All about Xeloda
Comments
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Great news Denny123, long may it continue. I hope you don't get covid.
I was discussing covid with onc. nurses and there has been 1 cancer patient with covid, but they had mild symptoms and recovered fully, no long term problems. I think we have to be cautious until an appropriate vaccine protects and frees us.
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Thanks denny.
I think that so far my cancer center has had only 2 cancer patients with Covid and they were really sick. But they have recovered. But now a very good friend of mine with multiple myeloma was exposed and has just been tested. I am very worried about her.
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It is a very worrying time.
A close friend of mine, who has been very cautious since March, was feeling fatigued and had a an occasional cough. She tested positive last week. Luckily her symptoms remained mild, despite having multiple medical problems [not cancer] .She has no idea where or how she got it, as both her and her partner have been working from home, having food delivered, wearing masks etc.. I have only seen her once face to face this year, in my garden in the summer and she bought her own drink.
I miss close contact with friends and family, digitally meetings are not the same.
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Hi Grant I started taxol in mid-september and I'm finding it tolerable, although I did have to have a 10% dose reduction after the first two weeks because of side effects. I have lost my hair except for a few sprigs here and there that make me look like a funky baby bird.
The neuropathy in my hands and feet that I developed while on xeloda has worsened, but I am icing and doing finger and toe exercises which will hopefully help. I bought some slippers for icing on Amazon and some gloves although I haven't been is diligent about using the gloves during chemo since I'm using my hands to read or scroll on my phone or eat!
I have read that B12 also helps.
There is a taxol for stage 4 group on here but it is not very active.
Let's cross our fingers and hope the taxol is not only easy on your wife but effective. I have my first scans in December and we shall see what we shall see!
Katty
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Hi Xeloda tribe,
I haven't posted for a long time, but I'm struggling with a new SE on Xeloda: terrible mouth sores. I started at 5000 mg a day 18 months ago and had bad HFS. MO dropped me to 2300 mg daily about 9 months ago, which has been just fine....until 2-3 months ago the mouth sores started. It has turned into thrush. I've been using two formulations of Magic Mouthwash (first the 1:1:1 that has quite a bit of a lidocaine hit, then when the thrush started, the FM formulation). I just took two weeks off to help my mouth heal, and started X again 2 days ago and already have mouth sores again. Plus, coincidentally?, I started a sticky urethral discharge about the same time the mouth sores started. It dwindled during the 2 weeks off, and now it showed up again (always a little crusty circle on my panty liner - or panties). MO doesn't seem too concerned about the discharge, but I'm wondering if anyone else is experiencing such mouth sores and, perhaps, associated discharge. Don't want to quit Xeloda as I'm making my way down the list as meds fail me. Can't find much in the literature about this.
Peace.
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Pearltears, isn't thrush yeast? You could have a yeast infection in your urethral area. I have had 2 episodes with similar description and was given that oral yeast pill (two doses)..just can't remember the name of it..starts with a "D".
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I agree-maybe you should see a gynie to help that part.
Do you use Nystatin for your thrush?
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SandiBeach and Denny123, yes thrush is a yeast/fungal infection, but it's primarily in my mouth. The discharge is not the usual vaginal type (it's urethral). I'm using a Magic Mouthwash specifically for thrush:
diphenhydramine hydrochloride/dexamethasone/nystatin magic mouthwashAn oral suspension containing diphenydramine hydrochloride, dexamethasone and nystatin, with anithistaminic, antiinflammatory, and antifungal activities. Diphenhydramine hydrochloride/dexamethasone/nystatin magic mouthwash inhibits the cytokine-mediated inflammation and yeast colonization of the oral mucosa associated with chemotherapy and radiation therapy.
I just want the mouth sores to go away. I guess I'm an outlier on this SE.
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My urethral symptoms were not typical..yeast cells did not show up on microscope test. And no typical symptoms,ie,.itching, odor etc. But yet same symptoms as yours. Worth asking.
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Hey Sandi, did you have the bad mouth sores? If so, how did you resolve?
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I have occassionally mouthsores now. I use magic mouthwash prescribed by my MO. I have not gotten thrush..not yet anyway. With adriamycin/cytoxan, I got herpes mouth sores and was given Valtrex.
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I am hoping somebody can help with this question. I thought someone had posted that Xeloda should be taken 30 minutes after eating. My instructions say within 30 minutes, does it matter? I also could have imagined the whole thing
Thanks for any info!
Claire
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Katty - Thank you so much for the info. I'm confident that you're a great looking funky baby bird. I'm pretty sure Liz will probably shave her head before she loses her hair. That's what she did before. I'll likely join her.
I pray your December scans are good! Liz has her regular scans tomorrow so this will be a good baseline scan before she starts Taxol on Dec. 2. We've read about icing and she still has her ice socks from Xeloda. I pray this is the treatment that is effective and Liz tolerates the side effect.
Thank you again. If I have any more thoughts or comments I'll PM you. I still feel so connected to this Xeloda thread but don't want to discuss non Xeloda treatment out of respect for others.
Grant.
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Grant, please keep us posted!! Sending hugs.
Marley, there's a study that shows that's Xeloda actually works better if you take it 30 minutes after a meal. Others can chimed in with more details and perhaps provide a link to the article.
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Claire-yes to within 30 minutes. After I am done with my meal or snack, I set my timer to 27 minutes. The pills have the best efficacy with partially digested food.
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Grant-please feel free to stop back! I haven't take Kadcyla for 3 years, but I still pop back in on the thread once in awhile to give advice or tell about my experience.
How sweet of you to shave your head too!
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Thank you!
Claire
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Here to say goodbye, only four months on xeloda and although the radiologist said it it is working excellently on some lesions others are progressing [ l have never heard a radiologist use 'excellent' before]. Although i dropped dosage levels I was still gathering more SE's, sad it didn't last longer but...
I will be joining the taxol thread , after one zap of radiation for pain relief and a port being fitted.
I wish all the remaining xeloda takers a long, healthy run on this drug.
Enjoy black friday!
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The very best of luck to you, Denny! We're pulling for few SE and best possible results and efficacy! Please check in.
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Denny,
Like other have said, maybe Taxol will be the treatment that will be effective! I'll be praying that this is the one and you'll have minimum side effects. Liz starts her Taxol next week.
Grant
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Denny, sorry to see you go, but I am joining the others in wishing and praying your next treatment will do excellent with minimal SEs!
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Denny: Wishing you the best with your next treatment. Let us know how it's going.
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k-lo - I see you mention a document of advice? Can I get a copy before I begin
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Thank you for your kind wishes, I will be popping back occasionally to see how you are doing. I am so grateful to have found this site and all the wonderful supportive people who participate in the threads.
I hope you enjoyed Thanksgiving and enjoy the Christmas festivities.
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Denny10-good luck to you! Prayers that Taxol will work very well for you!
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Well, boo. It appears that my BC is now in my left ribs #6 & 7. Ironically, I keep breaking my right ribs. First time for a spread for me since it was in 2 of my chest nodes, but I have been NED for almost 3 years.
The nurse told me that they will further evaluate it with my next scan in April.
Dec 12 will be the start of my 19th year, and I don't need this.
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Well, shoot, Denny... for lack of a stronger word! Please keep us posted. Your body has certainly handled all of this exceptionally well, and I expect it will continue to do so. What rotten timing, at the holidays. Good luck-
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That really sucks Denny, I’m sorry to hear that. You are my inspiration........if I can go another 18 yrs I could die a happy old women
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Denny123..maybe radiation to those sites? What do you think will be next plan? You are our biggest support here..now it is our turn to support you.
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Thanks ladies! The head nurse told me that they usually don't do anything at this point. I just called my endocrinologist again to see about the follow-up to my scans, and got the ball rolling better there.
I have been on Prolia for about 4 years and he had suggested (depending on my scan results), that I need to add an additional med to the Prolia...either a nasal spray (preferred), or daily injections (ugh).
That Dr. has been waiting on notes from my onc. So I left a message for my onc.
I don't know about radiation at this point, since I don't have pain there. I do have occasional pain on my right side where I keep breaking my ribs.
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