Xeloda and TNBC
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Jennifer ~ I agree if you’re handling the Xeloda well I would definately go for the 8. I had a lumpectomy so I will be starting radiation when I’m done with Xeloda. I meet with my radiation oncologist on Aug 9th so we can get a plan together. I eat a lot of veggies and fruits. I feel so much better eating that way. I do eat some meat but no where near as much as I did before. Since having chemo I don’t like a lot of the things that I did before and some things just don’t agree with my stomach anymore.
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Starting cycle 5 tomorrow. Cycle 4 has been the hardest so far and I assume it's the cumulative effect.
Usually I would have feet tender issues halfway through week 2 and first few days of my off week. But this time it's lasted through my entire off week. Feet hurting more, body aches pretty much from my waist down to my knees. And the fatigue. I get frustrated with how tired I am just trying to do my daily activites.
I try to be positive and especially tell newbies to Xeloda, it's not too bad and be encouraging. But this last week just sucked when you count on feeling good on the off week, and you don't get it.
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Jennifer - I am sorry this last round has been so tough for you. We need that week of feeling better to make it easier to get on with it.
I start round 4 today and in my last round I felt better week 1 than week 3. Hand and foot peeling was more significant in round 3. We'll see how this round goes.
I have noticed I am significantly more fatigued than during chemo and radiation, but still keeping my eye on the prize. Maybe I'll try more coffee this round!
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Hello Ladies,
I've been reading along to this subject via my email, but didn't have anything new to add, but now I do.
My oncology pharmacist who treated me during Xeloda might have been the one who agreed with me that Xeloda might have affected my feet for up to 4 months. As I remember it, I suggested it and he agreed. I think he may not have known the long term effects. And I have read that others have had SE from Xeloda for up to 8 months.
But today, I got some new information from my new oncologist. Xeloda only affects your feet and hands as long as it is red and peeling. I have been claiming that Xeloda has affected me 5 months after finishing treatment (Feb 2018). Well according to my new oncologist (whom I believe), my feet are sensitive due to side effects of Taxol. She said it could go away in months, years, never. Go away and then come back years later. As far as what to put on it, she said lotion (she said udderly smoothe), but I know the product has parabens in it, so I recommend Cetaphil, which has no parabens. Parabens have been shown to cause cancer.
I had been using Urea40% until this morning, but now I think I will switch to lotion. The Urea softens your feet and makes them feel better when they are red and peeling, but I don't see much use for this long term effect from Taxol. It is not like neuropathy, it is just sensitive feet. I don't walk long distances and have chosen to swim rather than walk for exercise. I think I would get more exercise if I didn't have to drive to the pool.
I'm going to go post other places where I have given incorrect information. I finished Taxol March 2017. So I am 1 year and 4 months after finishing that chemo. (surgery, radiation and then Xeloda came after Taxol) . I can say right after I finished Taxol, I had no problem with this sensitivity, because between chemo and surgery, I went hiking in SW Utah during spring break. We did a lot of hiking.
So now I'm going to read up on effects of Taxol.
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I thought I would update about my terrible round 4. Round 5 wasn't as bad. Now I am on round 6/day 5.
But the foot tenderness doesn't go away now. It lightens up and gets worse over the 3 weeks. But it never goes away 100%.
I suppose this will just be the way it is until I finish. I could complain and my MO is willing to take me off after this round but really want to complete the 8. Since its my last available treatment. I haven't found any trials I qualify for.
Using my UREA 40% cream, wearing socks at home and my sketchers go walks memory foam shoes when I go out.
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Has anyone gotten elevated liver enzymes on this treatment? If so, what did your oncologist tell you or do? My ALT WAS 39 on my last metabolic panel. I am round 5
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Hi Judi-
My bilirubin went up while I was on Xeloda (just slightly above normal). It totally freaked me out because my normal is on the low side, but my doctor was not concerned at all and said it was due to the Xeloda. She was right, it went right back down after I finished. I know this isn't specifically what you were asking about, but I do think shows it does affect areas of our body other than just blood cells. Mine also started to happen around round 5.
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It's very common to have elevated liver enzymes while on Xeloda. Mine went up during my first 4 rounds and then went back into the normal range while I took a break for radiation. I just finished round 5 and my AST is slightly above the normal range. My doctor isn't worried at all about slightly elevated numbers - they are very common on chemo.
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Thanks - I was a little worried. I went through 6 rounds of TC and aside from low white counts, everything was always in the normal range. Xeloda seems to be affecting me more than the original chemo. I'm a lot more tired and my eyes are watering a lot. It's strange.
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Hi, ladies! I'm supposed to start Xeloda in a couple days. I've gotten some advice about taking care of my hands & feet. I have been working out quite a bit thru an After Breast Cancer program. We do workouts with cardio & strength training plus Pilates. My MO suggested using a stationary bike for cardio instead of the cardio class I've been taking and thinks I can keep Pilates & strength training. Have any of you kept up exercising? I felt so lethargic during and after chemo and my exercise program has pulled me together mentally & physically.
Also, anybody else getting ready to start up??
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So far, I’ve had the least issues with the elliptical and the rowing machine. Bicycle hurt my feet, but that may vary from person to person. If you have access to a pool, that may be a good idea as well
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Hey Flynn,
I exercised through the majority of my treatment and I too used the elliptical. I work from home so I'm not on my feet a lot, so although I had a little soreness and redness, I didn't have much. I think you can start with what your doctor recommends and see how you do- if after a few weeks you are ok you can add other stuff back in. I didn't feel like the pain in my feet came on quickly- I could definitely tell when they were getting more sensitive and just tried to be a little more careful.
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nessvess, thanks for your comments! I guess it’ll be trial and error. Water aerobics is a great idea and I know we have a co I classes.
Sam, thanks for your thoughts, too. I’m glad to know that you could stay active and just modify as necessary. I think keeping up my activity will definitely help me!
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my first 14 day cycle ends today and so far so good. 🤞Here’s hoping side effects continue to be mild.
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Hello, so I just started my second week of Xeloda 4000mg a day, two weeks on one week off. So far so good except I cannot SLEEP
My journey thus far diagnosed 1/31/18 with invasive ductal carcinoma TNBC and BCRA1 positive. Family history my Mom diagnosed at 39 passed away at 41. Neoadjuctive chemo 12 weeks of Paclitaxel and 4 week AC. Bilateral mastectomy and 11 nodes removed one positive. After tissue expanders are full 5 weeks of rads 5days a week. There is so much more to this story, but no energy to tell all right now.
Considering doing rads and Xeloda together my rad onc does not have a problem with this. Has anyone else tried this?
Sorry this is so generic my sleepless brain cannot process properly right now.
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Xeloda and rads. It's known that X worsens side effects, sometimes drastically. As to benefits, when I researched this last winter, the growing conclusion seemed to be there either aren't any or enough to justify the SE. Many places won't do rads with X. I'm short on time or I'd try to find the links that I looked at.
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I finished my 8 rounds of Xeloda on Sunday. I did 2000 mg twice a day the entire time. I never had a dose reduction although I probably should have due to my feet issues. But I was hard headed and wanted to hit it hard. I could have even stopped after 6 rounds, but I said I wanted to do the 8. The NP was going to delay my last round by a week but I just wanted to get it done! The last 3 rounds my feet have pretty much hurt the entire time. Off week was worse than the on weeks.
Cocooncat, I get the disappointment. My MRI before my last DD Taxol said my tumor was almost imperceptible and met minimum threshold. I thought for sure I would get a PCR and I think MO did too.
I highly recommend Udderly Smooth Body Cream (Jar) for lotion that my MO recommended. I first used the Urea 40% (bought on Amazon) and I feel all it did for me is leave flakes all over my couch. The NP recommended Eucerin but I found that too messy (like coconut oil).
And make sure you have a good meal with the pills. I made the mistake a few times where I wasn't hungry, so I just had toast for dinner. A few hours later, stomach cramps and the big D.
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Congrats Jennifer! Sounds like you did a great job persevering to get get thru 8 cycles. Best wishes for whatever comes next.
Welcome Cocoon. I’m sorry about not getting pcr. Sounds like quite a shock since you’re mri looked good. Mine showed a very small amount left and the path confirmed it. I guess if nothing else, I knew what to expect. Good luck wrapping up rads and getting started. I’m on my 2nd cycle. Physical symptoms very manageable so far, blood counts in the tank. They’ve been my Achilles heel this whole time. Keep us posted, I’ll keep an eye out for you.
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Hi,
Thanks for having this group. I just took my first dose of Xeloda. I'll be 2 weeks on and 1 week off. I can't remember how many cycles.
Any advice for me? It sounds like I should ask if my doctor can measure my vitamin D, get some epsom salts and some Euricin, drink lots of water, and bring my anti-nausea meds that I still have from the IV chemo with me to work just in case. I work an hour from my home and I stay there 2 nights a week to combat the exhaustion, so I'll need to know what to bring there to be comfortable.
I'm concerned about the foot pain that may come in the future. I already have heel pain due to neuromas and long standing, chronic Achilles tendinitis. It's so bad that I limit my walking and standing. How would I tell if the pain is from Xeloda? Does it always come with the redness?
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Hello ladies, joining in from the Netherlands. Even though it is not nice to be on Xeloda, I am glad that option is there. I manage quite well with the feet and hands, just use a lot of lotions. I have one question. I have been short of breath since my not very successful neo-adjuvant therapy and it is getting worse. Is this relatable? I keep worrying it is a symptom of something less benign. I have an appointment with a cardiologist in December. Right now I am in cycle 6 and hope to be able to complete 8 rounds, but my overall condition is deteriorating rapidly.
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I had shortness of breath on chemo, as well as a hacking cough. My oncologist said it was a symptom of my chemo. That being said, I would still call your Dr since it's continuing to get worse.
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Hello Judy, I just got approved for my 3rd cycle of Xeloda. At first I was on 3500 mg/day. My feet were a little dicey but mainly my blood counts dropped. My dose was lowered to 3000mg and I go 10 days on my recovery time, instead of a week. My counts were much better today and feet are doing fine. I don’t have advice other than stay tuned into your body. I’m not doing a lot of special stuff and am exercising as much as time permits. Good luck!
DutchLinda, I had shortness of breath during Taxol and after my 1st cycle of Xeloda, due to anemia. I second checking in with your medical team. Kup!
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Hello all!
I, too, have been recommended to start Xeloda. I was devastated to not get a PCR, so bad I couldn't work the next day. But I got past that only to go to my follow up visit after surgery to be told that I should go through 8 cycles of Xeloda. I'm really not looking forward to this.
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Welcome, Sassy. I’m sorry about no pcr. I had the same. I have found Xeloda pretty manageable. Good luck!
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Hi. I'm new to this group. Thank you for having it available! It seems so difficult to find others who have TNBC.
I feel like I've done all the standard care, and I am still on xeloda. Just wondering what others experience with it has been. In terms of what kind of tests etc they can do to see if it's working. I was basically chemo resistant to the AC+T, and carbplatin. Surgery showed 95% still active, and 2 nodes affected. Sucks because they only took out 3 total, so I feel uncertain of what may have been left behind; and I'm hoping the xeloda takes care of any residual
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So, as of cycle 5, I’m still finding the side effects tolerable. I did, however, experience the risks of walking around with a compromised immune system. A little over a week before Christmas both kids got sick then I quickly got sick as well. We had travel planned for the holidays (and last year was not so great) so I pushed thru. Two urgent care visits thanks to a relentless fever, double conjunctivitis and a bunch of other issues resulted. I’m finally home and feel like I’m getting better! Not before infecting my poor husband, of course...he’s asleep with a fever as I write.
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Done!! Even though it wasn’t terrible, I was so happy to sleep in this am without my alarm waking me up to take my meds!
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Whooooo!
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thanks Santabarbarian!
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