All about Xeloda
Comments
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Thanks, Joyner. My doctor mentioned a couple of choices for the next treatment. Xeloda is one of them, when we have to change. I hope to hang on to Ibrance a little longer but we'll see in a few weeks.
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I went on Ibrance briefly after mbc diagnosis in January. After it didn't work I switched to Xeloda. I haven't been scanned yet, that is coming up after 4 cycles. My markers are down slightly and was feeling better. This past week seem to have more abdominal pain and short of breath. I go for an echo next week but the shortness of breath is concerning, I am worrying about progression to lungs. I had a similar situation with Ibrance where it initially seemed to make me feel better and then not :-( So hoping that Xeloda is doing its thing but wondering what might be next if it isn't. Fight on fellow warriors :-)
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Thanks all. I will ask my onc about it to see if she knows of a side effect like swollen glands
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I'm new to this topic. about to start Xeloda after 3 months on faslodex and verzenio. The scan showed no new mets YAY! However the liver mets grew a little but the large one showed some necrosis. The Oncologist said she considered it a mixed result but mostly stable.
I am a candidate for liver resection but surgeon wants to wait until they see significant tumor regression hence switch to Xeloda. They explained it like this - taking out the whole right lobe is needed to get the 3 mets out. when the liver is regenerating the growth factor could cause any micro metastasis to grow, especially since I can't be on any cancer meds for a few weeks
I have 3 liver met tumors from primary neuroendocrine breast cancer. The largest is 4.9 cm
Started my metastasis journey at home in Alabama with advice to go straight to surgery. Got a second opinion at MD Anderson and chose their approach. So my home oncologist agreed to follow the MDA plan.
Glad there is a group like this to help answer questions, give tips and support.
Wished my first line did better because I tolerated it very well. She said a may get to come back to it some day in the future but she is trying to “get me to the OR” so Xeloda her I come.
In this to win this!!!
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Got my scan results today, and the good news is the SBRT worked completely on the liver tumors & lymph nodes radiated. Unfortunately, Xeloda has definitely failed me even at the higher 3000 mg dose, and a new small area of uptake in the liver (not a defined lesion) and 3 lymph nodes on the left side near(ish) heart are now lighting up. The radiation oncologist wants to do SBRT on those and then I will start gemcitabine to hopefully keep anything new from growing. I got a year out of Xeloda. I don't post a lot on this board but do lurk regularly. Hope Xeloda continues to work for a very long time for all of you.
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nbnotes, I'm sorry to hear about your progression. Glad you got a year out of it at least. I hope gemcitabine will be gentle and effective for you.
Good luck!
Hugs,
Ann
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Oh, NB, I'm so sorry for your news. Good luck with the new regimen!
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Nbnotes, wishing you the best on Gemzar. Can you tell me the reasoning behind using SBRT at this point? I ask because the liver guy suggested radiating the two new lesions in the liver with the idea that Xeloda is still working everywhere else in the liver. But my onc says the standard advice is just systemic treatment. I suppose if that does not change things we could look into radiation at that point. She was going to bring up my case at tumor board. I love that these smart oncs at my cancer center have a culture of bouncing ideas off each other. I am still thinking about this and have not formed a definite opinion about what I should do, and I have not heard a report about tumor board.
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Shetland -- I was NED for 3 1/2 years and in the 3 years that it had been back it had only been back in the 2 spots we radiated (1 liver tumor & a 2-3 lymph node area nearby) . The spots had waxed and waned over the years, and we had gone through multiple treatments. When it had grown again on Xeloda at end of March, I mentioned to my MO that I was concerned at how fast we were going through treatments with a relatively small tumor load. The radiation oncologist she worked with considered me a good candidate b/c it had only been in the those 2 places for all that time.
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So good to hear good news from several of you. Gives me hope. Sorry for those that need new treatment plans.
I've had 4 weeks off Xeloda and will restart with new dose (3000mg/day). Scan showed spine lesion reduced! YAY!
Really hope lower dosage lessens the SEs, abdominal pain being the worst of them. Just now going back and searching for recs for creams with urea, as my feet and hands continue to peel, even after all this time off! Not really worried about it -- just a nuisance.
On with living my best life in spite of SEs -- feeling truly grateful to have had so much time NED (4+ years). Want to get back to that status.
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nbnotes---in 2004 my liver was filled with tumors and I had to have a resection on the 8cm x 9cm tumor. I then went on Gemzar with Herceptin and my liver was cleared in 9 months.
My liver is still clear!
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Denny, amazing!! You're like a Joe Palooka doll!😁
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Denny, amazing!! You're like a Joe Palooka doll!😁
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Denny- that is amazing & it gives me such hope! Thanks for sharing
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Thanks! I have been very blessed!
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Pearl, Atrac Tain is a great Urea cream, has 10% in it and not very expensive. I think about $11.00 on Amazon. I found it in many of my left over creams used for 3 degree burns from rads back in 2008. I use it with some lotion or Aquaphor, and at night put on some gel slippers with my feet coated really well. It doesn't make it go away, but keeps your feet much more comfy.
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Hello all,
Started Xeloda and so far just having some mild pins and needles sensation in random parts of the body
Is anyone taking Xeloda also fighting Lymphadema that requires a glove and sleeve. Just wondered how that affects the hand and foot syndrome.
Thanks
Dee
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I have mild bi-lat lymphedema and don't need sleeves. So far no problems and I have been on X for 19 months. I do worry about the cracks in my fingers, and use Bacitracin and bandaids when needed.
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Has anyone with HFS pumiced their feet? in addition to gently snipping off the large peels, lotioning multiple times a day, and staying off them as much as possible, I have horrible peeling in sheets and big chunky callouses that break off. I hate how they look and feel.
I have been off X for one month (because of SEs like severe abdominal pain) and HFS has gotten worse in the last few weeks. I restart on Friday and I'm imagining my HFS will increase.
Or do I just accept my feet are this way for now and get over my obsession with them?
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I haven't pumiced, and my feet aren't as bad as yours....just chalky looking and sort of numb and tough, especially along the edges of my big toes. I get a pedicure monthly, and my technician uses a razor-like thing that takes off a lot of skin. She also scrubs with some sort of tough sponge, and it seems to work. My feet look and feel better for a while, though the bottom is sore the next day. Not too bad, though.
It seems to me that everyone has different reactions and levels of HFS.
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New info from MO and nurse about my terrible foot peeling. I've been using (in the past week or so) Atrac-Tain 10% urea cream. Turns out urea is a keratolytic that dissolves callouses, warts, skin. So I've been putting this stuff on that's actually causing more problems in terms of sheets of skin peeling off. I'm returning to using just plain Nivea cream beginning immediately. And MO gave me an extra week off before my next cycle to get my skin under control. Pretty happy about that.
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Hello everyone, This is my first post on this thread (I think). I just came off 6mos of Taxol. I started Zeloda this past Tues. So far no issues with the drug. My ONC stressed the importance of taking Zeloda exactly every 12 hrs. What do you guys do about scans? I have to take the slots that are available to me, so if my scan interferes with the dosing schedule, do you skip it ? Take it late?
I've read all of the dozens of tips on this thread, so I think I"m pretty much prepared. I've been living off the BRAT diet as a precaution for last three days. No stomach issues, but I've also been taking an anti-nausea pill which I had left over from IV chemo. I'd like to quit that though as it's causing constipation.
So, I'll be watching and praying for everyone
(Lynn, we were on Ibrance together...but just barely. It did not work for me)
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Starting Xeloda next week with herceptin. Kadcyla failed me. A bit bummed but I guess Kadcyla bought me 8 months. I’m hoping Xeloda will last me a bit longer.
F cancer
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Denny---Was just chit-chatting with my ONC on the way out of her office after an appointment. I said that I knew a women via the internet that has been MBC for 17yrs!!!! Onc said, Oh I can top that. I have a patient who's been MBC for 27years!!!!! Wow. See, you have ten more good years!
hugs
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Welcome, Snookie, and good luck on Xeloda!
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Nbnotes, I’m just getting back to you from August 16 above. It really makes sense to me that you did SBRT on those two liver lesions since everything else still looked good. I feel like I am in a similar position. We both have a fairly long record of NEAD or almost NEAD, so it seems like local therapy would likely not be wasted, so to speak. Even though I had extensive liver mets when diagnosed with mbc, only two tumors appear now. I would like to treat them with whatever local treatment the IR recommends, based on the idea that Xeloda is still controlling everywhere else. If something else pops up, then change the chemo as you are doing. I do not know if the tumor in or near the bile duct can be safely zapped but as I remember the liver/biliary guy thought it was worth looking into. (Haha, literally, I suppose.) I think it should be zapped because if it waxes and wanes with various treatments, I’ll keep needing to have the duct stent replaced. So now your IR is suggesting zapping your new spots, and not waiting to see what Gemzar does to them. I still like that. Don’t give them a chance to send out their minions.
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Shetland - I love your way of thinking about them as minions, and we want them squashed. We do seem to be fairly similar in regards to just the couple of spots waxing and waning, etc after having a lot of disease to begin with. I hope that you can get an IR (or does your cancer center have a radiation oncologist? That is who is actually doing mine) who will do some local therapy. I think for situations like ours that it has a pretty good track record. It wasn't fun necessarily, but I jumped on the chance to do it again - didn't have to think twice. If it could zap it all out once, it could do it again. And anytime you can slow organ involvement, that is a plus. Hope you are able to zap your problem spots as well.
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Thanks, Nancy. Yes, there is an IR who I consulted in the past about Y90/radioembolization. (We were setting up the mapping appointment but cancelled because of super response to Xeloda.) So I think he will be interested in doing some impressive zapping.
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Hi Fellow Warriors, I have been on Xeloda about 4 months now. Last month my ca 27-29 was down slightly to 130 now doubled this month. I am awaiting my cat scan results, until next week. Scanxiety sucks! I have to think the rise in markers is a bad sign. I'd like to stop worrying these days and get better rest at night. Love to you all, keep fighting
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snooky1954...Thanks! I do intend to do that!
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