All about Xeloda
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@threetree you can get Tylenol with codeine in Canada. You have to ask for it at the pharmacy. Yes, take a fun trip to Victoria!
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@threetree Yes, I also had severe cramps at the beginning of the treatment with a drop in potassium and sodium. I took broths, bananas, dried apricots and a magnesium supplement. It improved, but I still occasionally experience joint pain in my feet, hands, and shoulders, which subsides after a 2-3 day break. And the side effects from the beginning of treatment aren't as bad anymore. Patience, patience, it's worth persevering a little, taking breaks, like naps from time to time.
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You can also probably get potassium pills. My PCP monitors all of my levels and when my potassium was low, I took those pills.
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@soldanella - Very helpful information about your experience when you first started this drug. Thank you so much. So far, I'm still trying to get more potassium just from food, as the doctor would need to prescribe any potassium pills after doing a blood test. As of now, that's scheduled for the end of the month. I'd rather get most of my nutrition from food if I can. I was low on magnesium back in November and started some pills, but cut back when things seemed like they'd gotten better. I can't remember them re-testing, but they must have. I'll have to check back in the records. I did start to feel better, but I also think I will add a little more of the magnesium supplement starting today and see if that doesn't help, along with some extra coconut water or something. You are so right about the need for patience! I will try to employ a little more of that too.😊
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@lacombattante Thank you for your well wishes 🙏
@threetree I had a few aches and pains when I first started but it's calmed down now, I take the odd Robax (Metocarbinal) when needed, better for you to take the one with tylenol rather than advil if having swelling issues. I buy the Robaxacet 750 by itself without tylenol or ibuprofen.
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@bigred62 - Thanks very much for letting me know how Xeloda has been for you. It's nice to hear that some of your side effects settled down over time. I've been wondering about side effects that might get better over time, and then those that could get worse too. This is only day 6 for me of the first cycle, so I'm going to be feeling my way through all of this for quite a while yet. So far I've had no nausea or diarrhea, but over the last two days I got hit with some very bad fatigue. It kind of comes and goes, but seems to hit out of nowhere. I'm really waiting to see if this is a side effect that might calm down after some time. If it doesn't, it could be a real problem.
So like AJ, you use Robax too. I'd just never heard of it before. Do you get it here in the States, or do you go to Canada? Sounds like it comes over the counter in Canada. I wonder if they write prescriptions for it here, alone or with the Advil or Tylenol? I really appreciate your comments and hope you're having a nice evening.
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@threetree I've been on Xeloda for 2.5 cycles so far so not that far ahead of you.
I usually get a soar throat around the 6 day mark on the first week and my gland under my left armpit gets sore close to where my tumor sits so Oncologist said that's a good thing.
I had some nerve issues the first cycle which are gone now but I do notice that my muscles tend to get a bit tired and sore after pickleball. I don't get too tired overall as my nutrifils are staying in the 2.4 range whereas when I was on Ibrance they were 0.7 super low and I was tired all the time. Everyone is different and I get regular diarrhea daily from xeloda which I handle by taking immodium quick dissolve pills and that allows me to leave the house 🤪
I found some info on robaxacet in the US I will attach. I live in Canada so it's over the counter for me.
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It’s important to note that I only take it occasionally and only at bedtime because it can make you drowsy
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@threetree Yes I live in Canada, Naramata BC Wine/Lake country and have a creek in my back yard. And live near Okanagan Lake.
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@bigred62 - Love the pictures. It looks like such a serene location. We share the Okanagan with you, but I've only been there a couple of times, as it's on the other side of the mountains. I've only ever heard about it being very nice. Thanks for posting the photos; a nice treat for us all.
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I have been on the Her2climb protocol for three years, Xeloda 14 days on / 7 days off, Tukysa, and Herceptin every three weeks.
I was wondering if anybody here is on the same combination, but Xeloda 7 days on / 7 days off, and if so, do you have Herceptin every third week or fourth week ?Meja
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@bigred62 ..beautiful pictures! I live in Pennsylvania, USA and would love to escape to Canada…. We are now having the worst snowfall in 16 years with a predicted 18 inches of snow. So I am definitely hibernating.
@meja I have been on Herceptin every 3 weeks and Xeloda at 7/7 for 8 years. It has kept me at NED at 8 years. Are you PR-?
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@meja…I have my CBC & CMP drawn every 3 weeks. Typically, one doesn't get Herceptin and Xeloda here, unless we are Her2+. I started out at Her2+++, but when I had a chest node recurrence 12 years ago, I am now Her2-. But since the combo has been working, I can stay on it.
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@threetree You will have to come visit BC one day, it's truly beautiful, peaceful and welcoming ❤️
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@bigred62 - Sounds like you're getting the same weather in Vancouver as we have, which is fairly typical. It's clear and cold down here. Lows in the twenties, highs 40 ish. I've been taking some great frosty morning walks. I've been to BC and I agree that it's lovely. I just haven't been for a long, long time. I've been to Mt. Baker too. We can't see it well from here, but if I just go 5-10 miles north on the freeway, it can be visible if it's clear.
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@eleanora - Wishing you well through the storm. Those of us here in the PNW have lucked out this time; missing the "big deal" that most are dealing with, and while cold here, it's not that cold, plus we've had lots of sunshine. The combo of the sun and clear and cold air makes all our mountains and water exceptionally lovely to look at. Virginia is really pretty too and I'm sure it won't be long before you all are back to normal too. Stay safe and warm!
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Thanks for the good wishes. Sounds like you're having beautiful weather. Hope you're enjoying it. I've been following your posts regarding Xeloda with fingers crossed that you have a strong positive reaction.
Thankful that we moved to a townhouse several years ago, so only have to clean our private driveway and front walk, as well as removing snow from the top floor deck - this involves tossing it over the wall so it falls on the driveway below! This is the first year I haven't felt strong enough to help with snow removal and I hope it's a temporary thing. Trying to distract myself with baking and knitting.
On the bright side, I've found a small discussion group of local Stage IV patients that meets twice a month and I've been invited to join. Looking forward to it, as I don't have any social media accounts, so don't do Facebook groups. My conversations on this site are my only source for hearing others' stories, sharing my own and learning valuable tips and information. While I treasure all of my sisters here (you included 💞) and I'm incredibly grateful for all you have taught me, it will be nice to connect in person.
Hugs,
Eleanora
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I hope that everyone is doing well. I am in PA and have about 18 inches of snow. I am trapped in here, but I don't have to go anywhere.
Everything is closed down here…stores, post offices, most medical offices, etc.
@Elenora … When I was first dx'd with BC in 2002, the internet was brand-new and I had nowhere to go for communication. But I did join a BC support group at my local hospital. I ended up running the group, until it was closed down right before Covid and also by a doctor who wanted to run her own group…(sadly). And through the years, as we met monthly, I became very good friends with all of the members. It was so nice to be able to get together with good friends to share our experiences. And I was on chemo much longer than the rest of the ladies, who were mostly earlier stages.
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@eleanora - Yes, we've lucked out and have had about a week of real nice sunny weather, but it's going away. It's been clouding up this morning and our usual rain is scheduled to return mid week. It's been great though. If I was in your situation with all the snow and cold, I'd much rather spend my time hunkering down and knitting and baking too. Sounds much better than doing snow removal. I too don't have social media accounts, and this board is all I do that even comes close. I had Facebook, but someone hacked it and messed it all up, and I haven't known how to fix it, nor have I bothered to just start a new account, so I too just stick with this. If I knew of a local group that met regularly someplace I could just walk to, I might really like it, but I don't want to have to drive or anything. I'm glad you found an in person group that will work for you. I think they could offer some real benefits. Everyone on here does mean a lot to me too, as they are pretty much my only source of personal stories and support.
I also want to thank you for the nice thoughts and comments about my starting Xeloda and wishing me well. I'm just getting going with it, so very, very concerned about just how effective it will be and for how long. From what I understand there isn't a whole lot out there for me now, if this doesn't work well and for a good long time.
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