All about Xeloda
Comments
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Thank you, illimae, joyner, Denny and others for the moral support. It helped to realize that it is a very common feeling, to be depressed and fearful around a medication change.
IntoLight - congratulations on your scan! If you don't mind, what does "FDG avid disease" mean, on your report?
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intolight, congrats on stable 🎉
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Nine Twelve, FDG Avid means "Inflammatory cells have increased metabolic rates and, as a result, are FDG avid." So cancer cells in a PET scan show up if there is increased activity. It doesn't mean they are gone, just inactive. Other things can show activity also so that is why there are other types of scans. My insurance just prefers PET. They compare activity from previous scans to show tumor growth. That is why my onc says stable. This is the second scan in a row to show this for me.
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IntoLight...Great news!!!
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My TNBC is back. It’s metastatic which made 2 neck lymph nodes swollen and a nodule on chest wall increased in size. I was on Olaparib for 1.5 years but now my MO suggest chemo with immunotherapy or oral chemo Xeloda.
I opted for Xeloda and read even this pill has side effects.
I usually have bad side effects like nausea, fatigue and feeling sick always. Please suggest how to manage SEs.
Do the SEs go away after 1-2 months. Does the body stabilize and can I feel better after sometime?
Can I go for acupuncture or any other complimentary medicine or therapies to feel better.
Are there any long time Xeloda users
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Vidya, I had bad nausea and vomiting at first, I tried the 2 prescriptions I was given for it but they didn’t help. Eventually, I was given Promethazine, which is an old antihistamine and to my surprise it worked great, no issues at all now. I also use CeraVe lotion on hands and feet nightly and have not developed hand/foot yet (nearly 4 months into Xeloda). Once the vomiting was resolved, everything seemed to stabilize and currently I feel great, like I don’t even have cancer, just normal. Treatments have been mostly easy on me, which I am grateful for but feeling this good was unimaginable before the SE’s were under control.
Good luck to you
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Vidya99, I have been on xeloda for 7 months now, the last 2 months 3000mg 7 days on 7days off. I have not had any nausea but I do feel like I have a lead ball in my abdomen and diarrhea on my days off. The biggest issue for me is eyes constantly watering and hand and foot pain with neuropathy and loss of fingerprints. But my tumours are shrinking as of my last scan in november. All in all it’s tolerable especially because it’s working so far and fingers crossed I get another year or more onthis drug before I have progression
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Vidya...What will your dosage be? That determines the SE's.
I have been on Xeloda for 3 years at 2,000 a day at 7/7 and never have nausea. I use Aquaphor constantly--on hands and feet at night with silicone socks and food service gloves. Aquaphor all day long, too.
I have constipation, teary/very dry eyes, sore hands and feet. But it has been tolerable for me. I am a 19 year survivor of Stage 4 MBC de novo, with possible rib mets (to be verified with my April scan).
So I am a pretty hard case.
Be sure to take the pills a half hour after a high protein meal or snack for best efficacy and to avoid nausea. The pills work best with partially digested food.
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Vidya, I have been on Xeloda for 6 months and my scan last Tuesday shows no activity anywhere. I am on 14 days on and 7 off with 3000mg although now that I am steady I am considering asking for a slight reduction. I can control the HF with aquafer on my feet and Eucerin on my hands. I have fatigue and had nausea for the first few cycles but it is rare now. I tend more towards diarrhea with stomach pain once a day, but once that is done I do fine. I had multiple bone and liver mets de novo. It is totally manageable.
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Denny123,
My MO prescribed Xeloda 3500mg per day, 14 days on and 7 days off. I am worried how long this medicine will keep me progression free. My symptoms
were bad with chemo in the past. Do people take Xeloda for long long time?
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Vidya....Stage 4 gals usually take it for as long as it works.
At your first sign of hand or foot soreness, call your onc for a possible reduction.
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I just wandered across this report (older) about the efficacy of various dosages and dosing schedules for Xeloda. I don't understand a lot of it, but it seems to contain some interesting data. I had read a report related to the possibility of holding off on methotrexate for a period of time before or after the Covid vaccine (I'm not holding off on Xeloda for anything, as it's working so far) and went looking to see if Xeloda includes methotrexate as an ingredient.
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JoynerL- this was done at USC and apparently they use a standard dose of 2000mg per day in everyone. . My MO said that changing a chemo dose because it is not working rarely increases efficacy. I thought the part about “measurable disease” was interesting. And bone only Mets patients often get excluded from trials - so less info about efficacy and PFS among drug trials. I liked that they looked at that and found median PFS among bone Mets only at 19 months.
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Hi there!
I started Xeloda back on 11/4 and the idea was that it was going to be for 6 months for precautionary measures due to possibility of residual cells remaining. I had muscle/joint/nerve pain right away; no H/F or nausea, thank God! Since then my MO has decreased my dosage and my schedule, originally I was 14/7. When she lowered my dosage, she had me go on 7/7. My pain has gotten to the point where I can barely function; it's a pain so deep inside of me and nothing helps, I feel as though my bones are breaking. I recovered from my double mastectomy (Sept. 2020) fairly well and quickly. Range of motion was good up until I started my 2nd round of Xeloda. The pain has increased to the point that I can not get up from bed or a chair without pain; I cannot walk with my feet (bones) hurting, buttoning a blouse has become a task, I'm having difficulty putting on a robe because my upper arms hurt and my range of motion is limited. I have no quality of life. I'm so frustrated. My MO took me off for 6 weeks and will revisit whether or not to start up again and I start PT tomorrow. I have no quality of life and pray that I can heal within in these 6 weeks. My anxiety is through the roof and depression is setting in (I did discuss with MO and we are taking measures to deal with). I tolerated AC, Taxol and Carbo so well; I was not prepared for this and was told that this would be breeze. Anyone else experience something to this degree?
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Gosh, Ivy, no. Not at all for me. Your MO should figure this out for you quickly!!
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Ivy09, were you checked for the DPD deficiency? It is rare, but could cause neurological problems with Xeloda.
It is a blood test. Worth a discussion with your MO.
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JoynerL - I had no option but to stop, for now as MO feels my body just cannot tolerate the Xeloda.
SandiBeach5 - Yes was tested, my lab results came back normal, thank goodness.
I worry these SE's , if that's what they are, may be permanent. I feel they are SE's from X as they began as soon as I started it.
So frustrated!
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WISH I COULD HELP!
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Thank you JoynerL!
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IVY09- I had severe foot pain after about 3-4 cycles of 2500 mg per day 14/7- as soon as I decreased dosage to 2000 per day it went away. I am now 2000 7/7 and walk 3-4 miles per day (with cushy shoes) what dose are you on? I am sorry this happened to you-
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I too had severe foot pain on first cycle..so debilitating that I was in wheelchair. After dose reduction and extra days off Xeloda, I got better. I started 3300mg 14/7. Now 2150 mg 7/7. Doing okay with Grade 1 HF.
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Sandi, is the 1150 mg a total daily dosage, i.e. a 500 mg + a 150 mg twice a day, rather than twice daily? I'm on 2000 mg/da (1000/1000 daily, 7/7). My MO said that that was the lowest dosage she has prescribed for anyone. I think that someone on this string is on 500/day.
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NKB - Thanks. I started off at 3500mg 14/7, lowered to 2500mg 7/7. In 6 weeks, if/when I restart Xeloda, it will be at 2000mg. I'm so glad that the lower dosage has worked for you. I'd love to be able just to walk down the stairs at my home. Prior to my diagnosisI was walking about 4- miles daily; and even during my AC, Taxol/Carbo I was able to go for walks, not as far, but still able.
SandiBeach5 - I'm almost at the point of a wheelchair. Glad the lower dosage has made it better for you.
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IVY09- see a post recently by JoynerL re a study done at USC- they showed that doses above 2000 mg per day were unnecessary and they start everyone at that dosage. My MO told me if it doesn’t work changing the dosage doesn’t usually help. It is really healthy for you to get back to your walks. Look at Hoka1 shoes, and others- Cush!!
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Joyner, I had mistyped my dosage and corrected. Sorry to confuse...!
I am on 2150 mg/day..7/7. So 1000mg in morning and 1150 at night. Will start cycle 11 next week. My MO uses 28 days as a cycle (7on7off twice).
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NKB- thanks! I will check out that study. Getting back to walks is the goal for this week. Thanks again!
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Hello!
So just an update. As I mentioned in one of my previous posts, last week my MO took me off of Madame X for 6 weeks and we will revisit on 2/16/21 whether or not I will continue this treatment. I was on my off week when she made this decision, so it's been almost 2 weeks since my last dose.
I am so happy to say that today I woke up pain free. I am thrilled, to say the least. I had a decent day yesterday, a little sore, but nothing compared to what I've been experiencing since beginning Xeloda. I can actually walk and am planning on attempting a "long" walk (whatever that is); my fingers are "working" I had no problem buttoning my blouse this morning and can type with no issues; I can go up and down stairs (a little slow, but that's ok, my joints need to warm up;, my upper arms are still hurting, but I'm attributing that to continuous healing from the double mastectomy (sorry, don't know the short cuts to these terms yet).
I guess I really need to start thinking about whether or not I'm going to continue this treatment for another 4 months after 2/16/21.
Just wanted to share my good news as this huge for me.
Have a great day!
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Ivy09, I lurk on this forum as it's one of the next lines of treatment my MO is considering for when my current line fails.
This is the Stage IV forum but I don't think you're stage IV, right? You're taking Xeloda as preventative treatment, correct?
As a fellow triple neg, I want to say that this wasn't standard treatment at my treatment center when I finished in 2018 but if it had been, I would have jumped on it. If it's only 4 months and you now know that your symptoms reverse, I think you need to consider your metastatic recurrence risk and what you feel comfortable with. How much additional protection does your MO think this treatment will give you?Have you run your numbers in Predict? Looks like you took 3rd Gen chemo. See what the outlook is at 5/10/15 yrs. The deaths are essentially proxy for metastatic recurrence. Just want to add that metastatic/stage IV breast cancer is not curable, only treatable and median survival is ~3 yrs... not everyone knows that so just putting it out. https://breast.predict.nhs.uk/tool
I'm sorry you're having these side effects. It sounds miserable. I hate how we have to make these hard decisions. Cancer sucks.
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Hi Joyner. I am still on 3000mg daily with 2 weeks on, 1 off but I am hoping at my appt on the 29th to be reduced as my second week is getting a bit rough. Since I am NEAD the last 2 scans I hope she agrees to it, especially given the 2000mg studies.
Ivy, I am so sorry to read about your extreme SEs and hope you recover well.
Moth, I am 4 1/2 years since Stage IV dx (de novo) so I have beat the average so far. There are some days I actually feel good as long as I don't do much. Fatigue is my worst complaint. I can walk about 30 minutes before beginning to tire. If I stop and rest a few minutes, I can continue a bit.
Praying you all stay safe.
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Hi Moth! I really hope and pray that everything works in your favor!
You are correct, I am on X as a precautionary measure;. I have other health conditions and MO is concerned about and does not want to cause further permanent damage; AC, Taxol and Carbo did because the SE's did reverse after taking a break, but continued with another months worth of treatment after the break.
Ultimately, I'll do whatever my MO thinks is best. X will give me an additional 2-3% increase for non-recurrence.
I had never heard of Predict, but go to the link you provided, thank you.
The SE's are miserable and I understand what you are saying about having to go through it for another 4 months compared to others who have to be on it or any other medication of this nature indefinitely. I guess I sound like a big 'ole cry baby and I apologize to you and all others. Cancer does suck!
IntoLight - thank you! I pray things get better for you.
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