All about Xeloda
Comments
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Nor am I a fan and in fact am on a break, now a month in length. Hand/foot syndrome just is not appropriate for a formally active woman like myself. More later...
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Sheila, Is your oncologist aware of the severe SEs you are experiencing? It sounds like it might be time to try a reduced dose to see if that helps. It has made a difference for many others. QOL is important to us.
Hugs and prayers from, Lynne
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girls,
what dose are you taking xeloda
raven
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Sheila Marie, ditto on what Lynne said. I had to reduce my dose twice.
Well ladies, my Pet Scan results are weird! Mixed results in the bone mets, some have shrunk, some are growing. However, the really scary thing he noted was several heterogeneous cells in my liver, kidneys, pancreas and spleen with Suv uptake. No "eyes" yet. Meaning solid tumors. Does anyone know what this means? I'm trying to stay upbeat , but I'm not succeeding.
Claudia
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Haven’t told oncologist yet. Guess it’s time I put in a call. What reduced dosage are y’all on? Given my history, I’m scared it won’t work if I tamper with it at all.
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I think 1500mgs in a.m. and 1000mgs in pm
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Claudia, I wish I could help by telling you what the notes in your PET scan report mean. Unfortunately, I don't have a clue. I am hoping that it's one of those things that sounds bad, confusing or important but is really just a notation of something unusual but harmless observed while interpreting the scan. I have had several unnecessary scares during the past 3 1/2 years. When will you be able to talk to your oncologist about the results? I will keep you in my prayers.
Sheila, What dosage are you taking and with what frequency? There have been studies done that show that 7 days on/7 days off is as effective as 14 days on/7 days off with far fewer SEs. Studies have also shown that a lower dose is as effective as the higher doses that some people get. I have only been on Xeloda for a few months and have been lucky enough to have few SEs. I am still on 1500 mg in the morning and 1500 mg at night - 7 days on/7 days off. My MO and his nurses have told me that they would reduce the dose if I have severe SEs. Think about this. If you have severe nausea and/or vomiting, you are not getting the nourishment you need to stay strong. If you are having episodses of vomiting, you might not be retaining or absorbing your full dose of Xeloda. It sounds like you need either a reduced dose or better medications to control the SEs you are experiencing. Either way, it is a good idea to let your MO know what you are experiencing. You deserve to feel better.
Hugs and prayers from, Lynne
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My feet got sorre 7 days in, as well as very dry eyes, constipation, red spots on face...there were 6 things that I emailed the oncologist about. Most of it tolerable except the eyes. I emailed bc I thought only 7 days of it, how bad is it going to get?? Well as usual he said he didn't believe any of it was from Xeloda and to just keep going. So I reduced it myself from 6 pills to 5 pills. Never had problems again but the eyes took at least 3 months to feel better. I was surprised that only reducing one pill made that much of a difference. How well it worked was a different story but that is highly individual.
For nausea, I would ask for some meds like Zofran or anything that will help that. If I throw up once I am on the phone! If I can't get rid of it I would just not take iit because I'm a big wimp and throwing up is the worst!!
Good luck to you all. Some people have been on it for years so just find the right dose and if it works you could get a long time of nice mostly normal life!
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Claudia, it's very scary when you things that in the organs. I have something with the liver also that does not look like Mets but looks like cirrosis. I am getting a liver consult. oncologist highly doubt it cirrosis and says my liver blood work is all ok. He wanted to start chemo and if it helped then we would know it was cancer and if not, go from there. We'll I had chemo yesterday and when I got home he called and said he's going to ask for the hep consult. I think he was looking more thoroughly at my reports and stuff bc I've been bugging him for a month about it.
Other than that, I rarely worry if I see something odd, and although I have access to my records, I don't look at them until I see him. I did that once and had myself all worked up and it turned out to be a good scan.
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50s, I’m taking 2000 mg in am, 2000 mg in pm, 14 on, 7 off. It seems like a lot.
On another note, a positive note, radiation has worked miracles on my back and pelvis and I haven’t taken any breakthrough pain meds in 5 days I’m thinking it may be time to reduce my fentanyl patch as well.
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HLB, I guess part of the funny thing about this, it's my husband's daughter, so when you say they were never taught.....LOL. But he could have said something. But because of her size, she does nothing. Her husband does EVERYTHING for her, and I mean EVERYTHING!
Arolsson, I have found nothing that helps with the HFS, other than just keeping them moisturized, you can only accomidate it, you can't make it go away. I don't have nausea, but the CBD helps me tremendously with the "D".
Sheila ^^^^^ RE: CBD. Doses are different for everyone. I take 5 pills a day, 3/2 500 mg ea. I do 2 pills in the morning and can do it with no food, then 3 at dinner. It.'s been over 4 years that I have been on X. Some of the symptoms I got in the beginning, I don't have anymore, biggest one is the HFS. Ok, I see you take 8 pills a day...wowsa! I couldn't tolerate 7, and even 6 pills I had a horrible itchy rash over 75% of my body.
What MG are gals on? If it's high dose, you can reduce.
Big, sorry about the scary scans, but I don't have any clue what it means.
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I am off Xeloda now but was on it for over 5 years.
For those of you new to the drug, I found the first few cycles ( 3-4) the hardest. I had Basra that went away in later cycles. I just remember the adjustment period was hard. My body did adjust and things leveled out. I also had a rash the first few cycles. That too went away.
As others have said- call the ZmO snd report your symptoms. They can adjust the dose or schedule to help you. I know I adjusted my dose twice.
I am sorry that things are hard and hope things get better. Xeloda really worked for me for many years.
Best wishes.
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I am only on 2,000 a day at one week on and one week off, and have been on X for 10 months. TG, no nausea or diarrhea. (Kadcyla for 4 years has made me permanently constipated, so I have to rely on Miralax and stool softeners every evening).
So far, still NED after almost 17 years of MBC de novo. My NED came from 8 days on a clinical trial of Poziotinib last January.
My SE's usually occur mid-week on my week off. Last month I had chemo-induced gout for a few weeks. And I keep getting cracks in my toe-pits. Currently have a little toe-pit crack and a 1 1/2" crack in the bottom of the same foot. I use Betadine and bandaids on the cracks. Aquaphor or Udderly smooth applied every 4 hours or so.
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Denny, given your goat Chad cracks in your feet, how do you find walking and so on? After four cycles I found that the cracks and the pain along with cracks down beside my fingernails made it unacceptable for me. I was really active one and a half years ago when I led my last trek in Nepal. I have always had a bad knee but with physio over the last decade I was able to stay active and trekking (albeit slowly!) but now the mets and drugs have knocked me back so much. I have been on a Xeloda break for over a month and looks like I will start IV Paclitaxel weekly December 6th. The other option was Everolimus and Exemestane combined.
Any comments or advice is welcome. My oncologist also says that we can keep Xeloda in our back pocket for the future.
Marian
I just read what I wrote and I noticed goat chad. I believe it should be gout and.
My mind is not working well and even though that mistake is minor, I am worried. no doubt pain meds don't help. I had my MRI yesterday and it was a trial as nurses never were available when needed for my port access then not there when they needed to inject the contrast so a tech managed to get an IV going then again no one there to flush port so another 20 minute wait. Should hear results early next week.
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Hi,
I am back on adjust doeses of Navelbline and now take 500mg in morning and 500mg in evening. It seams to be helping break up tumors but there is alot of debree in the liver causing high liver funtion and high TM.
I lost 4 nails and couldn´t walk so I had to stop these higher does. hope the lower dose will continue to do the same
Raven
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WARNING!!! Crazy question, and possibly TMI!!!
Has anyone experienced burning type pain in sensitive areas other than palms and soles of feet? Like your vaginal area?
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SheilaMarie -- I had issues with linings deteriorating/causing pain throughout my body on afinitor, and my MO has said we need to be watchful on Xeloda as well. She said it can be similar to issues with mouth lining/sores, etc; that it could happen to any lining.
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yeah, times it feels like a uti but when checked, it is not, think it is dryness
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Hi SheilaMarie,
I am finally almost detoxed from OxyContin and Oxycodone, so I'm wondering how well a Fentanyl patch works. If I can help it, I would like not to go back on the opioidsbecause they make me so tired, along with X, of course. Do they for pain? I know they are still a strong opioid med, but wondering if they make you tired too?
Thanks for any info.
Laurie
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Laurie -
Amazingly, the patch seems to have no side effects, which is something I appreciate. Good luck
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shelia mine is itching. Tried replens. Got an Rx for a steroid and antigungal. Wouldn’t surprise me if it’s dried out like the rest of me.
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hmmm, someone commented that they switch creams, so i pulled out the euceran skin calming cream, hands feeling good right now
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Marian- Sorry to be so late with my reply. The goa chad had me wondering but we all do that. I type all day long, and amazed at how many typos I make.
My gout cleared up after 2 weeks with constant use of ice packs. I am using Aquaphor more often and although it is greasy, it helps better than the Udderly Smooth does.
I sure don't do any hiking, and do a lot of walking, so that helps.
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Having serious skin sensitivity. Apparently I’m allergic to tegaderm. It literally burns my skin! My fentanyl patch causes slight irritation, and my (down under) reaction to a particular soap was AWFUL! Guess I need to be a bit more careful
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I can vouch for aveeno soap for down under. Then dry with blow dryer, no towel. Then a tiny bit of hydrocortisone cream. Worked in less than two days. This was prescribed by a doctor to me years ago when I had already used otc yeast inf treatment but was still burning and itching like crazy. Oh he also said keep my hands off! Lol
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How long has it taken you to feel as if Xeloda is working?? I’m so hopeful that it works for me, but it seems that I regularly get pain (pretty bad pain) in different areas and I always think I’ve developed another tumor. Igh
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I’ll try some aveeno soap. My go to for hands and feet is a&d ointment. Find it in the baby section. Big difference.
My scans came back great again so sticking with two pills a day/no break. Come back in April!
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Zills, congrats on the good scans. I'm still amazed at only 2 pills a day, w/o a break. But hey, if it's working why not! I did 3 pills a day, morning, afternoon and night, no break, but it didn't work for me. I hope you can continue with that regimen.
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Awesome.for all doing well.
I finished my 2nd round of xeloda and my markers are up.
Crap.
I think Im chemo resistant. ????
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I was told to talk to a IR docter. So afraid.
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