All about Xeloda
Comments
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This is interesting! A trial using capecitabine instead of CMF for early stage patients!
https://www.sciencedaily.com/releases/2017/06/1706...
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Yes, good article.
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Lita, I mentioned to my son about possibly asking my MO to try the 7/7 schedule, and him and his damn math mind instantly says, but that's eight less weeks a year of chemo! I told him they are learning that women are having a good response even with that schedule. I think I will keep on the 14/7 for one more month, and see how my first scan goes, then take it from there.
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What is CMF
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CMF is a standard chemotherapy combination. C=cyclophosphamide M=methotrexate F=fluorouracil
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Mimi, it's all about your priorities. For me, it's all about QUALITY of life, and not quantity.
I've been on X for over a year, and let me tell you, with each successive cycle, MORE toxicity builds up.
This last cycle has been a little rougher...more stomach issues, hfs a little worse, and way more fatigue. My wbc and rbc blood counts are the lowest they've ever been in my life. Keep in mind chemo is CUMULATIVE in terms of its effects on the body. I had my MO lower my dose because i knew it was going to get even worse. But I'm still here after 15 months.
Do what YOU think is right for you. Waiting for scan results sounds like a good idea to me as long as you don't totally feel like crap.
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Thanks for the CMF definition.
Lita, yes, there definitely has to be quality, or it's not worth it. How have your mets responded to the X? Is there anything they do for the low blood counts, other than take a break from the chemo until they build back up again?
Knowing that the toxicity from the X will build up, is why I've been so worried having SE's so strongly, so early on. And thanks to all of you ladies experience and advice, is why I spoke up first thing to my MO, and started with the dose reducing as soon as it started. I've always loved my MO, but after my last visit, I don't think he knows much about all the SE's and things that can help. As I was telling him info I've learned here, I felt like I was teaching him. And he said he didn't know there were websites like this out there. But he listens to me, will spend as much time with me as I want, and from day one with my new DX, he said it's whatever I want, because it's all about me. He doesn't want me suffering, and knows quality of life is most important. He gives me all the options and asks for my decision.
Sometimes it's hard for me to tell if some of the bad days are X related or not. Because prior to Mets dx and starting X, I had many really bad days, where I just felt like shit, and would be extremely tired; due to my other medical issues, and pain issues, and being on Morphine 24/7. I would even describe to my boys, about some days where I couldn't explain exactly what was wrong, but that I felt horrible, like I did back on bad chemo days from my BC. Of course the HFS, and extreme fatigue is definitely from the X. But I already had stomach issues, nausea, diarrhea, constipation. I hadn't had the dry eye syndrome in a while, which has come alive again, is it the X? I fight with vertigo and nausea, but the I think the nausea is worse from the X. I already take Omeprazole twice a day, but I've noticed the GERD acting up since the X. Is it all coincidence, or the X, who knows?!
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Mimi, yes, the eye issues are from X. I have them too.
My organ mets have settled down on X, but I've had some slight bone and soft tissue progression...but not enough to move on to Taxol or something stronger yet.
With low red blood cells, they either make you take a break, do a transfusion or both (I think).
I've been having the dreaded abdominal and intestinal cramping now, too. It's toxicity taking a toll.
Also wanted to mention I really felt like crap b4 I was dx'd with St 4. I was tired all the time, unenthusiastic, achy, and just generally biummed out. I knew that wasn't me, but I just figured oh, I'm getting older. This is the way it is. NO, IT WAS UNDIAGNOSED STAGE IV CANCER, THAT’S WHAT IT WAS. I'm convinced of that now.
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lita, I too was always tired before my stage 4 de novo diagnosis. Didn't understand what was wrong with me. I believe I was undiagnosed for over a year (long story) while it grew to stage 4.
I have cramping a diarrhea on X, as well. My worst SE. Also had it on Ibrance. Sensitive tummy I guess.
Stefanie
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Oh, Stef, my RO said my Stage IV de novo metastases had probably been stewing in my body for over a year, too. Because mine is "occult, amorphic" hidden, without shape, it was never detectable on any mammograms, and I had them on a regular basis...even a year almost to the day before I was officially dx'd.
There has to be a better way to dx those with occult, amorphic disease. Maybe some sort of tumor marker blood test? How expensive are those? Insurance shouldn't balk too much. RO said this type of BC is particularly nasty because it usually sends out those demon metastatic cells at a much earlier stage, and that's why you won't see a 1 or 2 cm tumor in the breast. All it takes is one rogue cell, and that cell sends its little henchmen out to the lymph nodes, etc long before the primary cancer is ever detected. And when it finally is detected, it's too late for the patient.
Even with the dye-infused CT, all they saw was a "small, shadowy, suspicious area." That's my story, sigh.
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Stefajoy and Lita, I think the same for me. The only difference was that I first felt a lump, my husband did ultrasound and there was nothing but a clear fluid cyst. Continued with mamos no change and about two years later I lost a lot of weight and didn't feel like myself. I was getting undressed one night and my husband noticed a very slight indent in my right breast. I could hardly notice it, but with his trained eye he knew. Went for ultrasound and right where the cyst was was a strange looking thing. My husband wonders if the cancer was erupting and maybe that was why it was a clear benign cyst. I had surgery that week. 2cm low agressive, onoco D.C. 9. They said I would not benefit from chemo. Clear margins and radiation was all I had. Tamoxifen for 8 years then I started getting achy not my self and then in August 2016 we found out the monster came back with a vengeance! My husband told me that a tiny cancer can take up to 7 years before it shows it's ugly face. After 8 years on tamoxifen it showed up again this time Stage 4. My MO said Tamoxifen failed me so now Xeloda is the drug of choice.
So far no side effects but I'm waiting patiently for my latest blood work. Keeping my fingers crossed that this will work.
Hugs to all,
Anita
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Just when I decided to wait it out for my three month scan, before asking to try and change to a 7/7 cycle, I've had the WORST stomach ache all day and night. Been just miserable. Each day of this second week of the cycle has been worse. And the acid reflux is getting worse. I don't know what else they can do for that, as I already take two Omaprezole a day. UGH. Think now I will be asking to change cycles next week at my appt. Looking forward to my week off, so I don't have to try and force myself to eat when I don't want to.
My toes are getting worse. The damn elevator on my side of the apt building I live in is broken. It's been two weeks now. So I have to walk all around to the other side of the building to take the elevator, then walk all the way back around to get to my parking area, which is always far away too, and of course, I'm at the very end of a long hallway. Doing laundry last week, I had to walk back and forth around the building twelve times. All this extra walking is killing me. What can I do to try and keep my toes protected, and stop the blisters? Open shoes, closed shoes, band aids, nothing has worked.
I had never heard of de novo until I joined this site. Just one more horrible thing about cancer, making it so hard to find and diagnosis. So sorry for all of you. Hoping X works for all of us!
I learned about the cancer hiding out, then popping up whenever it felt like it, and moving quickly, from my best friend. She died three years ago.
Found out tonight another friend's mom was just diagnosed with Pancreatic Cancer, stage IV
I HATE CANCER
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those with Xeloda rash/he on face- what did you do? Did it itch? At first I thought I was getting menapaussl acne but now I am thinking it's due to the Xeloda. Any help greatly appreciated.
Rash is around my mouth and under my nose. Open to help if it's acne as well
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Left, I have had the Xeloda rash beside my nose, on both cheeks, and at the corners of my mouth. Yes, it itches and burns. Wash the areas gently with mild soap and tepid water. I like to use Cetaphil.
Keep the areas moisturized with a non-irritating moisturizer. For some reason, Aquaphor, which is highly touted, makes mine burn more. Eucerine cream works better for me.
Some weeks my entire body just feels itchy. I take a Benadryl for that.
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lita- did your MO talk to you about the rash? My MO said it was acne. Guess I'll have to have her look into it. The dry scales get to me
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today, 1/2 way thru my fourth cycle, my feet are really sore. They feel raw, no blisters, and the skin feels tough and is red. I'm hoping it's not going to get worse. Any suggestions besides the usualcream and salve?
😕
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Left, I was on Accutane for my severe cystic acne back in my late 20s. Accutane is a wonder drug. I haven't had a zit on my face, shoulders, chest, or back since.
If you have the scaling and peeling on your face along with the redness, it's Xeloda related rash, not acne, and my MO said it is a side effect.
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Lita- after 4.5 years on Xeloda I guess it's time fir s new SE. Thank you for your response
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Oh, no, Stefajoy. My recommendation is to call your onc's office right away to see what they recommend. Don't wait until it gets worse. Get your onc and/or nurse in the loop without waiting until your next appointment. From what I have read, they might consider dose reduction or schedule change, vitamin B6, or a COX-2 inhibitor. I assume you are already avoiding heat, pressure, and friction. Cool your feet.
Mimi, what does your onc say about the blisters?
Leftfoot, maybe consult a dermatologist too? Preferably one who works in the same medical center as your onc?
Photogirl, like me you had a low Oncotype score and your path report looked favorable. You were also premenopausal, right? Did you ever consider CYP2D testing? The reason I ask is that I found out both my kid's alleles are for non-active enzyme, which means at least one of mine is. So I wonder if I did not metabolize tamoxifen properly; i.e. turn it into endoxifen. I know this testing has been controversial, but it sometimes I think it might help me answer the question, "What the heck?!"
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Shetland, my MO doesn't know about the blisters yet, I see him this Thurs. As I was debating about trying to get him to switch me to 7/7 schedule, or wait until after my three month scans, this last week of cycle three has been hell. Had the severe stomach ache the other day, and the fatigue has been horrendous the last three days, I've done nothing but sleep, and feel week and sick. So I will, definitely be trying for the change now. Although I don't think he really knows about the 7/7 schedule. I think I need to find some info about it and take it with me to show him. Praying I start to feel better this week, being my week off, as I'm supposed to babysit the grandkids a few days.
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Mimi, that sounds awful. Could it be you are coming down with the flu or something, on top of Xeloda issues? Can you call your onc or PCP and ask for the right med to help with the stomach and reflux? I hope you feel better very soon!
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Hello ladies!
Can't tell you all how much I take away from all of your comments, so thank you!
I am on day 10 of my 21 day 2nd cycle and have had stomach pain at the top under my sternum, it's relentless, along with pain under my left rib cage. Has anyone else had this?
I am also on Navelbine so it's hard to know what is doingwhat!
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Mimi, when I feel like that my MO gave me an anti nausea pill. Sometimes that works really good. I have only had a puke bug on an airplane a few weeks ago but I didn't know if it was from the Xeloda. I don't usually get puke bugs but those airplane bathrooms could make anyone throw up. I got over it within a day but my stomach hurt for a few days so I took Compozine which was originally prescribed when I took this drug. Ask your doc. I also get hiccups so I think maybe Xeloda causes a gas in the stomach. Nothing I can't deal with.
Emily, you may be experiencing gas. I do get that feeling your describing. I eat a ton of fruit and veggies and that seems to stop the gas. Maybe try tums or antacid but it continues see your MO for sure. Everyone seems to react to Xeloda differently. Lita would know better. She has been on it for a long time.
Shetland, that is an interesting thought. I think that Tamoxifen stopped working for me a long time ago now that I look back. I was premenopausal when I was first diagnosed. I may have that enzyme. I will ask my MO at Dana Farber when I go see him. I think I had bone mets a lot longer and my MO said it failed me. My husband thinks that I have a very slow growing cancer and that why it never showed up until last August.
Stefajoy, I was counseled about all the side effects from Xeloda. I was told to wear cotton socks so no friction happens from nylon or polyester. Keep your feet cool. I have a little hurting and burning on my heal so I put cold water on it. It goes away. But if my feet get hot they get red so do my hands. I hate smelling like a medicine cabinet so I found some Evelyn and Crabtree rose water moisturizer and rub it all over my feet. So far so good.
As for me, I got news about my blood work yesterday after round 4. My blood work is now completely normal except for platelets and my Alk Phos is 25 point above normal. I was shocked since this enzyme has been high. It's dropping so fast. So the next day I get news that my tumor marker went from 276 to 12. Totally normal. I'm still looking at this in disbelief since when I started Xeloda it was 2600. Dropped with every treatment. The high normal is 38 and I'm down to 12. My husband says that it indicates no active tumor at this time. I'm loving this drug. I hope we all get a good run on it.
I love all of you. You have helped me so much I feel like this is my complete support system!!! I don't think I could have gotten mentally where I am now without all of you.
Have a great weekend!!
Anita
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Mimi, Stefajoy, I'm under strict instructions from my MO that if something like what you're experiencing happens -- blisters, feeling sick, bad diarrhea -- to stop taking X right away and then to contact him. I travel a lot so that's part of the reasoning here, but applies regardless of where I am.
Don't feel like you need to suffer to finish the cycle.
Anita, that's excellent news!
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Hooray, Anita.
Mimi, pajim is right. Call your dr right away. You shouldn't be suffering this much so early in the game.
Yes, X causes a lot of gas, as in farting, belching, you name it. When my stomach acts up, I take Rx Zofran. It melts on your tongue. For really persistent nausea, medical marijuana does the trick and it's long lasting. I feel sorry for those of you who live in states where it's not legal.
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Photogirl, that is fantastic! Normal TMs after four rounds. I'm very happy for you. Will you continue with your current Xeloda, same dose and schedule?
Emily-Louise, I don't know how to interpret the pain you are having, but I hope your doc can help and that it goes away soon.
I feel the same, Anita/Photogirl. The support we all give each other here is essential to me.
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hi all
I have been away from posting for awhile. I was quite sick this spring but feeling next to normal now. X has caused some SE but they went away when I was dose reduced. My cancer has been stable on x which is good news.
Left foot forward: I had a rash on my forehead for several weeks. It looked like awful acne. I have 2 MOs because I am in a study. One said it was x working on Sun damage, one said just SE. But it cleared over time I take Llysine and b6 to help my skin. And put vitamin e skin oil on rash and it seemed to help. Good luck to you.
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Anita that is soooo awesome! Happy happy happy for your good news.
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Shetland, I see my MO next week. I would hope he keeps me on the same dose but I'll let you know. So far this has really worked for me. I have no SEs from it. Keeping my fingers crossed!!
Anita
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I read often but don't post often. Just finished my 3rd cycle of X and so far so good. Some foot peeling and itchy palms but otherwise OK
But a question about another possible se The first 2 weeks I was on X, I felt amazing better than I have since initial dx 6 years ago. Like way good, off the charts scary good. And was having trouble sleeping, only about 3 hours a night. Last two cycles, some of the fatigue is kicking in, but still feel good. But I am feeling very anxious, almost frenetic at times. Sleeping better due to advil PM. Asked my counselor if I was bipolar, even when I am sitting still it feels like I am going 100 MPH. Friends say I don't come up for air on the phone. I do have a lot on my plate right now, but feels like I can't slow down. Counsleor tells me I am not bipolar, but maybe hypomanic right now.
I take an anti anxiety and anti depressant which have been a huge help. Counsleor suggested I ask ONC if this is a possible SE and could I reduce my dose. He feels like it is more than just everything going on aand that there may be something related to the xeloda.
Anyone else have similar issues??
Thanks
Nel
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