All about Xeloda
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Wandering-that new hair does come in cute. Mine wasn't frizzy like most ladies get. Mine was thing and fine, but it was hair!
I posted above about my bloodwork to test if I have antibodies. My chemo nurse told me that the result is simply that I DO have antibodies. It isn't the kind of test that shows what percentage I have.
So I will continue to hibernate.
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Hi, folks,
Has anyone on here ever taken xeloda with neratinib? Just checking, although I'm guessing not. That's the next step in my MO's plan for me. This week I'm on my week off from xeloda (3 on, 1 off) and my bubble was just burst because I'm going to start neratinib (a drug with no breaks) on Thursday, with a restart on xeloda next Monday.
Thanks
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Bev. did you mean to say 3 weeks on and 1 off? Usually it is 2 weeks on and one off. Just wondering...
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Nope, you're right, IntoLight. Losing count of the days, too. What does that mean?
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It means you are normal with a touch of "chemo brain." No worries. I am surprised I caught it!
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IntoLight,
Ha ha. Yup, that's me. It also doesn't help that I had just gotten off the phone with the DPharm at my cancer center with close to an hour of drug speak going. I felt like I had gotten a master class in nausea drugs.
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It's always something. CA15-3 has gone from 375 to 623 in 3 weeks. PET tomorrow and a doc saying Xeloda may not be working anymore -on it for 14 months so far. I was just figuring out how to reduce my dosage to make things more tolerable, I went down to 4 pills the first three days, heard the tumor marker news and went back up to 5 pills a day 14/7 and I'm doing okay, more highly motivated to tolerate side effects. My scans have been clear for a year so tomorrow will tell if they can "see" something or if it's still microscopic. I've even tried to convince myself the increase in markers not the cancer, is due to the vaccine (no science to back that one up). Also, I've been following up on my "eye" issues (irritation, tearing, gooey stuff etc.) and I was told I qualify for eye lid surgery (eye lift?) because the folds of my eyelids impede my vision (they droop) and that may help some of the irritation. Surgeon said he has not seen Xeloda affecting eyes, but he has seen it with Taxanes. Right now about day 10-11 of Xeloda is when my eyes get excessively bothersome. That's my science at the moment.
Take Care All- Nina 💕
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BevJen,
Are you in a state where marijuana is legal? I micro-dose everyday and find my nausea is under control and my appetite is better. Much better results than anti-nausea meds.
Stacey
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Stacey,
The answer is yes. I just haven't taken the time to figure out how to facilitate that. But your message makes me think about it a lot more.
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I'm with you BevJen, I don't even know where to start...
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Good luck Nina! My onc is concerned about a swelling in my supraclavicular area, and I am hoping that it is just swelling from my Covid vaccine.
And I have seen many posts on the Facebook Xeloda groups whose eyes are affected by Xeloda.
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Hi Denny, I haven't heard anything about swelling reactions to the vaccine, yet. They just had an article that chemotherapy doesn't make you more likely to get Covid. I'm waiting for the research that tells us if and how our production of Covid antibodies is affected by chemo. I know I have antibodies but the results don't tell the percentage. I found two Xeloda groups on facebook- do you post in both? Thanks for mentioning it, I'll check into it if I continue to be on Xeloda (tomorrow's PET will tell the story).
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Nina-the vaccines cause the lymph nodes to swell, so I am thinking that it might be the nodes.
I can't find the report from Johns-Hopkins that Gemzar and Xeloda cut down the efficacy of the vaccines. But my specialty pharmacist said that it is true to a degree. They are part of the Hillman cancer center of Pittsburgh, PA.
I do post in both of the Xeloda groups.
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Nina-hopefully your PET will show just a small area of progression- that is what happened to me about 6 weeks ago- my TMs were inching up and my hip was lighting up- they zapped that area and I am staying on Xeloda-
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Forgot to mention that I had a dream that I got a vaccine booster last night! they are giving a booster in Israel to those who are immunocompromised - although I didn't read who exactly they are including. Pfizer also met with Fauci and others re this, but, apparently didn't share their data that they say Suport this booster.
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Bev-Jen,
Go to a good dispensary, they can make recommendations! I am in LOs Angeles and use either Sweet Flower or MedMen. If we are talking about something for the nausea and a little appetite boost but no buzz, I use either gummy’s or I suck the chocolate off the chocolate cover almonds, these are edibles and have specific doses. I like the 4:1 ratio, CBD to THC. The CBD mitigates the psychoactive effects. The brands I like are Kiva, Wyld, or Care by design. If you are having pain, a good ratio is equal parts CBD:THC. Start with a low dose. Again, they are really knowledgeable at the dispensary!
Give it a try. Save your receipts, I deduct as part of my medical expenses. My MO also gave me a card so I don’t pay the tax.
If only it helped my feet! Just dropped my dose from 3000 to 2500 and had an extra 3 days off, started right back up where I left off. Between this and the handfuls of hair on my brush, I am decidedly way off my game.
Take care,
Staec
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Still ALL CLEAR on my PET scan from yesterday with CA15-3 markers rising to 623! I have a video conference with my MO on Monday - he says he has a complex answer to why PET is clear. I'm still staying on Xeloda, (a drug I know is probably better than a drug I don't know,) which means I'm still staying on this website.
Any suggestions as to what to use under the covers so the sheets don't touch my current sore toe? They can get real sensitive sometimes!! I do see vaccine boosters in our future. Nina
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YAY Nina! Keep it up!
Do you have the ice socks? I used those when my toes were sore. Also, during the day, I wrape thick surgical gauze around the toe with medical adhesive tape to hole the gauze on. Then a cotton sock over it.
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Nina, yay for good news. I have no suggestions for you since I currently just leave mine uncovered…
My next scan is Monday and we will see if I do another “scan dance”. I agree with staying on Xeloda since we know it. That is what I did
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great news Nina! Let us know the complex answer when you find out
As far as sore toes and sleeping or shoe wearing - I have some silicone toe caps that protect each toe. I originally got them at Rei- but, I don’t think they carry them anymore.
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Great news, Nina!
What about something like this cover lifter?
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Oh right...I have toe caps too. I bought some on eBay and use those when I wear shoes on sore toes. I have a whole arsenal of foot stuff now.
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sounds like we are going to hear a recommendation from the CDC whether we should get a booster of covid vaccine after a meeting re this on July 22- apparently several doctors have already given boosters to organ transplant patients, dialysis patients and other immunocompromised people - hopefully we will get clarity then and not muddle.
Even though Israel seemed to publish data say cancer patients got a fairly good response to the vaccine they are giving some people a booster. What can we make of this?
I would like a booster. Anyone heard anything about this?0 -
Had my six month scan after switching to Xeloda. Waiting for results next week. Really hoping I won't have to switch to IV chemo.
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NineTwelve, I have my scan tomorrow. Scanxiety is very real this evening! I also have to attend two difficult funerals this week. Praying I don't stress out.
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Good luck, IntoLight!
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Good luck, IntoLight. I hope the scans go well.
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Thanks, Intolight. Hoping your results are good, and I'm sorry for your loss. (I don't do funerals anymore - it's too hard for me.)
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Thanks NineTwelve. I don't usually attend funerals anymore either, but both of these were by special request. One a phone call from one of the daughters and the other a phone call from the husband, I thought that was unusual.
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NineTwelve & IntoLight....Good luck! I will have my scan in August. My onc is worried about a swelling in my left supraclaviculat area.
Ugh.
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