All about Xeloda
Comments
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Yay Lulubee! 28 months is fantastic! Woo hoo!
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Lulubee- Great news! How do you deal with the HFS?
My TM's really went down this month. CA15-3 went from 234 to 128. My MO reduced my dosage of Xeloda due to my HFS. Today was so very difficult-my feet hurt so much I was close to tears. When my MO looked, she changed me to 1500 msgs in the AM and 2000 msgs at night.
What do you all recommend for severe HFS? I'm a little leary of reducing the Xeloda since it's working so well for me.
Thanks!!!
Babs
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I'm back on Xeloda after a 'vacation' for a hysterectomy. I also got a PET/CT scan lately which shows less activity in my T7 vertebrae. Yeah!
I don't have HFS (yet) or any gastrointestinal issues, probably due to taking only 2000 mg a day. Well, if it works on the cancer, I guess it's enough.
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Add me to the Xeloda mix here. My liver is infiltrated with mets and we tried taxol for 5 months 3X a month. I had a horrible time on this one; severe neuropathy, gerd, diarhea, exhaustion. I had to be hydrated twice and I slept day & night for a week. No life.
I hope Xeloda is better.
Terri
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Lulu, congrats on the dance with Ned. Wish I could get there. Altho I have to be happy with stable. Not counting the new little spot on my pelvis. Your mets were discovered in 2010? 6 years of stage IV?
Babs, that is still a pretty high dose. I do 1500 twice a day. And at the end of week 2, my hands hurt so bad. Much more than my feet. Congrats on the lower CEA. I think mine ranges in the 40's.
WSF, congrats to you too! I hope you can continue with the low dose. I'm sure we all wish we could do that!
Hi Terri, praying that Madame X works for you. Seems like there have been several ladies here with liver mets, and it has helped. What dose are you on?
No news to report on my end. I may be due for labs today, I guess I better check and see! Gonna do one more cycle starting Monday, then take me a 2 week break! Yay me!
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Goldie,
I'll be on 4000 daily. Maybe the every other week will be better for me.
Terri
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Goldie I'm on one week on one week off. Even with that my feet this last time were a mess.
Babs
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Terri, 8 pills a day is what I started with. I went through hell! I think they should start us out on lower doses until we adjust, and then increase. I was backed down to 4 pills a day (500mg) and I now do 6. 14/7 schedule. The 7/7 didn't seem to work well for me.
Babs, are you on your feet a lot? I am on the weekends, during the week more sitting, as our business is online, so sitting in front of a computer. But just resting my feet on the cross bars and the bottom a chair hurts.
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Goldie. I'm not on my feet a lot at work. I usually walk home about 1 1/2 miles but haven't been able to the past week. I started taking an anti inflammatory which is helping!!!
Babs
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Babs and all, I take a supplement called Inflamma-less, two in the morning and two at night. It is a nutritional supplement (liquid-filled gel capsules) that ramps down inflammation. The ingredients also support good digestion, gut health, and ease pain. I have taken it daily for six years, and it is the one supplement (in a drawer full!) that I will take forever because I feel remarkably worse overall when I skip it, both physically and mentally and mood-wise. I've recommended it to several BC patients I know who are now as devoted to it as I am.
I do think it's part of the reason I haven't had much trouble with my hands and feet, although my oncologist says a lot of that is determined by individual biology and how we metabolize things. But I figure it can't hurt to dial back the inflammation.
I order it from Amazon and have it automatically shipped to me so I don't run out. Since I live where summers are scorchers, I order a five month supply in April so it is not shipped in the heat.
Edited to add: Several of the ingredients are commonly believed to fight cancer. So that's kind of the cherry on top.
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Babs, not sure if I could handle a daily walk of 1 1/2 miles.
Lulu, sounds interesting, I guess it can't hurt, right? I will check it out. Thanks.
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Hello all. I regret to say that I will be joining you in the next day or two. I am coming over from Aromasin/Faslodex/Ibrance. My liver mets blew up very recently. I am hoping this Xeloda will push them back. I have bone mets which remain fine, no issues with those right now. Up until now, I was responding very well to hormone therapy. I am feeling very depressed and freaked out. I was hoping my first hormone therapy would work for several years. I have a 14-month old baby and don't like to think about the reality that he may not be old enough to remember me when I am gone.
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JFL,
Nothing I can say about your young child, but I can tell you that Xeloda has been much easier for me than Ibrance, which just never worked for me. This thread has gotten really, really long, so please feel free to ask questions. This group of people is very willing to share and are very supportive. With a 14 mo at home, you are not going to have the time to cull through 179 pages!!!!
I am so sorry that you have had a progression. I hope that Xeloda is your own magic bullet.
*susan*
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JFL, I have no words. I got chills when reading your post. To be so young and have a baby, it's just not fair! I often think of the young gals on this thread, when I am in the dumps worried that I may not see 60. Knowing you would love to make it to my age in the mid 50's. Xeloda has worked for many of us. One gal here has been on it for 3 years. I have been on it for 1 year now, and Ibrance is next for me. Please try not to be depressed, altho I know it's very hard!!!! We have a choice, be happy or be sad, glass half full, or glass half empty. None of it changes anything, so try to be happy. HUGE HUGS!
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I've been AWOL for a while. Just didn't feel like talking about MBC. Here's the skinny on the past month (yikes, I just date myself haha). The skinny?
After a transfusion of 2 units of packs red cells on 2/1/16 and scans on 2/29, I'm "stable"!!!! My hemoglobin held at 9.3 and platelets went to 47. Have the same mets activity throughout my skeleton with increased activity in right iliac crease and right hip and thoracic spine but nothing critical or concerning for fractures. I am staying on Xeloda until next blood work on 3/28. If my numbers hold steady I stay on Xeloda and Xgeva.
Side effects are yucky. I usually do really well not experiencing problems with side effects. So, I'm coping. I have the HFS thing down to what works for me. I always wear spa socks and cotton gloves and moisturize at least every 2-3 hrs with: O'Keefes healthy heels, O'Keefes working hands, & Aquaphor. If I have any cracks in skin I add Biafine. I do this everyday whether I'm on the drug or not. I'm on 3,500 mg daily on 7 days offf 7 days, due to the bone marrow mets. My team is hoping against hope that i can tolerate and stay on high dose. Apparently marrow mets as involved as mine are a bit tricky. So, far so good with Xeloda. Oops. I take zofran 30 min before dose and lomotil befor every meal (I get some wicked , nasty, stinky diarrhea). Poopouri really helps!
Wishing great scans & blood work to all. Light, peace, and understanding 💜
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Msparki-glad to hear you're stable- great news!
JFL-welcome to Xeloda- sorry you had to change treatment. I know how you feel-it's so upsetting when a txt either fails or stops working. Xeloda is the first treatment that I've been on that reduced both my TM's and my liver and thoracic mets. I'm hoping and praying it does the same for you so you can spend many more years with your baby.
Babs
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Hi JFL,
I have been on xeloda since January. I find this treatment has been pretty manageable if that helps at all to set your mind at eas. I'm sure with a toddler that you have to stay very active. I am sorry that your earlier treatment did not work, and I hope xeloda proves successful for you for many, many years to come.
Hugs,
Robyn
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JFL, welcome and all the best to you from here on out. It's been 28 months of NED for me on Xeloda. I was literally falling apart when I started on it, and it turned things around fast. I hope you turn out to be another extreme responder and get many, many years out of Madame X!
We are here to help you however we can. Be hopeful!
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Thanks for the welcomes! I can't wait to start. Little spots 3 months ago are now 6cm. Just waiting for pharmacy/insurance red tape to clear. The side effects sound manageable. I understand that folic acid interacts with this drug and aspirin is not recommended. Are there any other no-no's as far as vitamins and supplements are concerned?
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JFL, about the folic acid warning... I have a genetic polymorphism called MTHFR which means I *must* supplement daily with the methylfolate form of folate (never the folic acid form, which makes this condition worse) to control homocysteine levels in my blood. My oncologist consulted other doctors and pharmacologists about my need for daily methylfolate while on Xeloda, and the conclusion was to give me the go-ahead. You can focus on getting natural folate through food sources, also.
Beyond that, you will find answers to your question in the drug information pages that will arrive with your prescription.
There is a flag to be careful with NSAIDS because of increased risk of bleeding, but a lot of us can't get by without some ibuprofen. It hasn't hurt me.
Grapefruit is off the table, as it is with so many drugs. I really hate that restriction!
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Good news for me! I was worried about my CEA markers, as they were rising, but my scans this week (CT an MRI) show stability. Yay! Six months of Xeloda and my liver mets have shrunk and stabilized!
So glad, as Femara/Ibrance was a bust for me. If this is working, I can deal with the side effects- annoying often, but not debilitating in any way.
Keep on keeping on, ladies. And welcome to JFL and all newcomers to Xeloda.
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I got through 3 days of 5th grade camp while on my xeloda. Boy my feet hurt. But so glad it allows me to keep on living and that I am able to survive these experiences
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Lulubee-28 mos-wow!!!! I'm hoping I last more than 6-7 dos on a treatment. Thus far X is working great!
Sandilee- great news!!! Do your happy dance!!!!
Babs
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Robyn
I also started X in Jan-Jan 1-what about you?
Babs
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Hello - I'm new to this forum. I was diagnosed in 2006 with Breast Cancer. My mother had BC at age 39 and died at 41 leaving 5 girls - I was 14, with my dad dying 3 years later in my senior year. In our family, quite a few of us have the BRCA 1 gene. I did the chemo, bilateral mastectomies, etc. Ongoing Zometa. Did well with all the treatments, worked full time as a paramedic. In October 2014 had a nagging back pain, went in and found MBC Stage IV - never even heard of it! Started with Exemestane on for a few months, then more lesions showed up in the bones. Went to University of Alabama where my sister is a MD and did a Phase Ib/II Study of LEE011 Clinical Trial in combination of Fulvestrant and 2nd Generation Ibrance. Flew back and forth for 4 months, then a liver lesion popped up. So booted out of the study. Went round and round with MD in MN and Mayo Clinic on next step. I wanted the liver lesion ablated but they talked me into waiting 6 months. So I started Xeloda. On 4,000 MG - 8 pills/day with 2 weeks on and 1 week off. My last scan showed a neck lymph node that looked like a spot light. Decided to keep with Xeloda to see what will happen. Next scans are March 25. My side effects are the hands, feet and usual GI stuff. I have tried every type of lotion and last night found something that may be helpful to those of you on Xeloda. I saw a blip on the internet about using Mentholated Vapor Rub. Last night, I used vapor rub, diabetic socks, my hands and wore soft gloves. This morning - no more cracks, dried skin, soreness, etc. Night and day difference. I am actually in disbelief, but my feet today are incredible and fingertips less sore. So those of you that are having issues with your feet - try it! I am on my feet working as a paramedic full time and casual vascular technician at the University of Minnesota. Happy that Xeloda is working so far, my CA numbers have gone down 52 points - haven't seen a decrease since June of 2015. Craziness.......
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Mediclisa-thanks for that tip-I'll try it tonight!!!!
Babs
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Mediclisa,
Keep us posted and congratulations on your finding!
A bit of caution about not being overconfident though, because the damage to soles of the feet and the palms of the hands comes from inside. So Vaporub may be calming down the symptoms. However, the symptoms are exacerbated by pressure, work, walking etc. So perhaps a more conservative strategy,using vaporub and being careful with your feet and hands, would be the best path in your fight against MBC. Xeloda has worked wonders for my wife for 18 months, and it's a shame she had to interrupt it because of the seriousness of her side effects.
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Thanks for the tip. Glad to hear Xeloda has worked for your wife for so long. I hope I have the same success. Believe me I am very careful about my feet and hands for sure. My job depends on me being able to walk and care for people. In Round 4, I took an extra week off because of the pain in my hands and feet. I have tried so many products with really no relief, so a little victory is a good one. Additionally, there is topical analgesic in the vapor rub in addition to Eucalyptus oil. Just make sure it doesn't get in the mucous membranes or open wounds. Can't hurt to try for little money, let me know what you think! 😍
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Mediclisa
Just bought some at CVS. This HFS is no walk in the park!!!!
Bab
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Good I'm hoping it will work for you. I know I'm on a high dose, but I am afraid to lower the dose since the other treatments haven't worked. Every PET/CT scan I have had, I get more lesions. I feel like I am turning into a dalmatian with all the spots. I am working at the University tonight, where I will be logging in about 7,000 steps and my feet honestly feel good! Overnight, the warmth from the vapor rub really felt good! I have followed a lot of you with your advice. I am praying for you that this will give you some relief. Good Luck!
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