All about Xeloda
Comments
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I got my Pfizer booster today! Even though my second vaccine was in May, I was advised to get the booster now since I am so high risk.
As I sat there for the required 15 minutes, I was surprised at how many people came in for their first shots. And super amazed at the operating room nurse who was also getting her first shot???
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Denny, I am with you at the surprise with medical personnel putting off getting the vaccine. My own DIL is a labor and delivery nurse and is trying not to get the vaccine even though her hospital is implementing a mandate soon. She is nursing although the baby is now over two years old. She waits until the child (her third) weans himself, but still is hesitant. Please, I am not wanting a political discussion here...just an observation like Denny. I am one week past my booster shot.
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Into-I agree! My daughter is a home health psychology nurse and was required to get the shots immediately. And also to wear the full head gear.
I think that gear is relaxed now, but I will have to ask her.
I am in PA and our Gov is pushing for a mask mandate, which makes sense. The hospitals and nursing home workers really should be protecting the patients. But we already have a shortage of nurses and aides, so now it is getting worse.
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Well, I have cataracts so am now trying to schedule surgery. I thought for a long time my blurriness was due to Xeloda. Now that I have switched to AA I am still a little blurry but not as much, and my stomach issues have improved greatly too. Just thought I would mention this before I leave this forum. I may lurk for awhile because I do care about you all. Chris
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Chris...good luck! It is hard around here to get elective surgeries since our hospitals are full.
So far, the booster has only cuased a slightly sore butt (but I have plenty of padding), and mile nausea.
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Intothe light- so glad that you are having a good experience so far with the AA.
I hope that the cataract surgery will go flawlessly. everyone I talk to who has had the surgery is delighted!
I still look over at the AA thread from time to time- it is pretty quiet though
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I had cataract surgery several years ago. I didn't realize how terrible my vision was until after I had that done. My vision improved within an hour after the surgery on the way home. You will probably need to purchase new glasses after a short period of time.
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Good morning all,
I had great results at 2 months, 3000mg per day. Dropped the dose to 2000mg per day, trying to minimize some of the side effects. TM's rose. Back at 3000mg per day. Has anyone had a similar situation? I wonder if the drug has stopped working already or it just won't work at the lower dose.
Exhausted by this... What comes after Xeloda?!
Stacey
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Hi Stacey. Glad you had good results. I started at 3500 mg, dropped to 3000 then 2500 mg and had a good run for a year. My MO doesn't depend on markers because mine were always low, although it might have caught something with dosage reduction had we looked. After progression I am now on Everolimus/Exemestane (Affinitor/Aromasin). I am just finishing my first cycle so I have no results yet. It is very tolerable for me; in fact, so far I feel better than when I was on Xeloda. Hope this doesn't mean it isn't working... This is the last oral med that should work for my specific cancer type before moving on to IV chemo (which I have never had). Chris
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Denny123, do you have a link for which silicone socks you wear? Thank you.
Stacey, I’m sorry you’re having issues. I haven’t started yet, so I can’t help with any answers.0 -
Into Light,
I had a good 18 months on the AA protocol. I found it very doable. I wish you the same!
I am back up to 3000mg now, we will rerun markers in a month. Will let everyone know the results then. I had IV chemo when I was diagnosed with stage 2, 11 years ago. Not anxious to rerun that race with no end date...
Wishing you a good run on the AA protocol!
Stacey
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KBL....I like these with the straps since they stay on easier. I also buy silicone toe covers that ballerinas use, so that the sock toes don't rip through.
https://www.ebay.com/itm/303635705836?hash=item46b2192fec:g:0LkAAOSw~65cgcMI
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KBL- oops - the link didn't work. Go to eBay and put in this number - 303635705836.
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Denny123, Thank you so much. I was able to see them.
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Hi all. I have had what I would call severe side effects from Xeloda. Three weeks ago I started having HFS. My oncologist took me off Xeloda for two weeks. The HFS has gotten worse. My feet have started having bleeding cracks plus they are very red, skin is peeling and they HURT. I have been using Aquaphor but it doesn't seem to be helping. I would like to stay on Xeloda since my tumor markers have been going down (slowly but surely) but the HFS is intolerable. I can barely walk. I have been using a cane to get some pressure off my feet. Hands are getting splits also. Any suggestions.
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Wandering, my oncologist prescribed some cream, Betamethasone, which helped my HnF. My dermatologist told me to use the cream on my feet twice a day for two weeks and it really helped although I never got as bad as you. I have also used lotion with urea but be careful to use one with a lower % than 20. It may be more helpful as a preventative though. Good luck!
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Wandering-did you see all of my posts about avoiding foods with high folic acid? It took me over 3 years of infected toenails and deep bleeding cracks to finally figure it out.
Since I have avoided the healthy green veggies, my feet are almost normal!!!!
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Wandering, not sure if this will help you- I don’t ever go barefoot now, and all shoes must have at least a little bit of padding. I mostly wear very foamy house shoes all day. I use O’Keefes cream for hands and feet and sometimes wear cotton socks andgloves if it’s flaring up. I’m sure others on here have more advice, sorry you’re having so much problems with it.
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Do you have a specific recommendation for shoes to wear around the house (what kind and where to buy). We are home most of the time so something slipon, padded would probably help.
My doctor took me off Xeloda for another two weeks (that would be 4 weeks total). I would like to stay on Xeloda since the doctor is pretty happy with the results but the HFS is not bearable. I just need to get that under control. My tumor markers went down since my last visit even though I was off the medication during that time.
I don't eat foods high in folic acid. I post my food intake on chronometer and that website calculates everything including folic acid. I realize folic acid is not good for HFS after reading many posts on this blog about that subject.
Thanks to all of you for your support.
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Wandering- lots of people recommend Dearfoams which I ordered from Amazon but they didn’t do much for me, maybe I ordered the wrong ones. I remembered someone had bought me these fuzzy things for Christmas, never worn as I preferred bare feet. So I got them out, put them on, and they seemed to do the trick for me.
I never go barefoot now except in the shower. I wear Columbia or New Balance sneakers to walk outside. Padding is good but the the friction bothers me after about a mile.
I hear Vionics are good also but too pricey for me and don’t need anything fancy. Hope you are able to find some relief.Also I have to keep my hands and feet out of hot water when it flares up, and try not to grip things too hard, opening bottles and such, heavy things with handles, get someone else to do it or put some padding between your hands and the thing.
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lowering my dose and changing To 7/7 schedule worked for me
I mostly walk barefoot around the house since sweating in your feel is sposed TO make it worse. Sometime I put aquaphor on my feet amd then put bomba socks withgrippers on the bottom so I won’t slip. Otherwise I wear my ugg slippers.
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Wandering- My recommendations for footwear:
Dearfoam Slippers for Women, Darcy Velour Clogs- I even used them when shopping when my feet were really bad. They can be worn outside and the backs are low so they don't rub against my heel. I have several pair in many colors. Other dearfoam slippers were returned, these were the best.
Now I've graduated to "Cozy Crocs"- My outside shoes. These Crocs are lined with fuzzy fabric for comfort. They have a soft lining that feels good and there's enough room so my toes aren't squished together. Regular Crocs would not be gentle enough for me. Also When I bump into something my toes don't hurt because Crocs keep their shape and there is lots of air above my toes.
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I wear my cotton socks after lubing up with Aquaphor. Luckily most of my house is carpeted. I am too clumbsy to wear shoes around the house.
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Best slippers for me after trying several brands are Fitflop Chrissie. Not cheap and hard to source but definitely the most comfortable!
https://www.fitflop.com/uk/en/shop/chrissie-felt-slippers-p-Q67
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Hi everyone. My husband saw a video about a pill that helps with nerve issues (Nerve Control 911). I'm wondering if anyone has an experience with that. I've ordered a bottle and will let my oncologist look it over before I take any. There is a 90 money back guarantee so I should have some idea if it helps.
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Hello, Xeloda ladies. I am on day 12 of my first cycle and feel pretty good. I ate very little on day 9 for a CT and felt horrible, so now I know... I progressed quickly during three months of Faslodex, but I really do feel like this is working. All of the places that hurt two weeks ago have improved! Bloodwork on 10/14 will confirm.
To those of you with HFS, I'm sorry that you're dealing with it. How long did it take? I'm avoiding hot water and Folic Acid; I hope it's enough.
Sending healthy hand/foot vibes to you all.
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Piksie...good luck! On the CT scan days, I don't take the morning pills.
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picksie took a few cycles for me to get foot pain- with lowered dose and 7/7 schedule it cleared up. Good luck.
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What was your lower dosage. I have pretty bad HFS. Doctor took me off completely for 4 weeks. My next appointment is next Thursday and I want to talk to him about putting me back on but at a lower dosage. I was on 7/7 for about a month but the dosage was 3000 mg per day.
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wandering- I went from 2500 per day to 2000 per day. 14/7 to 7/7.
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