My face has broken out and my mouth and lips have nasty sores. I was in for a blood draw today and thankfully most results were normal. Just waiting to see if my onc is going to lower my dosage after discussing my SE.
I'm really surprised no break for you, especially because of the dosage. I'm happy to hear you're doing well.
Amy
Edit to ask Fitz, are you losing hair by the handfuls or complete overall hair loss? Thanks!
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I'm on cycle 11.2 (7 on, 7 off then 7 on, 7 off again...I go by the pill bottle for cycle #'s), and diarrhea has kicked in again as it usually does by the 3rd or 4th day. Doesn't matter what I eat. HFS isn't too bad. Everyone's different. I guess you either can't walk or you're on the crapper all day.
Fun times....and I've been really fatigued this cycle too.
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yes, no break... hair is just thinning
Doc say doing low dose as effective as high dose with weeks off????
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Fitz, how the heck do u do it without a break in between? I'm taking 1500 am and 1500 pm, so not that different from u, but I have to have my break.
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There is a study that found efficacy of 3,000 mg a day as good as 4,000 so I pointed this out to my onc who's researching and will get back to me about lowering my dosage. Even if she doesn't give me her blessing, I may take two less pills a day.
Lita, you're so funny...comparing sitting all day versus not being able to walk...they're exactly the same thing but I'd rather not have the other little pleasantries associated with diarrhea.
Have a great weekend all. I'm so grateful to be going into another weekend!
Amy
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Lita so sorry you are having these issues now. Hope it gets better soon!
Onco did a B12 test it showed 376 (not too bad), Ferritin 64.0 Iron 45 TIBC 431 UIBC 386 Iron Sat 10.0 . Sorry to bore you with these numbers, but Onco never did these BT before. I just saw it on the Portal. Does anyone know what that means? Why would they have done this now? Nothing is so crazy on the BT that I could tell that would make do these tests. Sodium is on the margin. Hmm, what would bring that on anyway? Onco does not deviate from the norm in BT they do every week, in the past I've asked for Vit D etc...they did not think important to do. So why this? Next week we have an appointment again, I could ask then, but would like to have some background info to be able to ask the right questions. Does anyone else also have low Iron on Xeloda? Thx for any info.
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There's clearly a severe lack in data as to the ideal dosage regimen. I know there have been meta analysis and comparison of some different dosages and intervals, but never a proper head to head trial completed. Luckily there is currently a trial to test 7 on 7 off. The unanswered questions remain as to how effective low dosages are, whether optimal dosage depends upon body weight and height (surface area) as is currently the practice, and what intervals work best and minimize side effects and improve compliance. At one extreme we have the original European recommendations of a fairly high dosage based on surface area, the lowered dose based on surface area approved of in North American and at the other extreme we have Memorial Sloan Kettering's theoretical work that suggests a high dose at 7 days on and 7 days off should be more effective and minimize side effects. As well we have University of Southern Calif medical centres that routinely prescribe xeloda at a flat dosage, regardless of body weight and height, at 1000mg 2x daily. Many unanswered questions, and the tendency of Onc's to simply prescribe at the highest tolerable dosage. There are papers on the subject of Europeans vs North Americans and the difference in side effects at the originally prescribed dosage. Speculation is that dietary differences (folates) might make North Americans metabolize it differently, and require lower dosages.
I know that my wife can tolerate a higher dosage at 7 on and 7 off that she can at 14 on and 7 off, or even 14 on and 14 off. The rate at which her tumor markers fall remains constant.
Fitztwins, I've never run across anything describing xeloda without a break. But I'm no expert. How are your neutrophil counts and other blood parameters?
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Interesting but not serious side effect of Xeloda...we have some new equipment at the hospital I work at that requires a fingerprint log in...due to the HFS from X I no longer have a fingerprint that can be recognized!....hope no one is suffering from the HFS without trying a steroid cream...it has made a world of difference for me (along with a dosage reduction
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Hmm, reading what you wrote, it's truly amazing. Which steroid cream do you use Stilts? my daughters tips are in pretty dire state.
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I've lost my fingerprints (and toenails) too.
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Momall--I am using Theraplex (non prescription moisturizer from Dermatologist) and Fluocinonide 0.05% steroid cream- usually apply 2 to 3 times daily- has made a world of difference for me !
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Glad to hear friends are still doing well....living...on xeloda! I used lots of your suggestions for hfs for my 80 year old aunt. I've been away for a long while, but when I agreed to start the vaccine/tea (psk) trial next week, felt the need to reconnect. Thinking of ya'll
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Ronnie- it's nice to hear from you .
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Ronnie, are you doing your trial through the Tumor Vaccine Group at UW? Please keep us updated. I am so interested to hear how the study goes. I hope it works wonders for you
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Ronnie
what is the tumor vaccine trial? What situation is it for? Reading my onc notes he is so negative its extremely depressing. He has never been an up person but now he has one of my feet in the grave & the other on a banana peel.
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sharethehope,
If your onc isn't going to provide you hope and optimism, we will. Take some time to peruse these board and in particular the thread started by our friend, Caryn, (exbrnxgrl) Life Does Not End with a Stage IV diagnosis (really)
These boards, these lovely people who contribute to them and the professionals and links to studies our Mods provide, all offer hope and optimism for me at least and i'm sure many others.
Hang in there sharethehope. Keep us posted on how you're doing and don't forget to ask questions if you're confused about anything. There are so many knowledgeable men and women here, it's truly amazing.
Amy
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Stilts thanks She is using Working Hands from O'keeffes at present. Heard of it?
Sharethehope it just makes me really sad you have to even look at someone like your Oncologist. It's wrong.
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So regarding some BT that were posted on the Portal, Low Iron on Xeloda? I still don't know why she decided to run these tests this week, will try to find out at this week's visit, but any of you had this experience. Yes Hemo is holding at 8, so what's the connection? Thx.
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Mom, don't know if this will help with Dani, but if your rbc count is low, your iron could also be low since the red cells actually carry the iron to the rest of the body. How has her rbc been doing?
My rbc is at an all time low and I've been very tired and haggard these last couple of cycles, and I'm in cycle #11. Always remember that the se's of chemo are cumulative because the stuff doesn't dissipate and leave your body that quickly. One can actually feel worse on an "off" week because all the toxins have been building up over the week.
If the MO is friendly, it might be worth sending a quick email and asking about the other bt's.
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Forgot to ask if hemo score 8 is within the normal range for that test. It's hard when you don't have all the pieces in front of you.
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If your hemoglobin goes below 8 that usually means you need a blood trans. As far as I'm concerned 8 is low enough for one.
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Lita so Hemo in her BT should be above 11.7 it has not been close to that in mos. but now it really came low, Sharethehope i think they would do transfusion if it hit 7. Her RBC is 2.49 also much below the norm for them which is 3.8 and up. But again it has not been there for the last few mos. It's just now it's kind bottoming out. The ANC is 1.6 also kinda low. Let's hope she could get her infusions this week.
What bothered me is that 2 weeks now was just as low a bit even lower, and they did not give the Herceptin or Ixempra but did not tell her anything about not taking the Xeloda,isn't it strange? I would think that the Xeloda is the number that is bringing this down like that. Thank you for all your help.
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Did you ever have an issue with low sodium? Any quick ideas how to make it better. Tomorrow is infusion day, all the #s are lowish, so I hope they do what they gotta do.
Also, there is a compression on the T vertebrae near the cervical spine, severely narrowing of the neural foramen, and it's making her arm numb, so did anyone here have any such issues, how was it taken care of? Thx a lot.
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Momall, I had very low sodium for a while (even now a bit low). It would make me feel like I could faint. I would actually keep potato chips on hand. Upping the salt in my diet helped.
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