All about Xeloda
Comments
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A final update on my wife. Rather than IV chemo, there's an Olaparib clinical trial specifically for those with the PALB2 mutation near us out of Philly. Initial results of 114 participants showed 82% of those taking Olaparib had some tumor shrinkage. She appears to qualify and is meeting with the clinical trial folks next week to verify that. Thanks again for the all support ladies!
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BLMike,
Wow, that sounds like it could be a good option for your wife. Fingers crossed that the meeting with the trial folks goes well.
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Thanks, all!
Mike, good luck with the trial...and let us know!
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Joyner, happy for your scan results!
BLMike, I would love to see the Olaparib treatment work for your wife! Best wishes to you both.
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Mike that sounds well worth a try if P is accepted. Good luck with it.
Andi I have several nodes in the lining of my lung which is what caused the effusion. I’m really hoping the pleurodesis works first time, but we’ll see. I had a spell of NED too, though only a couple of years. Like you I’ve always been active ( former PE teacher) and it’s really hard to deal with the level of incapacity and drop in quality of life that breathing issues bring. I do hope we both improve soon!
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Karen/Mike - Change in the level of activity has been a big struggle for Liz. She was always active with various sports so this has been a big change. The last 8 months or so, Liz has really struggled with range of motion with her leg. It's like as if her hip and knee are locked. Think of what it's like to have a full leg cast and that's how Liz's mobility is effected. There is some mets in her gluteos muscle but nobody is sure if this is the root of the problem.
Grant.
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Lynn....Yay for you!
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Karen - my pleurodesis worked...I had one on each lung 7-8 years ago and all this time I have had no issues with the fluid coming back. I think the problem now is related, but I don't really have fluid build up.... it's more like inflammation. Anyway, I am sure yours will be as successful! It's amazing what they can do. And yes, here is hoping that we are both back to breathing easier SOON. I am SO tired of this... it's been about five months since I really started having issues, and I feel like my body is turning to mush. I need some exercises that I can do that don't require breathing! Yoga, maybe.
XO
Andi
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Andi67- my TMs went down right away. And kept going down quite precipitously for about 6 months. Started creeping up a little after that, but, PET last month was essentially clear. I was quite ill when I started it with hemolytic anemia. It took about 2 months to clear. My side effects from the 14/7 cycles started about 3 months in with foot pain and dose was lowered. My ANC started crashing and I needed extra time off every time so switched to 7/7 and have been fine since.
I hope you are breathing easier very soon- such a distressing feeling.
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Thanks Andi. Breathing slowly improving...I can now make it to the top of the stairs (13) without gasping for breath! This is taking SO long, but my physio is happy with my progress. Day 2 of Xeloda - it’s 1800mg per dose twice a day. Apart from feeling a bit strange in the middle of the day, been fine so far as big D and vomiting concerned. My NP says HFS is cumulative and it’d be about cycle 3 before it shows, if that is to be an SE for me. She recommended Aveeno at this stage - she thought a 10% urea cream should be later if they are bad. I use a REN hand/ foot moisturiser at the mo and wonder if I can continue with that as they are ‘clean’ products. We’ll see!
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Hi All,
Just a quick note to say I am back, switching to Xeloda from Faslodex/Verzenio. I was on this regimen in late 2017 for three cycles but we weren’t really sure it was working so shifted back to hormone therapy. I’m hoping I get signs of a more definitive success now as I now have progression to my liver.
Karen, I think the NP is spot on. I had no trouble before until after the fourth cycle when I ended up with massive blisters on both heels. (Partially self inflicted - gardening... ). My MO has started me on 1300 mg twice a day to compensate.
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has anyone ever reached NED while taking xeloda? I just had results back from my last scan and tumours are still shrinking and my tumour markers are now within “normal” range (ca 15-3 is 30 down from 1000 last year and cea is 9 down from 250) I’ve been on xeloda since last Jun
I was just wondering if my hope of NED is foolish or doable lol
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I’ve been stable with minimal disease but switched to Xeloda in September to help with the brain mets. With radiation to my bone met and X, I reached NEAD in the body in December. Brain still stable.
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Mls, I have been NED for my last two PET scans. My MO was surprised to see it after just three months. It is doable although we all respond differently.
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one of the reasons I ask is because I am between grade 2 and grade 3 hand and foot issues. I have cracks in the creases of my hands and feet and all my fingertips and toes are peeling like crazy. My onc is leaving it up to me about dose reduction but he also mentioned it could affect the long term effectiveness of the drug. I’m taking 1500 mg twice a day, 7 on and 7off. After Ibrance and the clinical trial pill form of fulvestrant failing just after 2 months I’m leary of blowing through all my options too fast
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Mls, my HnF quieted down after six months to where it is barely noticeable but I don't know if this is the norm. It never got as bad as yours. I keep applying the urea cream and aquaphor to my feet as needed, and use Eucerin on my hands often. I was on 1500 twice a day 14 on and 7 off, but my MO just reduced me to 1000 in the am and 1500 at night because of stomach issues. I don't have an answer for you as everyone is different, but I hope to stay on Madame X as long as possible...
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IntoLight, yea I’m using all those creams plus I’ve started using thc/cbd cream as well
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Is everyone aware that they should get the Covid vaccine in the arm from which they did not have lymph nodes removed?
I have bi-lateral lymphedema, but it is controlled. But I hope that my PCP or chemo center can give me the vaccine in my thigh.
Both the Pfizer and Moderna vaccines are causing the axillary nodes to become sore and swollen even in the ladies without BC.
So there is a much greater risk to us BC survivors to develop lymphedema.
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Denny - Thank you for the insight on the vaccine! Liz has always been very careful with any procedure involving her arm that had lymph nodes removed but your info stresses the importance even more.
Grant.
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Denny - I heard the same thing. My oncologist actually told me that the nodes under her arm swelled up like a football, and she hasn't had any nodes removed or issues, etc. She said it was very painful and remained that way for a coupe of days. She hasn't told me when I can expect mine yet.... I am not in a huge hurry since I am still having breathing issues and literally do not leave my house or see anyone.
This second cycle of Xeloda has been easier, thank goodness. I have a little more appetite, but not much. I did get a prescription for Ritalin, and after I spent all day yesterday sound asleep, I finally took some today. I am not even sure it's had an affect! We'll see. But all in all, I feel better than I did the first time around. I will find out Thursday if it's working - that is obviously the key. My cough is gone, which is good news, and the pneumonia like sounds in my chest are also gone, but my breathing is still struggling so I don't know what to think. My HF isn't too bad. My palms are a little red, as are the bottom of my feet, but not bad yet.
That's my update! I hope everyone else is doing well!
XO
Andi
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It's me again. Wondering if any of you have experienced a rash and itching from Xeloda. My whole back is suddenly covered in this horrible rash that itches like crazy. I am not sure what else to attribute it to.
Thank you!
XO
Andi
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I got my first Moderna vaccine last friday- sl tender arm, nausea- mild and mild headache- I have no nodes in either axilla- so no arm swelling or node swelling.. It happened to land on day 4 of my off week and vaccine #2 will be that way also.
I feel relieved. I hear mixed reactions to the second vaccine from nothing to fever and bedridden for a few days.
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Nkb - I'm happy that you've had only mild side effects from the vaccine and pray that your second dose is even milder!
Grant.
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NkB, I got my Moderna vaccine 2 weeks ago with only slight arm pain. I am a little nervous about the second dose, but more nervous about getting Covid so I will go for it. I am glad we are able to tolerate it so well.
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Andi, sorry but I haven’t had any experience like that. Hopefully you can figure out the cause.
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Andi, I am no longer on X, but in the beginning, I DID have a horrible rash that itched. Dose reduction helped. Then maybe after you are on the reduced dose for awhile, you can go back up. If you get the rash again, reduce again.
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Goldie! Good to see you again! How are your doing on your new chemo?
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Just got to the end of first 14 days Xeloda 1800mg twice a day ( but it's actually a different brand of Capecitabine). Mild nausea most days, so trying to deal with that without the antiemetics unless really bad. Like Andi I also have a red itchy rash which appeared 2 days ago, but it's across my face and chest. Lips also stinging but no mouth ulcers...so far. Taking an antihistamine which has helped a bit. Feet were fine and I managed a 3 mile walk a few days ago (after my lung issues that was a big deal). However, yesterday took the pup out for a couple of miles wearing same shoes, different but well worn socks, and my feet were on fire! Had to dunk them in cold water and they're still red and feel burning today. Been using plenty of moisturiser on both hands, which have been tingly since about day 7 and feet since start of treatment, as advised by folk here and my NP. I've used Liz Earle and REN products for years with no issues. I suppose these are a sign that the drug is at least doing something, if only giving me side effects!
Any advice gratefully received....
PS I went back to page 1 on this thread to see what the advice was there too!
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Karen, that seems like an awfully large dose to me, especially 14 on/7 off. I'm on 1000mg/twice a day (total 2000/day), 7 on/7 off. Obviously you have to do what works for you. I have grade II HNF. What works best for me is wearing these at night when my feet get bad. I don't use creams with these, but many/most seem to:
Or these when they're uncomfortable but mainly in the heel area:
And wearing plain old nitrile gloves when my hands hurt, whether overnight or during the day (without creams, typically):
Good luck, Karen!
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Karen ...that is a high dose and I sure wouldn't push the walking. 3 mile is way too much. I have been on chemo for 19 years and have never used an alternative supplement, since they keep the chemo from working.
I use Aquaphor on hands and feet at night with silicone socks and food service gloves. I like the pure silicone ones from China on eBay or the Natracure, but without the individual toes....which would make me crazy.
I also use Aquaphor through the day.
Call your onc, though, since the rash means a possible allergic reaction.
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