All about Xeloda
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Hi BevJen, I am on a Medicare Advantage plan . My 2 months on Nerlynx earlier this year got me through the donut hole and into the "catastrophic coverage phase" on my part D. My most recent claim shows the drug costing $3342 (not sure where they get this number), but insurance pays only $67 a bottle with my share being a whole $17 for generic capecitabiine. $84 total. First time I have been able to pay for my own spec pharm drug without help from a foundation or drug company. Best wishes, Jo
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Count me in as another one who's going to check in to the Good Rx coupon with the pharmacist on my next Xeloda/capcetabine refill.
I had scans at the end of March. The bone mets are unchanged. There is slight increase in a few lung nodules. The onc said we will just monitor them for now, saying she'd be concerned if there were larger jumps in size from, say 3 mm to 10 mm. My blood work is pretty normal. Onc said she's overall happy with the scans and is keeping me on Xeloda. I'm glad about that.
Here's an additional finding on the lungs: "Scattered ill-defined, mostly peripheral bilateral pulmonary opacities are seen, nonspecific and may be related to atelectatic changes. Additional background bibasilar atelectatic changes and/or scarring. No consolidation. No pneumothorax. No pleural effusion or thickening." I'm not sure if my having Covid in January affected those results. The onc cannot say for sure. When I had Covid, one symptom was a bad cough for several weeks. That's been long gone, but I notice shortness of breath after something like climbing stairs. After reading the scan results, I'm hoping this is just some residual Covid effects in the lungs that can be improved. I want to try to increase my lung capacity, so I've been reading up on and doing deep breathing exercises.
It's been about 13 months since I've been on Xeloda. It's weird, but I'm only now starting to realize Xeloda has been working okay for me. The previous year before starting it, I was on Ibrance and Verzenio and neither worked, cost a lot of money and I had progression with both. After that, I guess I was skeptical that Xeloda would be effective. But I re-read my previous scans from six months ago, and Xeloda was holding things in place then, too. I'm feeling more hopeful that I have been. I don't care if the next scans go down the tubes, for now, I'm letting myself be happy.
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I have private insurance, and my copay is $60 per bottle.
I got my scan results yesterday, and will continue on my current schedule and dosage. Feeling down about it, though. I guess I was hoping for brilliant results, but the report was written with weird language that my doctor noted, but did not seem to feel any curiosity over. It doesn't even mention my primary tumor, as in the past, when it was described as "Right Breast Mass." It just has this:
CHEST WALL: The spiculated mass appearance of the right breast is redemonstrated.
Does "redemonstrated" mean "unchanged"? Is there a Google app for translating these things into English?
edit: It looks like we were posting at the same time Divine. Congratulations on the success with Madame X! Hoping your shortness of breath is temporary and soon resolved.
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Hi Divine,
Stable is good for bone mets. In the time that I have had mostly bone MBC I have never had regression beyond drying up the fluid in my right lung. It's always been progression in my bones and then, more recently to my liver. Now, on Xeloda (again), I had regression in my liver lesions and everything else described as stable. I suspect the problem is that with bone it's hard to tell if it's healed bone or active lesions with a CT scan. The "scarring" never disappears. So.. stable is awesome!
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Divine, Happy to hear your scan results were stable, but even more so that they have given you a fresh shot of hope. Hoping your lung function improves with time.
Nine Twelve, My guess would be that redemonstrated means it was seen again as on the previous scan. I'm sorry you are feeling down about your scan results. Hope you can find some comfort in stability and not having to change tx. I agree, we need a translator for radiologist speak. I sometimes think part of their training must be in vague ways to phrase simple results.
Sadiesservant, I think you are right about CT scans and bone mets. CT scans only show sclerotic mets, which may get bigger, but never go away. From my experience active lytic mets only appear to be visible on PET and MRI. I believe this is why PET scans are relatively easy to get approved when we have only bone mets, but once there is organ involvement CT/bone scan becomes the standard for monitoring progression. Just mho.
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Hello ladies: I just finished my second cycle of Xeloda. Two days ago the HFS kicked in. Can barely walk. I read on this blog about using 40% urea cream. How often should I use that, how long does the HFS last? Should I call my oncologist and see if I should get my dosage reduced? I'm taking 3 pills (500 mg) twice a day. I am scheduled to start my next cycle next Tuesday. Also have dissentary. Taking Immodium for that. Pretty miserable right now.
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Wandering, I found 40% urea cream was too strong and didn't help, but 20% got me good results. Some here have said it makes it worse but the weaker dose works for me. My onc also gave me a prescription cream for cracked feet. Many of us use Aquaphor which is basically a vasoline-type product to help moisturize. You need to wear socks because it is greasy, but it gets good results. You should also try gel socks at night as it cools and really helps. I started out on 3500mg but have been reduced to 2500 and I tolerate it pretty well. The dysentery is almost gone at this dosage, and my feet are doing ok. I have a scan scheduled for this afternoon so we shall find out my results. I started Madame X in June 2019.
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Thanks IntoLight: I got a small tube of Aquaphor when I was in the hospital. I forgot all about it and will start using today. I always wear socks to bed - we live in Montana and it's cold at night almost year around. I have a large selection of fun socks. Got most of them at the Dollar Store - for you guessed it- a dollar.
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Hi Wandering,
I primarily use Udderly Smooth cream which I apply several times a day on my hands, a couple of times a day on my feet. If things are starting to go sideways I use the Aquaphor although I don’t like the greasiness.
Interestingly, my biggest issue is the tips of my thumbs, particularly the right thumb which has pealed back several layers. For me, it’s the pressure points that cause issues with sore finger tips, heals and toes. I seem to be doing okay with my feet now - I had a close call when I wore my favourite boots to my hairdressers and ended up with very sore heals with deep pain that I knew would lead to blisters if I didn’t get off my feet pronto. I have to walk a lot with my dog so now am careful to wear very cushy socks at all times or comfy slippers. So far this seems to be working with only a few painful episodes.
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Wandering, I would definitely contact your onc to report the hand and foot issues as well as dysentery. He/she can decide if you need the dose reduction. I went about six months before the hand and foot thing was no longer tolerable and got the dose reduction from 3000 mg (like you, 3 pills a in morning, 3 at night) to 2000 mg. My schedule was to take the meds for 7 days then off for 7 days. It is supposed to be more tolerable when taken that way. I did not have diarrhea.
You want be sure to keep your quality of life up as best you can while taking these meds, so please do call your onc.
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Yay for freedom!
Saw my onc today and I am still NED (19 year survivor of Stage 4 MBC de novo). But my big toes are so bad that he is taking me off Xeloda for 3 months.
I was only on 2,000 a day at 7/7. But my big toes are all blistery and black-burgundy. This started when I ate a large salad for lunch and an avocado for several days....which was way too high in Folic Acid.
And I guess my Centrum vitamins didn't help since they have Folic Acid. I have taken vitamins all of my life, but my onc said that as long as I have a healthy diet, that I will be okay.
So I will go with that for a bit....
I have been on X for 3 years and 3 months, so have a large supply of gel and ice socks, LOL.
I guess that I will hang around here for awhile since I will only be on Herceptin for a bit....until I have another recurrence.
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Yay Denny...that is good news. Heading out for my scan right now so you brightened my day and pushed extra hope my way. Great news.
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FABULOUS, Denny!
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Good luck, IntoLight!!!
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Thanks ladies, but I will probably ask if I can go evenutally to 1,000 a day for maintenance. I don't trust Herceptin to keep me NED.
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I have a bit of a unique situation as I’m on xeloda, capecitabine, technically. But I don’t currently have cancer. I’ve been cancer free since august 2020. But on xeloda as like a maintenance chemo. I have a bit of HFS, my feet are peeling really bad. They prescribed urea cream for it. But my main issue is fatigue. Is anyone else constantly tired no matter what you do? I’ve been on it since dec 1, 2020 and plan to stay on it until dec 1 2021. I just started getting the hfs and also just started having the constant fatigue the past about week and a half. Idk if it’s because baseball just started back so my son always has us on the go or if it’s just extreme fatigue from this chemo
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Hi Hray,
I definitely have the fatigue and have had since I started at the end of January. It seems to be getting worse. I find that it comes in waves, often around noon. I can usually push it off if I am able to be active, work in my garden but work days are a killer! Working at a computer I get so fuzzy!
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I also have fatigue, but have been this way for my 19 years of chemo. It has gotten worse, but I won't know if it is from X, until it gets out of my system.
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Denny, 19 years of chemo, that’s intense!! But thank you for posting. I’ve never seen anyone on the boards with liver Mets that was diagnosed more than 5 years ago. I hope you’re doing as well as can be, like I know we’re all trying to do
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hray, next month marks five years for me dxd with bone and liver mets. So far X has me NEAD to both. We will see what today's scan brings...
And fatigue is definitely a SE. I was hoping for less fatigue with X but it is a little worse than Ibrance. Either it is X or just being on treatment for five years.
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IntotheLight, interesting comment. I do feel that, over time, our bodies just find it tougher. I am in my fifth year of MBC and have really felt it over the last year. Of corse Verzenio was challenging as was Ibrance before that. Now on Xeloda I do feel it is significantly worse. First time I have really understood the term chemo brain!
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intolight, congrats on the coming up 5 years! That’s such an accomplishment. And on being Ned. That’s so great! I’m wondering since I don’t HAVE to have the xeloda since I’m currently cancer free, how I’m supposed to handle the fatigue. My MO said I didn’t have to take it. That I could be done. But it would cut my risk of recurrence down by about a 1/4 if I take it for a year so I jumped on it. Are we all just dealing with the fatigue or is there something to help? I’m exhausted literally 24/7 nothing has helped it
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hray, since I am stage IV I will never be cancer free, so our prognoses are different. My NEAD status just means nothing is active, but the little cancer T cells are still present, somewhere. However, I think I would try to tolerate one year on Madame X if I was sure it could cut recurrence down 25%. But that is just me. The rest of my life is good; my grandkids are still babies, and some great things have happened in the last five years that I would not have liked to miss. So I struggle on. When the end time is apparent for me, I don't think I will prolong pain and despair just to eek out a few more months. I have lived a good life.
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I do plan to stay on it the full year. I’m so thankful for the opportunity to be on it. I just wasn’t sure if anything made the fatigue any better
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Hray- I would also say that it took me about a year to fully feel good after the chemo and radiation. I didn’t realize how bad I was feeling until it got better. I hope that you can stay on it- 25% reduction is awesome.
My Medicare advantage says the generic capecitabine costs $800 and I pay $5. Quite different than the Afinitor which was $19,000.
Having a scan in early May- hoping it is still working.
Denny- so wonderful to take a break I hope your feet look glorious very soon
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For those posting in the Stage 4 only thread, please be conscious of your words. The statement about having never seen a person with liver mets that was diagnosed more than 5 years ago is causing me a panic attack. And I rarely have them. Excuse me if I sound unwelcoming; I'm just trying to get my heartbeat and breathing back down to normal. My liver mets were found just a few short months ago. Thank you for your understanding, and best of luck to you with your treatments.
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NineTwelve, I had a similar reaction. I immediately went off looking for facts to refute, and they were there. We are all in a tenuous spot and don't need or want... perhaps well-intended... but frightening and discouraging posts. Onward!
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NineTwelve - I'm so sorry for your panic attack and I agree with you about comments regarding length of time. Coming from a caregivers point of view I do my best to not think too far in the future. I have faith and pray daily for healing and long life for my wife and everyone on this forum.
I think it's okay to prepare for the future but I pray that treatments are effective and long lasting.
Grant.
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I think all these comments are directed at me. I apologize if I hurt anyone. That was never my intention. I just became so hopeful when I saw that. I’ll remove all my comments and stay off this thread. I didn’t realize it was a stage 4 only thread. I just saw it was about xeloda and that’s what I’m on. I apologize to you all.
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NineTwelve-I had huge liver mets in 2004, and I am still here! After 9 months of Gemzar with Herceptin, my liver was clear and is still clear!
Trust me....there are tons of us liver met survivors out there. I have been active on this board and others for 19 years, and so many chemos work super well on the liver since the liver processes everything in our bodies....both food and chemo.
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