All about Xeloda
Comments
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@eleanora Sorry that you’re starting off a little bit rough with X . Agree with the others that it is best if you can hang in there at least until their first scan to see how things are going.. I also find the same thing as far as side effects go some weeks are not bad and some weeks the hfs, fatigue and nausea is more prevalent. If you don’t mind the tasre of ginger you can drink some ginger tea or get some ginger chews to help with the nausea.My nausea is very subtle and usually after an hour of taking it usually I grab a piece of spearmint gum , yogurt or some crackers that takes it away quickly. But as we said, we are all different.
My Oncologist also told me that at stage four the 7/7 has proven to be most tolerable and effective. I was on the 147 schedule when stage 3 only because at that stage, I did not need to be on it forever.With that schedule my side effects were definitely heightened than now at 7/7. i’m sure once you get settled with X and it is proven to be working your MO would consider the 7/7 schedule or dose decrease. After all the whole point of treatment at this stage is to try to give us the best quality of life and extend the time that we are on each line of treatment..
Sending strength and hugs you way❤️
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@eleanora - happy to help in any way that we can. I think I have been on X shorter than others in this group. I started on May 1 with 3000 dosage for 14/7. I made it for 3 months and told my Onc on July 24 no more for me. I told her that not being able to eat or walk or clean my house and constant fatigue/sleeping was not doable. I had excellent blood work and tumor markers but still had some progression shown on CT, bone scan and MRI. But Onc team called it all stable. ????? So 14/7 for three months with no outstanding results was a big NO MORE for me. She lowered my timing to 7/7. I hope you can convince your oncologist to change to 7/7. It is your body. Thanks @aj for the info on 14/7 verses 7/7. I sometimes wonder my onc’s attention to my needs. She did the same to me with Verzenio. Started me on highest and lowered me in a month because I was a zombie!
I have to say after just one round of my 7/7 I feel amazingly better overall. Still fatigue but a shirt nap is all I need. Still some chemo brain fog, but not as bad. And no nausea at all. Now I wait for my labs in 2 weeks and then next scans in October to see if 7/7 is viable.
@threetree and @aj sorry you are dealing with all that smoke. I have a friend in Seattle and she said right now she is not too bad. I would love to see that part of the country. She sends me pictures and my heart tells me that is where I should have lived my life. If I get leveled out on this X I would love to make a trip out there. Growing up in New England was awesome but the last 35 years in the south has worn me out.
Thank you all in this group. I think there are 5 or 6 here that I have been reading a lot from and your advice and information is invaluable. I would not know the questions to ask without this thread. You are all awesome strong women! Thank you all!
Oh if anyone can drink Kamboucha as a probiotic I strongly recommend! It’s like having a fizzy cocktail but healthy and with benefits!1 -
Me again - sorry if I left anyone out. The brain fog is settling in for Sunday. Oh well being alert and awake was really cool for awhile.
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@eleanora - Hope you're feeling OK this morning. Lots of good info here from the others. I just wish you had an oncologist who exhibited more kindness and caring than what you have described. I really agree with all that @cookie54 has said. I was going to suggest ginger tea myself. The nausea I do get is very infrequent and mild - also had same when taking fulvestrant and Verzenio. Ginger tea and saltines are my good friends in that regard. I really try to stay away from the ondansetron and only ever took it during my initial chemo (AC-T) when initially diagnosed as Stage 3. Ever since Stage 4, I've been able to rely on ginger tea and saltines for any nause problems. I don't get tea that is a ginger "blend", but solid ginger tea bags. The ones I use are from Traditional Medicinals and are only ginger and nothing else. It's a real help and comfort. Some make their own, but I have no energy whatsoever for peeling and boiling ginger root. I think the Traditional Medicianals plain ginger is the best. The same company also makes another tea called "Ginger Aid" specifically for nausea, but I have never tried it. It has additional ingredients besides ginger.
My oncologist also told me that about that recent study that shows that 7/7 is just as or more effective than 14/7, so maybe your onc hasn't heard the news?
The other thing I wanted to mention was the weather. I don't know about others, but the weather can make all these side effects much worse for me, and I am having a more difficult time in this summer heat and humidity, and am just "waiting it out" until fall begins. I'm wondering if some of the stronger reaction you seem to be having to the drug is due to weather issues. I think you said that you are somewhere in the south. That says heat and humidity to me. Another reason to maybe hang in there as long as you can to see what the fall brings. Better weather and time for scans might show some real positives, if you can wait this out a bit.
I just so want this drug to work really well for you. I'm trying to think of anything and everything that I can that might help.
Well, good Sunday morning and hope today goes much better for you!
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@cookie54 - I too find ginger tea very helpful. I haven't tried the chews yet, because they have added sugar, but they sure look inviting! I find that ginger tea and saltines can do a lot for nausea. \
I'm wondering now, if you weren't the person who told me to try "save draft" when I was complaining about losing posts. I can't remember who suggested it, but it was such a lifesaver tip for me, and I really am grateful to whoever it was that told me about it.
@marcials1 - So glad you were able to switch to 7/7. You might wait and see what the next round of scans brings. Some of these drugs take some time to show what's really going on. I think that if the medical people called what they saw "stable", that that's a good sign. I actually changed oncologists when I was on Verzenio and had only been on it for 2 months, when I got my initial scans. They showed most everything as "stable", but then there was one small new spot that showed up on my thigh bone. She was totally ready to pull the drug, saying that it wasn't working, and she wanted me to go straight to IV chemo! I told her I'd read that some (good medical sources) say that it takes 2-4 monthse to know if Verzenio is working, and others even put it at 3-5 months. My onc insisted that 2 months was plenty and that this drug was not working for me. I implored her to give it 2 more months, and she reluctantly went for one month more. I actually scheduled the next scans for 6 weeks out rather than 4 on purpose, to give myself as much time as possible. Then when the next scans were done, she was out for awhile and I had a substitute oncologist. He noted that the spot on my thigh was gone, and said everything was looing really good. Well, I switched to him, and he's been my oncologist ever since, and I got almost 3 years with the Verzenio. I think it pays to give these things a little time.
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@marcials1 - Also wanted to thank you for your comments about our smoke. It's better again today, lower temps too; mid 70's, sunny blue sky, and good air quality with no smoke. I'm definitely going for a walk, after I finish this post! Yes, I did grow up here, and am glad I did. Some other parts of the country that I've visited, while nice to see and very interesting, have always left me feeling good that I live here. I have seen many pictures of New England, however, that are extremely beautiful and that is the other place that I think sometimes, might have been nice to live. I'm also a little partial to southern California (San Diego area), because I spent a summer there, back in junior high, but even then, it was nice to come back home.
I too really like and enjoy this group and find all of the tips and advice I get here so very helpful. Far more so than what I get at the doctor's. They no the medical specifics, but they are not really much help when it comes to the "getting it" part, and all of the daily living and coping issues that go along with this. Only the others here, going through something similar, have that part of this to offer, and it's the best!
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Thank you for the kind thoughts and comments. Vomited through the night Saturday which quickly turned to "dry heaves" as I'd had nothing to eat or drink other than the small snack I took before the nighttime dose. Reached out to my internist this morning who sent me to the emergency room for IV fluids and Compazine. Came home and slept for 4 hours. Now sipping water and trying to work up to a cup of pudding. Did not take Xeloda this morning and very hesitant to take it tonight.
Messaged my MO and said that we needed to talk ASAP.
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@eleanora I am so sorry you had such a horrible night! I did skip a night dose one time when I was so sick I could not get a thing into my body. Btw have you lost a lot of weight? I lost 12 lbs in a month, and I think that is when my oncologist understood it was time for a change. Plus I said I would not do 14 days anymore. I hope your conversation with your oncologist is very soon - as in tomorrow morning. Let us know how it goes please! Thinking of you. Marcia
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@eleanora - Oh, Eleanora - what a horrible thing to endure! I am so sorry that your night went so badly. Did you get the DPYD test before you started the drug? I understand they are supposed to give it now, whereas they didn't always in the past. I read where some who have had severe reactions don't have enough of the enzyme to process the drug. I know they gave me the test, prior to prescribing. You might want to see if that could be part of your problem.
Also the drug can really mess with your electrolytes and be very dehydrating from what I understand. Some of the electrolyte problems can be from vomiting and diarrhea, but not all of them. Not being hydrated enough can lead to some of the side effects being worse also. Electrolyte imbalances can also cause some of the same side effects that the drug does, so it could be it's own issue. I had electrolyte problems about 3 weeks ago and stopped taking the pills for the last 3 days of my on week, and I had to go get some IV fluids also. I had just hit a wall. I started up again after the off week, and things have been better so far. Just some more thoughts off the top of my head.
My heart goes out to you and I'm sending more hugs!
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Thanks for the kind comments and the information. It 's helpful to hear that others occasionally skip doses. I did have the DPYD test and everything was fine. The ER nurse checked my bloodwork and all was good, including electrolytes. They prescribed Compazine for nausea. The MO told me just to use Zofran and the ER doctor said that Zofran doesn't work on this type of nausea, as it is caused by an attack on nerves in the brain. Took compazine last night, but still didn't feel like eating. Went to bed and had difficulty sleeping, I think because of anxiety about the conversation with the MO. Have been able to drink, so getting in several glasses of ice water. May have a snack and try to rest until I hear from her. @threetree you're correct about the heat. High of 95 predicted here. Fortunately, we have good air-conditioning.
Will keep you posted.
Hugs, Eleanora
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@eleanora - Glad to hear that things might have calmed down some, and that there still is hope. Here's wishing you a much improved day and the ability to find a solution so that you can have a real good long run on this drug!
(Our weather has cooled down a bit here, and the smoke has cleared for now, and I find myself feeling a lot better, and not having as much trouble with the drug. I can't imagine starting it in 95 degree temperatures with likely accompanying high humidity. So glad I started in the winter and got to see what the cooler weather brought. Summer on this drug has been notably different, and for the worse, so I really can't help continuing to wonder if that isn't some of your problem. Additionally, I remember when I had nausea from AC-T, that I much prefered the Compazine to the Zofran. It gave much better results, and given what your doctor said about the Zofran just not even being designed for the kind of nausea you have, it sounds like a much better thing. Good luck with that too! Well, I'm starting to do my "brain fog indescriminate rambling again, so I'll stop.)
A good and happy day to all!
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@eleanora I do not have relief using zofran with my nausea either. I think I have another they prescribed for me along with an antacid. Have not tried them yet. With my 7/7 schedule do far I do not have nausea. For now anyway. I live in FL and avoid going out pretty much from 10:00 am to 5:00 pm. Waiting impatiently for the first cool morning in October!
So no conversation with oncologist yet?
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@threetree @eleanora I find the water intake really difficult on this drug. I know I’ve come close to dehydrating. What now helps for me is adding a flavored electrolyte packet to 8 oz water with lots of ice and sipping on it continuously. Sometimes takes an hour or more to get it down but I do. And then I’ll get some regular water in me. I admit with the nausea it is hard to do but we need to.
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@threetree Glad your weather has improved! It sounds lovely ~ mid 70’s!? I am in the upper 90’s. When I first moved to FL in 1991 there was still a lot of old Florida left. Gulf water was crystal clear and cool not bath water like it is now in summer. I don’t go to beaches anymore anyway on all these different meds. Maybe this winter on a sunny day in the 50’s or 60’s. I did go out on the rainbow river which is clear blue from the natural springs and we jumped in the year-round 77 degree water. It was awesome! But a week later a young boy was attacked by a gator so scratching that off my list!
Yes growing up in New England was great! And I love the San Diego area also. Been there just a few times. But where you are I think is the ultimate!
I’m babbling but it is nice to talk about something other than our usual conversations. But I certainly do appreciate those conversations as well!I hope your weather is great today and you get out for a nice mind clearing walk!
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@marcials1 - That Rainbow River sounds wonderful - except for the gator threat of course. I don't think I could brave anything with something like gators around. I'm not used to the dangerous wildlife. That used to be another great thing about this area. No real dangerous animals, no poison snakes, etc. When I was kid we used to sleep outside in the summertime a lot. Just in the front yard in our sleeping bags, and it was a lot of fun. I was able to let my kids do it too. Over the years since then, we've had an influx of possums, racoons, and now coyotes, so there's no way I could see sleeping outside in the front yard anymore, much less letting kids do it. It's a real shame, because as a kid I never had to be afraid of any wild animal possibilities. I have an old friend who has lived in Anchorage now for decades, and I went up to visit her and her husband about 3 year ago. They have a nice nature trail right outside of their back yard gate, but you have to constantly be on the lookout for bears - yikes! They are all used to it, but not us "outsiders". My friend told me about coming home to big moose in her yard and things like that too. I could never live there, but she has adapted well.
Getting water down with this drug has never been a problem for me, and I'm actually surprised to hear about your issue with it. I drink a full glass of water with my pills and more full glasses with meals. I also drink a container of coconut water everyday and have a daily banana too. That seems to help with some of the electolyte issues. I also started taking magnesium after a big issue and trip to the ER for IV fluids last fall. I've also got to be the only person in the world who has been told to use more salt, not less. I have a chronic low sodium problem. Throughout all of this treatment I've had to go off and on for IV fluids. Sometimes to urgent care, sometimes to the ER, and now sometimes to the clinic. Along with a dose reduction my onc recently offered routine twice a month IV fluids in the clinic if I'd like. He says that many oncology patients do that and find it helpful. I'm debating both the dose reduction and the regular IV fluids, and can't make a decision.
Your sipping ice water all day long, sounds like a good way to get some water down, when you can't just drink it. What is it that happens when you just try to drink it regularly?
And yes, it is a nice morning here, with temps supposed to be more in the upper 70's today, but continuing with the blue sky and sunshine, so you bet, I will be out there for a walk in a little bit! Have a wonderful day. I'm glad to hear that the 7/7 schedule is working much better for you. (Wow, talk about the rambling/babbling. It's seems to be all or nothing with me this way, since I started this drug. I either can't get it together enough to post anything, or I just do this long stream of concsiousness stuff! Ugh.)
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@threetree @marcials1
Please continue to ramble and babble. It's very comforting to read. Short update. Zoom meeting with the oncologist covering for my MO, who is on vacation. Lovely woman who said things I never hear from my MO - "we need to adapt the medication to the patient" and "quality of life is paramount". She said that, in her opinion, my dose was too high and that I should stop taking it until next Monday when I have a follow-up with her. She thought I should be on 2000/day, 7/7 (I don't weigh very much). She was confident that we could find a dose that would be tolerable, so I'm feeling much calmer and more confident. This drug really does stay in your system! Even though I slept a solid 8 hours last night, I have been up since six am and my head is drooping. The lightheadedness and occasional dizziness seem a little less and I have been drinking ice water and iced tea. Nausea is still lurking, and even the yogurt I usually eat daily makes me gag. Will try to have cereal before I lay down. Threetree, I am so jealous of your weather. I'm in VA and its miserable. Hugs to you both.
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@eleanora - OK, you asked for it, here's some more babbling 😉: It sounds like like this covering oncologist was a huge help and is caring and thoughtful. I'm so glad you connected up with her, and that you'll be seeing her on Monday. It reminds me of my first oncologist who wanted to pull me off of Verzenio before waiting to see if it worked, and then the fill in onc told me he thought all was just fine, and that I could stay on the drug, which I did, for close to 3 years. I requested a switch to have him as my regular onc, and the request was granted. I think 2000 mg on a 7/7 schedule sounds like a good way to start - you could always go up a bit later too, if your body seems to adjust well. Some are on 2000 regularly and doing fine. I can see why you are feeling so much more hopeful and calm now. Yes, this drug does stay in your system, and it's one of the reasons that the off week, only offers minimal respite, if that sometimes. Glad you got a full night's sleep too - that's huge. I've found that this drug does cause occasional lightheadedness and dizziness, even though I haven't had all the nausea problems you did. It's just one of the common side effects, I think. I think you will continue to feel much better by the end of the week.
Re the weather, we got to about 80 today, and it's a little uncomfortable now, late in the afternoon, but I'll take it, since the sun is out, and the air is so clear at least for awhile. You say you're in VA. To me that does say very uncomfortable heat and humidity, and as before, I can't imagine starting this drug in that kind of weather. My parents grew up in DC (before AC), and told me stories about drenched sheets at night, and people sleeping out on porches during the summer; just unbearable humidity. My father was stationed out here during the Korean War, and when it was over, they just never went back to the east coast, although they talked about it off and on. One of the reasons they said they didn't think they could go back was the summers/humidity. I wish I could send you some of our cooler and less humid weather right now. The thing is, it isn't always like this, and even though she didn't want to go back to the DC area humidity, my mother never did adjust to all of our clouds, rain, and earlier darkness, throughout all the rest of her life, and living here. This is usually our sunniest and warmest month. The rest of the year isn't always so nice, but it's really not bad either.
Well I am really wishing you nothing but improvement through the week now, and I hope you have a fabulous appointment with this substitute oncologist!
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@threetree @eleanora hi! I was off for a few days. Actually got out of the house 2 days in a row woooohoooo! I really love just staying home but my partner had other plans for me. One day we went out for Mexican food for lunch (my stomach accepted it luckily) then to our walking trail that has an old fashioned clubhouse and a beautiful pool surrounded by trees. It is so beautiful snd shaded! It’s not typical for Florida to have a pool in the middle of the woods! We joined this park/club a year ago. We just use the walking trails and usually have the pool entirely to ourselves. It is awesome! It’s been about 100 degrees for a few days so the cool water felt great. Then yesterday we went to Gainesville a cool college town. I’m in my sixties but like seeing young people! Then went to Trader Joe’s, then an art supply store and a really funky restaurant owned by an artist. We had a small pizza and my stomach behaved again. Had a few sips of white wine. Could not drink more than the few sips so handed that to my partner in crime.
So that is my rambling for today. I almost managed to get thru both days without napping. But by late afternoon the brain fog took over and out I went. I really hate the feeling when I wake up. It’s hard to come out of the fog. Do either of you get that? Oh one more thing @threetree I used to sleep in my yard as a kid too. My sisters and friends just in our sleeping bags. Kids probably do not do that any more!
I do not know what my water issue is. It has improved a little since I went on the 7/7 schedule. I think it related to my cancer vs the Xeloda. I put electrolyte powder in my water with tons if ice now and it is better. interesting about your IV visuts. My cancer center is 2 hours away but wondering if they would prescribe with my primary care to do that. Might check it out. @threetree uou mentioned dose reduction… What would you go down to.?@eleanora so it sounds like you may have a new oncologist? I bet that might be a game changer for you!? How is your appetite? Wishing you new success!
Well I have rambled once again! Like you @threetree it is all or nothing. I may go into brain fog for awhle so thought I’d babble while I can. Thanks for your stories I love to read about people and places. Takes me away from my own thoughts for a bit!
I hope you both have cooler weather and get out and about! Take good care. Last, this message should have included a warning at the beginning!1 -
Hoping to work my way up to mashed potatoes and pasta. Twice this week I tried a Trader Joes reduced guilt mac and cheese, but was only able to eat half.
Thanks for the encouragement. You mentioned going to a higher dose "when my body adjusts". I got the impression from everyone's comments here that we don't adjust to this drug - that the side effects stay at the same intensity and that the effects I feel during the first cycle will be the effects I will always feel. Did I misunderstand? I would love to be wrong on this.
Please keep rambling. I really enjoy reading about what you are doing and seeing. I'm living vicariously through your adventures. I don't have a new MO, sadly, just one who is covering for my MO who is on vacation. Still not eating much, but have improved my water intake. Lots of ice and a straw help.
Hugs to all.
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@marcials1 - That pool in the woods sounds wonderful! I'd never thought of that, nor have I ever heard of a pool in the woods before, but it makes all the sense in the world - and to have it all to yourselves too, so nice. The walking trails also sound lovely, but I don't think I could go for a walk at 100 degrees. Your trip to Gainesville also sounds like it was nice, as college towns always have some extra fun stuff, and you can see the difference from "then and now" re time you might have spent in your youth in a college town. I can sure relate to the brain fog "spells" too. So far I have resisted napping, because I never have been a napper, and if I do take one, I invariably wake up feeling discombobulated, out of sorts, and my whole day seems to be lost. I can only imagine that reaction would be worse if I napped on Xeloda. There are times though, with this drug, that fighting a nap is extremely hard, so very rarely, I will just sit up in bed and close my eyes for about 15 minutes; staying awake and listening to the radio or something, and then that does "refresh" me a bit.
Re your water issue, I was wondering if it might not be from the "throat thing" some have mentione with Xeloda (I get it too), that makes your throat sometimes a bit tight and swollen, but then swallowing food can be a little harder too, not just water, but anything, so I think your water thing sounds kind of unique to me. For electrolytes, I usually drink coconut water and very occasionally Pedialyte. They all have different balances of the electrolytes, so sometimes it depends on what I'm trying to fix. Coconut water has more potassium, Pedialyte has more sodium and chloride. I also have a banana every day (more potassium), and put salt on everything now (for chronic low sodium). I've got to be one of the very few people out there that they have told to use more salt, not less. I noticed that Intolight was also told to salt things more for an issue she has. Sounds to me like you are doing those electrolyte packets. I tried those, but they seem to use Stevia as a sweetner, and it's just "too sweet" for me, and then the flavors are "lab created", not natural, so they did not taste good to me at all, but I would use them in a pinch if I had to. There are so many ways to do this, that can appeal to different ones of us, depending on our own personal preferences. That's a good thing.
I think it would be good if you asked your 2 hour away clinic about the possibility of getting IV fluids more regularly at a place closer to you. I'm only about 15 minutes from my clinic, so it's not a problem. I just have to get my car in the shop and fixed before I decide to do that. I don't want to ask my friend to drive me up there twice a month just for the IV's. She doesn't seem to really get the electrolyte thing anyway - she can't seem to understand why I just can't drink Gatorade or something and take care of it. I've tried to tell her this is beyond Gatorade level stuff we're talking about, but she can't wrap her head around it. I'm going to ask my onc more about it later this month. He says a lot of oncology patients do this. The last time I got the IV, it was close to the week-end and my clinic wouldn't have been open, so I asked them if I could go to a nearby urgent care (same medical system) and get it there if I went over the week-end, but it turned out that that urgent care doesn't do IV's. They just send people to the ER when they think they need them. I got some once before at a different urgent care though. I wound up being able to get up to my regular clinic though, late that same afternoon.
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@eleanora - Your very welcome for the encouragement. I only meant the possibility of a higher dose in a probably rare situation. Sorry. I don't think that the side effect you got on the higher dose are necessarily what you would get on a lower dose. I'm curious about the dose reduction idea myself, and just what kind of benefits are in it. I've read where some say they felt a lot better "overall", and then some who said they didn't feel much different, but maybe a little. Others have said that the reduction really helped with the hand/foot issue, but not so much if at all, with the fatigue. I did read where one person said she went to the lower dose and progressed fairly quickly, so went back up to the higher dose and re-stabilized. She had been doing well for several months after that when she posted (that's one of things that made me think of possibly going back up at some point). Fatigue is my biggest problem. I wouldn't think that the side effects you've had are the ones you will always have. You can get new ones, and the old ones can vary in intensity and/or go away/randomly pop back up again. I think it's well worth trying different doses to just see. I think there is some individuality here, and it's different for all of us. My first few cycles were actually easier than I'm having it these days, but I also think the summer weather is possibly making that difference. It could also just be due to drug accumulation in my system, that a break would help clear out. Who knows? Maybe the fall will bring me something different? I hope this helps and clarifies a bit. Hopefully others might have comments too regarding this issue of dosing levels and side effects. I'm also really glad to hear that you're in "recover" mode and while it might be slow, you are doing better. Three cheers for that!
This is my first day of an "off week", and I'm going to have lunch in a while with my friend (who drives and accompanies me to my appointments) and my sister-in-law. We've been talking about this for weeks now, but nobody ever really made the effort to make it happen, so in a less brain foggy times during this past week, I took the reins and called each of them and coordinated this with everybody's time preferences, health issues, etc. My sister-in-law is a big "health mess" like me too. We're really looking forwared to this. Going to a place on the sound, and we should have near 80 degrees and sun. We've got clouds this morning, but they are supposed to burn off and give us a sunny afternoon. Looking forward to the water, the view of the Olympics, the boats (cruise ships dock nearby there), and more. Just a nice day out, good company, etc. The smoke has returned a little, so the sky and mountain view might be a little hazy. It came back yesterday, but not supposed to be as bad as it was those few days ago. So far it isn't as bad; just a little hazy, and I did get the dry throat and sore eyes yesterday, that can come with it. Nothing more serious though.
Well, that's my latest ramble/babble, for what it's worth. I so hope you continue to feel better, Eleanora, and that the lower dose will help you a lot. Thinking of you with fingers crossed that the week-end goes well, and Monday brings you a whole new positive experience!
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thanks so much . That was very helpful. Hope you have a wonderful lunch.
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Hi everyone on team X. It has been so interesting and informative catching up on this thread and it is great to hear that many of you are getting out and enjoying yourselves.
Just want to chime in on the dosage conversation. I have only completed 3 cycles so am no expert but when I got a bit of fatigue on my first cycle my Onc reduced my dose and since then no problem. I sleep less than 4 hours a night and have never napped so the fatigue was a big deal to me.
Speaking with my Onc yesterday he is happy to reduce my dose again if I feel I need to and indeed increase it if required. My biggest problem now is the photosensitivity that X causes. I used to love the sun but never used sunscreen even though I am very fair skinned, but I am now however I have burnt toes because I keep forgetting to cover them 😱
I have a very good appetite unfortunately and in the 10+ years I have been MBC I have put on 22lbs which is annoying.
I was brought up in the bush in Southern Africa and us kids often slept outside. It was not unusual to find lion or leopard tracks near us in the mornings. Happy Days
Wishing you all well and hoping you Threetrees had a wonderful day out.
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@chico - So nice to hear from you. When you say your dose was reduced, was it from the 2600 (I think?) that you started with? If so, what did you reduce down to? I too really noticed the sun sensitivity, but haven't really done much about it. I started the Xeloda in January, and it was odd at that time of year to see all my freckles come out, like they do sometimes at the peak of summer. They were visible when I was a kid, and have faded over the years to the point where most people probably didn't even know I had them, but now they are really prominent and "out there" again. I should use some sun block, but just haven't gotten around to getting out and buying some. My nose gets burned on walks too, and I'm just using some Aloe for it. My eyes get affected also though, and my onc just said to use sunglasses when I'm out, but I'll need to go get prescription sunglasses, as with just regular over the counter ones, I'd have vision problems. I don't sleep a lot at night either. I wake up every hour or two to use the bathroom, but I was doing that with the Verzenio/Faslodex routine too. I was hoping it would improve with the Xeloda, but it hasn't.
Wow! Sleeping outside with lions and leopards nearby. I don't know if I could ever get used to that, but I'll bet it was a lot fun too!
I did have a nice lunch and afternoon out by the water. It was sunny and about 80 degrees, but we do have some more wildfire smoke that has come in, so the sky was a bit hazy, and I couldn't really see the mountains, that would usually be out in full form on a nice day like this. This time the smoke isn't as bad as it was last week. It's not a non-issue, but pretty easy to deal with. My sister-in-law, who was part of the lunch group has very bad heart and lung issues though, so we opted to eat inside the restaurant, rather than outside along the water. I did miss being outside a little, but her health was the top priority - and actually a big part of the reason that my friend and I made this arrangement to go get her and taker her out. She's usually cooped up at home alone all day, as her husband still works. She's really declining health wise, and that part was very sad to see. It was a real nice time out though, and a lovely summer day, with little hints (tops of trees turning yellow) that fall is just around the corner.
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Threetree I am so pleased that you had an enjoyable lunch with your SIL and hopefully it gave her a little boost.
Interesting about your freckles coming out X has some odd s/e to the skin. My toes getting sunburnt is something new to me. Also the soles of my feet have got a bit drier and harder and my finger tips too. I started X on 3000mg and am now on 2600mg.
I am at our holiday home by the sea for a few days and the weather is beautiful. We live about 2 hours away in the countryside/mountains and it has been unbearably hot there and we have also been experiencing lots of fires which is sad.
My husband has a big birthday at the end of the month. Instead of one big birthday party Ii thought it would be a good idea to have smaller parties around our 2 homes and in London. Well it seemed like a good idea but sorting out caterers and accommodating people in various places is much more difficult than one big party in one place. However I think he will enjoy smaller groups of people that he can get around and properly catchi up with.. He then flies to Philadelphia to spend time with sons and grandchildren. I will relax into Autumn if madam X allows!
I hope that all of Team X can catch a break and glide smoothly towards Christmas.2 -
@chico - Thanks very much for the info about your Xeloda dose. It's helpful as I weigh just what I might do here in the next couple of months. I glad to know that you are better on the lower dose.
My feet are dry and hard also, with red soles, but so far that's been the worst of it, and lotion seems to be keeping things fairly calm. I've never had to pay so much attention to my feet though, and I'm not used to it.
How nice that you have your home by the water. That must be wonderful in the summer. There's nothing like the sun and saltwater in the summertime, to make a person feel good. I think just the one party for your husband is a good idea. Managing and coordinating several smaller ones would be an overwhelming task, I think. You need to be able to relax and enjoy his party too! I spent some time in Philadelphia way back in 1976, and it is was a nice city to see and get to know a bit. I don't know what it's like now, but I imagine it is still a very interesting place to live and visit.
I too hope all of us here on Xeloda get a smooth run through the fall - and beyond, and don't have to deal with too many troubles for the foreseeable future. Here's to us all!
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@eleanora - i’m glad you like my rambling because sometimes I can really get into it! I’m sorry about your MO… I thought that maybe you’d be able to switch to this woman that you like that has worked so well for you. Is there any possibility of that? I hope you find something that you can enjoy eating and that your appetite comes back. Mine has come back in a big way after changing to the 7/7 schedule. I agree with you lots of ice and a straw does help with the water intake for sure! So you are on lower dose? I am curious as threetree mentioned if my progression will be coming back and I’ll have to go back on the 14/7 I hope not because I really do feel much better on the 7/7 schedule. My fatigue is still just as bad though. All other side effects have gotten much better. I guess I will find out next week.
@threetree the pool in the woods IS indeed wonderful! We did not walk that day. In fact we have not walked on the trail in over a week. And I have not been on my treadmill. So I sort of feel like a slouch but oh well! I have gained a few pounds back, but I needed to. You are right napping on X is not good. Not for me anyway! I do feel completly out of sorts when i wake up. I’m trying to avoid napping today in fact, having an iced coffee right now. And I usually drink decaf but not today!
my water intake is more of a nausea and bloating thing not a throat thing. I do like the sounds of your suggestions regarding the coconut water though. That sounds really refreshing. I’m not big on the electrolytes either, but I have one type that my sister found for me that has no fake sweeteners in it and only a little bit of sugar. I usually squeeze a lemon in it to make it less sweet. I know what you mean about people thinking that Gatorade can solve the problem. Not the case, but I guess they think they are being helpful. So I just let that go. You mentioned @intolight I have not heard from her in a long time. Is she on thus thread? Guess I will find out. About the salt and sodium issue, I am low sodium as well, but not low enough that they have told me to start using salt. I was a salt freak growing up salted everything but hotdogs. Then I quit using it for many years and I have started using it again. I am going to look into the IV visits as well. I’m glad you got out for lunch and to see your SIL. glad that weather & smoke was not terrible.
Hi @chico Intesting to hear about your dose reduction and fatigue. I used to be out in the sun quite a bit too and the light really bothers my eyes now. Also I seem to have very fuzzy vision quite a bit. Does anybody else have that? I’m not sure if it goes along with the chemo brain fog or if it’s its own separate entity. It’s always something that’s for sure! Strange about the dosage that our oncologists seem to be willing to up or down it at our requests. I may write that down on my list of questions for my visit next week. On the sleeping outside conversation - lion and leopard tracks - wow! That is really cool and also pretty scary. But as kids, we grew up in places where we were used to things the way they were. I for one am glad I grew up when I did! I read your conversation with @threetree and I have noticed lots of brown spots on my face since starting X. I thought they were freckles but they are looking different than the freckles I think I used to get. Just Brown dots randomly here and there all over my face. Oh well, it could be worse so I’ll just live with it. Also I have hair and nail issues. You are both so spot on regarding the salty air, the sand, the beach and the sea. There is nothing like it! Oh and good luck with the birthday plans! That is a task!I hope everyone is having a nice weekend. We do deserve it.
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@marcials1 Hi. I am no longer on Xeloda so I don't check this forum much anymore, but thanks for asking!. I am now on Taxol for two weeks on and one week off and it is working slowly and the liver tumors are diminishing. About the sodium issue… Funny you bring it up now. I met with my cardiologist on Wednesday to try to address my chronic tachycardia, and he put me on an added salt diet. He said the salt will help my body absorb water which will slow my tachycardia and help prevent constipation; otherwise, drinking more water will just cause you to pee the water out. It is important to absorb the water. He told me my heart is healthy otherwise. He said salt will work better than Gatorade or Colace. He is content to release me and I don't need to go back unless there is another issue. We shall see how it works.
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@marcials1 interesting that you mention the eye thing as one of my eyes has been watering and when I walk down steps my sight is not great. I wear glasses for reading otherwise my sight is usually very good. X seems to have a number of odd s/e that affect some people and not others. I was warned by my Onc about the skin issue and he also mentioned the possibility of brown patches appearing. My arms and toes certainly burn in the sun which they have never done before and also I tan quickly which is also new.
We did seem to have freer childhoods than kids now however I was a teckie and love AI etc. The world is always changing and I am grateful to have been women who had choices such as whether to marry or not or have children or not have a career or not.
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