All about Xeloda
Comments
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Naniam
Thinking of you. I know you arent Her2+ but you might go to that forum and look of the Herceptin and heart attack thread or see if there is a CHF forum there. Some of us who had herceptin had SE that lowered our heart functions and some might have even made it into CFH. I came close but was caught in time. There might be some helpful information there. Most of us are on a beta blocker and ace inhibibitor to help our cardiac function and to protect against futher damage. I would definitely say you should get a referral to a cardiologist.
I hope they can make you feel better soon. You are in my thoughts.
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Naniam so sorry u are dealing with this too all the well wishing thoughts prayers and white light being sent your way!
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TweetyB422 - I take 8 MG of Zofran every six hours round the clock and if I have some days that I need something more I take Promethezine 3 hours after I have taken a Zofran but I keep taking the Zofran every 6 hours no matter what for about 10 days and I am on the 7 7 schedule. I take it the night before and then about 2 days or so after I finish. It has helped me to take it every 6 hours and not miss a dose if at all possible.
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Has anyone had neurological problems on Xeloda? I have had two episodes where I wake up from a nap, very weak and in an altered mental state. I alternate laughing and crying, am nauseous and my tongue feels like fiberglass. Slowly I return to myself.
MO said he didn't think it was the X, didn't think it was cancer, couldn't rule out stroke, so told me to take an aspirin.0 -
Although I am not stage IV, I have been following some of you on the Ixempra and Xeloda threads. I started the combination of Ixempra/Xeloda on April 23 for a local recurrence within 5 months of finishing treatment. I'm on a 3 - week cycle, starting Xeloda on the day of infusion for Ixempra. The Xeloda is 14/7.
My counts all tanked on day 14 of the first round of Xeloda and I had neupogen shots on day 15 and day 16. By day 17 WBC and ANC were well into normal range and though the RBC was a little low, the hemoglobin was pretty good. I only needed the 2 neupogen shots. So far, no real problems with hands or feet. I had bad constipation problems the first two weeks (but also had surgery to insert port that first week). I'm sure the Zofran was also a big contributor. I had a LOT of muscle and joint pain days 3-8 which was most likely from the Ixempra. Then again from the neulasta.
I think the Xeloda mainly makes me a little nauseous. Nothing too bad though and I try to stay away from the Zofran and compazine as much as possible. It also makes me very, very tired. That showed up in my RBC dropping with my WBC.
I had 3 good days before starting over again yesterday with the second round. My MO decided to reduce the Xeloda from 4,300 mg per day to 4,000 per day for this round to see if we can keep the counts a little higher (especially the ANC and one of the subcategories).
I have to say, the combination is kicking my behind! I have not been able to work with this chemo. With T/FAC I worked about 20 hours a week. That wasn't easy and I was very tired, but this seems much harder.
Hope this helps and thanks for all the posts. You women have really helped me understand what to expect from this.
Phyllis
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Naniam -
I am so sorry you are having heart problems. Please know I'm thinking of you, and hoping that your new doc is more attentive that your current Onc.
OBXK - When I was first on Xeloda, I would fall into these deep sleeps. They would just come over me, and I would basically pass out on the couch for several hours at night. I would wake up and feel like I'd been in a time warp. That doesn't really happen so much now. I think over time, my body has adjusted to it. Maybe this is what you're going through?
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Phyllis - I am so sorry you are having such a tough go on this treatment. I hope the reduction helps.
Liz - I have given DH permission to video me, the time I get loopy. I need to find that list of very rare x side effects. I'm always that girl.0 -
Phyllis- Have you heard of taking Claritan to help the bone/joint pain due to the neulasta? I hear it works wonders. I heard about taking Claritan to help out after I had finished with my shots. Many people I konw however swear it helps. Maybe this could help eliminate some of your SE with the meds.
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Yesterday was day 8 for me. Last evening all of a sudden my feet felt as if I had walked a mile in a bad pair of sandals (I hadn't). Not red, just hurt and feel as if they are full of callouses. I've been lotioning the heck out of them and did so several times before bed. Hurts to walk. This discomfort also woke me up in addition to stomach pains (no big D yet). So, will not take the morning dose and call the onc's office. That's what the instructions indicate to do. Not panicking yet, my understanding is the dose often needs adjustment.
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Syrmom, yes I take claritin with the neulasta. It takes the edge off of the pain but I still need Tylenol with it. For me it takes both of them.
So sorry about your feet and stomach. Sounds miserable for you. My feet are red but not painful so far and that comes and goes. I'm hoping stomach and muscle pain hold off until after my PT appt this morning. Hope your Dr helps soon.0 -
Nanium, I'm sorry you are dealing with CHF. I had some really disturbing/odd heart issues when I was on 14/7. Haven't had any problem since I've been on 7/7. Can't really say it had anything to do with the Xeloda, just going by circumstantial evidence I think Xeloda was the problem.
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Initially when my feet started to irritate me, I soaked them in cool after with Epsom salts. It's no cure for the damage being done but was a bit of relief.
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My feet used to do that too SyrMom. The good news is the pain usually only lasted a day or two, then onwards and upwards to some other SE. Xeloda is quite the mixed bag of tricks.
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Naniam - did you find out more at your onc visit? I hope the nurse was wrong about CHF but sometimes the experienced nurse can see things that docs miss. Let us know what you found out.
OBXK - I know this may sound simplistic but are your red counts low? For some people the symptoms of low RBC can be significant and emotional changes is one of them. Since it isn't common, a lot docs ignore low RBC as a cause of strange behavior. My onc always starts asking about these types of symptoms when the RBC starts getting in the significant low range.
phgraham - since you are not stage IV the onc is giving you a higher dose than what a stage IV woman would get. We are on maintenance levels that are trying to stabilize or even regress our mets without causing significant quality of life issues. Your situation is to be aggressive with the Xeloda dose and add the Ixempa in the hopes of eliminating or potentially curing your cancer. Since we can't be cured our treatment is different and even the supportive drugs can be different. For instance most oncs have no problem writing a script for a supportive drug that is addictive to a stage IV lady if it helps her. Addiction is a non-issue with a terminal illness. For us, it is all about quality of life.0 -
Christy - Thanks. Just had labs - they were within range.
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phgraham, Chickadee, Chele ... thanks for the info. Still haven't heard back from Onc, but know they say to stop as soon as painful or blistering ... hopefully this will leave as fast as it came on, gee. Will try the epson salts too. Seems like day 8 is awful soon.
Chele ... I understand you can get coronary artery spasms on Xeloda, often following or during exercise. Usually it's treated after a cardiac work up to make sure it's not really from cardiac issues; then, depending on the doctor, a calcium channel blocker may be prescribed.
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SyrMom -
Oh my gosh - I have never heard of this side effect of the coronary artery spasms. Thank you for posting that!!!!
LL
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I hadn't heard that either! Thanks for the info!
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LizLemon & Chele ... I found it interesting too. I went for a second opinion and happen to ask if there were any cardiac side effects from this med and he went on to explain his experience with several of his otherwise healthy patients. Both were runners and generally in good health except for the beast.
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Wow. Crazy meds. We never know what they will do to us, do we?
My BP would drop very low and my heart rate would not only drop in speed, but it felt like each beat took longer. It was very weird. I even bought a BP cuff to track it. I never fainted or anything dramatic, I would just feel weird.
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They lowered my dose to 1500mg am and pm to see if that would help the hand foot syndrome. This is my week off so I'm feeling a little better. Start back up on the 20th so we'll see how round 3 goes
Deyla0 -
I have been on xeloda a year now. Lately, I have been experiencing pain in both legs hips and back. No blood clot. It feels like bone pain. Pet was clear in feb. Does anyone else have this, and if so what are you taking for it? I have tried over the counter meds but sometimes only a hydrocodone will help. Any one else experience this?
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Liz - I think you may be on to something. I am a lucid dreamer and my episodes feel very similar to that. I think I get caught between being asleep and awake. I'll think that I can't move my legs or my arms, then some self aware part of me says yes you can, and I do.
Mine have both happened on my week off. Maybe the withdrawal triggers it?0 -
Hi there,
I am on my third cycle with Xeloda. Today I started noticing my first signs of HFS. My ankles and feet are really swollen. However, I'm about to start my week off, so I won't call them. I also woke up this morning with red in half of the white of my left eye. Could that be a symptom? I went to the pharmacy and asked the pharmacist if I had conjunctivitis and he said he couldn't give me a diagnosis, but that using polysporin couldn't hurt. Thanks for any advice.
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I don't think conjunctivitis makes the eyeball red. I think you would have more redness and irritation around the eyelids along with discharge. The red eyeball is more likely a blood vessel that stressed.
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Hi there,
I am on my third cycle with Xeloda. Today I started noticing my first signs of HFS. My ankles and feet are really swollen. However, I'm about to start my week off, so I won't call them. I also woke up this morning with red in half of the white of my left eye. Could that be a symptom? I went to the pharmacy and asked the pharmacist if I had conjunctivitis and he said he couldn't give me a diagnosis, but that using polysporin couldn't hurt. Thanks for any advice.
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Thanks, Chickadee
It always amazes me how informative you ladies are. I don't know what I'd do without this site. Have a good night.
Laura
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I read that conjunctivitis is a side effect. Hope it goes away soon.
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Thanks OBXK:
I hope it does go away soon. I just hope I don't pass it on to anyone else.
Thanks again,
Laura
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Well, I only had 8 days before the feet acted up. So, I'm off med until next Tues. (will make 7 days off). Then, I go on 7/7 schedule and a reduction in dose. If that works, I stay on the 7/7 for a month and then go back to 14/7.
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