Xeloda and TNBC
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My bad - 1,500x2 per day for 3,000 total, not 3,000x2 per day. I went back and edited my last post to correct. Yikes, 6,000 would be horrible. I started at 4,000/day and went down in midst of second cycle after HFS SEs.
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Thanks for clearing that up, SuprSuvivr. I was worried I was getting the wimpy dose!
Trish
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Here's an update after meeting my Oncologist today.. Last week was a really tough week even though I was off the Xeloda. Lot of digestive issues and hand and foot issues your. My hands much worse than my feet they are still hard to use but they should be better by this weekend according to my Oncologist.
The Oncologist has decided that I am done talking the Xeloda.
I was only able to finish 2 cycles so that worries me. I have to say after meeting the Oncologist after radiation treatments ended how he strongly suggested I take the Xeloda. Saying if the cancer comes back not a lot of options plus I would have like 18monts. Today when it was decided I would no longer take this drug the Oncologist and nurse who came in with my follow up appointment acted like it was all good and I had finished when in reality I only finished 25%. I have to say I'm a bit scared. I'm so ready to feel better and I'm trying to remind myself I have done everything I could do now I need to feel better and live life!
The side effects were just too much and reducing the dose much more did not make sense at that point you had to weigh if taking such a low dose was worth any side effects I could continue to have. I was talking 3 in the morning and 2 in the evening. I'm a small built land 5ft tall so I started lower than most. I have to say I was ready to duke it saying my body needed a longer break but when he said done I was happy but very scared in my head.
Myenergy level was so bad as well laying on the sofa doing nothing not the way I want to live. Now I go see the doctor every 3 months and I have a scan in 6 months. So here's to getting better soon!
Sorry I the post is all over the place I guess so am I.
Hugs and prayers,
Ni
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NKS, I'm sorry to hear about the troubles you had with the Xeloda SEs. I'm sure it'll be a blessing to heal up and get your energy back! My prayers are with you! ✨🙏🏻✨.
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Hello!
Xeloda newbie here. I hope my learning curve isn't too annoying.
I meet with my BS on Wednesday to discuss Xeloda, which I know she's recommending I take. I had a BMX on July 28th. Our hopes were high since I'd had a complete clinical response and during surgery, my nodes looked negative. But I didn't have a complete response - about 3 cm of residual cells (tumor was 7+ cm). One node also had a small contained positive growth. My margins are clear.
Previously, the plans were reconstruction and rads. I have TEs.
What little else I know is that my BS wants 6 months of Xeloda and my insurance has already approved it. My insurance never approves anything quickly. My path results came in last Wednesday or Thursday. Heck, I still have my drains.
I did six 3-week cycles of Carboplatin and Taxotere before surgery. My side effects were tolerable. Fatigue and chemo brain were the worst.
I've spent the past decade dealing with chronic diarrhea from Gallbladder Syndrome (no gallbladder). Certain antibiotics have sent me to the ER for severe dehydration from worse diarrhea than usual. So potentially making this problem worse worries me.
I don't know if rads will be first, then Xeloda? My nurse mentioned a possible clinical trial after Xeloda based on my results.
Where are the brakes on this out-of-control car? Who started driving it down a steep, curving hill?
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All's quiet on the Western front.
I'll be taking three 500 mg tablets (1500 mg) both AM and PM while also doing rads. My cycle is 5 days on, 2 days off. I wasn't given any concrete information on how this will benefit me - stats, figures, facts - just that it should reduce the chance of recurrence or death.
Is anyone on this cycle? Doing or did both Xeloda and rads at the same time? I'm already worried about rads burns. It's 2 weeks exactly since my BMX and my bloodwork is the worst it's been, including during Chemo. My questions about side effects were dismissed with "almost no one really has that happen." I thought I already knew my path report results, but was told two days ago that, "oh yeah, they found a second tumor. But it was removed."
I wish someone could help me understand some of this. I realize that my odds of living for another five years are about 50 - 50. I want to make the best informed decisions _for me._
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Hey Feline,
Another Xeloda newbie here. I'll be starting on Monday, 1800mg 2 x per day. I'm going to be on a 14 days on/7 days off schedule. I actually pushed my MO to get me on Xeloda. She was hesitant until she did more research.
I've had the pills for 4 days already, but decided to hold off taking the first one so I can have my off time for my birthday later this month.
As far as why to take Xeloda, it has to do with the CREATE-X study out of Japan and South Korea. Giving Xeloda to triple negative BC patients who didn't have a pathologically complete response to neoadjuvant chemo, increased their 5 year disease-free survival rate from 55% to almost 70%. That's a huge difference, and makes it worth it for me.
Good luck with the treatment. Hope both our side effects are minimal.
Trish
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Hi Trish!
Thanks for replying. I knew there was a "Japanese study," but I didn't know what it found. That certainly is a big increase in survival rates.
If you don't mind my asking, did you do rads first? One of my biggest concerns is that (from reading this board) and based on known side effects, that doing Xeloda and rads together isn't the norm. My BS said my margins were clear (5 mm+) and that there's no reason to rush, but just get it all done to be done with it. She also has her eye on an immunology study for Stage III TNBC without complete response to neoadjuvant Chemo. But I must finish Xeloda and rads first. The plan is for 6 months of Xeloda.
I think I'm emotionally and physically burnt out right now. I've read that waiting 4-6 weeks after surgery to start Xeloda is common. My BMX was two weeks ago yesterday. I'm still learning how to use this new, actively healing body of mine. I'm supposed to start the Xeloda as soon as it arrives, which should be this coming week.
I want to do Xeloda. I also want to do it right.
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I posted a link to the CREATE-X trial info and a news article about TNBC and X a couple pages back on this tread if you ladies want to go back and look. The main SEs for rads are fatigue and the skin issues. The main SE for X are fatigue, tummy issues, and HFS. If I were doing both, I would be sure to drink lots of water, eat a high protein diet to help with healing, take Vit D3, B6, B12, and biotin, and regularly get at least 20 min of exercise per day. The exercise really does help with fatigue. Get Aquaphor for rad skin (I also used miaderm and emu oil from Amazon). I use Udderly Smooth 20%urea and Theraplex every night on feet covered with socks. Try to keep hands and feet away from heat and friction. Go see a PT to get stretches to help prevent lympadema which may come with rads. Good luck and and God bless. This too shall pass! ✨🙏🏻💪🏻✨
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An update on my Xeloda journey - I'm on day 10 of 14 on cycle 5. I've had very little D or nausea, some but not bad. I've had occasional bad fatigue but mostly it's just a general low energy. My main SE is HFS on feet. I can't take walks or do my cardio at the gym due to friction/heat. I went for small walk the other day and have had to break out the steroid cream and cold Epsom soaks the last couple days to help heal up. I do weights, stretches, and some yoga to offset lack of cardio. I am counting down the days left, let me tell you!!! I wish I could be more active. You also get sun sensitive, which is a bit of a bummer on those pretty summer days. I've only one more session left, as doing six not usual eight. Mine was shortened so I could qualify for clinically trial later this year. My end date for X is 9-6-17. Can't wait!!! Hope the rest of you are doing well and hanging in there!
For those looking for more X info, go to the Xeloda for Triple Negative Breast Cancer thread.
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Questions! I hope someone can help me with these questions!
1) What is the standard cycle for X?
The study info seems to suggest 2 weeks on/1 week off or 3 weeks on/1 week off (I'm confused there.) I've seen posters say they're doing 7 days on/7 days off, but this seems to be a change after they've had significant SE. I ask because my BS prescribed 5 days on/2 days off and I haven't seen any references to that type of cycle anywhere. It would be for six months, meaning I'd have 24 cycles???
2) Is there a minimum standard starting dose? Or a dose that's considered really low? I realize dosage is based on height and weight. My concern: 3000 mg total/day seems to be regarded as low, possibly a dose for a small woman or someone with SE. I'm a large woman (5'7", 250lbs) and my BS has prescribed 3000 mg. I have yet to start X. She bragged that her X patients rarely have any SE.
My BS was great in the beginning. Then she took an unexpected vacation. Her whole office was so shocked they even told patients she rarely takes off two days in a row, let alone a week. Two appointments after her vacay, she had huge, almost black bruises under both of her eyes and was wearing over-sized mirrored sunglasses and a large, floppy wide-brimmed hat. The next month (July) she took 3 weeks off. Before Vacation No. 1, she always had residents with her. None since.
Until this past week, I hadn't seen her since June. I was doing 3-week Chemo cycles until 17 days before surgery, so Chemo check-ups too. No check in before or after my BMX 2 1/2 weeks ago. My parents were confused by what she told them after the surgery while I was in recovery.
Post-op was last Wednesday. I already was upset at not getting timely or full results of my path report. At the post-op, she mentioned they'd found a second tumor. After informing me that it'd be illegal for her to withhold information on my diagnosis. Something I just may have told one of her staff the week before that.
My gut says something is off, maybe her own health. I'm no longer comfortable. I said nothing until the second vacation when I asked my main nurse if there was anything happening that might affect my well-being. Not "What's wrong with her?" or "Plastic surgery, exploded air bag or ???" Etc. I was assured I'd be fine.
I don't feel fine. I feel nervous and stressed out.
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I did find most of the answers to my questions above. Much of it was on this website about "Xeloda 150mg and 500mg Film-coated Tablets."
https://www.medicines.org.uk/emc/medicine/4619
My prescribed dose is low. The recommendation for my body surface area is 2800 mg/twice a day. CREATE-X used cycles of 14 days on, 7 days off. With severe side effects, doses either were lowered or the patient switched to a 7 days on/7 days off schedule.
It can be taken at the same time as radiation.
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FelineMum,
Glad to see you got your questions answered. The dose and schedule do seem unusual, but it may be due to newer research. Or it could be that you are doing radiation at the same time. You should ask your MO (if yoj feel like she's back to normal) about it. I didn't do radiation at all, just Chemo, BMX, and now Xeloda.
I started mine yesterday. 1800 2x per day. So far, so good! I know it's cumulative, so I would imagine the side effects will hit eventually.
Also, in regards to what SuprSuvivr said about taking B vitamins: DON'T!!! According to my doctor, specialty pharmacist and all the websites I've checked, the B vitamins and folic acid will intensify Xeloda's side effects. I was told to avoid all B vitamins. Again, you should check with your medical team.
Good luck
Trish
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Thanks Trishyla!
One comment on B vitamins: A handout I have from X's manufacturer says to take Vitamin B6 (pyridoxine) to help with Hand-Foot Syndrome.
Another tip I got for Hand-Foot Syndrome is to use O'Keeffe's Working Hands Hand Cream in the tub (vs. a tube). Walgreen's has it on their website for about $6. It's marketed toward men, but is supposed to be good for very dry, cracked skin.
I have a consult tomorrow about radiation. I'm looking forward to it.
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Yes, I stopped taking my B complex with folate and been taking the B6 and B12 as separate pills. Folate and folic acid interfere with the Xeloda. The metastic ladies on the All About Xeloda thread have been taking the same separate Bpills. But definitely go with your heart and onco advice.
I just finished cycle 5 and am so glad to be on 7 day break. I'm also so looking forward to clicking off those last 14 days of last cycle 6. My HFS has slowed me down a lot as my feet are hot and bothered. I want to get my active life back
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SuprSuvivr,
I hope my last post didn't sound too harsh. I had literally spoken to the specialty pharmacist just hours before, and he was very adamant about no folic acid. I've since realized thst most b vitamins come with folic acid to help them work more efficiently. You're right about the individual b vitamins. They can help with the SE's
I'm sorry to hear about your foot issues. I've been following your progress, and have been heartened by your relative lack of serious side effects. I hope you're able to get it resolved enough to finish your full course of treatment. Good luck, and please keep us up to date on how you're doing.
Trish
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Thanks, Trishyla, and we're all good. I've been reading up on whether to drink green tea and there is just so much info. Just to be on safe side, I'm going to give it up for the next month or so, as from what I've read in some places it can reduce the effectiveness of the chemo. If I'm going to all this trouble, a glass of green tea is not worth having it reduce anything.
I did get a steroid cream from my derm for the HFS but steroids make my eye pressure increase and I'm borderline glaucoma. I use the cream very sparingly.
Good luck all you X ladies! ✨🙏🏻✨
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Checking in for the first time in a long time. I think I have had every side effect of Xeloda there is - the ones on the most common list and I've had some on the least common list. I just finished my 3rd cycle and am on day #7 of my break. I am on 4,000 a day so maybe my oncologist will lower it tomorrow...please! I want to take the most because I feel as if it will provide me the most protection but I can't live like this. I am still so totally exhausted - I do one thing and then sit down. Then when I can I get up and do another. I am pushing myself to keep doing things, but I would rather just go to the couch.
Thanks for all the good ideas! I did stop the green tea awhile back and now I am going to ask my oncologist about the folic acid. I am on a B-complex so maybe I should change that.
Blessings to all!
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Yay! My oncologist lowered my Xeloda dosage to 3,000 a day. I think she finally understood that I was still so sick even through my week break.
I did ask her about Folic acid and she said she had never heard of any interaction issues but to go ahead and take the B6 and B12 separately. I checked my B-Complex and my multivitamin - both had 100% of the daily requirement. Did you all stop taking a multivitamin, too?
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I start X on Sunday, after two weeks of two different specialty pharmacies having probs with my insurance. But it's supposed to arrive before the weekend and having Sunday as the start of my cycles makes sense to me.
My BS said she's using a lower dose than what the study recommended for a person my size because a) she thinks there's greater benefits in being able to finish 6 months of treatment and since SE worsen at higher doses, it's harder to do that b) the research on body fat's impact on the effectiveness of X is inconclusive but fat does retain things like medication longer which can worsen side effects and have long-term effects and c) by having a cycle of 5 days on/2 days off, I get an extra treatment day every 30 days while hopefully lessening the risk of severe SE. If I tolerate X well, she's also willing to raise the dose.
As for rads, X could make my radiation "sunburn" worse, but that should be it. I'll be having 33 sessions or 6 1/2 weeks worth. Permanent lung damage is inevitable due to the location being targeted, but I've never smoked and the rads onc thinks I shouldn't have any respiratory probs down the line.
I need to finish getting everything I'll need while on X. I started using O'Keefe's Working Hands Creme on my feet b/c chemo dried them out. I actually have soft, normal skin again. The creme has urea in it, which I've read is good for X skin.
And hopefully my last drain will come out tomorrow!
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Good luck, FelineMom! I hope it goes smoothly for you now. I had read to go with lotions with 20% urea. Warrior2016, yes, I stopped both the B complex and the multi vitamins. I try to get my 4-5 servings of fruit/veg in each day to help offset. I have two more days of my 7 day break, then I start my last 14 day treatment cycle. I'm so ready to be done. It's felt so nice to get back exercising these last few days. Seems like about two days into my break week my feet recover enough. I never stop with nightly lotions/socks. I had my monthly onco apt yesterday. My RBC and WBC are in low 3.2-3.4 range and have been steadily dropping all year. KInda freaks me out but oncologist seems unworried. Guess we'll see what they do after treatments end.
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Lucky you SuprSuvivr, to be starting your final cycle! I have 3 days left of my first cycle. Then just 7 more to go
.Warrior2016, I was the one who posted about not taking folic acid. It was the specialty pharmacist who said it makes all the side effects much worse. Hopefully you'll get some relief if you stop taking it.
Trish
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Hi Ladies,
I'll be starting Xeloda soon and wondering how everyone has reacted so far to it. I tolerated chemo very well and I'm hoping I can tolerate this as well. I had a 70% response to chemo. But here is a kicker for me. I was diagnosed with tnbc 1/10/17 but after going over my path with oncologist I found out I'm also er+. Has this happened to anyone else?
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Hey, Hivemind:
What would you recommend I get before starting X? I've been reading this thread and know I should browse other X ones. But please share suggestions!
Here's what I have:
- B6 and B12 (no folate)
- Hand & foot cream with urea (O'Keefe's Working Hands)
- Soft slipper socks for wearing around house & at night
- Diabetic socks (X handout says to avoid tight socks/shoes)
- SPF 50 sunscreen (Broad spectrum)/wide-brimmed hatI got my second addition to my TEs today, along with a drain removed and fluid manually aspirated. My cherished 3-year-old cat had a stroke and died Friday. I hurt. I'm tired. I'm finding it hard to give a damn.
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I'm so sorry, FelineMum about your kitty. Even if it's not top of your mind because of everything else going on, it does affect you.
Great list you posted. I didn't know about the diabetic socks. Are they compression socks, or just ultra soft and comfy?
Hope you start feeling better soon.
Hivemind: my TNBC didn't change, but they found ER/PR positive in thr ither breast. Sucks...
Trish
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Oh, FelineMum, I am so sorry you lost your cat. Emotionally that is probably affecting you the most right now. Our animals give us unconditional love all day every day. My 8 year old Golden Retriever, Willow, is in renal failure and all I can do is make her comfortable and loved. I have had cancer for 11 months now and she has been with me every moment. When I'd wake up at 2:00 in the morning she was there with her head on my lap and if I so much as sniffed she would climb up on the couch or the bed and rest her head on my chest or my shoulder. I couldn't have done this with out her and I don't know how I will do it.
I used Udder Cream with the 20% urea - got it off Amazon. I just like the feel better than O'Keefe's. I also carry a backpack in my car with my meds and Depends. I have had 3 cycles of Xeloda and twice I have had explosive watery diarrhea away from home. It doesn't happen to everyone but I wish I had been prepared the first time. I am 65 years old and have never had anything like that. Both times I was an hour away from home, caught totally by surprise, and had to endure the ride home with stops at every convenience store. Thank heavens my husband was driving. My oncologist has lowered my dose as I guess it was just too much for me.
Fight on, FelineMum and everyone else. We can do this!
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Thank you, Warrior2016.
Not everyone understands how important our pets are. My Taz spent two years battling asthma and cardiomyopathy. He rarely objected to his daily meds - not even his asthma inhaler. He loved life and fought hard to stay here. I've been legally disabled since 2014 and we shared our daily struggles. On his bad days, I'd tell him I understood. That having to take meds every day for the rest of your life does suck; that it's not fair ... but we do it anyways. On my bad days, I'd tell him I didn't want to be a hypocrite. He'd even remind me if I forgot or fell asleep at 'med time' (usually by sitting near my head and staring at me). Like your Willow, he knew exactly when I needed him. I'm so sorry that she's in renal failure.
I added Depends to my grocery list. That's such a useful idea. I have Gallbladder Syndrome, so diarrhea has been a constant in my life since my gallbladder was removed. I never go anywhere without Imodium-D.
Trishyla: Diabetic socks are super comfy soft socks that don't cut off circulation. I bought a 2-pack yesterday at Aldi (That store has the darndest things). I've also seen them at Dollar Tree. For some reason, they're often labeled as men's socks. Sorry to hear about your new results. That does suck.
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FelineMum, I'm so sorry about your cat.😥 The bond with a pet like that is very special.
Trishyla, I'm sorry about your new test results. Be strong, my dear. Fight the fight
As for your list, I would add Vitamin D3; I also take biotin to help my hair and nails recover from neoadj chemo. My favorite lotion has been the Theraplex, nice and waxy. You may also want to buy some cooling pads to have in the freezer and or Epsom salts. I'll put my feet on the pads when they feel particularly hot, and sometimes I'll soak themin cold epsom water.
Itook my first dose of the 14 day cycle tonight and already they tingle and are hot. Oh well, this too shall pass. I can do it! 😜
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Thank you, SuprSrvivr.
I use epsom salts for muscle aches, so I've already got those. I like ones with eucalyptus oil in them. It feels cooling. But I wouldn't have thought to use it for my feet. What you said about cooling pads made me think of the "cold socks" I've seen on Amazon. They're targeted at people with neuropathy, but can be used for chemo too (why I looked). One reviewer said they were so much better than trying to tape or tie ice pads or bags of frozen peas to her feet; that she can just slip them on and go to bed. Hopefully, I won't need something like that, but if I do, at least I know it's out there.
My hair's growing back fast. I shaved it three times during Chemo. It'd start to come back between cycles - not normal hair but enough to make my wig sit funny and scarves slip off easier. My hair always grows fast, which sounds nice. But hair cuts grow out fast and hair color even faster. I'm more than 50% gray - which no one can argue with me about anymore! I do feel a bit like a zebra, since I have black and white "stripes."
The downside: My body hair is coming back too. I know I'm supposed to only use an electric razor but using one on my underarms means more nicks and cuts, not less. I'll use caution, for hairy pits aren't my thing. TMI?
In some ways, it'd be easy to say, "Well, I followed the protocol for TNBC. Chemo & BMX. Most BS's don't recommend more. So why bother?"
Most cats with asthma never use an asthma inhaler, no matter how much it could help them. Many asthma cat owners don't even know it's possible, But doing so gave Taz a better quality of life - and likely a longer one - without nonstop vet visits, tests, harmful steroids, etc. Think what you may, but I believe Taz would be disappointed if I didn't fight as hard as he did. And I told him I didn't want to be a hypocrite. And I don't.
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I've been taking Xeloda since July 17, 2017. So far, all is well (thank God!). I'm on 3,000 mg (take 1,500 mg in the morning and take 1,500 in the evening - twelve hours later). I keep my hands and feet well moisturized (and both my hands and feet are still quite happy). I take a probiotic, b6, b12 and vitamin e (to keep hand-foot syndrome at bay - also take other supplements and vitamins), and I always wear an organic sunscreen (have for years). I'm still eating well and only drinking water. I will be starting cycle 3 on Monday, August 28.
I hope everyone is doing ok.
(((hugs)))
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