All about Xeloda
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Thanks and yes I’ll check in. Good for you IntoLight! And yes we do have an capsule option for Vinorelabine- my Onc knows full well how much I’m trying to avoid IV so it’ll be interesting to see if I have to argue my case. My concern is that I can’t find much about how effective this drug is…..is it just a ‘holding’ drug for those nearing the end of options? Also my worst spinal met is T11 and there was concern for cord compression….not the case just now but a worry.
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good luck Karen. Hope it works. Have not heard of Vineo. Have you HD targeted therapy for HER2+
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jOynerl! Omg despite taking 2 ativans, they had a hard time putting tube in. For some reason there was resistance so I ended up vomited all over the place. I got so nervous. Nothing new for me but they were “okaaaaaay. When u said u were a little nervous, you really ARE nervous!” Well nf! So they aborted mission and then the Ativan kicked in and I barely remember what happened! Waiting for another phone call. So disappointed
d
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Well.... pardon me, ladies... but SHIT!!! Dancing, I wish I were there to give you a hug. It's crappy to begin with leaning over that pillow with your back exposed, but then to have resistance and to have that feeling make you throw up is beyond awful. Can they do something different next time?? Maybe knock You out??
Happy Easter, anyway...
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Dancingdiva - What a terrible experience. 😞 I hope you are at least feeling better now that it’s over. Hugs.
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Rk I don’t feel feel better cuz they didn’t end up doing anything. I don’t know if it’s because I have liquid in there but I have never felt this bad with any chemo I had or Ibrance. I feel nauseous ALL THE TIME. Burping all the time. Maybe I’m depressed. I’ve had 3 days off and I’ve spent them sleeping and watching Netflix. I even watched reality tv Love is Blind which I would NEVER do lol!!
Joyner, are you supposed to feel them pushing the tube in or does it just slip in? I felt like they were separating my skin layers to make it enter. It didn’t hurt. My body just wanted to vomit I guess and the nausea already being there doesn’t help.
D
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I started Xeloda a little over a year ago. At that time CA15.3 was over1200 and CT showed numerous liver lesions. After starting X, TMs dropped dramatically, now at 25 (normal!) and liver lesions are gone, but PET is showing progression to bone in multiple areas. Right femur is the worst with SUV of 12.
So I am in a bit of a conundrum. Do I continue on Xeloda which is keeping liver mets at bay and just live with bone mets? I have not yet had IV chemo and that would be my next tx, but I fear and loathe that next step down the road so much I am wondering if there might be something I could add to X that might at least slow the bone progression. Pathology on bone mets showed HER2/neu at 2.4 (FISH HER2-). So far bone mets are not causing pain and as far as I know not a risk of fracture.
Anyone else in this situation? What did you or would you do? Thanks for any input/ideas.
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Jobur,
Madame X treated me well for a year (close to NEAD) before progression to liver and bones. I am meeting with my oncologist today to start Verzenio--my last oral med before chemo. She said she has had good results with V with those who did well on Ibrance previously. We shall see. She is also a new oncologist for me...
My TMs are not reliable so I can't help you there. They have always been low ever when my scans lit up like a Christmas tree. Xeloda did help with liver mets, but they have returned. My bone mets showed up in my spine (plus other areas) and I now have a dull backache most of the time. I can't advise you, but just wanted you to know my story. I'll let you know how it goes.
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Intolight,
Thank you for responding and sharing your experience.
My TMs have always been normal when I have bone only disease, even when, as you say, my spine lit up like a Christmas tree, but they have been a pretty reliable indicator of liver mets. Interesting that your new mo is suggesting Verzenio. I was under the impression that once Ibrance failed Verzino was not an option, so good to know it might be worth a shot. I did well on Ibrance too.
Hope V will be good to you, get rid of that constant back ache,and unplug that Christmas tree! By the way, I love your screen name, such beautiful, hopeful words. Thanks again for sharing.
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Dancing, sorry for the late reply. Re the thoracentesis in my left lung: The nurses/techs told me that I'd get a "big stick" of lidocaine at the lower left of my back. I was sitting up and leaning forward over a pillow during the procedure. It was a typical big stick, which I initially felt at the site of the stick (a burn at the lower left rib cage) and then, oddly, it felt as though they next/immediately stuck me in the front left with the same sort of stick, which would have been physically impossible, as I was leaning on the pillow. I told them, and they said it was "radiated pain" from the back stick, as I recall. Next I felt the same pain in the top of my of my left shoulder...not horrible but weird. They described it as the same thing: radiated from the nerves passing along the pain to a different spot. At some point my left arm started jumping vertically up and down, and they said that it was a result of the tube moving around in my lung and touching nerves, or at least, that was my understanding of what they said. It didn't take long: maybe 5 minutes from first stick to conclusion?? I would describe the experience as vaguely unpleasant but very do-able. I hope that you've had success and gotten it done without the vomiting!!
xox
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Are we back for real???
Joyner-that does not sound like a lot of fun....
Hope everyone is doing okay! I got my second Pfizer booster on May 5. The hospital that gave me the shot in my butt didn't have clinic hours anymore, but my local hospital system does have a Covid clinic. So I went there and it was weird to walk into a room with no one in it except for a nurse.
It is finally nice here in PA--in the 70's all week. So I have been doing a ton of yard work and planting my container garden on my back porch railing. Also planting flowers. Spring is my favorite time of year.
Denise
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Lynn - I hope the thoracentesis provided relief and you are doing well.
Denny - I'm happy you got your second booster okay. One of Liz's passions was gardening and she loved spring too! My goal is to maintain her garden and keep it up to her standards. I miss Liz sooo much...
Praying all is well with everyone else!
Grant.
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So sorry, Grant. But she will be so happy that you are keeping up with her gardening as a special tribute. I lost my 38 year old daughter 5 years ago. She always talked about getting butterfly bushes. So I did get 2 of them and when I see t he butterflies on them, I know that it makes her happy.
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Joyner, I’m going back this Wednesday and they are finally going back in. I think they are trying to do a biopsy as well so it’s being done in another department. This time I am taking the 2 ativans an hour before so I feel a little gone. I’m dreading this.
I can’t believe ur arm starting going up and down!!
I’m feeling better on X. Nausea is very tiny. I am tired though. So glad the way I felt the first week did not last.
DD
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Oh, precious Grant....it's so good to see your name. I'm out gardening, too. I have a Bartzella Itoh peony (cross between an herbaceous peony and a tree peony) which has just bloomed for the first time on a 3 year old plant...so excited! It's about 6" across and spectacular. Thinking about you and about your Liz on this lovely spring morning and wishing that she were in the garden with you.
Dancing, please let me know how it goes. The arm jumping was just weird rather than painful. The process didn't take long. I'm glad that you're taking the ativan first. Good luck, and please let me know how it goes this time. Pulling for you to have an uneventful and quick procedure. I felt SO MUCH better after the fluid was drained!!
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what a gorgeous flower!!!! And 6inches??!! Wow
They are giving me happy stuff apparently this time like a colonoscopy because they are doing a biopsy as well. We shall see!!
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Huge, gorgeous peony! Good luck, and let us know... 😊
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Joyner, beautiful peony flower picture. Glad to still see your posts. I am long gone from here--now on Verzenio. But I still look around to keep tabs on my friends.
Dancing, are you doing the colonoscopy prep? That seems soon, but ok. I just had mine done and all was clear. I fretted for nothing. I will be thinking of you!
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Intolight-
I'm gone, too, but I still check in!!
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joyner - Thank you for the beautiful peony picture. Your picture is just one more thing to go on my gratitude list for today.
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Dancing, thinking about you. Are you still scheduled for today or was that changed due to the biopsy/twilight medication change?
RK, I'm so glad! So many of my peonies are blooming now...going outside is a delight!
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i had it done finally and it was such a better experience. People were really nice and they put an IV in for happy stuff!!! They put me on the side too so I don’t feel like I fell asleep but I think I did. I woke up from my hiGh feeling, coughing up a storm and gasping for air for apparently is normal as my lung is now expanding?? And then I had to hang out for 2 hrs to see if no complications would arise and I had the best sleep I’ve had in awhile.
And they took out 1.5 litres!! Apparently people with this kind of liquid are put on oxygen. No clue how I was still walking around.
They did not do a biopsy as they could not see a lesion in ULtrasound.
It’s been hours now afterward and I’m still coughing and I still have sharp pains on the same side when I move sometimes.
Glad it’s over and it was a +ve experience. Sometimes people make such a huge difference.
D
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HALLELUJAH! Mine was only. 8 liters and I could barely breathe or function. 2 times+ what I had. I don't know how you were upright.
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Intolight and joyner, glad to "see" you.
I'm a flower gardener, too, and know that excitement of having a flower bloom for the first time, joyner. What a gorgeous peony!
I worked on planting perennials so there is something blooming from spring to fall. The azaelas are just past peak and some columbine, iris and poppies are opening now. The flower beds are around the perimeter of the yard which isn't that big but I did my best to pack in the flowers. It comes pretty natural to me but people don't realize over the years I've planted lots of stuff that didn't grow. It never discourages me, tho; I just keep planting more. Dh is the vegetable gardener.
Grant and denny123, I'm so sorry for your losses.
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Divine, please PM me some more photos of your garden! I'll send you some, too. You must be north of me (I'm in Zone 7b in VA). Our azaleas are bloomed out, as are many of my earlier peonies. Some are still just blooming. Gaura just coming into bloom and some baptisias gone with others just blooming. Some daylilies have scapes up. Such a glorious time!
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Joyner-beautiful peony! I have been busy planting flowers and my veggie container garden. And putting up deer fencing to try to preserve the flowers and my flowering shrubs. I am soooo many deer around here.
Denise
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Ladies, it makes me happy to hear of your flower and veggie gardens. Colorado has a very short growing season. In fact, it is supposed to snow five inches between Friday night (tomorrow) and Saturday. Most people who really want flower or veggie gardens here use some sort of greenhouse. Since I am still in the process of moving in, I will feel lucky to keep my trees in good shape this year. Keep sending those pictures and I will enjoy them!
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my garden and my new “helper”
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I'm new in here and will begin xeloda next week, after prior Ibrance, Letrizole, and Lynparza.
I'm hoping for the best. with few side effects, Ill have to read up on it.
But I came here by declining a Phase 2 clinical trial for ARV-471, which is extremely promising, but it came with a nearly impossible commitment to the study so I had to pass on it.
Here's a link to my post description so that you might know what some of these clinical trials entail - https://community.breastcancer.org/forum/8/topics/...
(we can't link to individual posts here? best I could do was link the page)
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mls...your Frenchie is adorable! I just let my 10-mo-old Wheaten terrier sleep in the bed with me last night in my husband's absence while he is on a fishing trip with our boys...against the rules and SO much fun!
pnw, I got almost three great years from Xeloda. I had a HNF issue, but I'd much rather have had that than not the X. Good luck with it!
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