All about Xeloda
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Lynn - Praying that rads will clear everything up completely!!
Grant
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Well my tumor Markers are on the rise never have dipped and only going up small but steady about 10-15 points a month. My ONC said today he wants to scan early in about a week and be prepared to go on to IV chemo and get a medi port. this is my second TX as Ibrance/Falsodex failed. Why am I not getting any benefit from these Treatment? does it mean it is not going to respond. I am so bummed. I'm about to just give up...I'm only 11 months in this fight!Been on Xeloda for two months and my TM's going up. Sorry for being Debbie Downer.
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Imagine, I am so sorry to read this news. I am not medically trained so I have no idea how it all works, but I can pray that things improve for you. Holding you up in prayer.
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Imagine: So sorry to hear about your treatment news. I know how disappointing it is when something doesn't seem to be working. I'm in that phase right now too. There may be some on here that can give you some encouragement about how IV chemo can and has worked for others. You're not a "Debbie Downer".
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imagine- has your MO considered Afinitor? It is oral and many people have few side effects- it may work and give you 6+ months before you need IV chemo and maybe more things will be available by then. It can mess with your blood sugar so is harder if you are a diabetic. Or Piqray if you are PI3K positive.
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Imagine....sorry for that news. But don't be afraid of IV chemo. I have been on IV for 18 1/2 years and still hanging in here!
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Imagine, how many rounds have you had? Are you 14/7 or 7/7? Mine JUST went down for the first time after 4 rounds (7/7) but still only a few points lower than baseline. Just got a note from my MO that my CT is better than my baseline and liver metastases are smaller. This of course is from a report from an independent imaging center. I will take the DVD into her next week so she can review the images and have her radiologist do the same thing. So praying the scan shows something different!!
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MO and I were discussing possible next tx and, of course, X came up. I always talk about side effects and mentioned hand and foot. MO said, "that is mostly cosmetic." Thought you would like to know. I did not say, "you should talk to some people I know at BCO." I had already said several snarky things so held that one for later. Mostly cosmetic???
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Jaycee, shocking! Cosmetic?! Just got off a video conference with my MO and her concern for HF is more a cautious concern. I am told to keep hands moisturized to improve comfort level but she is keeping everything the same for now. Sometimes it is difficult to find a busy onc who cares about patient comfort and can balance that with treatment. Yet one more thing for us to have to manage...
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Jayce..threw up a little in my mouth..cosmetic?
Pain, red, blisters and burning sensations are not cosmetic and can cause sloughing off of bottom of feet if left untreated with months to heal.
With the right dose and monitoring of side effects and scans, this drug is tolerable.
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Thanks, Grant and IntoLight! So far, so good....
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jaycee...how uninformed she is. The chemo goes to the tiniest of nerve endings...thus the feet and hands. The soreness and damage comes from inside our bodies.
Yes, we have cosmetic problems, but it is also so much deeper.
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4 cycles of 7 on 7 off.
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Jaycee, I hope your doctor doesn't really think hand and foot is cosmetic. I hope it was a slip of the tongue. HF can cause permanent damage if not dealt with, as well as the discomfort/pain in the short term; making it difficult to open bottles and jars etc. I am sure a few of us on this thread would be happy to educate her/him. Careless talk upsets me , we have enough to deal with.
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Interesting article for clinicians on treatment of bones mets. I am cross-posting with Bone Mets only on this article:
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Imagine, I hope your scans tells a different story and your TMs start heading south so you can stay on this treatment.
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JoynerL, you doing okay?
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I am, Sandi....thanks! Two SBRT treatments on that periclavicular node down and three to go. So far, the treatments have taken almost no time (10 min from walking in, I'm walking out), and I don't have any SE at all. I was told not to expect any. Thanks for checking on me!
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Those with liver AND bone mets (I'm asking on the Bone Mets thread too). I had the Zometa infusion almost a month ago. Had the 48 hrs of flu-like symptoms but a few days later when I started chemo, I would get deep bone/muscle/joint pains in different spots everyday. This has been going on for almost a MONTH!! It was more extreme discomfort than pain but a few nights in there were definitely A LOT of pain so much that I was on the couch in the middle of the night for hours. This weekend is one of those times. Do you guys thing this is a bad reaction to Zometa? I know it said side effects can last from days to months but this is literally ruining any daily activities.
Also what is your favorite pain relief. On mild days, ibuprofen can take it down a few notches. I use Naproxen when it's worse. I've only used hydrocodone once.
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pamela23, I get pain and discomfort with xeloda, worse during the first week of the cycle, my oncologist seems to think it's a positive sign madame x is working. I was accumulating various SEs so have just started a lower dose and it has lessened the pain /discomfort. I have not found any pain medication that works for me . I would be pleased to hear from others what works for them.
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pamela23, I get pain and discomfort with xeloda, worse during the first week of the cycle, my oncologist seems to think it's a positive sign madame x is working. I was accumulating various SEs so have just started a lower dose and it has lessened the pain /discomfort. I have not found any pain medication that works for me . I would be pleased to hear from others what works for them.
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Pamela....When I had Gemzar & Herceptin 17 years ago for my liver mets, I had liver pain that I had not had before. My onc told me that it meant that my chemo was working.
And he was right!
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I saw my MO this week & she doesn’t think my deep muscle/joint/bone pains are from chemo or Zometa. I see a rheumatologist next week and my dr said we could skip the Zometa this month.
I felt I had a great visit. My CT scan of lungs were clear and the CT of abdomen showed shrinkage of some Mets. But it was done at an independent imaging center & they could only compare it to an MRI Of the abdomen I had done in Aug. the measurements of the 2 reports weren’t adding up to my advantage. I didn’t get to read the report until I was home. I saw it said 2 ‘suspicious’ lesions on my spleen. She didn’t mention that to me. In fairness, I had brought in the CDs so she hadn’t compared the new scan images to the old yet. She said she wanted to show her radiologist and get his opinion although it wouldn’t be official since the scan was already signed off at the independent imaging center.
I got my labs that evening and my AST that has been decreasing down to almost normal, tripled and my TM went up 300. Has anyone else had a blip like this? Can something like inflammation to other parts of my body effect the TMd, or the crap food I ate over Halloween weekend skew my liver enzymes? She said if they don’t go down next time we’ll talk about other treatments. I really want to stay on Xeloda since I’ve been on it a couple months and tolerate it well.
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Regarding pain on Xeloda, I have been on it for about 3 weeks now, and I have twingy little pains where my primary breast tumor is. Not bad, but pinchy feeling little aches. Has anyone experienced something like that? Hoping its an effect from treatment and not progression. My MO has me referred to a radiation oncologist to have that option in our "back pocket" but wants to go with Xeloda first. Pamela: For me, its been tolerable too.
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Good to read about others having pain, although I am sorry that you do.
I went for a stress test on Thursday since I had sharp pains around my heart 5 weeks ago, but no other heart attack symptoms. My PCP ordered a stress test, but I can't use a treadmill, and my insurance didn't approve that anyway.
They did approve the very hard test with the injection, but the cardio dept doesn't want to give me that test with my chemo history. I had that test about 16 years ago and it is pretty scary.
I had an easier stress test 2 years ago, but they don't do that anymore.
So I think I will just chalk up the pains to Xeloda, especially since I have pains everywhere else for no other discernable reason.
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My Oncologist was not at all surprised when I said I had pain with xeloda. It was not a side effect that was mentioned before I started madame x. I have the dates for my scans now, so I will be able to find out whether the pain is part of the healing process, as my onc. suggests. Fingers crossed.
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Hi!
I just started Xeloda 3 days ago. I've suffered from neuropathy prior to my cancer diagnosis and struggled more-so with it towards the end of my Taxol treatments. My MO had me skip two treatments so not to cause permanent damage. I noticed it was getting worse right away the same day. However, it was unbearable yesterday, to the point of crying. I see my MO on Thursday, and I'm sure she's going to lower my dosage (I'm currently taking 3500 MG daily). I have not read or was I told that neuropathy was a SE. Just wondering if anyone else has experienced this?
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Ivy09, neuropathy is definitely a SE, I think it's part and parcel with the hand and foot thing. I'm a dog groomer who now has problems doing up buttons. If it gets much worse I will have to stop working
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Mls1
Thank you for your response! I hope it eases up for you! It definitely is not easy and an awful feeling!
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I have a question about Xeloda and feet. Has anyone else experienced a "blackening" of bottom of feet? It happens if I have feet hanging off couch or chair. As soon as I elevate them, it goes back to my slight red color.
Any ideas what causes it? I know if you leave your feet lowered, you can see purplish color if there is poor circulation. I do not have poor circulation.
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