All about Xeloda
Comments
-
My specialty pharmacist told me that I will now be getting the pills from Novadoz. I don't know where my previous ones came from since I tossed the bottles.
0 -
denny123,
Your post prompted me to check the company name (Dr. Reddy's) on my capecitabine bottle, that I get from my specialty pharmacy Accredo. Google says Dr Reddy's is an Indian pharmaceutical company with headquarters in Hyderabad, India and that it has had some problems in the past meeting FDA standards. But they also apparently have a subsidiary laboratory in Tennessee and Accredo has headquarters in Memphis, so hopefully that where my capecitabine is coming from. Way more than I really want to know, but I guess it's better than being completely unaware.
0 -
weninwi...sounds better that it is made in the USA. In my 21 years of research, I have always read that the standards in foreign countries are much lower than ours through the FDA.
That is why a lot of our chemos are tested first in the foreign countries. And after a few years of clinical trials elsewhere, they then come to the USA.
0 -
Hi ladies, Yes when I refilled my script from Optum Specialty Pharmacy they also said they were experiencing a shortage. So I typically get Capecitabine but they were out of it so for the same price I was able to get Xeloda. Hopefully the shortage won't become an issue.
On a good note after being on Xeloda now for 8 months my HFS is calming down. I haven't changed anything I was using to help with the HFS. My hands and feet still struggle but the pain has lessened. I am so grateful because I was starting to think that I needed a break. Also just had my 3month scan this week and I had no new progression! I hope to ride the Xeloda wave as long as possible, finger crossed. I hope we all are able to!
0 -
Cookie. That is wonderful to hear. ☺️
Susan
0 -
cookie54,
Thanks for posting your update. Your experience of a lessening of HFS symptoms after 8 months is hopeful. And your 8 month run is also so encouraging. Is intense redness one of your symptoms?
Angry red is my main symptom, plus numbness and some pain, but thankfully no peeling. I'm going to start cycle 6 tomorrow on a lower dose 7on/7off (from 70,000mg to 63,000mg/over 6 weeks), plus I extended my "week" off to 8 days, so hoping this helps. I've tweaked my diet to reduce my folate intake, per denny123's advice. I also, put my feet under cold water for a minute or two at the tub faucet once or twice a day, which seems to help tamp down the redness. The oncology NP I saw yesterday discouraged soaking my feet in cold water - not sure why. I also just had a new idea that I'm going to try. I have a history of rosacea that I've been able to control with Calming Cream, which has many interesting ingredients. I get the product from rosaceacare.com. I don't think it will hurt to try and monitor closely - an experiment of one.
0 -
Thanks ladies, it was definitely getting challenging! I had it all, extreme redness, cracking, peeling ,neuropathy, numbness and feet/hands on fire feeling. Now hands are more cracked than feet with tight skin but color is not bad. Feet are a little numb and lighter red for sure.
Like you I also had reduced my folate intake and I added a B6 to help with neuropathy. My feet used to keep me up at night, they would just tingle horribly. I was using gabapentin at times to help so I could sleep. So grateful that I am getting some relief. I wanted to share to give everyone hope
Oh also weniwei at the end of my shower I ran the water cold for my feet and that seemed to help me too.. When my feet were really bad I wore my crocs in the shower to shield my feet a little. Sounds crazy right lol. I was desperate for relief and no way was I giving up my nice hot shower that I enjoyed! Yup try the cream it's all one big experiment to try to get relief. Fingers crossed.
0 -
cookie54,
What dose and schedule are you currently on? Did you have a dose reduction or schedule change at any point because of your HFS symptoms? Do you think the B6 supplement has helped with the neuropathy? What dose do you take? I've heard of using gabapentin for HFS symptoms, but my MO has not suggested it.
0 -
I am 7/7 started 3,000mg reduced a couple months ago(HFS) to 2,500 and I gradually saw improvement. Apparently the 7/7 works well in the MTNBC setting. I do think it's a possibility that B6 100mg may be helping. I figured it can't hurt to continue it ,being I'm not really a fan of taking too many prescribed meds. Yes I know gabapentin is widely used to treat nerve pain although I do remember my MO mentioning another drug. I believe it was Cymbalta because that was also proved to help chemo induced neuropathy. So there are options out there if you need them.
0 -
Hi all, It is day 4 of my first Xeloda and I woke up to my food tasting off. Sweet things taste sour and bland things taste like nothing. Thankfully the off taste is only when eating food and not all the time. However, I was really hungry this morning yet it took me forever to get through breakfast. I assume its the medication, however I did not think it would happen this soon.
Has anyone experienced this? Are there any tricks or suggestions to add to my food to improve taste. Foods that tasted better than others. I know everyone has their own unique tastes/responses but I can't afford not eating so any suggestions are welcome. Although I am not nauseated, I am half tempted to take a zofran to see if that would help things. Thanks!
0 -
Hey bookgal, I personally haven't experienced my foods tasting different. For me, my week on sometimes I just don't feel as hungry compared to my week off. Maybe try adding different spices to your food to see if it helps the blandness. Sometimes salt brings out the sweetness also. Ugh I hope your can get to enjoy food soon, it's all so annoying. Fingers crossed .....
0 -
bookgal,
I'm starting cycle 6 of Xeloda and have not experienced any change in taste with my food. Early on I did have some mild stomach upset so I cut out coffee and switched to a lightly brewed black or green. As of right now, I'm not having any problems with food and don't have any suggestions, other than cookie's suggestion of adding a bit more salt.
0 -
Threetree- I don't know where you got the information that only 2-4% ER+ patients benefit from Xeloda. I am ER+ , Her2 negative, with lobular mets now. When I had to have surgery in 2019 due to mets to my intestine, I immediately stopped my Ibrance/Faslodex. I was given exemestrane (Aromasin) for 3 months, it did nothing but increase markers and added new cancer areas. After that, due to Covid, I was offered Xeloda so I would not have to come in to the clinic for infusions. Pills were the best way to go then. I got immediate results, everything resolved within 3 months. Xeloda lasted for 15 months until I needed a change to Taxol, my first infusion chemo since initial diagnosis in 1998. I had neruopathy issues, but I managed the side effects.
0 -
Ninaca - Hi, I think it was one of those major studies that are often looked to as "definitive" re cancer treatment. You know how they have the "MONALISA Study", the "BIG Study", etc. I can't remember which one it was, but it was one of those types. I will look around and see if I can find it and I will post the link if I do. My oncologist was aware of the study and she too seemed to think it was "definitive" in some way and when I pointed out that the ER+ people only got about a 4% benefit, she noted it, and then stopped talking about having me take Xeloda while I got radiation. If I remember, in that study, the triple negatives got some huge benefit (50%?,70%?).
Please note though, that somebody else posted on here around the same time I did, that researchers are now looking at these various drugs and how they affect people during different cancer stages. From what they posted it looks like Xeloda might be a whole different thing for stage 4 than it is for early stage breast cancer. The study I saw would have been looking at non metastatic cancer. Sometimes those studies don't even include stage 3, as I was at the time.
One of the reasons I posed the question that I did on here, was because I was seeing so many stage 4 ER+ people on here doing so well on Xeloda. Well, it looks like it might be a much different thing for stage 4 than lower stages. If you look back through threads on here where people with lower stage disease are asking for Xeloda, many of their doctors declined to give it to them, just for the same reason I opted out when I did at stage 3 (and also undergoing radiation at same time). Those doctors told their patients that there wasn't enough benefit to outweigh the risk for ER+. After reading that study, I told myself that had I been triple negative, I would have taken it in a heartbeat. Some lower stage ER+ people here took it anyway, and their doctors prescribed it, because they said they wanted to "throw everything" at their cancer and that even that low benefit number was was good enough for them. I get that and can totally see why someone would opt to do that. I just didn't.
I am increasingly intrigued by this new notion I've seen that these different drugs can work much differently during different stages. It looks like Xeloda has a lot of benefit for stage 4, that it doesn't seem to have for lower stages. I don't save and index everything I read, but if I can remember or poke around on google and find that study again, I will post the link - again, it is one that was considered highly regarded and "definitive".
Hope this makes my position more clear. Thanks.
0 -
I'm now on a 7 day hold due to HFS symptoms. I'm nervous and think I contributed to this situation. I started on 3000mg/day 14on/7off. After 3 cycles I started to have increasing HFS symptoms so I was offered 2500mg 14on/7off (total 70,000mg/6 weeks) or 3000mg/day 7on/7off (total 63,000mg/6 weeks). I initially chose the 7on/7off schedule, but then changed my mind and went with the 14on/7off. During my week off of cycle 5, my HFS symptoms improved, but still persisted. I saw an NP during this week off and she suggested taking 4-7 more days off to let my feet more fully recover. I didn't think I would need this extra time, so I declined, but I did take one extra day off - so 8 days off. I also decided to change to the 7on/7off and started this schedule yesterday. Last night I was awakened with my feet screaming on fire and the numbness the worst that it has been. Kept me awake for a couple of hours, then better by morning. I called my MO and the NP to report these symptoms and I was instructed to take 7 days off, then restart 7on/7off. It makes me nervous to be off the drug, but I don't want the HFS symptoms to get out of control either. I know the medication is working based on my last scans and I don't want to jeopardize this of course. Has anyone here been put on hold for side effects?
0 -
wen, yes, I had to take a break early on when I started X. I went nine months with hfs gradually getting worse. I put up with it until it was affecting my quality of life, my hands were really hurting. I was always on the 7 days on/7 days off schedule and cannot remember if I was instructed to take an extra week or two extra weeks off, then start back at a lower dose. At any rate, it was enough to get the hfs more manageable and I've been on X for 3 years. I am no doctor, but I honestly don't think an extra week off will make or break ya.
0 -
nkb,
I found this comment that you posted awhile back:
"I started at 2500 per day-decreased to 2000 due to HFS- could barely walk. later switched to 7/7 schedule because my ANC was too suppressed on the 14/7. very tolerable drug that worked for 2.5 years on the above regimen."
Were you ever told to hold the Xeloda more than 1 week during the times you had severe HFS or the low ANC? I'm looking for reassurances given that I've been directed to hold for a second week.
0 -
I agree I don't think it will make or break ya either. However I do understand your concern, I know I always feel like I don't want anything interfering with my plan. Let your HFS calm down a bit more so then you will have a better chance when you resume it. It is working and it will continue to work for you!
0 -
I will ask this again...Have any of you considered eating fewer foods that are high in Folic Acid and Folate???? Those foods are THE reason why my hands and feet were horrible for three years.
Not a lot of oncologists are aware of this, but the fact that the literature with the pills states to avoid Folic supplements, was enough for me to start questioning my intake. And through the years, I have read many posts to avoid those foods.
Cutting back on the dosage and taking weeks off is over-kill. Please just think about what you have eaten lately. Honestly, since I figured this out, my hands and feet have never been sore again. They are dry, but I can deal with that.
Think about it.....
0 -
denny123,
I've printed off and studied food lists for folate and folic acid content. One thing I've noticed is that these two nutrients are actually distinct from each other, so need to consider both when evaluating foods. I think for me it was the peanut butter. Have you ever determined the total daily amount of folic acid and folate that you consider a safe amount to keep HFS at bay? I'm going to try to add up how much folate and folic acid I'm getting each day. The other observation I've made regarding my HFS is that the symptoms have been worse in the middle of the night.
0 -
Yes, I have reduced my folic acid intake per my oncologist which has helped. That's one factor in the overall picture.
0 -
weninwi..I don't add up the folate. I now know what to eat and a little of the "forbidden" foods don't bother me. Moderation is the key. It doesn't seem to matter whether it is folic acid or folate. And I also quit taking my multi-vitamins.
This is what I used to eat-8 ounces of orange juice with breakfast....large spring green & spinach salads for lunch with avocado, chick peas, pickled beets....broccoli or dried beans with dinner. Nuts for snacks.
My folic level must have been off the charts.
Now since I also have hypoglycemia, I have 4 ounces of V8 with breakfast....iceberg or red lettuce with tomatoes, cukes, etc for lunch. No broccoli or dried beans.
That has made an amazing difference.
When I go to my daughter's house for dinner, I eat some of her amazing broccoli or spinach dishes and if I eat small portions, I have no problems. But if I eat too much, my hands and feet get very red the next day. My reactions are the next day, and the redness does dissipate through the day if I am careful.
But I haven't had any infected nails or deep bleeding cuts in my feet for over 2 years.
My onc won't prescribe more than 3,000 of Xeloda a day no matter what our weight is. I started out, being 40 pounds overweight, at 2,000 a day. (I have since lost 30 pounds-yay). When my feet got horrible my onc took me off Xeloda for 3 months, but I went back on after 7 weeks since I had figured out the folic problem. But during that time, I got a spot in my liver, so I begged to go up to 2,500.
And the 2,500 doesn't bother me now that I am watching my folic acid/folate.
Cookie-I am glad that it has helped you.
0 -
I have not been given any drugs yet for my stage 4 cancer (and it's been 2 months since my mets were seen in the ER!), but am following this thread now, because I'm sure Xeloda is high on the list of possibilities of what I might get. This is all very interesting. Like Wendy, I too have learned over the last couple of years that folate and folic acid are two distinct and separate things. I've also learned that foods that are high in folate and folic acid are "extra good" at fighting cancer, so when they have to be excluded it's one of those trade offs that you have to really question. All those dark leafy greens, etc. are supposed to be great cancer fighters and to lose that would be a hard trade for me, although the cucumbers, etc. that Denny mentioned also have their benefits for sure. (I read a lot on the Foodforbreastcancer site.)
Denny, I've tried to build my diet around similar things as you - lots of leafy greens, legumes, nuts, etc. If those make Xeloda worse, I'm going to really have troubles if that's what they give me. My oncologist already suggested Xeloda to me back when I was "only stage 3" and getting radiation, but I declined at the time - had no idea of this hand foot stuff; of course no one bothered to mention it to me back then, as it's a bad side effect, and they don't like to talk about those. I need to come here to learn about these things. Since the oncologist offered it before, I have a feeling it will be high on her list this time around.
I really appreciate all of your posts, because it helps me think through and prepare for what's ahead. Thank you all who are here and have already had some experience with these stage 4 drugs.
0 -
I saw my dermatologist and talked with him about my HFS symptoms. He said the redness and burning, etc is inflammation and results in histamine release, so anti-histamines (like benedryl, and famotidine (Pepcid) might blunt the effects. I've never heard mention of this before so asked my oncology pharmacist today. She says...studies have not found any treatment that prevents or blunts the effects of HFS - only "holding" and "dose reduction" - and the usual advice about using creams.
Threetree, the opinion I was given by two MOs (one being my Mayo second opinion MO) and also given by several women who post on this thread is that the 7on/7off schedule results in fewer side effects. I've just been slow to request this.
I mentioned my HFS symptoms during the MBC Zoom meeting yesterday and a couple of the members mentioned the use of sheep skin booties to reduce pressure on the feet. I don't like the idea of wearing booties in bed, but I will try putting a small sheep skin at the bottom of my bed where my feet rest. We'll see. Another change I'm going to make is to stop wearing socks in bed at night in order to hopefully keep my feet cooler. I've been wearing cashmere wool socks that are wonderfully soft and keep my feet warm (it's cold in WI), but maybe my feet are being kept too warm thus making the HFS symptoms worse? In keeping with the advice to avoid hot baths and showers.
0 -
threetree...in my 21+ years of Stage 4 MBC de novo, I have not found any foods to really make a difference as far as fighting cancer. But I agree that they are healthy.
On the other, it scares me that healthy greens can cause such damage to my feet. When my onc gasped in horror at my huge toe blisters and infections, I knew that I had to do something. It took 7 weeks for those infections to heal.
Folic/folate might not affect you at all, but about 75% of us are affected. Moderation is fine. I can eat a small spinach salad with no problems, but not the huge ones that I was eating.
I used to roast a lot of broccoli, cauliflower, peppers, onions, & potatoes and eat them for dinner every night. Now I just eliminate the broccoli or just use a small amount.
It's a small price to pay to keep my cancer at bay.
And, again, my folic blood levels are still normal. So I am still getting plenty of it.
0 -
hello people.
So trying to figure out what doee of xeloda should I go for.
Just one 6 mm area in the lung below the neck , above the last bunch of tumours was fried by SRS.
I have had 1 week of it at 2600 mg. When do you side effects start ? I am very tempted to ask for a lower dosage - I do not want to ruin my body with more than necessary nasty stuff... I was on no medication for 1 year - it has metastasised into brain in that yer but in the body only 1 6 mm are in that year... So I think what dose of xeloda do I need in addition to tucatinib and herceptine...
0 -
anotherone -Everyone reacts differently my HFS didn't start until after a couple rounds. You will see it creeping up so before it's gets out of control. I started on 3,000 but once HFS started worsening I reduced to 2,500 and that works for me. So to me I would just wait and see what you are able to tolerate. I have a low burden of metastatic disease but you have to remember the horse is out of the barn already. Since we don't know where it is hiding we need to remain in defense mode. I'm sure your MO will work with you to find a tolerable dose that doesn't hinder your daily life.
0 -
Wendi- sorry to answer so late- but, my DD had a lovely baby on Friday so we were off with her!
I think we are all different and therefore must not get too fixated on what worked for someone else. so I will just tell you my experience which I mentioned before. I was quite ill when I started Xeloda and getting many blood transfusions, my kidney function was affected (went back to normal) so my initial dose was 2500 mg 14/7. after a few months I could only hobble to the bathroom- although feet had been red and burning for weeks already. My MO decreased my dose to 2000 mg per day - she told me once a drug is known to work- it is likely to work on a lower dose as well (we know this is true with the cdk4/6 inhibitors.) I was much better with the HFS, but, started to get low ANCs- she changed me to 14/14- which was fine with the ANCs, but, made me nervous to be off meds for 14 days every month- so begged for 7/7 which she reluctantly agreed to and it worked for 2 more years. My ANC was perfect on 2000 7/7 and I only had dry feet- no pain, took 4 mile walks (in HOKA 1 shoes) and hands were fine- I am a quilter and would have been devastated to have hand issues. I did not change my diet- I don't love veggies- but, do eat them in moderation, I don't take multivitamins.
I also mentioned that I heard that USC gives 2000 mg to everyone to start.
I never heard anything about Xeloda not working in HR+ disease
0 -
On a separate note, someone mentioned where generic drugs were made and I read a book called "Bottle of Lies: The Inside Story of the Generic Drug Boom" by Katherine Eban. it is a somewhat scary book which will inform you greatly about this issue. I think she also stated that only one small pharmacy in the US actually tests the generic drugs they get before dispensing them- most don't.
0 -
Wendy - I thought I saw on here not long ago where someone posted that they were taking Benadryl (antihistamine) for their hand foot syndrome. Their complaint was how sleepy it made them, so they take it at night. (Maybe I'm wrong). Also, it doesn't disprove what your pharmacist said about no scientific proof yet of anything helping, but it does lend a little more "something" to the idea of anti-histamines possibly helping. Also, I love wearing socks to bed when it's cold. Where I am isn't as cold as Wisconsin, but when it does get cold, socks to bed are the best! I find that overall I prefer to keep my feet bare and cool at night, and usually take my socks off when I "get comfortable" in the evening and prepare to watch a movie or something before bed. With shoes and socks on all day, they just get too warm and boxed in or something, so I really like to air my feet out at night. In that regard, I think the sheepskin with bare feet on it might be a real good option.
Denny - The food thing is interesting. Sometimes I think it's like the AI's - you'll never know if it actually helped you or not, but it might, so you try to do what you can with the "food as medicine" idea. That's one of the weird things about this cancer business. There are people who are severely overweight, eat lots of junk food, and who never exercise, and their cancer never returns, and there are those who "do it all" with the diet, exercise, weight maintenance, etc. and their cancer can go wild quickly. I don't think there is any way to know just which drugs, food, or lifestyle factors really truly help one person over another. For me, trying to get some benefit with food I think is just mostly an effort to tell myself that I am trying to do everything and not just sitting around hoping that the doctors and their drugs will "cure" me. I feel like I have to make some sort of effort of my own, and diet and walking are what I do. Whether any of it has/will help at all, is anybody's guess.
Good info for me to file away that simply reducing those high folate/folic acid foods helps noticeably, and complete elimination isn't necessary. I am also extremely inspired by your 21 years. That is fantastic and gives me some hope that I might not be gone in 2 months or something (although I've heard that can happen). Keep up the good work - your success is amazing!
0
