All about Xeloda
Comments
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Hi, Helen, I'm only on 1500 twice a day and 7/7 so your dosage is much higher than mine. I get scans next month and we'll see what we see. I was started on 14/7, but HFS just got to be too much. I really couldn't see myself able to keep it up. So far, the 7/7 is much better SE wise, but will it work? Time will tell.
xoxoxox
Ellie0 -
Oh, Mutherflush, I love reading this! I'm hoping for the same kind of good news when I get scanned in a few more weeks!
hope all you beautiful ladies have a great weekend!0 -
Sue, I too just got taken odd of X the other day. My Pet showed my breast mass has increased in size by double in 4 weeks and now I have a 2nd tumor. I am am being put on two new IV forms of chemo I have never heard of and we will just see what happens.. Prayers to all of you ladies!0 -
That's a bummer sherbab. I know we both wanted this one to work. I'm just finding it hard to start yet another new drug when I was getting used to this one. Let's pray that this next one is the magic bullet for both of us. God bless.
Sue
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Hi Ellie. I know my dosage is high but they calculate it on the surface area of your body. I'm quite tall and not fat but quite well built. They lowered my dose by 25% from 5000 per day. My onc did not say 7/7 would not work but she was reluctant to change because of the scan results. I wish you loads of luck with your scans and please let me know how it goes.
Big hugs Helen0 -
Mutherflush! I'm so happy to hear your news! Congratulations. I'm so glad that the X worked so well for you. Hoping for continued good results for you.0 -
Worried. I eat and then I feel incredibly, uncomfortably full through my thoracic area. The pain and palpable lesions went away when I started X, but I fear something is growing and filling me up. Also makes it hard to sleep on my right side because I feel like my vena cava is getting kinked.0 -
I'm so sorry, Dancing, I haven't had that sensation, but know what the fear is. I hope you're seeing your onc soon to get some answers. Prayers flying your way for comfort and resolution.
xoxoxo
Calico0 -
Dancing, I lost a lot of weight on X. One of the SE's is loss of appetite and like you, I'd eat half a sandwich and feel like I was stuffed. I'm guessing it's just another one of the weird SE's. Nothing ever showed up on my scans for stomach/intestinal issues PTL.
Sue
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So happy for Helen's great news, and hoping that for the girls that have to switch, that the next chemo just kicks butt!!!
I'm on 1000 mg of X twice a day, 14 on and 7 off...have had no HFS at all. Nothing. And, I've been on it a year, and it seems to be working, i.e., "stable" and some regression! I have my next CT in December, so getting nervous, as I really don't want to have to get off this chemo.
I will say, sometimes the pure fatigue from this drugs just knocks me off my feet. I really fight that.0 -
I started my 2nd cycle today, 1500mg twice a day, 14/7. I notice that my bone pain has improved. I can even take a step or two without a cane or a walker! Towards the last day of my first cycle, I felt some tingling/needling on my hands. I hope that this cycle goes smoothly.
DancingVeggie, I hear you about the worries. I do not have any experience. I pray that you get it sorted out quickly.0 -
Hansaim -
I had terrible bone pain in a particular spot in my spine before Xeloda. I mean, it would make me cry because it was so intense. Since I've been on Xeloda, that pain has all but disappeared. It's been quite amazing, and I'm positive it's the Xeloda that did it. When I had my last PET scan in May, they said, "positive response in the bones, and positive response in the lungs". So - hope this trend continues for you!!!! I also can breathe a LOT better after introducing Xeloda. When it works, it WORKS.
Hugs,
LL0 -
LizLemon, thank you for the encouraging story. I have extensive mets in my pelvis which is very painful when I put weight on. My spine mets are achy but not intense pain. I am not in pain when not moving, thus, put on over 10 LB since summer!0 -
Good news today! After 2 cycles tumor markers are down! Yay! Feeling good on my week off (just in time for Thanksgiving since I don't want to eat when I'm on the X) 2 more (14/7) cycles before my next CT scan. I'm feeling much better though - SOB has been going away.
Dancing - when I first started X, I also felt very full when I ate - had pain. I went back on omeprazole (Prilosec) and it helped. Also Gas X helped. I have to eat very small meals - have lost about 8 pounds overall in the last few months.
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Helen.....that is fabulous news, just what we all want to hear....:)
Sherbab....sorry to hear your news, I have everything crossed that your next chemo works...x
Lizlemon...scanxiety sucks but good luck for a positive result.
I have my next scans in 4 weeks. Been on X for 9 months now & can't help thinking it's got to be getting close to not working......glass half empty thinking! I really, really want to stay on it as long as possible, it gives such a good quality of life compared to IV chemos......my side effects have been so minimal & have only a very small dose of hand/foot. So fingers crossed it's still working.
(((Hugs))) to everyone.
Karen xxx0 -
Dancing, I also have a lot of pain in my right side, mainly at the front. I call it rib pain, however it is also along the back. I do have a met in my T6 region and doctor seems to think it could be from that or perhaps from radiotherapy. I belong to another support group, and it appears that quite a few women have rib pain and most have been diagnosed with costo-condrytis (not sure if that is the correct spelling). I have trouble reaching over and also sleeping on my right hand side.
I hope you can get an answer to your pain and I do hope that it is not serious.
I saw my onc today and reported that I had gastro just over 2 weeks ago and I am still feeling a bit nauseous and have had the big D off and on as well. It is day 14 of my 14 day cycle and I decided not to take my X today and finish one day early. The onc gave me gastro stop and did another blood test and all appears fine, however I have to go back to see the onc in a week's time before I start my next cycle as the onc thinks that I may not have gastro and that X may be causing this in which case I will have to come off X. I said no way that is my life line!!! My feet are also pretty bad as well and my hands and fingernails are showing their toll as well. I have lost 4 kilo in the past 2 and a bit weeks (wahoo!!) however I haven't been trying to lose weight. I will get the result of my tumor markers next week as well so fingers crossed.0 -
Great news Motherflush and Loveforlife! Gives me hope that X will be effective here too!!
Sorry to hear your news, Sue & Sherbarb, that sucks, and starting a new chemo is always an anxious time, but I hope you both find your silver bullets!
I'm on day 7 of my first cycle. Started on a really low dose for the first week of 500mg twice a day, from tomorrow I go onto 1000mg, then if I tolerate the se's ok, they'll take it up to 1250 or 1500. So no real se's yet, but I have been having tummy aches, nothing major, except this morning was not great, but it's easing now. I wonder what our equivalent of GasX is here, I'll go ask my pharmacist, thanks for the tip!
Karen, will be holding everything for your scan, I know that feeling of "it's not going to be good news", but I'm hoping it will be. I guess that it's just a reality for us that no chemo will keep working forever, but it sounds like your qol has been good, and that is such a bonus, long may it last.
I spoke about the Taxotere & X combo and he said he wouldn't want to give me the Tax as the se's are harsh and he wants to keep my qol good as long as possible. So I'm really hoping the X will slow down the growth of my lung mets, or even better, shrink them, if not blast them into the next dimension!!0 -
Thanks, MileHigh and Hansaim: one omeprazole did the trick. Don't know why I ever discontinued it but I've learned my lesson. Thank you!0 -
Sherbab, I, too, had growth of tumor on X, but ever so slightly. I've been off for 3 weeks in preparation for my surgery, and in the last week, the tumor really seems to have grown faster. next Monday is my surgery, so I don't know if 4 wks off X has given it time to spread anywhere other than the breast.
My currant MO is my 2nd opinion . First one wanted me on carbo/Gemzar with X as 2nd choice. Currant MO decided X would be better since there was not a good amount of time from 1st round of chemo. After surgery, I will probably be put on IV again, depending on pathology report. But Carbo/gemzar seems to be the likely choice. Keep us posted on your journey. Are you on other threads? you can always pm me.0 -
Is anyone absolutely exhausted on X??
I have been so tired lately - I've been on X for nearly 10 months now - but haven't felt like this before
I sleep 11 or 12 hours a night & then am having nana naps in the afternoon or falling asleep on the couch at 6.00 pm!!
I'm getting fed up to be honest & wonder if it's just the X or the cancer spreading!!
Anyone with this issue.
Thanks girls
(((Hugs))) Karen xxx0 -
Hi, Karen, I've only been on X since September, but am finding myself having to take naps whereas I never would allow myself naps before. I'd push through any tiredness, but can't muster that now. I think part of it is the pain in hands and feet saps my enthusiasm for doing anything except sleep. On Wednesday, I slept from 2:30pm to 5pm, ate some dinner, and then back to bed until 6am the next morning. Pre-X, I never would have done that.
Pre-X, tumor markers had been a reliable indicator for me with respect to cancer activity. At last check a few weeks ago, my CA 27.29 was in free-fall, whereas the CEA increased 50%. Nobody's been able to shed any light on what that might mean, so I'm in the dark about cancer remission/progression until the next scan in December.
It's a shame the side effects we have to endure in cancer treatment. Wish researchers would pay more attention to that.
xoxox
Calico0 -
Karen - I'm definitely feeling fatigue from X, and I've only just started my third cycle! ZZZZZZZZZZZZZZZZZZZZZZZZZzz0 -
Fatigue here, too. I will finish my second cycle tomorrow.0 -
I complained about fatigue and received an RX for Ritalin. I have just started it but it seems to improve the fatigue.
A friend of mine who is an oncologist says that you can request having 5-FU IV instead of Xeloda. It's the same thing and it isn't as ass-kicking, to quote him.
Lastly, for any younger women out there: Xeloda does NOT suppress your ovaries! I knew I was feeling like I had estrogen (and testosterone...RAWR!) lately, and here I am, a week before my oophorectomy with my PERIOD. Have had one in a year since being rediagnosed. My ovaries are waving the red flag! Weirdly, I'm sort of wistful about this being my last period ever. I will seriously miss estrogen.0 -
Does anyone have swelling feet and ankle? It is my day 10 of the 2nd cycle. My right foot and ankle are hugh and puffy.0 -
Has anyone heard of the 14 day on and 14 day off routine?
I asked my oncologist today about changing to 7 days on and 7 off due to nausea and my sore feet, and he disagreed telling me that I should go 14 on and 14 off.
I am a bit reluctant at the moment ....
I have been on X for over a year now and my tumor markers are down to 31 wahoo. .....0 -
Mandy, I've only heard of the 14/7 or 7/7. 14/14 is a new one. If you go through these posts, maybe a month back or so, there's a link I posted that talks about the 7/7 being just as effective as the 14/7. If you can find it, send a copy to your onc. Maybe it will change his mind. I did well on the 7/7. By the end of each chemo week, I could tell I was reaching my limit. I don't think I could have made it on the 14/14.
Hansaim, I had some ankle swelling in the early going of the X. It eventually went away. More of a nuisance than anything else.
Good luck to you both!
Sue0 -
Karen - sooooo tired much of the time; it is by far the most significant side effect for me. Mild hand-foot and skin issues. Starting on my 4th cycle (14/7).
Hansaim - also had some mild ankle swelling. Keep those feet up and have your family peel grapes!
I seem to be having the same reaction to xeloda as I did with the abraxane. TMs and CTCs went down initially, but now aren't budging. Eventually after about 8 months on the abraxane, the numbers started creeping up and I switched to xeloda. Why?why? Why? Sigh.0 -
Hi All,
Today I had my first PET scan since starting Xeloda four months ago. I couldn't even complete my first two cycles of Xeloda due to bad hand/foot. I asked Oncologist if I could switch to a 7/7 schedule but she insists on the 14/7. She has lowered my Xeloda dose twice now.
About two hours after having my scan this morning I got a phone call from a worker at the cancer clinic. She said "Your PET scan looks wonderful. You've had a great response to treatment."
Tomorrow I meet with Oncologist to find out the details but isn't this great news?
I've had a horrid summer with treatment side effects (Afinitor gave me lung problems and a botched bronchoscopy put me in the hospital) , losing my dog to cancer, my father dying and being started on my first chemo after being on hormonals since 2005. I was sure ready to hear some good news!
Yes, I'm still dealing with hand/foot but at a more tolerable level. Like some others who are taking Xeloda have said, we can put up with some of these side effects as long as it's beating back the cancer.
Kessala
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Wonderful news Kessala. Wish my scans had turned out as well. So glad for you!
Sue
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