All about Xeloda
Comments
-
For the newbies...I have been on Xeloda for 3 1/2 years and just recently figured out that the reason for my very sore feet was that I had been eating foods too high in Folic Acid (healthy stuff like leafy greens, broccoli, dried beans, etc). I had to take a 7 week break from X.
Now I have been back on X for 2 cycles and watching my foods. And my feet are fine now.
I also use Aquaphor night and day.
0 -
Mermaid, you are on a higher dose than I am. He put me on 2000 2x daily, 7 days on 7days off. We'll just have to see what happens, hoping for good luck for all.
Denny, always love to hear from you with your long term experience. That greatly helps with the anxiety!
0 -
Attempt 2 on xeloda. Started back up yesterday -- 500 2x a day. Am taking Ativan to tamp down nausea -- only thing that seems to be working. Trying this for two weeks with one week off. Not sure what the plan is after that, but this seems to be all I can handle right now. Fingers crossed it does something. Very low grade nausea yesterday and today, able to keep down some fluids and a little bit of food (toast, applesauce, canned fruit).
0 -
Dorothy! Thanks!
BevJen- hang in there!
0 -
Thanks Denny,
Hope it works that long for me too.
Will definitely watch out for high folic acid in foods. Great tip thank you
0 -
question about xeloda that's been puzzling me:
If someone has estrogen dependent cancer (as I do) and they are put on xeloda, what is there to slow down the effects of the estrogen? I had this exact question when I went on keytruda and all estrogen blockers (I was on fulvestrant) were stopped after 17 years of anti-estrogen therapy.
Anyone have any idea or has anyone asked their MO this question?
Thanks.
0 -
Hi BevJen,
I can't comment on your specific case but Xeloda will work regardless of estrogen receptor status. My oncologist likes to switch back and forth between chemo and endocrine treatments to try to avoid resistance as long as possible. Yes, you are producing estrogen but it will not have an impact on the efficacy of a chemo treatment.
In my case, at this point my MO feels that I am now endocrine resistant so estrogen blockers and other related treatments will not be effective in slowing down the cancer. If this is the case, I believe my cancer is no longer being fed primarily by estrogen so while my body is still producing it the cancer has created a new pathway to grow.
0 -
Welcome DorothyfromKansas and Mermaid007, hope your se's are few and this drug is very effective for you! Hope we can be like Denny and still on X 3 years from now!
BevJen, after 7 years of endocrine and targeted therapies, I too had a hard time wrapping my mind around the idea of chemo being effective regardless of ER/PR/Her2 status or mutations. It felt like a turning point in MBC tx to me. I hope your new low dosage of X will be tolerable for you. Keep us posted.
Nopink2019, How is the D? This was the main problem for me when I started X at 3000mg a day. Imodium was no help. At my nurse's suggestion I got an rx for diphenoxlate-atropine (2.5 mg) and it worked better, but a dose reduction was the ultimate answer. Hope you are doing better.
Sadiesservant, I am still intrigued by your mo's philosophy of switching back and forth between working treatments. I had wondered if this sort of scheme could work to keep the cancer confused and not knowing which way to mutate. Pretty sure that like you, I am now endocrine resistant, but I like the idea. Hope you are fully enjoying your break from tx.
Best wishes to all.
0 -
Okay, folks, it's me again.
For those of you who had issues adjusting to xeloda, how long did it take for you to adjust? So I'm just about at a week at 1000 per day. I still have low grade nausea that never goes away all day and night, and that's while I'm taking Ativan to help with it.
I am supposed to restart PT next Friday as an outpatient and I am nervous that I won't be able to do it if I have low grade nausea. I've lost some of my recovery from when I was in the rehab hospital, and I don't want to spend my life in a wheelchair or using a walker. Feeling like this is giving me no motivation to do anything to help myself.
Any words of wisdom are welcome. Thanks.
0 -
BevJen...so sorry for your problems! When I had to take a break from X since I ate too many foods with Folic Acid, it took 6 weeks for my feet to heal.
That's really all of the problems that I was having. I am on Facebook Xeloda groups and some ladies have more problems on the different brands of Xeloda.
I am on Capecitabine, and there is another generic chemo besides the actual Xeloda. Those ladies had more problems on one kind than another....even though they are all supposed to be the same.
0 -
BevJen- I am wondering if you can change to 7/7- a lot of the rough side effects for some people come in the second week of the 14/7.
most weeks I am fine- I do have occasional weeks of extra fatigue. I eat ginger chews for nausea. although I think that Ativan is amazing for the nausea- I took a small dose every night for 2 months when I first started Xeloda due to severe illness causing all sorts of other issues. was able to stop it cold turkey without problems.
Fingers crossed
0 -
hi everyoneI started x about 3 months ago after 6 years on tamoxifen and 1 1/2 years on ibrance. My tm’s were slowiy going up for two years but my PET’s were all stable in fact showed no evidence of metastatic disease my onc finally ordered a cat scan and found I had a progression in my abdomen. I stared xeloda and was a little anemic but over the last 3 months my counts are now so low I’ve needed two blood transfusions. My onc thinks it’s from the x I’m on 3000 daily two weeks on. He put me on a break until my tm’s are done next week. Has this happened to anyone else? If it’s working I’d like to stay on it but will know more next week I’ve had no other side effects so it’s been relatively easy for me. The next choice the onc mentioned would be piqray. Any advice would be welcome.
Kristin
0 -
Hi Kristin,
My MO had me complete six cycles and then stop as apparently he was worried about my marrow. My red blood cells were hit hard several years ago on Ibrance and have never recovered fully, stubbornly remaining at the low end of normal. They started to dip again on Xeloda plus other related measures were out of whack a bit. As I understand it, these drugs can be toxic to the marrow which means walking a fine line between treatment and giving the body adequate time to recover.
0 -
Hi everyone, I’m new to the Xeloda board, have questions as I might be out on it , 2 small lesions were found in my liver after my CT scan. Now I’m going on for a PET scan in couple of weeks to b sure. But MO wants to put me on Xoleda if PET shows it is in fact Mets in liver. I was on verzenio/letrezole. He told me to stop taking verzenio the other day. I want to know what SE conmemora with Xoleda. Does your hair fall out completely, is it almost like IV chemo. Just in pill. I want to be prepared,, my sisters wedding is coming up August and I have vacation to Hawaii planned. Not sure how I will be feeling or if I will need a wig. I do well on Verzenio, very little SE. thank you in ad
0 -
Hopeful, welcome to the Xeloda thread. We are all different with ses but I found my hair came back thicker on Xeloda. I have been on it a year and it is nice to have a full head of hair again although it is a little frizzier and wiery. While Ses vary, mostly I have fatigue and some diarrhea although some have constipation. The biggest complaint for most people is with Hand and Foot syndrome: Sore, pealing feet and hands. That is what most oncs watch closely as it is a good indicator of too strong dosage. If you read through you can find how we all deal with it, but I use Aquafor and Eucerin moisturizers. I know others will chime in so I will keep mine short. Althoug some have immediate, strong ses, some of us do fine and you hopefully should be able to travel and celebrate with minimal issues. I am even planning on a cruise in a couple of months. Good luck!
0 -
Hi Hopeful,
Following up from IntoLight’s comments, Xeloda is typically pretty tolerable. It almost completely resolved my liver mets after six cycles and my side effects were manageable. I don’t believe it causes hair loss. In fact, my MO listed that as one of the advantages. I had occasional diarrhea, nothing difficult to deal with. The biggest issues for me were fatigue and hand and foot syndrome. The HFS was exacerbated by my lifestyle with it impacting my feet more than my hands. I have a large dog so not walking is not an option.
I hope you land on a treatment that you feel comfortable with and is effective.
0 -
Hopfull....I had problems when I ate too many large spinach salads for lunch (for over a week). Healthy foods like greens, broccoli, legumes, etc are high in Folic Acid. And too much Folic Acid makes the HFS worse for me, and also others.
So eat everything in moderation.
I use Aquaphor day and night. My hair is fine and thin, but has always been this way.
0 -
Hi All,
I am having some really big hair thinning. The front of my hair looks terrible now, I see the regrowth but it is not keeping pace with the thinning/loss. I don’t know if this is a carry over from the Ibrance, Afinitor, and Piqray of the last 3 years or the Xeloda of the last 2.5 months. Any suggestions? It’s really a drag and I wasn’t expecting it.
Thanks!
Stace
0 -
Stace, I can tell you that my hair thinned on Ibrance + letrozole, and grew back to normal thickness when I switched to xeloda (after a four-month try and fail of afinitor + Faslodex). So let's hope your thinning turns around soon. There is a product called Toppik you might want to look at. It is artificial hair fibers that you shake into thin spots.
0 -
Stace,
I had thinning with the Ibrance, it came back full and thick with the Afinitor and when I started the Xeloda I had a lot of thinning and I thought it might be th Xeloda- but, it was my bout with severe anemia that caused it and after a few months it started to fill in again- so I don't think that Xeloda had anything to do with it, although it is listed as happening 6% of the time.
Hair grows faster in the summer and being exposed to sunlight - so now is a good time for hair.
SP- never heard of Toppix- sounds intriguing, but, somehow I have questions (for a friend)
0 -
Oops, I edited my previous post to correct spelling. The product is Toppik.
0 -
Good morning NKB and Shetland Pony,
Thank you so much for taking the time to reply. The thinning/loss started 4 days into Xeloda, and 2 weeks after stopping Piqray. I can't say I noticed any real hair issues on Ibrance/Faslodex, Afinitor/Aromasin was wonderful to my hair. I am not sure what to attribute this thinning/loss to, the Piqray or the Xeloda. I am seeing some regrowth but what is coming out when I brush my hair is stunning. I would guess it is 2X what is normal hair loss. Oddly, my nails have come back to normal strength. Really feeling the hair loss, must be bringing back the total hair loss of 12 years ago when I was initially staged and did 4 rounds of TC.
Not even sure Xeloda is working yet, first blood draw for TM's is July 19. Maybe a dose reduction will help with this and the swelling at the bottom of my feet. Planning to discuss with MO. Still on 3000mg per day, 7/7.
Have a lovely Sunday!
Stacey
0 -
I saw my onc on Friday and he is concerned about a swelling in my supraclavicular area. Will have a CT scan next month.
I asked for a blood test to measure my degree of antibody efficacy from my vaccines. This is the result, which I don't understand. So I will be calling my chemo center tomorrow. I hope that I have a higher percentage of protection than 8.29% !
SARS-COV-2 AB (IGG) Spike, Semi Quantitative 8.29 index <1.00 index H 0 -
Stacey, I hope that your hair loss slows down. Mine did get better after a few months on Xeloda. I also blame my Prolia shots, and possibly also from the addition of Salmon Calcitonin nasal spray for my Osteoporosis.
When I received a Restasis shot a few years ago, I had a definite loss of my hair. Heck, my hair is thin and fine as it is!
0 -
The data out of Israel re the Pfizer vaccine (and probably true of the Moderna as well ) show pretty good efficacy for people with cancer and on chemo, after the second vaccine. not too good after the first. 18% of the people in the study had BC and most were on chemo it didn't say which ones, most in the study were stage IV cancer. efficacy in high 80s. Israel is the country that made a deal with Pfizer early on to swap lots of data for access to vaccines.
0 -
Good to know NKB,
Unfortunately, in Canada they extended the time between the first and second dose in an effort to get as many vaccinated as possible quickly. Here in British Columbia they finally made the decision to hold cancer patients to three weeks between the first and second dose of Pfizer on June 3rd. That was four days after I was allowed to book my second dose and the earliest appointment was three weeks out. So, for me, there was eleven weeks between my first and second dose. I suspect the majority of cancer patients here are in the same boat as they made a point of vaccinating the clinically vulnerable quickly.
It’s been hugely stressful for me as I now don’t really know what I should do. I haven’t been able to find evidence of antibody testing here but have no idea if I am covered or not. And with the easing of restrictions it’s a bit scary - my mask protects others, not me. Work is talking about getting people back to the office with masks optional. They say they are planning to keep the two person per elevator rule but I don’t think they understand the reality that it would take 24 hours to get everyone in the building with that restriction. 🙄
It’s funny really. I have held it together, shedding very few tears over my diagnosis but the situation with Covid has really upset me on more than one occasion.The medical advice is that cancer patients should continue to social distance, wear masks, etc. So… with a best before date stamped on my forehead I get to spend my days in isolation? But, at the same time, after everything I am going through I will be seriously annoyed if a bloody virus takes me out!
Sorry for the rant….
0 -
On a Facebook Xeloda group, someone posted the efficacy rate of those of us on chemo. And Xeloda and Gemzar lowered the protection to only 17%.
I can't find that article again though. But it is very disconcerting.
There were about 9 other chemos mentioned and I didn't recognize them for BC. But I don't know all of the real names of chemos.
My area isn't too bad currently for cases, but my county is one of the dumb ones with many Covid deniers. So I will continue to double-mask in the rare cases that I leave my house.
0 -
Denny- there is new data on this.
Sadies- I don't know about the delay in doses- they are doing it in other countries also- Dr Fauci specifically disliked that strategy. I would try very hard to protect yourself even if you are the only one wearing a mask- nobody really knows a lot of this stuff yet- lots of theories floating around. And even If everyone is vaccinated at your office- they may be going to bars and restaurants with unvaccinated folks.
Here in the Bay Area of California vaccination rates are fairly high and covid rates fairly low- I still see lots of people wearing masks here- esp inside. they reinstated a mask mandate in LA however. I also have a fully vaccinated friend who got covid (delta variant) at an outdoor wedding!! he wasn't very sick from it luckily-
Israel also said that the Pfizer vaccine protected only 64% against the delta variant which is scary and that possibly vaccines made in other countries (ie China ) may not work at all against the variant. that is scary since they are being used in many parts of the world.
I have read mixed info about getting a test to see if you produced antibodies with the vaccine- most tests are not set up to be accurate apparently and there many kinds of immunity produced that take very special tests to be detected- B cell and T cell immunity. Vaccines usually provide better protection than getting the disease also.
It's the Wild Wild West again
Stay safe
0 -
I had been going to Walmart for curb-side grocery pick-up, but last week I had food delivered to my house. I subscribed to that at only $8 a month.
I love the fact that I no longer have to drag groceries up my steps from my garage. I have the food delivered to my back door and can bring it right into my kitchen.
And I have been ordering everything else that I need online or delivered from Walmart. So I will be in hibernation for a long time. And I am okay with that.
0 -
Hi all. My hair is coming back slowly but surely. I had my first haircut on Friday since August. It's really cute - rather "spiky" but that seems to be rather trendy. Don't know if the trend will continue but it' really looks better than no hair at all. The lady who cuts my hair is so great and can do wonders with whatever you have. Her husband is going through chemo too so she is very sympathetic. I lost my hair while on Taxotere. I had to stop that since it made me so ill I ended up in the hospital for 6 days. Once I got on Xeloda my hair seems to be coming back. I've got an appointment with my oncologist on Thursday - first time in 4 weeks. I usually go in every week to two weeks so 4 weeks in between appointments is like a holiday.
0
