All about Xeloda
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Goldie, we have a 32-foot motorhome and it is completely self-contained. We are however contemplating adding solar panels at this point. There are a lot of equestrian campgrounds that do not allow you to run generators at all. So we're thinking that we need to add some solar panels it's a keep from running out of propane when were gone for a long periods of time. We do not take an extra vehicle because when we first started with the motorhome we were going camping mostly in our state and with a group of friends. Being with these friends when we wanted to take off and go somewhere we would just jump in one of their vehicles and it wasn't an issue. However, those friends have slowly drifted off to completely out of horses, more into their grandkids, only doing day rides now and so on and so on. So now it has become an issue. However, every time we look at the living quarters horse trailers we are shocked at how expensive they have gotten and we know that we are going to take a hit on our motorhome and we're just kind of thinking that we could stick with the motorhome and hook the horse trailer up to our pickup truck and drive it also. No, it's not a great long-term solution but for right now it's going to have to work for us. We do love our motorhome and think it's wonderful that we can go camping with or without the horses with our motorhome. In comparison to our living quarters horse trailers, well there is no comparison. We are going to take this winter and go camp all around our state, because we both need to get back into good riding condition and so do our horses. Then in the spring I think we're going to relook at everything and decide do we want to go ahead and make the the change or not. It's a tough one when everything that you currently have is paid for and you know when you go to sell it you're not going to get what you paid for it and you're going to take a hit. And then when you buy the new thing if you ever need to go sell it, you are going to take a hit again. Either way, we plan on going camping with the horses. You are right, it is very different camping with horses than just people. Not only do you have to load up all the supplies for yourselves, you have to load up all the supplies for your horses two! So it really requires twice as much work. It is completely worth it! Especially since I find I can no longer hike as much or as long as I used to be able to, and now I get to use the horses legs to go out and see even more. For me that is awesome! plus I get to go into places that I never would have gotten to see had I been traveling on foot!
Karen, it was good meeting you too yesterday. I don't feel like we upset the other ladies at all and the young woman who is sitting next to me told me how grateful she was to hear from us how much we loved our doctor. She also was grateful that I answered her many questions. I'm going to go again next month because the speaker is a doctor I know and I think it'll be very interesting. I'm also hoping that I will see the young lady again and know how her treatments are going and if she liked our doctor as much as we do, and I am hoping that you will come to. Susan, the nurse who runs the group said that she thought there would be no problem with us being there. In fact she thought it was a great idea. Hopefully you will be able to come also as dr. Ames is a really good guy and I think might have a lot to offer.
I'm sorry this turned out to be a novel, to everyone else I'm glad to see those of you that are doing well and sorry to hear those of you that are not.
Hugs and prayers,
Claudia
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Claudia I don't think you wrote a novel. Sometimes it's nice to share "normal" every day life stories, instead of always talking cancer. You didn't say where you live, and if you don't want to share that, I understand. I do have some contacts in Moab, people with horses. I might be able to help to find you somewhere to keep the horses while you camp and you can go get them when ready to ride.
Was your get together in Maine? If so, where abouts?
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Hi Goldie, I live in Florida. We are interested in taking our horses all over camping. So far we have camped in Florida, Georgia, and Tennessee. We would like to expand our Horizons and head out west with the horses. It is very thoughtful of you to offer assistance with our trip to Moab.
We have not had our fault trip yet we are leaving next Thursday. We are going to be getting together in Portsmouth New Hampshire. We will spend several days in New Hampshire and then head over to Vermont, and then start our journey back south stopping again to visit our grandkids. Then Homeward Bound. I believe if we have a good time, and fall in love with how beautiful it is during the fall up there, we might make it something of an annual trip.
I'm sure I will be posting lots of pictures of our trip as it evolves. I sure am sorry to hear that your tumor markers are steadily going up, that just stinks. Hopefully, your Mo will be able to get a handle on it.
Hugs and prayers,
Claudia
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Yay! Xeloda with Herceptin is still keeping me in NED! A clinical trial of Poziotinib got rid of my chest nodes in only 8 days. And I then started on Xeloda & Herceptin the end of Feb. I am a 16 3/4 year survivor of MBC de novo.
I am only on 2,000 mg a day, one week on and one week off. I have been soaking my feet in Epsom Salt for 15 minutes every day and that really helps my big toe pains.
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Denny123, that is so wonderful! Congratulations! Very happy for you.
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I think reaching out is good (I didn't do that the 1st time). I will plan to be there, it's on my calendar. My mind now is on "living with cancer". We have 2 fabulous cruises planned next spring. Crossing the Atlantic on Celebrity Edge April 28th until May 13th. Then hanging around somewhere in Europe until May 25th/ when we leave Rome on the Edge for a Greek Island cruise. How's that for looking to the future.
Karen
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Wow! Denny 123. It's ladies like you that give ladies like me hope. I was stage 2 Aug 2013 and stage 4 November 2017. I love this site. Really because it's less about cancer and more about hope.
Thank you,
Karen
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Denny that is fantastic news! Congratulations and thanks for giving all of us hope for a long future.
Karen, good for you making plans for the spring. Sounds like a wonderful adventure and something to look forward to, which I think is essential for us. I am looking forward to a thanksgiving trip to Washington DC and possibly planning something for the spring as well. Let's live our lives to the fullest.
Donna
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Denny, that is more than amazing. Wishing you a long run on Madame X.
Kim, good for you in planning for some future trips. I know it can be hard, as we wait for the ball to drop on us. I just wish I didn't think about that and just live life. I try, but not always easy.
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What's your input on oral vitamins sprays e. G vitamin D and vitamin b 12 sprays for stage 4 MBC patients, as tablets cause disturbance in stomach??? Are they safe to use?
TIA
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I read it on here, I think, about Epsom salt foot soaks. My worst problem was the bad pain in my big toenails. I now soak my feet in Epsom Salt for 15 minutes a day and the pain has been gone for a week, so far. Hope it continues. My nails have lifted and are black, but still attached.
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Hi Everyone,
I know everyone is different, but i need whatever input you experts have to give. I've been on Madam X about 8 weeks now. 1 week on, 1 week off, 2X a day 1500mgs each.. So I started my 5th cycle on Saturday. Minimal SEs. Before I started my CA15 had gone up to 169. Then it went to 214 which is when i started x. 4 weeks ago it was 210 (woo hoo) it came down a little. Today it's at 215. So essentially where i started. Working, not working. Too soon to know. I'm not seeing Dr. tomorrow so probably a Fellow. Don't have a lot of faith in them. Just would like to hear your experiences.
Thanks,
Karen
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Denny, I will try the Epsom salt, altho I am afraid. Especially since I have been on X for over 3 years and my SE's are probably worse than someone who has not been on as long. The bottoms of my feet are so dry, cracked and splitting, I'm afraid the salt will draw out whatever moisture might be there. But I am willing to try anything! BTW, you are my hero!
Karen, I would give it a little more time. What about trying 2 weeks on, 1 week off? I tried the 7/7 and it did not work for me. There are lots of different dosages you can try. Are you feeling ok? Don't let the doctors tell you what to do. If you are comfortable in trying a different dosage, then do it. I did it a lot and my onc was ok with me doing it. My ship, and I'm the captain!
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karen- I will add that you might have s new normal for tumor markets. And that my values bounce around from cycle to cycle. I would wait. If there is an upward trend on 3 consecutive draws I might ask if I need to be worried. Until then, I wouldn’t worry.
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Hi Karen, I agree with the others. Give it a little more time.
Hopefully you will be seeing the female fellow, she rocks! The guy is ok but not good at thinking outside the box.
My nausea has been crazy this cycle. I have gotten extremely motion sensitive. Its ridiculous!
Hugs and prayers,
Claudia
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Thanks ladies. I was just so optimistic because it came down a little last month. I have these little twinges in my abdomen once in awhile. My mets are "wherever". My next scan is scheduled for end of Oct so i guess just wait and see. And I know mild SEs do not mean it isn't working. Maybe if it isn't doing anything the number would have really gone up. This stuff could drive you crazy.
kk
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Karen, for almost 17 years, my CA 27-29 has never been accurate. We go by my scans.
Goldie-the Epsom Salt softens up my feet, just like when I take my shower. I lotion up afterwards. In fact, it seems like they are peeling less now.
Thanks for the hero shout-out!
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Karen, did you see the PBS special about Mayo last night ? It was quite fascinating . If you missed it last night it is on again tonight . Well worth watching
Everyone, you should watch this special because the history behind Mayo start is incredibly fascinating! It will be on PBS sometime tonight I forget what time but you should watch it or at least record it. Mydh, who hates all things Medical, was absolutely shocked by what he saw and so impressed, as was I!
Claudia
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I saw a lot of it, but i dozed off couple of times. We recorded it and I'm going to watch it again. What an amazing place and philosophy. I would say that we usually experience what the Mayo brothers intended. I think Dr. Moreno really personifies their philosophy. I'm headed up to VA to put my house on the market. It's a mess and I think even an old "Realtor" is going to have a challenge. Also, I saw a PA yesterday, P. Boyer. She's pretty sharp and really goes into your blood work in detail. Bilirubin is a little high and need to watch that. The TM we just wait and see next month. But the end of Oct is when i get pet scan and ct scan. I just so want X to work because i feel so good, so normal.
Karen
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I saw a lot of it, but i dozed off couple of times. We recorded it and I'm going to watch it again. What an amazing place and philosophy. I would say that we usually experience what the Mayo brothers intended. I think Dr. Moreno really personifies their philosophy. I'm headed up to VA to put my house on the market. It's a mess and I think even an old "Realtor" is going to have a challenge. Also, I saw a PA yesterday, P. Boyer. She's pretty sharp and really goes into your blood work in detail. Bilirubin is a little high and need to watch that. The TM we just wait and see next month. But the end of Oct is when i get pet scan and ct scan. I just so want X to work because i feel so good, so normal.
Karen
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Hi lovelies:)
Just wanted to know about my mom...
Third cycle, 14/7, 1000 my am/pm...
Mets bone /lungs/liver...
On XELODA not a single been taken yet.. She is having burning GI now.. Should this be counted as SE... On the other hand nausea, loss of appetite, fatigue and time to time diareah is off and on...
Any home remedies... Taking anti acids 40mg day night.. Plz help ladies
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sanJF- adj her dr for pets rriptuin for the acid reflux. Xeloda is known to cause this. Then make sure you take said prescription apart from the Xeloda ( like an hour before or after), as it can mess up the effectively of Xeloda.
It was a game changer for me.
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Dear leftfoot
What do mean by this "adj her dr for pets rriptuin" kindly explain...
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I believe she meant to type “Ask her doctor for a prescription”.
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thanks Shetland. I need to check myself before sending. Ugh. Too much going on in my life now.
So appreciate the help.
Sorry for the confusion.
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Thanks shetland
Love and hugs for you dear leftfoot forward.... This too shall pass!
Just hope and pray!
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Claudia you mentioned that the nausea was bad for you this cycle. Me too. And in the 4 months I have been on X, I have had zero nausea. So question: I recently changed pharmacies because of insurance (I am now on Medicare) and the pills are different color, obviously from a different drug manufacturer. Have any of you experienced different or more severe SEs when changing to a different manufacturer? Or maybe it’s just the nature of X that the SEs change and come and go as time goes on?
Donna
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My MO calls it the "stacking affect", says SE's may increase over time. I started to have more GI symptoms and worse HFS after about 5 mos. of Xeloda. My MO allowed me to reduce my dose to 3000 daily and take an extra week off, which has helped tremendously.
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A friend from UK needs an opinion please help me to help him out...
Hi Sana. Sorry I've not bin in touch. Had a lot on.
They have only offered taxol or niverlabine, or a clinical trial to see if her blood has a mutation but the clinical trail could take weeks before we get blood results back.
They have taken her off the xelado as they said, based on the scan results that it had not done a good enough job.
They are advising her to go for taxol next but would only have a 30% chance of working, and even if it did it would only do so for a few months. Side effects include full hair loss and she would have to go to the hospital all day once a week for 12 weeks. 😨
The other option is the niverabline, which is an oral tablet, and although there is less chance of hair loss, they said they couldn't guarantee that she wouldn't loose her hair, the side effects include more nausea and would be more severe and they don't seem to think this drug would be as effective.
Meanwhile mum seems to be loosing the use of her legs, she has 3 blood clots and she has been bed bound for a week, except from me occasionally getting her to try to walk to the bathroom.
She has until Wednesday to decide what to do.???? 😓
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SanJF-
It would be helpful to know what kind of cancer your friend's mom has-- is it ductal or lobular? ER+ or ER-? It seems like she must be HER2- since there isn't any mention of an anti-HER2 med on the list of possible next meds. Also, what meds has she been on prior to Xeloda? How long did they each last? If she is ER+, how long has it been since she was on an anti-estrogen medication? If she is ER+ and it has been 3+ years since she was on an anti-estrogen medication she could consider trying one of them again.
Would trying either of those suggested medications preclude her from trying to get into the clinical trial in the future? Can she do the lab work or other testing necessary to see if she qualifies while she is on one of those medications? Or be on those meds while she waits for the test results?
Your friend must be a kind and loving son to be reaching out to others and looking for ways to support his mom. I wish them both many days together.
Elizabeth
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