All about Xeloda
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That totally makes sense, Leftfoot. If I got up at 5:30, I'd be pooped by 7 pm, too. My DD is in college, so I only have to worry about feeding the dog
.Lita
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Good evening - I just wanted to pop in to say unfortunately, I'm now officially off Xeloda due to increased tumor markers the past few times and progression seen on CT scan. I've been on Xeloda since May 2015 and hate to leave, although my hands and feet could use the change. I'll be starting Ibrance & Letrozole - hopefully late next week.
I wish all you ladies a great run on Xeloda! It was a manageable chemo for me. HFS was certainly cumulative, as it didn't get bad until I had been on it for 10 months or so.
Take care all -
Sheri
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16 months is a good run, Southern. Hope the next Tx works well for you.
Lita
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Thank you, Lita, for the well wishes!
Appreciated all of the good information I received on this thread. I was happy to be able to share our experiences- makes this difficult life with cancer more manageable!
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Hi my Xeloda chicas;
I am on my off Xeloda and I feel like I'm going to pass out. Diarrhea, cramps and pain in my arm. I'm freaking out, I can't stop thinking that I might having progression. My last scan a month ago wstaedthat I was stable.
Take good care of yourselves chicas.
Aziza
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theziz- it can take a bit to feel better. I normally don't feel great ( often at my worst) the first few days of my off week. Hang in there and I hope you feel better soo
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Ziz, I continue to feel increasing side effects during off week and then see some relief from the prior cycle 5 or so days into my next cycle. I hope this is what you are experiencing and not progression. I haven't had much in terms of diarrhea but when I did, it would crop up during my off week
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Hi Aziza,
Welcome to the wonderful world of Xeloda! My diarrhea has been an on-going issue (along w/hand and foot). Depends have become my best friend. (I keep a pair in a tote bag in my car at all times.) I NEVER know when it's going to hit, no matter what I eat. However, I have found that if I don't eat raw vegetables or anything really fibrous, I do a little better. I've had maybe 3 days in a row w/no diarrhea, then it comes back. Booooo!!!
Last night I had explosive D after eating chicken noodle soup! (DH says it might have been what I ate the day before...oatmeal with lots of raisins and a sprinkle of walnuts - very healthy, but it does have fiber, so that probably did it, sigh.) It can take 24 to 36 hrs for what you ate to go all the way thru your intestines (sorry for the biology lesson), so keep that in mind.
I've found that I sometimes feel the worst on my off week, too; and as JFL says, sometimes I don't feel semi-normal until day 5 of that week (which sucks). My MO told me this is because the toxic aspect of chemo starts to build up in your body, especially during the second week of Xeloda. It can take several days to clear out...it doesn't happen over night. When I go back on the next cycle, I feel pretty decent for the 1st and 2nd day, then it starts to get bad again. I actually started keeping a little journal (it helps me feel a bit more in control of this wretched situation). As your cycles continue, you'll get a better handle on what you can do and eat and what you can't.
As for the other symptoms, I get a lot of fatigue, too. During my second week, sometimes I get a little short of breath and light headed. My pain is ever-present, but that's because I have a lot of back and bone issues (5 compression fractures in my spine, 2 in my ribs, hip pain, etc.), and I have mets in the muscles adjacent to the spine.
If the pain in your arm continues in the next few weeks, talk to your MO about it. Hopefully it's NOT progression. Incidentally, my RO said you can have a bit of pain as the lesions and tumors start to die. I forget who it was, but someone on another thread said, "It's HEALING pain." I hope that's what's going on for you
).Hang in there, Ziz!
Lita
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Last couple of days have been rough. Nasty, crampy diarrhea yesterday and I didn't eat anything that should have brought it on. Today I was SO fatigued that I could barely get out of the LaZboy. It's only day 12 of cycle #7. If I feel this crappy now, I know my off week is going to be miserable too. MO said the effects accumulate the longer you've been on this chemo. Yippee.
Take care, my Xeloda sisters.
Lita
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Hello,
I have not posted on this tread ever and its been a long time since I posted at all. I have recently started xeloda , I just finished my second treatment a long with Herceptin . My second dose was delayed for about a month after my femur re fractured and I had to have rod and pin replaced from 3 years ago.
I am experiencing no appetite , I can usually eat in the morning but by supper I don't want food, and pain across my upper abdomen and sometimes down low too,worse at night, It is not pain pill painful just uncomfortable, I am bloated too, I have mets to liver and bones, So am very fearful of progression, Onc does not usually do scans until after 3 doses, I do have constipation not diarrhea but it is painfull to go someatimes. I take Senna so it its usually soft since I have started that.
Any one else have this issue ? I hate telling Onc cause I know what that means, More tests, I am not ready for that after just being in hospital for a week with my leg,
Thanks for sharing if you can
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Thanks chicas, after playing tennis and do Pilates and have a cup of coffee with a good friend unfelt better.
Ziz
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redroan- it is possible your body is adjusting to the new medication soon. It took several rounds before I felt like I had a "notmsl" on Xeloda. To this day almost 4. Years later I still have cycles that throw me for. a loop. I hope you feel better soon.
I would say that if you don't feel better soon thstvyou do need to call the doctor to be safe.
I am sorry you are experiencing this and hope you feel better soon
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Has anyone here on X experienced any incontinence?
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Thank you Leftfoot, I am not better, Had X-ray and Ct. With family practice dr and I feel like I should of had a baby and her name is Ascites, Onc is to be calling in the am to see where to from here, I am sure they will drain it .
Best of luck to you all. Being a little. Fearful ascites makes me think of end of life and I am not read
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Goldie...I have embarrassingly only had diarrhea incontinence. Not fun and very messy.
Redroan...praying for you.
Lita
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redroan-
Sorry to hear that. I hope you get some relief very soon.
Thinking of yo
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RedRoan, Every cycle on X is different for me. Just when you think you've got it under control and feel semi-normal, it changes. This cycle (#7), I had terrible fatigue. This is now my off week and my stomach has been hurting a lot
.Lita
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Lita, thank you for your response. My onc asked me if I were experiencing incontinence, so it made me wonder why he asked. But I don't think it was in reference to the big D!
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Thank you for the good thoughts, Had a paracenthesis Yesterday , they drained 5 liters of fluid, Wow what a difference, I can eat and breath, Feeling much better, Appetite is only fair but t least I can eat .
CT showed more growth on liver, so I will no longer be on xeloda, and Herceptin, He is going back to Adryamicin and ?, I heard the red devil and didn't hear much else, I have already had 6 doses of that, but he says we can and I am out of options so what do you do, He suggested going to Mayo or another facility, My insurance will not pay for Mayo as it is out of state. And I got the talk, I can quit chemo alltogether if I want, I still feel good, most of the time, work full time, I am not ready to quit but what do you do when you are out of options ?
Sorry for venting, Just a bit rattled today I guess.
Re
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Oh, Redroan, what can I say? I am so SAD for you!!!! (((Hugs)))
But all of us St IV gals know we're going to reach this unwelcome fork in the road some day...some of us sooner than others. You've had a good run, and hopefully they can find something else for you besides Mayo. Is there a place in your state you can go to for another opinion?
You may want to reach out to Stephanie (Longtermsurvivor) on the Death and Dying thread. She's been battling advanced cancer for over 20 years, dealing with ascites and draining her liver for a LONG time, been on hospice for almost a year, and she's still hanging in there. She is an inspiration!
Yes, you're going to have to start looking at the short game plan now. Because of all my extensive mets, I've gone to some preparing for "Death and Dying with Hope" seminars and "End of Life" planning classes, but I still haven't gotten around to filling out my POLST (Physician Orders for Life-Sustaining Treatments) sheet yet. DH has my advanced directive in our Living Trust binder, but I haven't filed the sheets w/the provider yet. I'm just NOT ready, even tho I know things are pretty bad. When you're only St I or II (or even III), you don't have to worry about this stuff...you just have to get thru the damn treatments, but St IV people have to deal with the Tx knowing that it's really only a "palliative" measure (just to buy yourself some more time), AND plan for the end. Sucks big time.
Incidentally, the MO gave me "the talk" before I even started ANY Tx because they went over my initial scan and there are mets in my liver, pancreas, adrenals, kidneys, bladder, as well as spine, hips, pelvic bones, and muscles adjacent to my spine. Second scan after 3 mos showed progression in lumbar and virtually no difference in organ tumors. So....we shall see what the next one coming up shows.
Right now, I guess all we can do is pray that we can make the best decision possible for the time being.
Keeping you in prayer, my dear. This is a very hard pill to swallow.
Lita
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Thank you Lila, I will look Stephanie up. Yes I can to another teaching Hospital for another opinion. It is 4 -5 hours away, I have been there once and we tried what they suggested, And here I am, So I don't know what I will do next, I started Adrimyacin and cytokines again today, Having hot flashes from the Des, I kind of forgot about that,
Thank you again and I wish you the best also, Prayers out to you and all .
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Lita I was reading your post about the Blood tests results, and Dani also has a portal but the CBC comes back no earlier than 4 days, and the Differential like 6 days, it's very annoying. This is in a major center. When I asked for the secr to just email me if it's good or bad, NP wrote that the portal is there for our convenience we should use it, translation - bug off. I was gonna make a whole thing about it, but there is so much going on re: her status, that I have no energy for this. Unfortunately, I know they will call when something is really bad. And btw, everyone there gets the BT done just before they go in for the chemo, I think they could tell right away, but they won't tell you. Power. Forget about all the news about patient as educated consumer blah, blah
Timothy hope your wife is feeling better, I will check soon the brain thread. Dani is having tons of IMRT to the Brain for about 10/12 treatments.
Redroan I felt very sad reading what's going on with you. Dani started Xeloda this week along with Herceptin/Ixempra. She has been on just about e/t. But she also works, and takes care of her family. It's been constant progression. Today, Ins person tells me: you know now that she maxed on 3rd line tx for mets, any other treatments with have to be doctor peer reviewed. I am so sick listening to her. First she is always pessimist. But even if she just wants to be honest with me, wth?? These so called docs that work for Ins, do not know the person/patient at all, she even told me they have a job as supposedly a doc wherever, and do the "decision making" when they see fit and how they see fit. What does this all mean.
Let us know, please, what you decide in terms of next step. Did you do a Genome testing, it could be done through a blood test, maybe that could guide them with other options?
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madame X still treating me well. I had my brain MRI and my body CT scan today. MO emailed both showed NED.
Feeling greatful.
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left foot so happy for you!!!! Great news
Bab
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Who do we love.....NED! Who do we love.....NED!
Congrats LFF!
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LFF, so happy for you and, Red Roan, so sad. RR, hoping the next step will be a good one for you.
I don't have the official word yet, but all indicators look like when I go in today my onc is going to switch me off of Xeloda. My tumor markers went from low 40's to 50 to 60 in 2 months and my bone scan looked to me like it was lighting up in new places. I had and easy time on Xeloda, able to walk a lot, almost no digestive problems at all, but after a good 11 months it looks like it failing me.
Wishing everyone still on it the very best of luck and nice long time of success!
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Hi Redroan.
If you are experiencing nausea on xeloda and you can't eat, I know the feeling. I was taking anti nausea pills and they only worked for a couple days, I would still get the dry heaves. The only thing that works is taking marijuana oil. I make rice-sized marijuana gel caps and take one every 2-3 hours. You won't feel the throw-up feeling, you'll want to eat because it makes you hungry and it is also good for a sleeping aid and pain. You will have to work your way up to taking it every few hours but boy does it ever make eating more enjoyable and no nausea😊 You can always try it. You have nothing to lose.
Hope this helps.
Have a fabulous day!!
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RedRoan, take awilson's advice. Medical Marijuana really works! I stopped taken it for a few days and my nausea and stomach pain came right back. Back on the tincture now.
Lita
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Thanks for the advice, I would have no idea where to get medical marrijuana, I don' t think it is legal in Iowa,
Mom all the time, Thank. You for your well thoughts, I hope your daughter does well, Insurance makes me angry and I have worked in health care forever, I did have good news . We can upgrade insurance in open enrollment and I can go to Mayo as of Nov 1st, Hope it is not to late for me, But I was excited about the news anyways.
Thanks you every one for the support,
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Good news, Red!
Lita
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