xeloda
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Category: TNBC Forums
Forum Name: Let's Talk About Chemotherapy
Forum Description: A place to discuss Chemotherapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=12957
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Topic: xeloda
Posted By: hopefulr
Subject: xeloda
Date Posted: Sep 20 2016 at 8:19pm
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Hi all- Anyone who has been on xeloda, I am looking for information about your experiences with side effects, hair loss, tummy problems and if it helped you with remaining stable or shrink cancer. Thank you for sharing your experiences!
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Replies:
Posted By: Jacklin
Date Posted: Sep 23 2016 at 12:09pm
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Hi hopefulr,
Hopefully I'm not going to be a spoiler on this one. I have just come home after being hospitalized for a month from a reaction to xeloda on my first cycle of treatment. I became neutropenic and I also ended up with a severe case of colitis, as well as significant hand-foot-syndrome as I had with taxol. For me, my trial with xeloda is over. I've lost over 30 lbs in this time and have been incredibly ill. I'm still using morphine to control the tummy pain. Since I didn't even complete the first cycle, I've had no hair issues.
Sorry to be the bearer of bad news.
------------- Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Posted By: Tulips
Date Posted: Sep 23 2016 at 5:06pm
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OMG Jacklin!!! I can't believe what you've been through!!! That's horrible and a real eye-opener. I was originally very annoyed at my MO's reluctance to prescribe Xeloda to me because I really doubted I could have a strong adverse reaction. This makes it very real, when it happens to someone you care about (although never met!). I am so sad to hear you are still in pain, and pray for a speedy recovery.
Hopefulr, well, now you know it is not without risks. I will present an alternate story, so you know there are mixed results. I finished 8 rounds of Xeloda at the end of August (I had some residual cancer left after my initial chemotherapy). I was not happy with what I read about the risks of recurrence for my particular situation (everything is very individual!), and I wanted more treatment. I read about the CREATE-X trial, and saw that there was a 42% reduction in risk of recurrence for TNBC-residual patients overall, and was eager to give it a try (figuring if it was bad, I could always stop). I guess overall I can say that I sailed through. I had very manageable mild hand-foot issues during rounds 3& 4, my hair did not fall out and grew during that time, zero tummy issues or nausea. I think I had a tiny bit of fatigue and liked going to bed early, but that may just be normal for me now ;-). Loved that it's a pill and didn't need to go to infusion center--I didn't really feel like I was on chemo at all. Night & day from my ACT chemo. Of course, I have NO way to know if it helped me one iota. It may have been a complete waste. (plus I had 8 $100 co-pays and bought a fortune's worth of hand creams, slippers, etc). But for now, I can say that it has helped me mentally….I get to feel like I gave it one more fight. I obviously pray that either there was no cancer circulating in my body, or that the Xeloda took care of any remaining, but I won't know until I either recur or die of something else. It didn't erase 100% of my concern (I just had an MRI and eagerly await results, not totally stress-free), but it has helped. However, if I had a bad reaction (even MUCH milder than what poor Jacklin went through), I would have had no qualms about quitting. I just considered it a bonus option to try. I think I was a little naive or blasé about possible side effects, so of course you should really discuss those with your doctor. For many people, Xeloda is "chemo-light", but obviously not for all! All of these things are toxic, and we should keep that in mind.
Hopefulr, I can't tell from your signature if you are stage 4 or have residual cancer after neoadjuvant chemo. I believe those are the two situations where Xeloda is prescribed. I'm sure the decision process is different for the stage 4 women, and my thoughts may not be relevant there. Good luck with your decision. And Jacklin, happy healing!!
------------- Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Posted By: Jacklin
Date Posted: Sep 23 2016 at 10:38pm
Thanks Tulips, I'm so glad you're finished and on the way back to your new normal life again. For me, it'll be a few weeks before I feel more like myself again, but I'm glad this chapter is behind me. And, never again will I take xeloda or 5-fluorouracil compounds!
------------- Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Posted By: Renate
Date Posted: Sep 28 2016 at 8:01pm
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Jacklin I am so terribly sorry about all you had to go through. I had a lot of issues myself and was in the hospital for over two weeks after my last A/C. I started Taxol on Monday and today I am feeling some bone pains but it is not too bad. I am being treated at the University of Texas Cancer Treatment and Research Center and so far I am pretty happy wit them. The gave me gel booties and gloves to wear prior to starting Taxol and switched them out half way through to keep my feet and hands cold. I was very happy about that because when I was being treated in Washington they told me I had to buy my own. I am two months late starting Taxol and hope this will not cause any issues. I was told to take L-Glutamine 3 x a day 10 g each time but not to take any other supplements. Does anybody have any experience with the L-Glutamine? I am seeing an acupuncturist tomorrow and hoping to have acupuncture once a week right after the Taxol treatment...any thoughts about that??? I am wondering what I should expect during the 12 weeks of Taxol I am so worried I will get sick again and really hoping for the best.
Thank you for any information you can send my way.
Renate
------------- Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;
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Posted By: AmyL
Date Posted: Sep 28 2016 at 9:54pm
Hi Renate,
I'm so glad to hear from you and that you are doing well. I hope Texas is a good place for you! Taxol was much easier than AC. I had trouble with my white count and had to delay some treatments but finished mid August and now am almost done with radiation. This whole TNBC thing is a mountain that we are all climbing together.
Hang in there and keep in touch!
Amy
------------- Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Posted By: Jacklin
Date Posted: Sep 29 2016 at 7:24pm
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Thanks Renate for your wishes. For me, taxol was harder than A/C, of course. Seems everything that's supposed to be easy is difficult for me. Like you, my cancer centre provided cold packs for my hands and feet, I did still peel but I hope it helped somewhat. Glad to hear you are at a cancer centre that you're happy with. Amy said it well, it's a mountain that we're all climbing and we take things one step at a time. We're all here to support each other. Sorry to read all you've been through, no fun at all. I don't have any experience with L-glutamine.
All I can suggest is do your best to keep yourself as healthy as possible (avoid crowds - we've got a flu outbreak in our area right now) and listen to your body, it will tell you what it needs.
Stay well, ok?
------------- Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Posted By: Renate
Date Posted: Sep 29 2016 at 8:34pm
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Hi Amy and Jacklin...so happy to hear from you both and hope you are doing well. Jacklin I am sorry you had problems with Taxol and I guess all we can do is hope for the best. I have not had any issues after my first Taxol treatment but there are sooooo many more to come so who knows how that will go. I went to Acupuncture today to help prevent the neuropathy. All the stuff I am doing is just prevention and there is no guarantee anything will help but at least I feel like I am doing something. I am walking, swimming and exercising every day and so far I have not been tired.
Amy..how are you tolerating the radiation? My oncologist at MD Anderson wants me to finish the Taxol chemo in San Antonio but after that I am going back to MD Anderson for 6 weeks of radiation.
I wish you all the best and hang in there!!!!
Renate
------------- Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;
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Posted By: AmyL
Date Posted: Sep 29 2016 at 11:00pm
Renate, you sound like you're in such a great place mentally and that's SO nice to hear. I'm really glad you made the decision to resume chemo. I know that each person needs to do what's right for them, but I think we need to do whatever we can to NOT let TNBC win!
Many hugs, Amy
------------- Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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