All about Xeloda
Comments
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Leftfoot- do you take Med's for nausea or has your body become used to it
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dianarose- I haven't taken them since the 3rd cycke. Every once in awhile I won't feel great after but that's usually if I don't eat.
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LeftFootForward: it's wonderful and very encouraging to hear you have had so many years of successful treatment on X!
I am 12 days into my first round and am reeling from the side effects. I think part is my shock and upset at progression. I have had nausia and sickness but am coping with that with Zofran once or twice a day, and actually I'm surprised I'm not taking that more so feel it has the potential tosettle down. What is really bothering me is my feet. I think I might have kicked started something by walking to a restaurant on Saturday in low heels even though these are super comfy shoes. Now I've got burning making me hobble around, which is getting quite a burden trying to go about my daily life. I've been moisterising but feel I should be doing something more.
What is everyone's recommendation for this side effect?
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Hello!
Livin, I am on Xeloda and Navelbine.
Scan results tomorrow after 5 cycles 😬😬😬
Is anyone else on a combo?
Emily Louise
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Scwilly, that sounds miserable. I think you should let your onc know right away that you are having these pronounced side effects only twelve days in. Some people have a deficiency of the DPD enzyme that metabolizes this drug and your onc may want to rule that out. Also here is a link to a pretty thorough article on hfs. It discusses some ways your onc might help.
"DPD deficiency and fluorouricil"
http://www.cancerresearchuk.org/about-cancer/cance...
"Prevention and management of hand-foot syndromes"
http://www.oncologynurseadvisor.com/ce-courses/pre...
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Good info to share Leftfoot - thank you. I have asked on some other threads too, collecting info. I found online where Xeloda can and has caused heart disease including cardiomyopathy and cardiomegaly.
The new oncologist who I love already and hope he is the permanent one. I would follow him to Chicago I think, whre he is from, he is filling in two weeks in Sept and back for all of October.
Anyway he has me on a two week vacation on Xeloda, said a lower dose IF we continue. But he agrees that pushing the enlarged heart issue is not the best idea. But if Xeloda is indeed working perfectly for me I would consider a low dose, like one pills 3x a day 5 days and off 2 days. Or the like. This oncologist is very flexible and good spirited, kind, an extremely fine communicator, and THOROUGH! He came in the room completely prepared. Nothing threw him. I liked the last onc but not after the third appt. I loved my first, but he is gone and there were real mistakes along the waay, often staff issues. This one is a gem.
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Thanks ShetlandPony: your advice and info is invaluable. I've decided to complete this first round, and then discuss with MO in my appointment next week. In particular about the DPD enzyme. K will be making a big list of questions. Ive put some covers on the blisters for this evening, and been keeping my feet cool with icepacks. I will definitely need to come down in dose.
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Despite the rapid fall of my tumour markers and feeling fab, even withnormal liver function my liver tumours have doubled in size again, I am sad to leave Xoleda as it was so tollerale
I am off to see if I am a candidate for stereotactic radiosurgery and begin aromasin/afinator.
I didn't post much but checked in daily, thanks for sharing your stories.
Wishing you all the success on Xoelda, may it bring you many years of happiness
xxEmily Louise
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Hi Scwilly,
I had the same foot problems 10 days in. I gutted through the first cycle but could barely walk by the end. I'm two days into my off week my hands and feet feel better though not 100%.
Do you have any peripheral neuropathy from your Taxol treatments? I did and wonder if that sensitivity makes my hands and feet have more pain.
Take care,
Mary
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White count only point 8 today. Had to get the shot from hell and another one tomorrow. This sucks!
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Dianarose, if you're talking about Neulasta or Neupogen, sometimes taking Claritin -- just the regular one, not the "D" one; and a generic version is fine -- can help with the bone aches those cause.
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Mary: I did have a little, with my big toe feeling a little numb, a bit like having a piece of paper on it sometimes. So that's a thought and I think probably a contribution. Ive got my last does to take tonight and hoping to be all to heal up. I've wrapped my bad foot to stop it rubbing as I move around. I have an appointment next week with my MO and will have a long list of q's former ad hat I should be doing. Though I am always keen to do whatever I'm asked - I think I need a dose reduction.
Sending you healing thoughts.
Sarah
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dlb- took one when I got home. Hopefully it will help. The first time I had one I went to bed thinking this isn't so bad then woke up with every bone hurting. Tomorrow I have to have my naphostomy tubes changed out and they are giving me Fentenayl and Versaid. Those should help.
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Jumping in here today as I just started 3000 mg daily today. This seems a sizeable dose at 105 pounds. Fine with me so long as it knocks these nasty liver mets to the curb and I avoid HFS. Hate reading that so many of you are having to put up with this. Hope you find control with it and fast.
Leftfoot, gosh wouldn't I love your success with this drug.
Anyone else here have success with X as TNBC?
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I'm not TNBC, but I had a scan today and am still NED so for me X is working very well. I'm on 3,000 mg a day and taking it 7 on 7 off. My HFS is manageable but still painful. My most annoying SE is runny sticky eyes. But I will take these side-effects as it sure beats the alternative.
Good luck all.
Amy
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I haven't posted in a while, just been so down and so tired of to all. I'm upset about so many things. No more Xeloda for me, I'm done! After 3 months... Mets in Axillary nodes and Spleen stayed the same. Mediastinal nodes and Scaplua bone very slightly better. Pre-Tracheal nodes slightly worse. Tonsillar region worse. New Eschemic thickening of cheek. And the worst, lots of new multiple types of nodes scattered on both lungs. So scared! Onc wanted me to stay on X and give it another three months. I was very hesitant about this. I have been having a horrible time with the SE's. Then spent four hours at Urgent Care yesterday. Had heart palpitations and shortness of breath for a week. New lung mets are too small to cause any issues yet. X-ray and EKG looked ok. Blood work ruled out another blood clot. It's got to be the Xeloda causing this. Also, they did blood work that showed continued rise of TM's. I'm not a happy camper. So now for sure I am done, I stopped taking X, and emailed my Onc and said be ready to give me new options at my appt Tomorrow.
Also, even with Pre-Tracheal nodes worse, and new cheek issues, and Tonsillar Region uptake going from 6.1 to 7.3, and Radiologist recommending direct examination for these issues, Onc has never even looked at my throat! Even with me complaining the whole time about feeling like something is stuck in my throat, even before this scan. He told me to drink more water. 🙄 So After leaving his office last time, and reading the report, I emailed him and attached a copy of that part of the report circled, and said I want a referral with an ENT. He gave me one, and I'm waiting for that appt on the 20th. Wish I could have gotten to the ENT before my ONC appt.
I've had the same ONC since my original Dx in 2011, and I've loved him. But since my MBC Dx in May, there been some things he's said and done that have left me feeling bad. I'm feeling like he has too many patients, and doesn't remember one case from another. When he gave me the results from the scan, it was like he was reading it for the first time, and of course just skimming it, since they're so long. I think he only looks for the big things. And seems to not know a lot about the side effects, other than HFS, fatigue, nausea and diarrhea, I don't think he knows there are other SE's. And he had no idea there are websites and online groups for Breast Cancer. When I mentioned things to him I've learned online, and from you women, he was surprised. And he was surprised when he saw I had a copy of my PET scan report on my iPad, he didn't know they did that. Things like that are driving me crazy. When he was on vacay last month, and I saw his associate, I was hoping it would be someone maybe I could switch over to, but he was a young, egotistical male, didn't like him at all. Sigh. I hate all of this so much.
I'm thinking he's gonna say let's do Ibrance, because that's one of the tretaments he originally mentioned. He also mentioned Taxotere before, which I questioned at the time, because that's one of the chemo drugs I did with original BC. Why would we do it again if I had recurrence? He said it worked at the time. It was years before recurrence. I am so confused. He will let me make the final choice, I just don't know what to do. Do I try Ibrance, or an Ibrance combo? Or do IV Chemo and try and knock this sh*t back, then switch over to Ibrance or another drug to try and keep stable? I don't see many people with the mets going thru the lymph system like mine has, so haven't found anything to compare it to.
All opinions, suggestions and advice would be greatly appreciated. Thanks.
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still on Xeloda and it's working! Along with tax.. this is good stuff!!!!
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Mimi, I hope you find some good options at your appt. I have no advice but do concur with what you have already decided. I would not continue on X. Your progression seems too significant to stay on, not to mention side effects. Is there another center you could go to for a second option? Seems like it might be a good time.
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Yay for you, Ebru...it can be good stuff for many. Sad it doesn't work for others.
Am
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Hi Sarah,
I hope your feet start feeling better. I'm on day 4 of my off week and most of my pain is gone. My hands and feet are very numb. I had terrible neuropathy during taxol and it is back. But I'd rather be numb than in pain. I see my doc on Monday.
I look forward to hearing what your doc does since we are only days apart in our Xeloda experience.
Take good care of yourself and rest up.
Mary
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Mary- the nurse told me this morning that folic acid and b12 help with neuropathy. I started getting it a few weeks ago.
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Dianarose, folic acid (B9 or folate in it's natural form) is contradicted for Xeloda -- at least in supplement form. Here's one link, but there are many out there. http://www.oncologynurseadvisor.com/ask-a-pharmaci... I'm shocked your nurse didn't know this.
B12 is fine. I get B12 shots and they are immensely helpful. Also B6 is helpful for neuropathy.
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Dlb-thanks for the information. Will be mentioning that at tomorrow's
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Mary
Thanks for the shoutout. I am on my first day off, but I think having 3 days resting up and not being on my feet if I could help it has been gerat for my feet. Thank goodness for friends stepping in as DH was away. They feel less sensitive and I am looking forward to the week off then hopefully reducing my dose. My hands and mouth are trying to join in too - and I'm going to look after them too. I am nauseous today - but have trusty Zofran on hand for that.
Sarah
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thanx Amy.
Gals, with X best way to deal with with neuropathy is afternoon nap. Pill form and pink, yet a strong gun.
Hope you all benefit from it as I have so far. No dairy with x
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Hi Everyone,
I have completed one round of X (14 on, 7 off) and no side effects....yet. Fingers crossed that continues. I have a follow-up with my MO tomorrow, and I suspect he will prescribe a few more rounds, before the dreaded scan.
Stagefree, I saw your comment on no dairy with X. I have not heard this, and obviously want to do whatever I can to help this treatment be as effective as possible, for hopefully a long time. Progressed quickly on Tamoxifen. Any feedback on diet, supplements, etc. would be welcome, from anyone.
As you can see from my diagnosis, I'm a relative newcomer, but have already been fortunate to get some great advice on this thread. Would also love to hear from anyone with lung mets, who has had success on X. Hopefully I can start adding value to the group, the more knowledgeable I become. Anna
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stagefree- why no dairy. I have not read that. I like cream in my coffee and milk in my cereal. I don't drink milk t
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Mimi2kleh - I went through this with the Ibrance Femara - The cancer had already spread all through my lymph nodes - when on that combo it worked fine and rapidly for two months then stopped and of course cancer was still there and then the cancer spread more quickly which is something I have heard other women say they feel happened with them. Every body being different, we don't know what can work for us. I can say the Ibrance could back it off fast BUT you have to be monitored for your life's sake. Closely, every month. The TMs are not enough, labs are not enough. Can you get a PET CT once a month or every six weeks? None of this illogical waiting three months to see how it is doing, you know what I mean. We are the ones feeling how it is doing. But we need proof too. I will also say the Ibrance Femara combo was the worst SEs I have had, I think it was the Femara but who knows. On the I / F I did not care if I lived. Except for my dog, I wanted to be there for him every day so he would not miss me but I cared nothing about nothing and was like the flu for me, never a break, and my WBC and neut % bottomed out often. I do identify - cancer being at your throat literally - and all through the lymph system in the bronchial. And rising, it is very frightening. How did you do on Taxol and with SEs? If it was working and you went off for another then I can see revisiting, but if you were on it and had recurrence, then I know why you are skidding your heels in the ground.
Stagefree - no dairy w Xeloda? Is there a reason? Besides laden w hormones, sometimes added too? And yes, a nap helped me - also taking pills before bed and around noon so I had a decent morning, so to speak.
Deanna - I have to take folate, the MTHFR gene characteristic, my family does not absorb and we don't naturally detox, among other issues. I take this..... 5-methyltetrahydrofolate (MTHF) from Quatrefolic®, the active form by the body for DNA regulation and other fundamental metabolic processes. Folid for us is a no no and it has to be this one. What is your take on this issue and Xeloda? Do you think it is causing problems?
Everyone - read all the posts. I am on a second week off Xeloda while health issues are sorted - turned out the cardiologist said the enlarged heart and the pulmonary hypertension were a false positive and I am all right. He got me in to the pulmonologist the next day and that is being sorted out with some RXs and the prednisone has helped tremendously. Also being off Xeloda - the breathlessness has made me suffer and dodge ERs for months. I am sorting through and hope for a plan with this oncologist, he is wonderful. PET CT of brain and body on Monday. Onc Wednesday.
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I cannot get in to see the link, Deanna, but I found this http://www.umm.edu/health/medical/altmed/supplemen... and http://media.oncologynurseadvisor.com/documents/42... this which is a good one for sure.
So taking folic acid will probably increase toxicity to Xeloda. Sign! Good to know. And my list includes that I take this to keep my level at the high side of the normal range - along with the B-12, so they are neck and neck. Well that could explain why I am having to much issue with feeling so tired and sick and even breathlessness. Off to research.
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Thanks for the reply Kaayborg and Bluebird. Saw my oncologist today, he agreed with my stopping the Xeloda. He spent a lot of time with me explaining everything, and I will be starting on Ibrance & Faslodex next week. With my ER+ HER2- status, he's hoping I can get some good results, or at least stay stable. Of course he wants to go three months before doing more scans again. Ugh. Here's hoping it works better for me than X did! And of course, I'm very afraid of sides effects, since I had them so bad with X.
I had dairy all the time while on X and never had a problem with it. I think the people who get diarrhea are the ones that stay away from dairy. 😉
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