Xeloda for Triple Negative Breast cancer
hi everyone i was diagnosed with Triple Negative BC last year in july at the age of 33. I had adjounal chemotherapy followed by a bileteral mastectomy and 25 rounds of radiation. My body is battered and my immune system is in much need of a rebuild. Having spoken to my oncologist who advised me that i had a 95% clearance from chemo he wpuld like me to go on Xeloda for 6 months to prevent a reoccurance. I am very reluctant as the side affects seem brutal and i would like to get on with improving my physical state and immune system. Just wondering if anyone has taken this drug for Triple Negative Cancer which has not metastasized. I had one out of 6 lymph nodes positive for cancer
Comments
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Hi Danja! Welcome to the Community. While we hate that you're here, we're really glad you found us! We're sure our ever-helpful members will jump in shortly with their experiences and advice.
If you need help around the boards at all feel free to send us a private message. We're here for you!
Best wishes,
The Mods
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HI Dana,
I am also triple neg, I am still in chemo now ( 1 more left) then I will have a BMX and radiation...when I met with my MO on friday he said IF there is any residual cancer found in my pathology after surgery he will put me on Xeloda for a few months (I'm not exactly how long) He said there are recent studies showing a high increase in survival rate for triple neg with residual cancer when going on Xeloda.
Since I haven't done it I 'm not sure of the side effects, but when I asked him about them he said they are mild! I am currently on taxotere and he said it is way easier then that...he said mostly "hand/foot" issues...sore skin, redness etc....who knows
I also have a friend who is going through bc now also...she is also TN, she just had surgery 2 weeks ago and her pathology came back with 7 out of the 27 nodes removed still testing positive for cancer...her MO is recommending she do radiation and go on Xeloda for 6 months (she is going through Sloan Kettering)
Not sure I helped you at all...but I'm curious to see what other advice you get.
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Hi! I am very curious too as I just rec'd my pathology report from surgeon yesterday after having a radical mod. mastectomy Feb. 22 and being on chemo (AC and Taxol) since late Aug. til Feb. 2 and although really nothing has changed from yesterday...it has.
The initial biopsy back in late Aug. (2016), indicated the cancer was HER2+ and slightly Estrogen + and clinically I was diagnosed w/Inflammatory Breast Cancer. Now, the breast cancer is being identified as triple negative, and 42 of 42 lymph nodes were found to have cancer. I am in shock and so very scared. My CT and bone scans from September were clear except for my right breast and some lymph nodes and I was considered in stage 3. The plan is to do radiation and start Xeloda ....Taxol wrecked my nails and I have some mild neuropathy in my toes and finger tips so hand/foot syndrome scares me a bit. It's great not to feel so alone with this news
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Hi, I was first diagnosed in 2011. It was Her 2 neu + and 2% estrogen. For the 18 months that I breastfed my son, I tought something seemed different with my left breast. I was 37 years old, and the doctors told me that I tested positive for BRCA1. The tumor was stage 3. I had chemotherapy and bilateral mastectomy. I also had to have a complete hysterectomy and took Letrozole for 4 years. Then, in December 2015, I felt a small and painful lump on the chest muscle. It was a recurrence, but this time it was triple negative . I had chemo, surgery and radiation. I wasn't accepted for the PARP inhibitor clinical trial , so my doctor wanted me to try Xeloda . I took it for 2 weeks, 8 pills per day. Unfortunately, the side effects were too much for me. I had hand and foot syndrome and couldn't walk or use my hands. My face turned black from toxicity . I really hoped it had worked . Most of people handle Xeloda very well and the symptoms can be managed. My advice is that you should give it a try.
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Hello everyone, I'm just going to add my part about xeloda (capecitabine). I did try it, for 1 cycle, and I was hospitalized for a month. I know I'm in the minority, but I do feel responsible to make others aware of the potential side effects, including an allergic reaction. It turns out that I am DPD-deficient which means that my body does not have the enzyme required to metabolize xeloda. At first I had HFS and started with mouth sores behind my lips. The mouth sores moved into the back of my mouth and down my esophagus which was painful. I thought that because the pain went away, so did the sores, not realizing that they progressed through my digestive tract, causing colitis. This was 6 months ago and I still have the lingering effects from the colitis. It is only by the grace of God that I am still alive today.
Despite the reaction I had, I would still say that I'm glad I tried it. At least now, should there ever be a recurrence, I won't wonder what the outcome may have been if I had tried it. Each person needs to make the decision that's right for them, just be sure you have all the information you need to make an informed decision.
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I am just finishing month 4 of 6 months of xeloda, one week on and one week off. While I have experienced side effects, they are bearable. The worst for me have been stomach issues and tiredness. The hfs has been manageable, just remember to moisturize. As much as more chemo seemed overwhelming, in retrospect I'm grateful that it was offered to me and that I chose to take it
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I'm taking Xeloda. I had wanted to be done with treatment but I'm labeled 'high-risk' for recurrence. (Post-surgery was followed by anothwr 4 rounds of chemo. A chemo that works really well with BRCA/TN patients and a chemo I didn't get with my former oncologist. By the way, I dropped my first onc due to many issues and transferred my care to Mayo.)
Anyway, after more chemo and 15 days of RADS, my onc discussed capecitabine again and even though I had celebrated end of Treatment 3 weeks before I knew what my answer would be.
I started Xeloda the day after Christmas. The schedule had been 4,000 mg daily for two week and one week off. The side effect was mild fatigue the first round. The second round was hand-foot problems. I had three blisters in my toes and the bottom of my feet felt like a bad sunburn. With a prescrtion ointment and a change of schedule (one week on one week off) the issue went away.)
Other side effects have been dry mouth and a metallic taste in my mouth, irritated eyes with slight blurring of vision -- this also happened with AC & T and went away post-chemo.
Of all the chemistry this has been the mildest. There are options if you have side effects like, schedule change and reduced dosage. My doc want me to do 8 rounds. With the new schedule I won't be done until August instead of June but that's fine. My risk of recurrence will be greatly reduced and I will breath easier while enjoying life with my young children and good hubby.
Go for it!
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Hello! I am taking Xeloda. I start cycle 4 of 8 tomorrow. I've been taking 3000mg a day, moving to 4000 mg for this upcoming round. So far side effects have been pretty minimal. A little stomach issues, a little metal mouth, a little hand/foot. But really manageable for me so far. I had residual cancer after my lumpectomy and AC, but it went away during Taxol and radiation. I hope this does the trick!
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Hi. I am almost done with round 8 of Xeloda (14 days on / 7 days off) Was diagnosed in march 2016 with 3.5mm triple neg. Had 8 rounds of T.A.C - double mastectomy ( didn't achieve a Pcr.) 25 rounds intense dose radiation. Due to not achieving Pcr Oncologist recommended 8 rounds of Xeloda . I have NED. Xeloda purely for "insurance". 1st 3 months went well, side effects were manageable. By end of round 5 though, hand foot syndrome was bad enough Onc insisted on reducing dose. Am in considerable discomfort from HF however I believe it's worth it for the extra insuarance.
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Dear TamraM-aus,
Welcome to BCO. We are sorry to hear about your side effects with Xeloda and at the same time we are glad that you reached out to share your experience. We hope that you will find support and information here in community with our members. Please let us know if there is anything we can do to help you to navigate your way around the boards. We look forward to seeing you here. The Mods
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Now it's my turn to join this chat. My doctor informed me yesterday that I will be starting Xeloda the week of June 19th. I am in a clinical trial and got randomized to the control group. I figure I am no worse off than if I hadn't gotten into the clinical trial because my doctor's second plan was Xeloda anyway. I was diagnosed with TN the end of last September. I have had 2 rounds of neoadjuvant chemo and a double mastectomy. After I finished chemo I had a breast MRI that showed cancer was still in my tissues. 10 days later I found a 2 cm tumor. My cancer is extremely aggressive - I have a 100% replicity rate. So, here I am. I had no lymph node involvement so this chemo is just insurance against the cancer finding another home in my body.
I keep saying Xeloda can't be as bad as what I have had before. I was nauseous and exhausted for 5 months with the last chemo. I ran fevers the first 2 months on round 1 and then struggled through round 2 until they finally called it - I was neutropenic, malnourished, platelets were too low. I'm sure you all know what I am talking about.
So, here's to round #3! I hope this chat room takes off. I enjoyed the education and support I received from the April 2017 Surgery group and I am still in the Calling all TN's group.
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Hi, Warrior2016! I just started X a few weeks ago. There are a couple other threads - Xeloda and TNBC and Anyone Stage 3 Taking Xeloda. If you haven't started yet, consider going to a spa to get the calluses on your feet removed. It'll help with the possible HFS and peeling. I wish I had done it as I'm just starting to see tiny bit of peeling on the calloused part of my feet and fingers despite using thick lotion with socks at night. Start with the lotions now. Lotions I found recommended by others on this site from Amazon were Theraplex (thick and a bit more waxy) and Utterly Smooth with 20% urea (more like a regular runny lotion). I sometimes shake it up and use Bag Balm (thick emollient type) - found that at Walgreens. Also find some cheap cotton socks to wear over lotions to hold in moisture and a box of white cotton gloves (again on Amazon). Oh, and to help with nausea I take a Prilosec on my pill days. Have some stool softener, Imodium, and Zofran handy too. Feel free to private message me if you have any questions!
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Thanks for the tips, SuprSurvivr! I do need to buy some more lotions - I have gloves and socks as I have dry skin to begin with. (In the summer my heels crack and in the winter my fingers split.) I also just got a pedicure last week but it was rather superficial. I have neuropathy and I just couldn't stand the feeling. I lived on Zofran and a stool softener for the first 2 rounds of chemo - never needed Imodium so maybe I should get some to have on hand. I do see my doctor and then my nurse navigator on Monday who will walk me through the do's, don'ts and how to's.
I'm only a stage IIB but I'm a grade 3 - I'll look up the Xeloda and TNBC chat room.
Have a nice weekend! I'm off to a wedding and I'm going to drink some wine!
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Yeah, Xeloda is known for causing the Big D as the X ladies say. When I've gotten loose, so to speak, I start with just half an immodium pill. You can always take more! Also, I've read that we should be staying away from milk and milk dairy products while taking. So eat your cheeses stuff now! 😋
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SuprSurvivr - I just got back from the wedding - did lots of cheese and wine! Guess I'm on the right track!
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You go, girl!
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I was diagnosed in May, started AC, then did Taxol and I just had my surgery on November 13 (lumpectomy with a breast reduction). I still had a 5mm tumor left from what was originally a 2.7cm tumor. I will be starting radiation in January and I will start Xeloda 4-6 weeks after radiation. My oncologist said that it will not cause hair loss or neuropathy. I've looked up the side effects and it appears that he's wrong. Any input? I have pretty bad neuropathy in my fingers and toes and my hair is starting to grow back. Losing the hair on my head wasn't as traumatic as losing my eyelashes and eyebrows and I just waned to know if anyone has information. I'm grateful to have this opportunity for prevention of recurrence but my poor body has been through so much. Sigh.
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Hi Julieu61-
We want to welcome you to our community! We know how much you've been through. Have you tried reading through or posting on our Hair thread? There might be some member's there who can offer insight into what you can expect: https://community.breastcancer.org/forum/69/topics...
We wish you best as you begin your radiation therapy!
The Mods
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It’s been a few months since I’ve posted about Xeloda. Here’s my experience:
I completed 8 rounds of Xeloda starting December 26, 2016 and my last day of pills was July 25th, 2017. The first round was 2 weeks of pills (4,000 mg a day) with 1 week off. After the 2nd round my feet hurt! It felt like the soles of my feet had a bad sunburn. Doc switched my schedule to 1 week on and 1 week off after a two and half week recovery period.The new schedule helped! My feet still became sore and peeled but I could get around. Doc also prescribed hydrocortisone cream (2.5%, I believe), which eased a lot of the burning and/or tenderness. Ice felt good too! A pedicure was definitely not going to happen anytime during this treatment.
There were no problems at all with diarrhea, which I heard was the most common side effect other patients at my treatment center shared with the cancer team. My hair did NOT fall out. Full head of baby soft pixie-cut hair.
There was slight fatigue. Taking naps helped. No additional problems with chemo brain; no foggy brain at all. Just the lingering effects from AC & T.It’s nearly 5 months after treatment. My feet are healed. The tenderness was completely gone about 6-8 weeks later. My hair is now bob-length. I still get tired but the docs said this side effect from chemo and radiation will last for a couple of years. Chemo brain’s lasting effects vary. I expect I’ll be dealing with CB to some degree for years to come.
I’m glad I took Xeloda. No regrets. Hope this helps. Good luck in your journey!
Ann
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Hi Julieu61.
I'm on Xeloda (X) right now. I've got one more week left in my 4th month. There are a lot of resources if you go back in this thread, as well as other threads about X.
What I can tell you:
1) Hair loss is rare with X and usually is thinning hair, not complete loss. I had almost no hair when I started X and now have a thick mass of short, super curly hair that's growing so fast it's surreal.
2) Hand & Foot Syndrome (HFS) is one of the most common SE of X. This really is a topic on its own. Complications from it can cause X doses to be lowered or stopped completely. Most women on X have HFS to some degree. You'll want good lotions, like Udderly Smooth (regular, 20% urea or with shea butter) or Working Hands. Different people like different ones. Amazon's a good source. Use them at least twice daily. I moisturize my feet 2-3x day and my hands too often to count. My feet get sore and I've had some blisters and peeling. I always wear socks or slipper socks with good slippers with a hard sole or comfortable, sturdy shoes. I like the Dearfoam brand of slippers. My hands get irritated and burn at times. BUT this is not neuropathy. I've read that symptoms usually are gone within 8-10 weeks of stopping.
Other names for HFS: hand-foot skin reaction, palmar-plantar erythrodysesthesia
3) The Big D. Someone recommended I keep an emergency kit in my car because when it hits, it can take a long time to bring under control. And if it hits when you're not home, it's 100 times worse. Kit: Depends, baby wipes, fresh undies, pants. Buying a product like Depends in advance saves a lot of things, including not having to ask someone else buy them for you. For the record, in nearly 4 months, I've had 2 Big D days. And yes, I wore my adult diapers.
4) Nausea: 3-4 days a week, I take an anti-nausea med.
5) My chemo brain has gotten so much worse that when I'm asked what my worst SE from X is, I answer "chemo brain." Mine is ranked as "major chemo brain," and I hope to get into a study on my chemical addled mind after I finish X.
There are other X threads I'd encourage you to read. I'm adding a website about X. I found it helpful. The print is small, so it may be hard to read on a phone:
https://www.medicines.org.uk/emc/product/1319
This link is more reader-friendly, but less specific. It's a good starting point. IMHO
https://www.drugs.com/xeloda.html
Hang in there! It can be a bumpy road, but you've got fellow road warriors to help you.
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Hi FelineMum and AnnaMO - thank you both for your input. I got 4 days of HF on my feet during AC. It felt like someone was holding a blowtorch to my feet, so I'll be getting some pedicures going prior to starting Xeloda. My oncologist wants me to do 6 months of Xeloda but said if it was going to be 6 months of awful and I hated it, we could discontinue. I told him I just got done with nearly 6 months of awful and that in the grand scheme of things, this is a necessary evil. One article I read said that Xeloda reduces the risk of recurrence by a third and that's profound.
I've been struggling with depression the last month and I think it's because my brain is just now catching up with my life. I've been at a dead run since I found the lump in April. I didn't have time to think about too much as I had to travel 3 and a half hours each way to treatment and surgery. I want my life to go back to normal but I have no idea what that is anymore and I don't know what my normal will be as I still have radiation and then 6 months of Xeloda to do. I know that I am lucky. While my tumor was 2.7cm, I was stage IIA with no BRCA or other genetic anomalies. But I lost my relationship of 4 years the day after my first oncology consult and then my best friend deserted me as well during all of this. Both are horrible narcissists, so not really a loss but the betrayal of both within 2 months of each other was devastating and during the worst time of my life. But others stepped up and proved to me what real friendship and caring is and with their help I managed to get to and from treatment. I'm hoping that 2018 will be a much better year.
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Hi Julieu61,
I've been struggling with depression too. I know exactly what you mean when you say, "my brain is just now catching up with my life." I was diagnosed in late February and for months, nothing slowed down. Having a free weekday was rare. And when it finally did slow down, I had time to think and start asking questions. And the tears started flowing. And I couldn't ignore the fact that there were people who were AWOL. For me, it was mostly family. Seeing cousins and their spouses act like cancer is somehow contagious and that even looking me in the eyes could infect them really hurt. Watching my parents continue to favor my sister as she destroys her health and liver with alcohol while I fight a disease I did nothing to get ... kills me inside sometimes.
But like you, some people have stepped up, including complete strangers I now call friends. A good friend from college who I haven't seen in years is online when I need to chat. He lost his father to pancreatic cancer ten years ago and he knows more about CancerLand than most people I know. When I need to know someone's there if I need to talk whether or not I actually do talk, he somehow knows that. I also have a therapist. A professional can be priceless.
I'm sorry about your relationships. Even when we know we're better off without someone in our lives, it doesn't make rejection or betrayal any less horrible.
Here's to 2018. It better be a better year. Or else!
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I'm glad to know that it isn't just me. LOL. We have literally been through a war and unless you've fought this battle, you have no idea. My body is scarred and I chose to have a breast reduction during the lumpectomy, so my breasts look a lot different now, too. So many changes. All in a short period of time. Sometimes it's really overwhelming. And I get angry. I will have to look over my shoulder for the rest of my life. Not just in fear of the cancer recurring but in fear that I may get leukemia from the chemotherapy. And then I see my grandsons and I remember why I fight.
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I just started Xeloda this weekend. So far it has been pretty uneventful, but I am feeling a little tired. Who knows if it's the Xeloda or just the lack of sleep I'm getting due to all the things I am doing to get ready for the holidays! I am planning on starting a trial at MSK and the oncologist wanted me to go on Xeloda first- she thought the research was strong and that this should be standard of care for those of us without a PCR.
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Hi, Sam - How long are you scheduled to be taking Xeloda before your enter the trial?
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Hi Agatha,
I don't know exactly, but she said 6 months so I'm assuming 8 cycles (they are 3 weeks each). That seems to be what most the other ladies here received too. After that they require a 4 week break and she wants me to start the trial asap after that 4 weeks. Should be around the first week of July.
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Hello Julieu61,
I finished 4 DD AC and 4 DD Taxol treatments in November followed by a bilateral mastectomy. I had clear nodes according to pathology, but residual tumor left in my breast. I am curious, is there a reason you have to wait 4-6 weeks after radiation before starting Xeloda? Is it for your body to heal? I will also be starting radiation in January and this week at my last MO appointment he said I'll possibly be doing another chemo and all I heard after that was the word Xeloda. So, not sure if he meant another chemo in addition to Xeloda, or just Xeloda. I won't know for sure until he consults with another MO and I'll find out at my next appointment. I'm only asking because I am anxious to get through whatever treatment is in store for me next and get on with life. Also, my hair is really growing back now since my last treatment on November 7th, I almost cried in the office at the thought of having what little bit I have now falling out again. I am not a vain person, but if I had my hair on my head this whole ordeal would be so much more tolerable. I am sick of wearing hats in public and would rather go bald than wear a wig. If I had hair no one would know what I'm going through unless I told them and I wouldn't have to hear their stupid comments. Did I read on this thread that it causes thinning? Any info is greatly appreciated. Here's to a better year coming up for all of us!
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Hi MountainLife! Sorry I haven’t responded before now but I’ve been out of town. I have to wait before taking the Xeloda because my oncologist wants my body to be recovered before I start. Not just from the radiation but from the chemo and surgery. Our bodies have been through a lot. Giving them some added time to heal makes sense
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hello,
I haven’t posted on this thread before but am looking for advice. I was diagnosed with stage 2A TNBC in September. Started 4 DD AC then 4 DD taxol. I had a BMX. My path showed I had no lymph node involvement and I had less than a mm left of cancer. It was too small to even retest. My docs said I had one of the most thorough pathologists and she just kept looking. They are considering this a complete respinse. Radiation was not suggested as it would do more harm than good. My doc does not suggest xeloda but says it’s ultimately up to me. She said for people with my path it is not suggested. I’m scared to be done treatment and don’t want to regret anything. Than
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