All about Xeloda
Comments
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My liver numbers are over normal, but not by much. Onc said it could be the ibuprofen ive been taking for pain or even the xeloda I didn't notice the rdw so didn't ask at the time.
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Here's a pretty good explanation of RDW. If you're anemic (as we may be from chemo, your RDW can be high).
http://www.medfriendly.com/redcelldistributionwidth.html
Mine was high towards the end of my DD AC last summer (19.2) then returned to about 12. Now it's hovering around 14.
My AST and ALT were high last summer at the same time as my high RDW. Right now they are on the low end of normal.
I started round 2 of X on Tuesday and will have labs drawn this Wednesday. I'm doing 1500 mg X 2 on the 14/7 schedule and so far, my SEs are a little heartburn and my esophagus is sensitive...it doesn't like spicy food and red wine. No sign of HFS or fatigue {{{knocking on wood}}}
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The fatigue hit me hard on my week off. I'm on day 4 of round 3. Feeling kind of crummy but can't put my finger on exactly why. Fatigue is gone....thank goodness. Just feeling yucky.
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I'm on day 2 of ON week. Didn't want to get off the couch. Fingers are peeling on the tips, so lots of cream today. Better tonight. At one point my head hurt and I don't get headaches. However, ibuprofen fixed that.
Part of my fatigue was hitting it too hard yesterday. My son wanted some friends over to watch the UFC fight, so I made snacks, etc. cleaned up. My back was killing me by the time I went to bed.
So I paid the price today. Should be better tomorrow.0 -
Glad to hear I'm not alone in the fatigue and Frapp you describe how I feel Crummy! My eyes really burn today. So far, nothing over the counter helps. Have a call in to ask eye dr what might help. Wishing all of us good thoughts.
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must be in the air fatigue had me down most of the day had mri today and neuro on thrus ok here a weird what is a cycle? they changed my dose i'm on 2000 a day still a low dose but with all the antibiotics i'm on i think he's playing it safe
Frapp did the link i sent help it explains it better than me? hope tomorrow brings more energy for all of us
love and blessings
Chris
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Saw my onc today and my CEA more than doubled. Sigh! I'm feeling really good, though, and my bone pain is almost all gone, so he wants to give it time to see if it's just a flare. I've only taken it 3 weeks total so I haven't been on it that long. It sure was disappointing, though, to hear that number when I expected it to have gone down. He also said I may need another chemo along with it to get the results we want. Oh, lovely! He also wasn't much concerned about my side effects. lol Just not his thing. Good thing I have you ladies to help me deal with them.
I also got my Aredia infusion today and barely made it through because my arm hurt so much. It's worse each time, so I'm either going to have to let them use my other arm and risk lymphedema or get a port. I won't be able to stand the pain much longer. My whole arm feels as if it's cramping from my finger tips to my shoulder. Stupid veins!!! Really???
On a more positive note, I changed chairs today to have a new view while getting my infusion and it helped me feel a tad less impatient to get the hell out of there. lol I'm really starting to not want to to be there anymore and this is just the start of my infusion room journey. I've been going there monthly for a year and a half, but only once a month for 3 hours. I don't know what I'll do when I have to start IV chemo. Lose my mind? Maybe, I just need a really, really, good book instead of hanging out on the internet. I've even imagined how I would redecorate it if I could. lol I would prefer more of a spa experience actually. I did take my own blanket today after reading that some of you do, and I liked it better because it's much warmer than their hospital like blankets. It was so cold in there. At least, with a port, I'll be able to keep a jacket on. Trying to find the positive!
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Well, saw the doc and she confirmed that my scans were stable....after 7 cycles, I thought I would be in for more than stable...no progression, but no shrinkage. Then they did my CEA. That is the only testt hat seems to be a good indicator for me. It has shot up. I was 4.8 2 months ago...my higest had been 6.8 when they found the progression...then 5.0 last month and 8.6 this month. CRAP!!!!! So doc wants to redraw in one month and make sure it is not a fluke and if it is still high, then we go for the immediate PET scan. sigh.
Thought she might change my dosage or something, but now we have one month of waiting.
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Kimberly - I guess you and I are both waiting.... I hope we both get good news next month!
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I'm seeing my MO today and she'll do the CA27.29. That's been the test for me that shows if there's trouble. My last one was 55 (still low by most Stage IV standards but we caught these mets early). I'll know the results on Friday. It's probably too soon to expect any really good news - 1 1/2 cycles - unless this is a miracle drug for me. I'm having a PET scan next month, too. We'll all be ladies in waiting!
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My CEA came back today and showed an improvement from 10.7 to 6.8. YEA!!! That at least helps with the nausea and fatigue I seem to be having this round. Just want to curl up in bed and sleep for 24 hours.
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Frapp, great news on CEA. Get some rest.
LuvRVing, good luck Friday. Hope you get good results.0 -
Thanks, Swannay! She said she may have the results later today or tomorrow so that would be great.
And getting back to the discussion about RDW levels, mine are up to 16.4. I asked her about the significance and she said that it is a reflection of chemo's effect on the production of red cells and their size. I think someone else mentioned this. Anyways, she said it's normal for people on chemo and not a concern.
I don't have to go back for 5 weeks which is a nice break from the weekly visits, and I have a PET/CT scheduled for 8/7.
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I have also been told that my red cells have increased in size. My doc put me on B12 and I'm no longer anemic. Have another PET on 8/6....hopefully I'm still NED.
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I go for a PET tomorrow-the second one since I have started X and Tykerb-I think I have done 7 cycles. Not amazing results back in April but we decided to do 3 more months. Hoping for at least stable. My side effects have been minimal since taking off a complete cycle. Still riding that wave of good health that being chemo free for a month gave me I guess.
I will get my results Tuesday. ever since I saw that lady post she had been on this for 29 months I have been so hopeful...
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Well crap and phooey. My fingernails are starting to separate from the tip down. I noticed a strange feeling these last couple days and also a difference in pink. They don't look bad to the average eye and I've clipped them short.
Once that starts is there anything that slows or stops it? Bottom of my feet are peeling a layer of skin, especially after a nice soak. Just slathered them up.
I'm reduced to 3000mg a day, wonder if we'll go lower when I see the onc in about 10 days. That will depend on the scan for sure.0 -
Cynthia: So sorry about your pain from the Aredia!! Good idea about changing your seat. I will have to try that. I usually try to sit up "front" so the nurses can see me. I'm sure they see everyone, but I have it in my mind that I'll get out of there sooner if they don't "forget" I'm there sometimes. Anyway, the room has tons of windows - although I think they all overlook a parking lot. Still a change of scenery might be good.
Frapp: Great news on the CEA. Hope the nausea and fatigue ease soon!
Chickadee: Sorry about your nails. I never had that se, so can't help. I remember my feet peeling like that at first. A dose reduction did help a lot! Hope it will for you too.
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Chickadee: My nails started doing that too a while ago, but only a little bit and then stopped. I was afraid I'd get infections under them. All the skin around the nailbed is pulled so tight it has distorted the way my nails used to look. It looks like a creepy, arthritic witch....lol.
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Bump for Alice71053
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So I took 100mg of Vit B6 and 3000mg of B12 last night. Feeling much better today. Not near as fatigued or nauseous. Not sure if it was the vitamins or if it was just time but I'll take it. I didn't spend the day wondering if I was going to loose my stomach. Think I'll keep it up to see how it goes.
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Chickadee - Sorry about the nails. What a pain! I hope they stop lifting like they did for Seamstress. My feet are more flaky than peeling per se, especially between my toes. Keeping a lot of lotion on them does seem to help for now.
Frapp - Glad your stomach is feeling better. It's never fun to feel that way. I've haven't been as nauseous as I was that first week, but I still feel queasy at random times. Very strange.
Lynn - Great to see you posting again! So glad your port surgery went well. I'm pretty sure I'm going to have to do it soon. I just need to work up the energy to get the ball rolling. I hope it stops hurting soon.
Seamstress - Sorry to hear about your nails. It's so weird some of the things Xeloda causes.
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Feeling so much more like myself today. Was able to get out of bed and actually felt refreshed and so far no nausea. This is day 9 of round 3. I'm looking forward to it staying this way for another week. Still no signs of peeling feet or hands but my feet last night looked purple on the top. I've been noticing skin discolorations and dark spots here and there. Will be happy if they stay off my face. I have one on the bridge of my nose I can stand but really hope he doesn't invite any friends to join.
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Glad you're feeling better, Frapp. I'm still hanging in there with few SEs except the irritated esophagus and a little heartburn (taking prilosec for that). And one other thing...did someone mentioned chapped, peeling lips? I thought I might have sunburned mine (we live on a lake) but this has been going on for a couple of weeks now. I thought maybe I read someone else had this problem. Suzy chapstick isn't working all that well. And I have one with a 45 spf but I'm still oozy and peeling a bit, as if I had a cold sore. I'm taking a gram of Valtrex a day, so I don't think it's a cold sore.
I got the discount card from Genentech and my Xeloda co-pay is now just $5. That's a mighty good deal. I highly recommend you check it out:
http://www.xeloda.com/financial/co-pay-program/
This works with Express-Scripts (CuraScript for the specialty meds). My co-pay went from $25 to $5.
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good luck gals.. i haven't visited this thread for ages. I remember how harsh Xeloda was, expecially on the hands and feet. I'm grateful it worked so long.
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Frapp, So happy for your great news! Have a nice weekend.Penny
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LuvRVing, I have had dry burning lips also. I find applying the udder cream several times a day helps
me. Talked to my onc today about side effects and he lowered my dose by 1 pill. Now at two pills morn. 3 at night. Hope it helps. I'm in middle of third cycle. Also talked to my eye dr about dry eyes. She told me to try the new systane gel drops. Hope this helps someone.0 -
LuvRVing....I had the chapped lips for a couple of rounds and it is now gone. It's like a small kid that constantly licks the upper lip. I kept a medicated chap lip from Nivea called a kiss of recovery on them that seemed to help a bit but you have to get ahead of it and use every time you think of it. I think you body will eventually get use to it and it will stop. I have not had that probelm at all for this round.
Unfortunately I don't qualify for the card because I live in MA. I don't know why we and Vermont are exempt. Luckily I have fairly good insurance so it "only" costs me $50 every 3 weeks.
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I think I had chapped lips either the last round or the one before. It felt wind burned. Lotion helped until it went away. I started X again today. My hands and feet still have HFS so this will be interesting to see how bad it gets. I'm hoping my body will just adjust eventually and it will improve or go away.
The copay programs don't work for me since my ins won't pay anything once my benefits are used up because then it's no longer a copay issue. Does that make sense? The pharmacy will ask the manufacturer if it will cover the cost of my meds when this bottle is finished. So, I should know within a couple of weeks if I'll be able to continue on X.0 -
No chapped lips here, but the bottom of my feet need lots of attention and I've been lazy about it.
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These random SEs drive me mad! On third cycle and have almost constant nausea and tiredness but feet ok. Last cycle I was wide awake but my feet were in shreds. And I'm neutropenic. What next!!!
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