All about Xeloda
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GOOD NEWS!! After 3 months on Xeloda my repeat PET Scan showed NO CANCER!! for now. At the moment I'll put up with the side effects to get these results. I had ordered Udderly smooth but it was the regular cream and I was very disappointed. I see that Udderly Smooth Extra Care 20 is the product to buy. The Urea really makes a difference. Again the product I use is Atrac-tain,(bought on Amazon) it's10% Urea, and I like it a lot. I have to use at least twice a day for best effect along with gel booties when necessary (mine are hot pink).
NINA
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Lizo,
You should be aware that ER-positive cancers that mutate to ER-negative have been found to have a much higher rate of responding to immunotherapy than conventional ER-positive or ER-negative cancers. The two women who have been considered cured from immunotherapy were both in this category- The reason why this cancer type is so responsive is under active investigation, but at least 50% respond to immunotherapy.. which is very high. Response to immunotherapy also works better the sooner it is introduced, rather than after lots of chemos..
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Cure-ious,
Thank you for the post!!
Liz and I would like to consider ourselves informed when it comes to her treatment options but we do put a lot of trust in her MO and her whole healthcare team. This detail about immunotherapy is interesting and unknown to me. The only immunotherapy option Liz had was a trial in Jan 2019 when she was offered a blind trial that involved paclitaxol plus immunotherapy but her sample didn't end up qualifying. She was okay with that at the time especially since we didn't even know if she was going to get the immunotherapy.
I will look into this. Thank you.
As always. Prayers for healing to all of you.
Grant.
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Yay Nina!!!
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Fantastic news Nina!!
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Wow, Nina!! That is awesome news! Congratulations!
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Good news Nina!! Enjoy the moment, one which we are pleased to share with you!!
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Nina GOD Bless you. I am so happy for you! Zeloda worked very quicky for you. I'm on it too since 8/31 and it has killed no cancer cells. (sigh) It has however stopped all progression.
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NinaCA..we like to hear good news! Anyone else?
Denny123..any ideas yet why ribs are breaking?
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Sandi-no idea why. I will see my onc in Sept after my August CT scan, and will ask him.
I go on Zoom meetings with my former "Our Clubhouse" for cancer survivors and caregivers. And on Tuesday, there is a PT lady who deals with exercising for patients.
We were discussing it, and I know that it originates with my muscles, since the pain always starts at my lower back, then travels up my side. Then the ribs break. I have exercised all of my life (until lately), and I also did Pilates. So she agreed that I have to strengthen my core muscles, after I heal.
So she is going to work on a routine for me to gently try to build the muscles up.
I do have scoliosis, so that probably doesn't help at all.
Thanks for asking!
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Has anyone been getting warnings on this site? I can't log in with my desktop since I get warnings that it is unsecure.
I am on my cell now and did contact the mods.
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Denny, for the past 2 days I could not access if I typed www.breastcancer.org.
I could get in if I used my mobile data and not Wifi. Had no problems with Wifi access with all other sites (.com or .org).
Odd..never seen that before.
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I haven't noticed any problems, but I've been mostly on my phone.
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Denny,
Seems to be fine for me.
Grant
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I haven't heard back from the mods yet, but the warnings said that our private information is visible to all. This site was visible via Google many years ago, but I thought they fixed that.
I typed my name into Google back then and all of my posts here showed up.
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Denny123, over on another thread Candy-678 posted she got the same notification as you and she also contacted the Mods. That's odd they haven't replied to you, but don't think they have to her yet either. Several others said they also had connection problems. To my knowledge, the Google problem is still a problem. I changed my screen name a couple years ago when I learned that posts show up on there.
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Nina, that is news to celebrate! Yay!
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Where oh where has my nipple gone' oh where oh where did it go? lol
As most of you probably know my breast cancer had broke thru the skin and took up residence on the outside of my breast. (different TX's have made it smaller but it always find it's way home. I've had this for about two years. The outside is covered with thick crusty areas.
Well for the last month or so, it's been hurting and I've feeling a pulling sensation. So (ignoring my Onc advice) I took one of the crusty areas off. They were very crowed together. This am when I awoke, I noticed that the area that I took off was quit sunken in. Nipple nowhere to be found. Seems to me like this is good.
got Tm's back Fri. it was 30. They've been slightly going up every month. At the end of taxol, they dropped to 14. A year later at thirty. I'm telling myself it's dye off!
Hope every one is having a nice Sunday.
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oh gosh snooky! Sure hope it gets better! I have Barbie boobies since I didn't get nipple recon.
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Thanks for the encouragement and the laugh! barbie booties.lol
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Hello, I had a rough start with Xeloda at 3300mg/day, 14 on, 7 off.
I was decreased to 2800mg, then to 2300mg both at 14/7. At cycle 3, I ended up 2000mg, 7/7. With each cycle (28 days is a cycle for 7/7), my MO added back 150mg. Trying to find the best dosage.
At cycle 5, I am now back up to 2300mg, 7/7. Liver enzymes are now normal, CA15.3 continues to decrease. Scans in September. Feel great.
Edited to clarify cycles.
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Hi SandiBeach...I just completed my second cycle of Xeloda at 3500. I don't feel too good--mainly gut issues and headache-- although my feet are doing ok. I get my labs on Wednesday so hopefully it will tell us something. I plan on requesting a lower dosage although I do want as much as possible to kick this thing well. We shall see...
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Intolight..what type of gut issues? I had bad diarrhea at the start and then developed symptoms like GERD. Pepcid AC took care of that. With decreased dose, all that stopped. But my fear was that I was being under dosed. My MO reassures that is not the case, based on labs, my reliable markers and physical exam. So it was really me that pushed for adding back 150mg per 28 day cycle..
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Sandi, yes, I have diarrhea and upset stomach. I have had GERD but take Prilosec (Pepcid doesn't work for me) and it controls it fine. My MO did give me Zoloft which helps although I take it hesitantly as it can lead to constipation which is worse for me. I also just feel like I have a mild case of the flu all the time and a constant headache. I just received a call from my nurse saying my MO wants to change my appt Monday to a phone appt. I said yes but for some reason I never seem to feel I communicate as well over the phone. I will have notes in front of me and my husband beside me which is a plus, and hopefully that will help. But I do hope she will cut back the dosage a little bit. I have not had a PET yet with Xeloda but I am sure she will order one next month.
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intothelight- maybe you could have a video visit. They do that in Northern California Kaiser via MyDoctorOnline app. not sure if soCal has it.
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Nkb, I am with Kaiser. I haven't requested a video visit although I do think it is possible. My MO and I have had phone visits before so I think she is comfortable with that. If she wants to "see" me, she will request I come in. I had an in-person visit last time.
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Intolight, my MO said not to take the Rx Prilosec, but okayed OTC Pepsid AC.
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Intothelight- just thinking that communication might be easier with a video appt since you said the phone was hard for you. I am glad that you have that option.
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Intothelight, sorry to hear you're not feeling well. Hoping a lower dosage will resolve the gut issues.
I'm on day 13 of my first cycle, and I'm happy to report I'm doing much better than I expected on 4000mg/day. Today, the big D came, I'm surprised it wasn't earlier, but maybe it was something I ate. Other than occasional reflux and increased belching, Madame X is treating me pretty well. Hope it's really doing its job! We shall see, and if I continue to do well with my next cycle.
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Hello, I learned something useful today. I have been on Xeloda since last year and had initial problems with HFS. In April this year my hands were really bad l i had the palms of my hands in the sun for a day or two. I had to stop and start and then was off because of a surergy. I resumed and the hands are already red so I spoke to the pharmacist. She told me that lots of patients are having problems because of hand sanitizers mainly becdause of the alcohol. She recommended hand washing and avoid hand sanitizer where possible. Wanted to pass this on. I will need to wait and see if that is the case, but it seems to make sense since the redness started in April in the middle of lockdown.
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