All about Xeloda
Comments
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Denny,
I am Her2- and on xeloda, but I do have two ERBB2 mutations -- so I'm not positive, but I have these somatic mutations. Just something to think about. Will you have a biopsy to determine status?
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BevJen...thanks. I am going to call my chemo center tomorrow and ask if I can go up to 2500 a day. I received a letter from my health system warning me of a "significant abnormality". My onc wants to wait and see what the CT scan shows in 3 months but I am not a fan of waiting.
I imagine that he will want to do a biopsy. But I had 3 liver biopsies 19 years ago and they all missed the tumor.
The first 2 biopsies weren't too bad, but the third one was pure Hell.
I am thinking that if an increased Xeloda dose at least stabilizes it, that it could be a plan. Since I am watching my foods with folic acid, my feet are normal again. So an increased dose won't bother me too much....I think.
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Denny,
You should do what you feel comfortable with. Clearly, you've had much success in managing this disease. But I've got to think that biopsy techniques have improved in 19 years. I've had two liver biopsies in the past two years and they were fairly easy (I know it could have to do with location of the tumor.) Just keep this is the back of your mind. And good luck. I hope the dosage increase helps with stabilization.
Bev
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Denny, do I remember correctly that you are also on herceptin? Would that the affected?
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Bev...thanks for your input! The first biopsy hit my lung...the second missed the spot but was in my liver.
The location was the problem so the third one was done from my left side...through my abdomen clear to my liver on the right side. Each poke was like child birth times 100. It took 2 hours of poking and I ended up with internal bleeding.
And I had to have a liver resection of sections 7&8, so that area is gone now.
This new spot is at a different place...the left hepatic lobe. And there is another spot visible on the right hepatic lobe, but non-specific.
In 2004, my liver was so filled ith mets that I only had a year to live. I don't want to go through that stress again.
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Denny, I had a liver biopsy a yr and a half ago and they used ultrasound during the procedure. They also pushed air into my abdomen and then thought my diverticulosis had ruptured and couldn't figure out why I was still looking healthy but that is another story lol
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Denny- you and I sound very similar but you have more years than I. I was unable to biopsy my chest node and the repeat scan showed it was still there but bother/masked by all my pneumonitis. Wondering if it iHer2 - but will never know. Next scan in early OCT.
I’m in kadcyla with tucatinib for my current cancerZ mostly to keep brain Mets at bay. Not a lot of wiggle room due to brain Mets. Oncologist said I failed xeloda since I had one liver Mets develop in 2015. guess I wait and see
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Denny, I'm negative but what a conundrum for you. Whenever I start into a "poor me" funk, all I have to do is read here to see just how hard some really have it. Hopefully an increase in Xeloda is approved and it works!
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Thanks ladies!
Leftfoot...my 2 chest nodes could not be biopsied since they were behind my sternum. So they did a boodwork test for Foundation One and that showed that I had changed to Her2-.
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Denny- that’s great information. Thank you
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I'm sure this has been discussed before, but have any of you had hair loss after being on xeloda for a while? I've been on xeloda (very low dose) since July and have noticed a few stray hair here and there. But this morning when I brushed my hair, quite a bit came out. I'm not sure if it's the xeloda or the neratinib or the combo that's causing it. Also having been eating great on the xeloda and wondering if that could be affecting the hair issue.
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BevJen: I lost my hair on Taxotere. Since I have been on Xeloda it Is growing back - slowly but surely. I now am thinking about getting a haircut - imagine that. It has taken quite a while for my hair to grow back but it's really soft and somewhat wavy.
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BevJen, I had quite a bit of hair thinning in the early days but it seems to have settled down now. I’m still losing hair but I’m also growing new hair at about the same rate……….everywhere except the nether regions anyway
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Bevjen, I’ve been on X almost a year now, no significant thinning or loss, just slow growth due to this and/or Herceptin.
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BevJen, my hair is growing back on Madame X. I even get a haircut and have dyed it again. I also have to shave my legs again...something I hadn't had to do for several years.
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Bev, not I.
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BevJen...my hair thinned at first, but is okay now. It has always been thin and fine and 19+ years on chemo haven't helped.
I get about 5 hairs per leg.
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There seem to be no hard and fast rules on Xeloda! After massively bad SE’s when I started Xeloda and 3 dose reductions, my MO has agreed to try me taking the same dose I’ve been on (2600mg per day for 10 days) for 14 days to see if it will kick back the tiny progression with nodes in my lung lining increasing by 1 mm plus some fluid. I was terrified the fluid would just keep building over the last couple of weeks and put me in hospital again, but it seems to have settled. I’ve been away for a week in the outer Hebrides and even took a chance on flying back ( only a 45min flight compared to an 8hr drive and ferry). The fresh air was great for my lungs and although I’m now on day 11 and my hands/ feet are buzzing I hope I can manage the 14 days. 🤞
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Denny, If my hands and feet aren't buzzing, or numb, I'm wondering if Xeloda is working- so the SE is a reminder that it is working. I went from 3000 14/7 down to 2500 14/7 and now I'm going 5 days on, 2 days off, then 7/7 on 2500. It's better than going all the way down to 2000 a day and the Side Effects are less now with a break in the middle. Hope the increase works for you if you try it.
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Yay! My onc reluctantly approved for me to go up to 2,500 a day at 7/7. I want to hit the liver "spots" immediately and pray that the increase works.
I have no problem if my feet don't hurt. Now that I am carefully watching what I eat, I know that folic acid really makes a difference for me.
I bought lettuce at a local produce stand and it was light colored, but not iceberg. After eating it in large salads for a few days, my feet burned a bit. So then I knew to eat smaller salads with it, and not daily.
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Hope you do well and hopefully it works!
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I started X 8 days ago and have been using aquaphor or udderly smooth every time. I think it has already helped my SOB. My question is how do you handle the stickiness? It's quite messy. Do you immediately put on gloves and socks? Seems to soak up the ointment before it has time to work. I don't have any HFS yet, but the 12th day comes up this week. Trying to plan ahead. but not sure how to go about my day, especially trying to work as a pharmacist.
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Perhaps use Udderly during the day when you are working.
I am retired and on my computer all day since I have online stores. So when I am just typing, Aquaphor is okay. And it eventually sinks in.
When I have to handle something like fabric or paper, I wait for a bit until it sinks in.
Socks and gloves at night do soak up the Aquaphor so I use silicone socks and food service gloves.
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I just received the results from my scan. there is no change and am still stable so another 3 months on xeloda 😁
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Yay, Mis!!
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yay Mis
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Excellent news Mis,so happy for you!
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yay
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Yay Mls!!!!
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YIPPEE, MLS!!!!
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