All about Xeloda
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Wishing you great news on your scans. I have mine the end of august…………
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I just read my scan report. Only took one day. I am not sure how I feel about the automatic posting as I am used to my oncologist softening the blow, but it is what it is. The scan shows progression in multiple areas with some slow growth but a couple of new spots in my liver and one on my spine. I won't see my oncologist until next week so I don't have her interpretation on things yet but it probably means a change for me. Last time we discussed moving to IV chemo for the next step. I have never had this before so it will be a lot for me to take in. For now, I am just trying to breathe. I have to attend a funeral tomorrow and another on Thursday so I am praying I can keep things together.
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IntoLight----Sorry about the report. I wish that I could see mine online since I like to read it so that I can question my onc when I see him. I am, however, able to get the report right before I see him.
I have seen many posts on support groups about the hesitancy to go to IV chemo. But I have been on IV for over 19 years and can honestly say that none of them have been as hard for me as Xeloda has been.
Gemzar & Herceptin cleared out my big and numerous liver mets in only 9 months. That was back in 2004 and my liver has been clear ever since. That treatment was soooo easy.
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Intolight, I am so sorry to hear your scan showed progression. Although it sounds minimal, it always comes as a shock. I am in the same place as you, with IV chemo (which I have not had before and am terrified of starting) my likely next tx. During my last mo visit I brought this topic up, and after listing all the possible IV chemo's I might have, she also mentioned we could try cycling back to an AI. I think this is a relatively new idea in MBC tx, but it might be something to ask your mo about. And Denny's words are encouraging, perhaps IV chemo won't be as bad as we anticipate.
Funerals are rough, and back to back funerals sounds like an emotional grindstone. I hope it will help you to know that your presence there will be a comfort to those who are grieving. May your faith help you through this next week. Wishing you strength and perseverance and sending a big hug.
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Denny, I have been thinking about your IV history a lot even before you posted today. I have so many questions, but you are encouraging. Thank you.
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IntoLight,
I am so sorry to hear about your scan reports. I hope that you and your MO can come up with a treatment plan that is effective and not too hard on you.
I am now in cycle two of xeloda, and for me, it's not that easy of a drug as I've mentioned before. Granted, I am combining it with neratinib, so I've got side effects of two heavy hitters, but the xeloda in particular seems not to agree with my system. It absolutely has killed my appetite no matter what anti nausea drug I have used.
I think you've had an easier time on xeloda from what I remember, but as Denny said, there are some gentle IV chemos that are awfully effective as well. Thinking of you as you make this change.
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Wow everyone...my onc just called to assure me the scan shows growth that is so slight, she is not overly concerned. She knows the radiologist and said she is one who tends to report on the cautious side. My onc wants me to stay onXeloda for three more months which is a hugh relief to me. I am crying more with this news than the actual scan report that mentioned progression. She does want to take an MRI of the inguinal area as she said this is new, but really thinks this will show nothing much either. She thinks I can buy more time on Xeloda with keeping everything slow. She also says since medicine has moved to constant scans we tend to switch treatments too quickly. I am so good with this thinking. I have gone through this before and am trusting God to keep the cancer contained for now. I have to run...more later. Thank you for your prayers.
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That's a relief, IntoLight, that the scan results are not as concerning as you thought.
I wanted to add to the discussion of IV chemo. So y'all will know where I'm coming from, I have been on three infused chemos and one pill chemo (xeloda), two pill anti-estrogens and one injected anti-estrogen, three pill targeted therapies and one infused targeted therapy. Whatever these therapies are called, whatever type they are, they have their side effects, and they have their method of administration. I do not think the method of administration -- pill, IV, injection -- or the type of therapy -- cytotoxic chemo, hormonal, targeted -- necessarily correlates with the severity of the side effects. Or with efficacy for that matter. It is so individual. My point is, I find it helpful to think of IV chemo as just another drug that happens to be given via a vein. Of course the other part of the fear is that IV chemo may be given when other (*supposedly* gentler) treatments have failed. But again, I find it helpful to just group all treatments together in one quiver and not think that the order of them means so much. Because for me I started with IV chemo, then went to hormonal plus targeted, then more chemo both pill and IV, then hormonal plus targeted...
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IntoLight-great news! I was on IV Kadcyla for 4 years and although my chest node recurrence kept getting larger, I stayed on it as long as possible.
Please feel free to ask any questions that you have!
I started out 19 1/2 years ago on IV and didn't get pills (besides a clinical trial of Poziotinib) until I started on Xeloda 3 1/2 years ago. And I am still on IV Herceptin.
So I can vouch for a lot of the IV chemos available.
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Shetland, that's so comforting! Thank you. I have not been on infused chemo yet and have, and still do, dread it. I particularly dislike the idea of being tied down to a tight schedule such that it would be hard for us to travel far on the boat in the summers. We intend to go from VA to VT late July through late August, and if I had to get infusions weekly, it just wouldn't be possible. I realize that this is a personal problem, but it's a real lifestyle change, and I do dread that coming at some point.
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I can see that would be a concern. If you find yourself in that position, maybe you could work out a scheduling solution with your onc. I wonder it might be possible to get an infusion at a hospital near your travel destination? I traveled out of state for a week of my month on daily IV antibiotics. I had to learn how to do it myself if I wanted to go. (My port was accessed and taped.) My onc gave me clinic notes and the name of her colleague in that state, to call in case I had anything happen. Also an official letter in case TSA was concerned about my port or all the supplies I was bringing. I know we can't self-administer chemo, but my point is that I believe that creative problem-solving and living our lives with all the happiness we can, go hand in hand.
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Joyner....all of my IV chemos have been every 3 weeks. And it is usually possible to skip a week or two, if needed. I have had to do that.
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Denny, thanks. My onc specified that this taxane would be weekly, and she was loathe to tie me down with that. I asked if I could get the infusion closer to home (I live 75 miles from my onc practice), and she said "no", because she isn't affiliated with the hospital near me. Bummer. When the time comes, I'll ask her about the timing. Thanks for the imput!
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Olma-thanks for the offer. I have enough right now, but they are what I use every night with Aquaphor! Hopefuly someone else needs them.
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Joyner...typically Taxanes are given every 3 weeks, but maybe she wants to do weekly to lessen the load. I had Taxotere every 3 weeks and it was very easy.
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Got the results on my scan. Everything looks good except the lungs. My liver was all clear. There are two nodes that got larger on the lungs and some new spots there, too. I asked my oncologist what he would do if it was his cancer. He said he would probably do the IV chemo. He said lots of things but I don't remember any of it. I'm going back in two weeks, so I'll have a list of written questions and I'll take a notepad and pen with me. I'm taking two weeks to decide, and I'll do another cycle of X in the meantime. That was one of the options: keep taking xeloda and "fail slowly." That's his expression but it sounds like a good descriptor for my life.
I left and wondered who I would call to cry to. I couldn't think of anyone, except the board. Everyone else, I have to explain things to. Sometimes I don't want to explain anything.
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NineTwelve--we are here for you!! Hugs!
Let us know the possible chemo choices since some of them are so easy! I am on my 5th round of treatment, so I have had a lot of them.
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Thank you, Denny. I thought about your post where you noted that several of us stage 4 de novos haven't had the IV experience yet and were dreading it. I'm glad you made that post, because it was comforting. It's not like I'm going to uncharted country.
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NineTwelve....I am here for you. I have been an ACS Reach to Recovery volunteer counselor, coordinator and trainer for over 19 years.
So I have helped 100's of ladies through the years with their treatments...mostly Stage 4. So if I haven't had experience with a certain chemo, I have communicated with ladies who have.
I ma also on the patient advocacy counsel of my chemo center and work with oncologists.
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9 12, I am here for you, too. Hang in there. I had iv chemo at the beginning. I had Covid in January. Covid was far worse. Many times the apprehension of something like this ahead of time is far worse than the actuality of it. Once you get started, you realize it’s doable.
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So I am on my second cycle of very low dose xeloda. Last week I also started neratinib.
Once I started in cycle 2 with xeloda, my nausea has returned in a big way. I have a mini CVS in dining room with anti nausea drugs, but none of them seems to be helping.
Has anyone else had this kind of a reaction to xeloda? I may have posted about this before, but since it's cycle 2, it's become very clear to me that this is the xeloda acting. The nausea is causing me not to eat -- either I just can't do it, or, if I can it's likely cereal bc I know that won't set off my stomach.
Thanks for any ideas.
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JenBev- I am just passing through the Xeloda thread as I was in it for so long and try to keep up with the people I know who are on the drug.
You are on a very hard combo of drugs. Neratinib was not kind to my GI trac. I am sorry you aren’t feeling well.
As I am passing through forgive me if I am asking questions you have already answered. Have you talked with your provider about lowering your dose of Xeloda? I had to decrease mine early on but after I lowered it, I was able to stay on it for 5 years.
Do you take it with food? It doesn’t have to be much but even a piece of toast helped me.
I also found tart lemonade and ginger ale helped me a bunch. Reminded me of when I was pregnant. I don’t know why but these tastes made my nausea go away.
also, with Xeloda I found the first few cycles to be rough ( got a rash, had hand foot, GI issues). After a slight reduction and another cycle my body adjusted and I could tolerate it well.I will say that the Neratinib was the bigger culprit in making me not feel well. How long have you been on it? This drug took me longer to adjust to and I had to take more antimedics to tolerate it.
I am so sorry you don’t feel well. Talk with your provider to see if there is anything else you can do other than what you already are doing.
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Hi, LFF,
To answer your questions, I just started both drugs within the past couple of weeks.
I just started on cycle 2 of the xeloda and just like cycle 1, it's kicking my butt so far with nausea. It feels like the pill is just sitting there when I take it. I am already on a very low dose -- 1000 mg per day.
I did not have the extreme nausea with neratinib on the week off from xeloda, so I'm guessing that's the culprit.
I have talked with my MO about this, but she's actually out of town right now, so I've been sending daily updates to the DPharm for my breast center, and she is monitoring me.
Not a lot of fun here.
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Into the light- great news. I just started getting my PETs on my portal also and TMs. I like it so far- gives me a chance to formulate questions. I do feel very nervous as I open the results. So glad you can stay on Xeloda.
Joyner L-that is my biggest worry also- being tied down when I love to travel- I am assuming we will be able to do that again.BevJen- so sorry that side effects are miserable again. You are on a low dose- are you 14/7 or 7/7? I think the 7/7 could make a difference in your side effects. I had a friend who had to combine several of the different nausea drugs- I wonder if the pharmD or MO can help you with that.
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Myshadow: How were you able to get into the Leronlimab trial? From what I saw of the criteria, you have to be triple negative. Do they make exceptions on a compassionate basis?
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Hello team Xeloda,
I’m not tolerating this drug well, heart palpitations being one symptom. I’m on a very low dose 2000 per day ( 1000 morning and 1000 evening) This is monotherapy so no other drug. Can a low dose like this still work on liver mets? For my height and weight I should be on about 4000 per day.
So my question is has anybody had this work at such a low dose?
Thank you for reading
Xx
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Mermaid, I'm on 2000 mg per day, 1,000 in the morning and 1,000 at night, 7/7. I have been stable for 31 months and counting.
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Denny, I'm a total novice at the idea of infusion chemo. I don't know why my onc told me it would be weekly, but she was pretty clear about that. On a different question, did you experience permanent hair loss from taxotere? I have read about that online. And about what appear to be ongoing lawsuits.
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Joyner-I have never heard of hair loss on Taxotere. I was bald when I started on it and my hair grew back in quickly.
Will you be on an additional chemo besides a Taxane? Sometimes that is why they might make it weekly.
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