All about Xeloda
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Mls1, I have that same problem and was told by my eye Dr. I have dry eyes. I've been using OTC TheraTears lubricant eye drops that seem to help.
Deanders, yes, hang in there! I have started my 3rd cycle of Xeloda, 14/7, albeit a lower dose this cycle. I started at 4000mg, but have been reduced to 3000mg after a bout of H/F in my 2nd cycle. Hoping for better results on the lower dose, but I may not have been as vigilent as I should've been with cream, too. My feet bottoms inflamed, but not my hands. After staying off my feet for a couple days and applying Bag Balm, it cleared up. Others have used Aquaphor. My MO also stopped the Xeloda for the remainder of that cycle. I did have a bit of blistering on my lower lip, but no mouth sores. Hoping Madame X will treat you well.
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Mls1..I have used Restasis for years. My eyes water, but they were worse when I was on Kadcyla. But it was mostly my right eye.
Your eyes water because the chemo makes them too dry. So apparently, something like Restasis or Systane helps.
For the last few months, my eyes have gotten so dry at night...maybe because I have my A/C on??? Then when I arise, they get all messy with mucous. I call it "eye-snot".
Once I get moving around, that gets better, but watery again.
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hi leee, I have just been discharged from hospital after a plueral effusion. I was on my second course, but I think it may have been building up even before I started taking xeloda. After stopping xeloda, I had a chest drain , where almost a litre of fluid was removed. I am now awaiting a telemed appointment with the oncologist about what happens next. If you want a more detailed ' chat' , email me.
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Camama, I think you should be able to post here since you're finding it the most helpful Xeloda thread.
deanders, I can really understand your anger and frustration about the way your treatment was initially handled. It sounds like you feel your in better hands now that you've moved your treatment to Seattle. I, too, drive an hour for my onc (Pittsburgh) and have been doing it for over 9 years. It is worth it. You learn to take it in stride.
I can offer you lots of encouragement. I find Xeloda very tolerable. Foot issues are minimal for me and I didn't even have any for the first few months (it's almost 6 months I'm on this med). I don't have foot pain. I do one week of meds/one week off and towards the end of the week on, my feet will start to feel a mild burn, but I still get around. It is not debilitating. The sensation goes away during my week off. I would not call it neuropathy. I am still able to walk during my week off. It's a matter of pacing myself.
I would not be surprised if you find this medicine easier to tolerate than iv chemo.
And no, this is not a death sentence. My suggestion is for you to make some plans to do some fun things to have something to look forward to, like a day trip somewhere to get away. Just work around the covid guidelines. Yesterday, dh and I met up with ds and his girlfriend at a restaurant and we ordered take-out, sat in the car and ate it, then took a hike on some trails in a botanical garden . We wore masks when necessary, but the garden wasn't busy and it was wonderful for all of us to get out. Oh, then we went and got ice cream. This is a different yet still important form of medicine. Treat yo' self, girl!
Another thing. Before mbc, I would occasionally take time to think about and re-assess my life to find what was and wasn't working and make adjustments, and I still do this only now I'm even better at it. I've learned to make life as easy on myself as possible, stop doing things I felt obligated to do or did because I didn't want to hurt someone's feelings, and do more of what I truly in my heart want to do. Even tho I love a clean house, I stress less over chores, keeping things simple. I also realized some relationships weren't worth my energy even if it meant spending more time by myself. My circle of loved ones may be smaller but now my energy is spent on those who are truly most meaningful to me.
So don't be afraid to take stock of where your life's at and see how adjustments can improve your outlook. It's not just mbc, but some things and some people can bring you down. When you clear out the unnecessary, you find more room to do what you want and be with who you want and not fill up others' agendas.
I am wishing you all good things.
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Well said, Divine. Saw Olivia Newton-John on Sunday Morning today. I agree with her attitude. We know the statistics, but it's more how we choose to live, and she plans on living more. So do I.0
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Divine....do you get your chemo at Hillman? I live in Greensburg, 35 miles away, and my onc works with Dr. Brufsky on my case. Dr. Brusky is head of clinical trials at Hillman and Magee.
Denise
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Denny, I go to the cancer center at Allegheny General. I live an hour west of Pittsburgh just across the Ohio border. What's interesting is there's a cancer center in my area but my oncologist who is affiliated with the one here sent me to AGH when my biopsy came back malignant. Not sure why but am glad he did. To clarify, I had chemo in 2011 and have been on oral meds and zometa since then.
Have been in your neck of the woods, tho! I bought my Hyundai Santa Fe Sport at Mike Camlin Hyundai in Greensburg two years ago. Got a great deal, an even nicer vehicle than I was looking for and I love it. Plus I just paid it off this month. Love that part, too, haha!
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I read a really interesting book over the weekend. It is called "Radical Remissions" and is about all these people who were able to beat their cancer using some alternative methods in addition to conventional treatment. As I read this book, there were certain things that really resonated with me. Like diet, exercise and emotions playing a role in depleting my immune system. I'm not saying that if I eat berries this will go away but making some changes certainly can't hurt. At worst, I will make my body a little stronger to tolerate treatment better. Did any of you make major lifestyle changes that had an impact on your journey? Do you guys believe that things like eating well, getting rest, exercise and spiritual beliefs make a positive impact?
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Deanders,
During my AC-T treatments, MO believed that the tumors were not responding. I was really scared and I read a book called The Metabolic Approach to Cancer. It really motivated me and gave me some hope. Psychologically, I felt like I had some control over my treatment. I started following many of the advice in the book, including reducing carbs, eating organic, etc. I did not get a PCR, but it did seem to shrink my tumors, including the cancer in supraclavicular area. I believe my lifestyle changes help me, but even if they don’t I feel better psychologically.
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deanders-I believe that a good emotional outlook can be beneficial. But if you plan to ingest any of the alternative substances, please check with your onc or pharmacist to make sure that they won't keep your chemo from working. In my 18 1/2 years of BC research, I have yet to find any of the alternative junk that really works.
Divine-how interesting! AGH is a great place, but I have UPMC insurance. So I have to go to the UPMC clinics. I am glad that you came to Greensburg to find your car. I have another 4 years to pay on my car...LOL.
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I would never use just natural treatments - the gamble on that is just to pricey. But anything that can help strengthen me certainly can't hurt. My clinic has the Naturopathic Oncology right there so they talk constantly. This is just a crazy disease - why can't they get better at treating the Triple - ?
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Hello, I am on my 6th cycle of Xeloda (cycle is 4 weeks of 7 days on/7days off). I am staying on current 2300/mg per day until September scans.
As you remember, I started at 3300mg/day, had terrible side effects from HF, then dose reduced to 2800, 2300, to 2000. Now slowly increasing from 2150 now second cycle of 2300. I have minimal side effects now and recent labs and CA15.3 have greatly improved. Scans will tell me if I am still stable.
Thinking of everyone who are on this treatment.
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I just finished my 7th cycle (2 weeks on, 1 week off) and for me, SE have lessened. I know that’s not typical, so maybe I’m getting better at protecting my hands and feet? Also, due to wildfires in Northern California, I have not been walking outside for the last two weeks due to bad air quality. I wonder if I should have increased my dosage mid way through. The initial plan was to start off at 4000 mg, but due to low ANC, I started at 3000mg and have been at that dosage for 7 cycles (with 2 minor interruptions).
SandiBeach - good luck on your scans
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NorCalS, my MO is trying to balance drug efficacy with quality of life. If my scans show continued liver improvement in September, she will keep me on the same dose of 2300 mg. I walk/jog and feet are just slightly red at end of day..no burning, blistering or pain. My hands were never impacted..odd, isn't it?
S
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NorCalS, I am on my third cycle of Xeloda (2 weeks on, 1 off) and my ses have also decreased. I did decrease my dosage from 3500 to 3000 after the first cycle for gut issues so maybe that has helped and/or I am learning to manage them, but they are better than my last cycle. I don't walk more than 1/2 hour straight at a time although that doesn't count grocery shopping, etc. My H/F is minimal; just heat and dryness. My hands are not impacted either although I notice a slight color difference in the lines. I crochet a lot so I thought they might struggle. I have my first scan while on X tomorrow and I feel slight liver pain so I am concerned about my scans.
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My mothers cancer is progressing and they are taking her off of Tamoxifen and Afinitor ( switched to this from Fulvestrant and Ibrance) and starting her on the 2,000 mg of Xeloda 7 on 7 off. I would like to find out what she should expect. She is 84 stage IV metastatic BC. Original diagnosis was 1991 BC and Stage IV diagnosis in 1997. Thank you for any information.
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I am starting my fifth cycle Friday and my se’s have not lessened. If anything the hand and foot thing is getting worse and I have major diarrhea on my week off
but my onc is reluctant to lower my dosage anymore because the scans show it’s working. I started at 3600 And had it lowered to 3000 for the second cycle0 -
Mls1,
So sorry that your SE are worsening. I read through a lot of this thread and it seems that is the normal reaction. I had a bad reaction at the beginning (constant headaches, skin discoloration, nausea, hand pain, etc) so I did have two interruptions, but after the last interruption my SE have dramatically lessened. It seems that these drugs affect people so differently. I have been staying off my feet as much as possible, especially within 4 hours of taking Xeloda. I also reduced my daily walks and I wear cotton socks all the time (even during sleep and the last heat wave). I don’t know how much this helps and frankly I am really surprised that the constant headaches have for the most part gone away
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IntoLight,
Good luck on your scan tomorrow.
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Dogwood. I am 71, 18 1/2 year survivor of Stage 4 MBC de novo. I am also on 2,000 a day at 7/7. My side effects are tolerable, and I use Aquaphor constantly.
Xeloda along with Herceptin has kept me at NED for over 2 1/2 years.
Denise
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I’m on 2000mg per day 14 on and 14 off. HF left with dose reduction from 2500–>2000 and all I have is fatigue and a bit crummy feeling in the first few hours of the morning during the on weeks. Feel fine during 2 weeks off. Schedule is due to low ANC. I take long walks daily but, in very cushioned shoes. Aquaphor as needed at night.
Into the light- good luck with scan
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IntoLight-good luck with your scan!
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IntoLight, good luck with scans tomorrow.
Denny123, I can't tell you how happy it makes me every time I see you write "18-1/2 yr Stage IV de novo survivor." Inspiration and hope!
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Good luck with the scan today, IntoLight! Thinking of you!
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Thanks Bliss!
I have an appt with my onc today and have so many questions..the denial of my CT scan (by my UPMC insruance), my constant rib breakage and my low sodium issue.
At least I am not worried about my scan results, since I couldn't get one.
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deanders, I totally loved the book "Radical Remission". I read it when it came out in 2015, when I was a few years into living with mbc and it offered me so much HOPE. I was in a parking lot between Trader Joes and McDonalds reading it in my car passing time while waiting on my my son who was in the Pittsburgh Google office for half a day doing a college project. That's how big an impression the book made on me, I remember where I was when I began reading it.
I'm steadfast in my belief in conventional medicine, would not be here without it, but I'm all for complementary medicine that works alongside the conventional and does not interfere with it. The themes in Radical Remission are very much complimentary. Most of us know how the drug Ibrance is used for mbc to help boost the effectiveness of cancer drugs. I feel that complementary medicine, tho not scientifically proven, can give a boost to conventional medicine. I don't follow a strict diet but I did make a few changes like cutting out soda, eating more nuts and fruits, drinking lots more water, eliminating stress.
Another similar book I recommend: Mind Over Medicine by Lissa Rankin, MD. I also like The Blue Zones which is about eight different areas in the world where people live the longest, lots of people live to 100, and it details what researchers found about their lifestyles. Btw, there's a followup book published this year called "Radical Hope:10 Key Healing Factors from Exceptional Survivors of Cancer & Other Diseases". I haven't read it, but the author did a 10 part video series covering the book and I watched it. It was okay, I think I will get the book from the library now that I think about it.
My belief is we need to nurture the hope inside us. I do not go around all perky and upbeat, but neither am I total gloom. I love to be inspired and given the possibility that maybe, just maybe, things will work out while still knowing you just never know.
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So I went in yesterday to get my first PET scan and they did another CT. My new MO just wants a baseline since my first MO never did any scans. I really don't care what the scans say right now - I know what's going on. Doesn't mean I wasn't nervous though. While I was waiting for the radioactive fun to soak in, I was able to get on the phone and get my Xeloda prescription on the way. Insurance approved and they have me using a mail order place, which is fine because the cost is low because of it. I was worried that it would be so expensive that I wouldn't be able to afford it.
So I will most likely be starting my cycles later this week - 14/7 at 3000mg a day. I am so worried about SE's - I look in the mirror and wonder if today is the best I will ever feel again in my life. And I see that you guys are all having good success but most of you are ER+ so there are more treatments that have kept you going. My original cancer was ER+ but when it spread it changed to triple negative, which he said is pretty common. Being triple negative makes me feel doomed but I don't like the triple negative board because they are pretty gloomy there and that's not what I want or need. I want to hear their experiences with treatment and SE but I don't need to see them say if you can't find a clinical trial or if immunotherapy doesn't work - you're screwed. That's not what I want to believe for me. I already struggle with not crying every day and seeing the negative side just makes that worse.0 -
deanders, I will pray your se's are not bad for you. I mainly struggle with fatigue and bowel issues which are not too bad. This is doable and you will eventually find a rhythm that works for you. Hang in there.
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intolight , good luck with the scan.
denny123 ,I have an issue with low sodium, I will be interested to hear what your medical team say. I was wondering am i drinking too much too much water??
deanders, wishing you an easy, effective time on madame x.
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Saw my onc today and also got my Prolia shot.
Denny10-my onc is going to send me to an endocrinologist about my sodium. My friend was there also getting her Prolia shot and she told me that her niece had low sodium and has to take sodium pills and eat stuff high in sodium. So I asked my nurse for some chips. LOL
Amazing how something that isn't good for me, is probably good for me. You can google SAIDH, which is what she thinks I have, and yes..drinking too much water isn't good for us. BUT, with Xeloda, we have to drink a lot of water....seriously.
But Xeloda could also be the cause of the low sodium.
And my rib breakage....he has no idea what to do. I do have osteoporosis, and he said to do aerobic stuff. I have a treadmill that I haven't used since I started X, but I am going to use it a little daily again. I guess it is better to have sore feet than a broken hip.
He is going to order a full CT scan and bone scan for November and said he likes to fight with the insurance company if they bulk at a scan.
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