All about Xeloda
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IntoLight, I was on 3000mg a day, 2 weeks on 1 week off the same as you. A couple of months ago the second week was getting so bad I was skipping day 10 pills. My doctor changed it to 3000mg 7/7 and it is so much better. The 8th day is kinda rough but that is the first day off so things get better from there
I have a ct scan booked for feb 4th hopefully the drug is still working. My tumour markers are almost down to normal (ca-15-3 was over 1000 last June) so I’m not too anxious about the scan
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Hello All, I am so reassured to see familiar people here and that Xeloda seems doable for the most part. Just been told my cancer is progressing, nodes in pleura, a spot on my spine and an enlarged lymph node in my chest. Main issue is a large pleural effusion- my right lung is full and I need to go into hospital on Monday to have this drained over a couple of days. Been so breathless it’s scary, but now we know why!
Then it’s change treatment to Xeloda as the Faslodex is clearly not working. I’ve only scrolled back a few months worth of pages to see how folk are doing on this as clearly anything new is also scary SE wise. Is this the best thread for Xeloda or can anyone point me elsewhere too please?
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Hi, Karen, and welcome! We interacted on the Ibrance/Faslodex strings. Yes, you're in the right place, and many of us have had a relatively easy go of it on Xeloda. I'll PM you.
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You are a Star Lynn. I did notice you’d supported another newbie with some info a few pages back. Thank you!
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Karen, hello. Sorry to read you have progression but yes, you are in the right place. I will pray Madame X (as we call it) treats you well. Let us know if you have further questions. Chris
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Hi ladies!!! my search for answers to Xeloda + foot pain brought me here! Any suggestions? I don't have cracking or peeling just pain! walking feels like walking on legos!
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isHarvey 822- what does are you on? How long have you been taking xeloda? I had foot pain on 2500 mg per day and decreased my dose to 2000mg per day and I got much better. I also changed to 7/7 schedule. Dont ignore this - please talk to your doctor about this. Take car
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IsHarvey, I had the same experience as Nkb....pain when walking when on 2500...and that pain resolved when I was reduced to 2000. I'm on 7/7 and have always been.
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Isharvey, I am on 2150mg/day. 7 on, 7 off. Watch for HandFoot syndrome in case you have to dose reduce. I am grade 1 with HF.
Just a gentle reminder, we are a stage IV only thread, but I don't mind imparting my knowledge at this time.
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Thanks ladies. I'm on 3000 a day? 1500 am and 1500 pm. This is just my second round and I'm two weeks on and one week off. I see the oncologist Thursday and will talk to her about it. I haven't figured out how to change my info and make it stay apparently! I've updated it but it goes back to my 2012 dx. I'll try again! Stage IV dx 1/2020. Mets to liver, lungs, back, eye, lymph nodes and likely brain. I'm an overachiever! haha! Thanks again!
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Yay! Figured it out! I had to change it to public
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Hi everybody. I am encouraged to see some of you that I "know" from other threads.
I just started Xeloda a few days ago - 14 days on/7 days off, plus Herceptin shot on Tuesday. I have had an interesting 2020 (more so than most people.) I had been on Herceptin since diagnosed Stage IV in 2012. I was NED for literally 7 years and had great quality of life... even taking long breaks from the Herceptin and getting only my Xgeva shots. (my original mets were to my bones and liver) I had back surgery in April to repair some issues in my lower back that cancer and other sports related things had caused and it was very successful. I had consistent pain in that area and haven't had a twinge since then, so that is the good news. My TM's started rising a little in June but my MO thought maybe it was inflammation from back surgery. In August I started noticing some breathing issues - not severe - but when hiking at altitude. (I live in Denver) By Sept the breathing was worse and I was noticing it at home. TM's were still elevated, but not more so - they were 70. Not good but not horrible. Breathing got worse. We had CT scans that didn't show much.... a PE that was getting worse, and some filminess in my lungs, but no masses in lungs. Finally in November my oncologist decided to move me to Kadcyla, which was hard for me since Herceptin had been so good to me for so long. She was SURE it would work fabulously. So number one, I had a hard time with it.... literally couldn't get out of bed on days 3 through 6 after the infusion and had other SE's. And, it didn't work.... at all. Breathing issues were so bad that by the end of Dec I was on oxygen at night, and in the beginning of January I ended up in the hospital. CT run then showed same filminess in lungs - now worse, but luckily no cancer anywhere else yet. Echo was fine. I had a broncoscopy last Thursday in the hopes that we can get some fluid to biopsy. She is suspecting that my cancer - or at least this new round - is no longer Her2+ and that's why it didn't react to Kadcyla, but not sure yet. In the meantime I am home but now on oxygen almost all the time. I have read all about the SE's with Xeloda and am a little worried, but hoping for the best, and that it works to clear away this cancer. Today is Day 4 and I am having some fatigue.... did anyone notice that? Maybe my body just adjusting? I also have zero appetite, which makes it hard to eat high protein meals before taking.
One question I have - do you all get your prescription directly from your cancer centers, or do you have to order from a specialty pharmacy?
Again - glad to see familiar faces. I have read back through several pages of your posts and it is very helpful! Thank you! Hoping I will be here on this thread with all of you for a while!
XO
Andi
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Darn it Andi, I’m sorry to see you here. I’m sure the oxygen must be super disappointing, with all your activity on the fitness thread, these kind of restrictions to your normal life are upsetting, I’m sure.
At MDA, the specialty pharmacy is in house but they usually send it same day by currier.
I happy to report that after my initial struggles to manage Xeloda SE’s, I’ve finally got a meds routine down well enough to fell normal again. I’m confident that you will too.
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Andi, sorry you are struggling and hoping Xeloda treats you well. I pick up my Xeloda from my HMO pharmacy (Kaiser) and have lots of options so I am not the best one to answer. Is your SOB related to living in Denver? I lived there for 20 years and know you get used to it, but I struggle now when I visit. Just wondering.
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Hi Andi67, darn. You are an active person, this has to be distessing.
The key to Xeloda is to find the right dose that gives good quality of life.
I started out 3300mg/day, 14 on, 7off and had really bad HF syndrome (just feet, thou), diarrhea, heartburn, nausea..miserable. My MO gradually dosed down to 2000mg/day, 7 on ,7 off. (We added 150mg/day recently..but might have to go back to 2000mg/day..stupid feet.
My advice, keep your hands and feet moisturized all the time, 24/7 and avoid shoes that put constant pressure on feet. Drink lots of water. I continue to walk, sometimes jog..biking is much easier on my feet, but I do rest, elevate feet when they start to burn and turn red.
Call your MO as soon as you get symptoms with HF. It is better to dose reduce, then keep going off drug to heal HF.
Also, side note, it was my SOB that led to my liver mets dx. Tumor cells traveled from liver to lung and clogged my pulmonary arterioles. It was not diagnosed with xray, CT, MRI. Similar to PE, but called pulmonary microtumor emboli syndrome. Chemo AC fixed it quickly.
Keep questions coming. We have several new folks
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Andi, just sent you a PM.
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Hi Andi, welcome. I had a great run on anti-hormonals and was starting to feel almost healthy, but progressed this year. I resisted the weekly Taxol that was suggested and agreed to take Xeloda, but still had emotional problems accepting the change.
I'm just on my second cycle. Definitely tired and with low energy, but learning to work with that by doing less. On my week off, I quickly felt better. My tumor markers are around 65, with multiple mets to lung, liver, lymph nodes and bone. I don't love the new side effects I'm dealing with, but I'm really hoping they knock back the cancer, as they have for many members here, and I hope the same for you, too.
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My MO said this morning that I officially have classic Xeloda feet! Only one day off this drug and feet are red, burning with some slight purplish color in tiny patches. She said if my feet didn't return to my new normal pink baseline in 7 days, to remain off and evaluate day to day and call. I still think it is grade 1 as it doesn't interfere with my daily life.
Well..except long distance walking and exercising where feet are involved..think jumping jacks and burpees.
Remember, please contact your MO when you get symptoms, they need to know in case you need dose reduction.
For now, I continue with 2150mg/day. Finishing up 11 months on this drug for my liver mets.
Welcome new folks! Ask your questions..we can offer our personal real world experience.
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Hi Andi....we have a lot of similarities.
I am a 19 year survivor of Stage 4 MBC de novo. After I got my initial liver mets cleared out, I was on Herceptin for 6 years of NED.
10 years ago, I had a recurrence in 2 chest nodes and went on Kadcyla. It worked well and put me back into NED, so I took a 6 month break from it. But the nodes came back and Foundation One testing showed that my Her2+ had turned to Her2- Somatic (gene mutation).
A clinical trial of Poziotinib cleared out my chest nodes and I am now on Xeloda at 2,000 a day at 7/7. I have been on Xeloda for 3 years and my last CT scan showed a possibility of spread to my ribs...so my April CT should verify that ...or not.
I use Aquaphor at night on hands and feet with silicone socks and food service gloves. I also use Aquaphor during the day. I lost my appetite at first, but it came roaring back after a few weeks. I always have fatigue, and my nurses tell me that 19 years of chemo causes that.
I get my pills from my specialty pharmacy and they are great since I can talk to the pharmacist any time that I want to. My pills are delivered by UPS Express.
Good luck! We are all here for you.
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Hi Andi67- I hope that you are feeling better. I know you like to walk a lot, me too, and sew, which made the idea of Xeloda troubling to me. With a dose reduction and a change to 7/7 I am able to walk (with cushy Hoka1 cross trek shoes) about 4-7 miles- I do use vaseline at times and usually at night for hands- without the Vaseline by fingerprints don't work well on my phone.
I was tired the first month or so-but, I had severe anemia also- so not sure how much was that- with each treatment it seems like the first month or 2 has fatigue for me. I feel like it is affecting my mood a bit also- but, that probably has too many variables to pin on xeloda.
I get my pills at Kaiser also- they won't mail them, but, have offered to same day fed x during the pandemic.
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You all give me hope. I'm just at the one year mark of my stage IV dx.
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Isharvey, I just started into my 5th year with mets to liver. In the beginning I didn't know my lifespan, so I donated so many of my clothes, household items, books and gave my special jewelry to my kids.
It seems I didn't die so quickly and now buying new stuff! On the positive, the dx forced me into getting my wishes, both legal and sentimental, in order.
What helps me is to keep planning..even a trip to the park, or outdoor porch visit, learn something new, do at least 3 things per day. And yes, laundry can count as one of the three!
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I love that advice SandiBeach! I pray I'll be here for many years yet but don't have enough well days without drs appts to commit to working full time which is so weird for me! I've worked at least 40 hours a week since I was 18 and most of the time significantly more hours so now I feel adrift!
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Thank you all for the warm welcome and the advice. You give me hope that Xeloda will work for me AND that I will get past some of these side effects. Since I am only on week 2, I don't have any HF yet....I keep waiting for it... but I am literally exhausted and still zero appetite. Last night I slept soundly for 11 hours, woke up, and quickly took a 3 hour nap. I can't get anything done! I don't think I have ever had fatigue like this so I am relieved to hear that it might clear up soon, and that I will get my appetite back.
The breathing thing is really distressing me. The SOB isn't from Denver/altitude - it's definitely from the cancer in the lung/pulmonary area although I am sure being at 5280 doesn't help. I am just hoping that Xeloda clears it up COMPLETELY. The 6 weeks on Kadcycla were terrible... I went downhill so quickly.. from doing normal things around the house and running errands to sitting in a chair with my oxygen on.
I am afraid to take it off! The pain I had before when it was in my bones was terrible, and it was scary to have it in my liver, but I think this is the worst - definitely the most debilitating. I think I took my quality of life while I was on Herceptin for granted. I did get the results of my biopsy back, and I am still ER+ and "slightly" HER2+, although on the cusp. We are going to do Foundation One testing in the next few weeks to look for a gene mutation.
I appreciate all of the HF suggestions. Is there anyone that doesn't get it? Of course my MO told me that only "some" patients get it but from what I am hearing, it's the worse SE. I am going to stock up on everything you are suggesting so I can be ready when I get it. Ugh.
I am so thankful to have this group!
XO
Andi
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Andi--good luck. 5280 is crazy. As soon as you have any H&F pain, ask for a reduction. I am only on 2,000 a day and so far it has kept me at NED for 3 years (depending on next scan).
I had Foundation One testing and it showed that my chest nodes at former Her2+++ was now Her2- Somatic (gene mutation). So that is why Kadcyla quit working and enabled me to get Xeloda.
Keep us posted!
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Denny123, I think Andi is referring to her altitude in Denver... which if you have breathing issues, can be hard on your lungs.
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Yes - sorry about the confusion! I am referring to Denver altitude because someone asked if that was contributing to SOB issues, which it really isn't. I am only on 2000 M a day too - two pills in the morning and two at night. Of course - JUST when I said I didn't think I had HF issues, I felt some burning in my heels last night, and my hands are starting to look a little red.
XO
Andi
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Welcome Andi67: This is a great place for advice. SandiBeach, thanks for sharing your experience of how you've done. I have a question for anyone on Xeloda and medicare. I have a blue cross blue shield supplemental policy with a part D policy. I'm wondering what my co pay will be. I know Ibrance could be very expensive as an oral med. Someone said that Xeloda could be covered under part B even though its an oral chemo. The specialty pharmacy is going to get back to me in a couple days but I'm anxious to find out. Has anybody been stuck with a high co pay? I'm on a supplemental plan, not an advantage plan.
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LOL...oops! Much better to get 2,000 than 5280 !!! I am in PA and we don't talk about altitude!
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hey everyone! Commenting to be added I’ve been on xeloda since dec 2nd, 2020
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