All about Xeloda
Comments
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Not I, Sandi. Maybe a call to your MO?
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My feet and hands get burgundy from time to time.
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Good description of color, Denny123. My heels and parts of the ball of my feet are burgundy too. From what I read, the chemo goes into the small capillaries in the hansd and feet and the pressure we put on then can make it seep into the surrounding tissues which causes pain and inflammation. The only way to control this is by decreasing/skipping your dose. I always let my dr know the next day so she can give me advise on the dosage to continue with.
I have a question for you ladies, I just finished my 6th round of Xeloda and find it's not working. I was told 2 weeks ago that my liver enzymes (which were almost normal the 2 weeks prior) tripled and my TMs went up 300 pts. I had 1 round 2000, two rounds of 3000 then back to 2000 because of horrible H/F syndrome, for 2 rounds when these numbers showed up. I had a CT but found out my baseline was an MRI so they were comparing apples to oranges. Not to mention, they were taken at 2 different facilities (thank you Cigna). So in a desperate attempt I asked to do 1 more round but this time 2500 every other day mixed w/ 2000 on other days. This week I noticed my liver is enlarged. I can feel the hardness sticking from under my ribs like it was 2 months ago. I also have a couple lymph nodes on the side of my neck that had been going down but now one has grown again. My MO wrote me today that she want to see me this week and I know it's about changing regimens because she had spoken to one of my other drs about it. SO....what IV chemo do you think they'll put me on for ER/PR+ HER 2-? Anyone know the first choice for IV chemo for stage 4? I had T/C 3 years ago.
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Pam...sorry that it didn't work out for you. I am ER+, Pr- and either Her2+++ or Her2-, so I have no idea.
Good luck!
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Pamela, I wish that I had answers, but I do not. What I do have is support and prayers, and I'm sending them both along to you and to all who are having difficulties now.
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Pamela, so sorry this drug has not worked for you. We all wish you well on the next stage of your treatment ,so please keep posting.
I am having scans this week with results on Friday after 4 cycles of xeloda, I cannot tell whether it's working or not, so 'scanxiety' is high at the moment here!
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Pamela23, Sorry to hear that Xeloda isn't working for you. Hope that the next treatment you and your MO decide on is more successful.
Denny10: I have been on Xeloda for one month, 7 days on and 7 days off. What is a "cycle" of Xeloda? Wishing you well on your scan Fri. I know what that "scanxiety" can feel like. I see the radiation onc. tommorrow for my breast tumor, then my MO later in the day. They'll decide when I'll stop Xeloda for a bit to get some radiation. Its all very anxiety inducing.
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Pamela, I am so sorry Xeloda did not work for you. I have no answers since I have never been on IV chemo, but I will pray they find an answer for you soon that will work well.
Elenas, A cycle is on / off, whether it is one week or two. I am on two weeks on 3000mg and one week off. It is working for me (NEAD after 3 cycles) although I do struggle a bit. My MO says the degree of my HnF is manageable and since it is working so well I will stay on this dosage and deal with it all. I start my 10th cycle tomorrow.
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thanks everyone for the prayers & support. I’m just trying to brace myself for tomorrow. IV chemonis not fun, I’ve done it before but would love not to lose hair this time. The disease and treatments take a toll by themselves, but not to look like yourself is really hard too, as vain as that sounds.
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IntoLight. Thanks. I just wasn't sure if 7 days on then 7 days off would be 1 cycle. Did you go on Xeloda when no longer responding to Ibrance? Thats my case so I'm hoping for some results. I feel fine so far. I'm not looking forward to radiation though.
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Elenas, yes. I was on Ibrance for four years before it failed me. Xeloda is my second treatment. I have not had radiation either since there was no clear reason for it. I have relaxed a lot since my first day of Ibrance as I am learning how to live with it all, but I know someday things will change again.
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Pamela - my prayers are with you for your next treatment.
Liz found out today that she is moving on to her 4th line of treatment. Her next treatment starts December 2 and will be IV taxol.
Prayers and hugs to everyone.
Grant
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lizo1: I had twelve weeks IV Taxol when I was first diagnosed stage 4 in 2017 and found it very tolerable, except for the hair loss, I didn't have any bad SEs. I did ice my hands and feet during treatment so had no nail issues. Hope it goes well for her.
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Elenas - thank you for your encouraging message! We're praying that this will be the treatment that works well. I'll do some research on icing techniques.
Grant
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My MO considers a 7/7 cycle as 28 days or 4 weeks.
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Pamela we're so distressed about Xeloda not working for you (especially given our concerns below). Regardless, best of luck with IV chemo: chin-up as you go through that. Yuk!
Ladies we could use a little pep-talk here. My wife, Polly's, MBC started in her lungs, went to her liver, and now apparently is in the thyroid. She's gone through Ibrance and Piqray and has only been on Xeloda for a month or so (with minimal SEs). We know we have to be hopeful that Xeloda will work, but it feels like this thing is just out of control and quickly moving from one body part to another. I definitely get more than I give from this forum, and hate to seem so negative, but we find the hope and support so helpful here.
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Thanks everyone for the kind words, My MO and I came to the decision of Gemzar/Paraplatin combo starting Tuesday. Taxol was my other choice. She said she'd respect my decision. Everything has happened so fast in the past few months, I chose the combo, just need to watch my RBCs which are already low. Anyone been on this before? She said I may need blood transfusions if they dropped too low. It's always something, right?
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I haven't had Carbo, but Gemzar was easy for me. I just had some hair thinning, but not enough to warrant a wig.
My reds did go down, but I read to drink RED grape juice, and it seemed to work. Welch's makes it. mazing job on my numerous liver mets in 2004.
My liver was filled with numerous mets in 2004, but Gemzar with Herceptin cleared it out in only 9 months.
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I had my results from scans today, a brief chat to oncologist over the phone. xeloda is working beautifully on some of my tumours and not having any impact on others, which continue to grow. I am going to stay with xeloda for now ,but I am being booked in for biopsies etc. I will have my face to face with the oncologist when the results are in. " Things are getting more complex now." he said and we will discuss my options then. AARGH!!
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Well darn Denny10 with the mixed results. Glad you are getting fresh biopsies.
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Need some input. I am having a Barium GI scan Monday morning. Has anyone ever taken their morning dose without food and if so, any problems?
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Hi Ladies! Haven't posted in a bit but I've been riding the emotional wave of all this and haven't had much to say.
Sorry Pamela23 that Xeloda didn't work for you - I am kind of feeling the same way. I don't feel like this med (or maybe the dose) is doing everything it can. I don't have scans until December but I am thinking about calling and getting in a little sooner because I hate to wait. The thing that sucks is my support people (mostly hubby) keeps telling me how well I am doing but I don't feel like it's going well. It seems that when I go into my "off" week, that it doesn't take long for my neck node to begin to inflame again. I also am feeling more and more like I have something stuck in my throat - I don't have trouble swallowing that I can tell but it doesn't feel right. I have mentioned this to MO before and it seems that I get a shrug, he feels around and then doesn't really move on it. I can't feel anything in there but I'm not a doctor and I don't like poking around because that just pisses it off more and I spiral into fear.
I have not been able to find that sweet spot of when I should call the doctor and when I should watchfully wait and see what happens. My fear makes me want to call everyday but my mind knows this is a marathon not a sprint. I'm like Pamela where I really want this medicine to work but I don't want to let things spread and get worse. It's a horrible balancing act. I so admire those of you that seem to be able to live in the gaps - I find myself spending all my time monitoring my body and assuming the worst. The thing that really sucks is that my MO is just far enough away that it creates a day trip to go see him. So I get this mental block on calling because I don't want to waste anyone's time.
How do you guys figure out when/if to call and not freak out in the meantime? Sometimes I feel like if I call they have a set plan in mind and don't want to deviate from that. I'm certainly not in crisis and hate to navigate these places during COVID but I don't want the cancer to get a head start.
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Is there a document here somewhere of advice for new users?? I don't want to bore everybody with the same old questions!
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Pamela23 - hopefully you have an answer by now but if not my docs went back to Taxol and Taxotere (post Covid)
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Isharvery-ask away....we are here for you. Unless you want to read all 395 pages of posts! LOL.
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Yay! Still NED after almost 3 years on Herceptin and Xeloda. Dec 12 will be the start of my 19th years since my Stage 4 MBC de novo dx!
I didn't see my onc yet, but had to go in for a Covid test. My 8 year old grandson was in daycare on Monday (since his school was only on Thurs & Fri--but now closed until the end of Nov.
( And we found out on Wed that a child in his room tested positive.I had him all day on Tues and he won't wear a mask. So now I seem to be fighting off a cold, but wanted to get tested. I will find out by Monday, I hope. My dr. checked my CT scan results and I am still NED.
Now, hopefully I don't have Covid. I am in W Pennsylvania and we are really slammed here. I guess that I will be a hermit forever.
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Denny, congratulations on the great results! Boo on the Covid scare...
Had a trip to the ER this morning with a syncope episode--my first. Lasted at least a minute and scared my DH. All tests well so I hope it is nothing. My DGD and therefore house family all have colds so perhaps related. Just tired and weak but glad to be home. Spending a long time in the ER alone is not fun!
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Denny123 - what an inspiration you are! Praying I'll still be here in 18 more years! I was dx stage 4 in January tho in hindsight I was definitely stage 4 early in 2019. Did Taxol and Taxotere until neuropathy got too bad so they moved me to Ibrance. 2 rounds of Ibrance and I was dx with pneumonia. Docs can't be certain if it was truly pneumonia or a drug reaction to the Ibrance so now I'm being switched to Xeloda. Looking for any tips or tricks for Xeloda!
. And I know you all know more then the docs when it comes to that stuff!0 -
Thanks Into! Glad that you are okay.
Isharvey- Thanks also!
I use Aquaphor at night with silicone socks and food service gloves. I also use Aquaphor through the day.
Take the pills a half hour after a high protein meal or snack for best efficacy. The pills can be taken 10-12 hours apart. If your hands or feet get sore, call your onc, and he/she may lower your dose. If your toes get red and infected, use Betadine all around the nail for few days and it will heal. For skin splits, I use Bacitracin and a bandaid.
I am on 2,000 mg a day at 7 days on and 7 days off.
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Denny123: You're such an encouraging example to look to. Hope you and everyone can avoid Covid. Its spreading like wildfire here in west central Minnesota.. One nursing home in a small town here got its first positive case in Oct., and now have had 7 deaths of residents.
IntoLight: Sorry about your trip to the ER.
Isharvey: Hope Xeloda treats you kind and does wonders for you.
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