All about Xeloda
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Sandibeach - My wife Liz was pretty good for the first 6 months. After that she started getting periodic serious gas and diarrhea. It was very sporadic, week 1, week 2, week off... She has never suffered from IBS so I think it's safe to say it's from the Xeloda. She takes a digestive enzyme which seems to help alleviate some of the discomfort (discomfort is putting it mildly).
One question Liz had for everyone. She has mets in the liver, lungs and bone. What's really been bothering her lately is pain in her leg and hip. Not 100% but pretty sure it's attributed to the bone mets. Has anyone used CBD oil orally with any success?
Grant.
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Grant,
I have used CBD both orally and topically. I will tell you, in my opinion, the CBD works better when it has a little THC. I like a 1:1 ratio.
Best,
Stace
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lark5000- my daughter is a nurse and I was asking her about cutting a pill in half (but it wasn't X), and she said that unless it is scored to show that it can be cut, that the pill won't necessarily have the same dosage all over.
I get bloodwork every 3 weeks when I go in for my Herceptin IV.
nkb-I did try the prescribed stuff and my feet got horrible. It was Ammonium Lactate and Clobetasol. And I was also told to use Urea 40%.
I had bad cracks all over my feet since they got too dry. So I started on my own to use Aquaphor all of the time and my feet are tons better.
I had read about icing after taking my pills and my specialty pharmacist said that it wouldn't make a difference since the chemo doesn't go to the hands and feet that quickly.
But icing at any time is fine for the pain.
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Divine, my blood is tested every 28 days, when I go in for my Xgeva shot, which I'm doing today.
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Denny123- thanks, I heard that the half life is 45 minutes or something.but, since the MSK document didn't say ice would help I figured it was just helping the pain.
interesting info re the folate and the metabolism. I was started folate by my MO a few weeks after the Xeloda to "support my red blood cells" during the hemolytic anemia. wonder if that has anything to do with the HF or dosage. anyway- am very happy to have 7 days off and to lower the dose- I am not worried about efficacy right now- my MO said the lowered dose would not affect efficacy and would help my feet. I do like to take walks..
7/7 scheduled just isn't done on the west coast that I have seen. I didn't ask my MO but, the pharmD said it hadn't been studied and I guess that is what Husband11 said also.
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The other thing that my MO told me is that people with metastatic disease complain a lot less than early stage people.. perhaps it is perspective- not sure.
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Thank you, Joyner. I’m happy it was helpful. That’s a great idea, Sandi, to give patients a detailed chart about hfs (or any typical side effect), so they know what things to report and have some language for doing so. It could be the CTCAE criteria translated into everyday language. About the RN who told you to keep on since you did not have blisters — I think nurses in general are fantastic. But more than once I have seen trouble when a nurse diagnoses over the phone. Not their job, and some things merit a physical exam. How great that your MO was not only concerned, but took action to improve training so what happened to you doesn’t happen to other patients.
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Regarding Hand-foot Syndrome --
Once in a while, for newbies, I like to post a link to an article from July 2010 Oncology Nurse Advisor entitled "Prevention and management of hand-foot syndromes". Below I briefly summarize some main points about causes, prevention, and treatment; and mention some ways I applied the information when I was on Xeloda.
Possible causes and prevention:
—Small amounts of the chemo leak out of the capillaries into the hands and feet, damaging tissue. Therefore avoid heat, pressure, friction, and harsh chemicals on hands and feet. Some examples would be hot water (incl. with rubber gloves that trap heat), sun, saunas, tools that cause a lot of pressure. So be mindful when you cook, garden, build, etc. For example, if possible get help with opening tight jar lids, and use warm water only for showers and use cold water at other times.
—Local delivery of high drug concentrations occurs through the sweat glands, of which there are many on the palms of the hands and the soles of the feet. My idea about this is to wash the hands and feet a couple hours after the pills (peak blood level), and whenever they feel sweaty. I also change my socks a lot, and take off my shoes when I am sitting for any length of time.
Possible treatments:
—Dose reduction
—Pyroxidene aka Vitamin B6. I wouldn't take a supplement without my doc's advice, but I figure I might as well pay attention to foods that have a good amount of B6, such as turkey, chicken, salmon, eggs, cheese, lentils, beans, carrots, spinach, garlic, bananas, whole-grain flour, chia seeds, and pistachios.
— COX-2 inhibitors to reduce the inflammatory response. e.g. The NSAID Celebrex. Ask your doctor. I did a bit of research and found that oregano, holy basil, and ginger may have similar (though I expect smaller) effects, so I cook with them.
—Vasoconstrictive therapies such as localized cooling. So I rinse hands and feet with cold water, especially a couple hours after my pills or whenever they feel hot.
—Topical emollients, especially those containing lanolin. Lansinoh is a nice one; find it in the breastfeeding supplies section. It is too thick for regular use but superb to help broken skin heal. I also recommend O'Keeffe's Healthy Feet, which contains urea but not a huge amount, which could be bad for sensitive skin; Shikai Borage Therapy Foot Cream, and Everyone Lotion with coconut oil. These are all paraben- and fragrance-free.
I hope these notes will be helpful. I’m having trouble with the link. Working on it...
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YAY! Another good CT scan-still NED. But my heart skipped a few beats, so I have to get an EKG on Tuesday when I go for my bloodwork. So as of next month I will be an 18 1/2 year survivor of Stage 4 MBC de novo.
Kind of sobering that the center is changing all of the several waiting rooms to be all in one, so to speak. They are trying to eliminate patients sitting in the waiting room. We now get checked in, in a room along the hall-weight, BP, computer-check on our meds.
Now all of that will be done in individual rooms. As my nurse said, they don't expect Covid to ever go away.
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YIPPEE, Denny! You're our hero!!
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Denny - amazing and inspiring results! God bless you and everyone else on this forum!
Grant
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Denny123. Really happy. Someday..you and your cancer will be studied. Your cancer has definitely taken interesting changes and responds each time! Wow.
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great news Denny 123!!!
Lots of changes at the place I get care- taking my temp 3x before I get to the infusion clinic. The lab and pharmacy are deserted. Seems like at some point people will get less urgent health care again.
Virtual ortho exams and virtual PT for a friend of mine with a torn meniscus.
I can’t imagine when this will go away- except with an effective vaccine.
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Great news Denny !
My MO also says that the restrictions implemented in the oncology departments in Denmark in connection with covid 19 will continue for a long time, even though the covid 19 situation in Denmark is very much under control and our society is slowly re-opening. Let's hope for an effective vaccine sooner than later!
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Hi everyone. I kind of new here, though I’ve lurked on the boards in the past.
I’m having a bit of a rough few days, so I’ve come looking fora little bit of hope.
I’ve been on Ibrance/Letrozole since becoming stage IV in September 2018. It had been working really, really well. In late January, progression was suspected, but not 100% confirmed by scans, and my Dr. said I could wait and see for a couple of months, or just switch to Ibrance/Faslodex. I switched.
Yesterday I got news that it’s not working, and I’ve had progression. The small spots in my right lung (previously the only detectable area) have grown, and now there’s a lymph node near my stomach involved.
I’ll be starting on Xeloda as soon as my insurance approves it.
I’m feeling very discouraged and scared that the Ibrance, which we’d thought would work for a lot longer than this, has failed. Has anyone had any kind of long-term success (on Xeloda or anything else) after failing on Ibrance/letrozole and Ibrance/faslodex?
If it matters, I’m 35, stage IV since September 2018, ER+, HER2-.
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LVGirl, I'm going to Private Message you....
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Denny, that’s wonderful news to hear of your good ct scan! So happy for you. The longevity you’ve been living with this disease—18 1/2 years—is so inspiring!
LV, sorry to hear of the Ibrance situation. I didn’t have any luck with it or with Verzenio so am now on Xeloda for about 2 months. Like you, I’m hoping for good results. Best wishes to you.
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Thanks ladies!
LV-I haven't had the chemos that you had, but Xeloda has kept me NED for 27 months and I am an 18+ year survivor of Stage4 MBC de novo.
And I am only on 2,000 mg a day of Xeloda, so it is doing a good job with me!
Welcome! We are here for you!
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Denny, that is THE BEST NEWS!!! I am so so happy for you!!!
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Denny, always having good scans. May it continue for a long long time!
LVGirl, I did Xeloda for almost 6 years, with bone mets only.
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Thank you all for your responses. Goldie- almost 6 years? WOW!!! I hope and pray to have that kind of amazing response!
And Denny... hearing that you’re a more than 18 year survivor (and counting) literally brought me to tears. What a miracle.I feel renewed. The hope is creeping back in. And I am energized and ready to take this thing head on and do everything I possibly can to improve my chances of having an outcome like these! ❤️
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Hello everyone,
I am writing in this thread after a long time. Hope everyone is doing well and safe. I was in Xeloda for past 5 months. I did my 3 months PET SCAN in Feb and it came out clear . I recently did my 3 months PET SCAN last week and they found 4 hypermetabolic lymph nodes. Looks like the Xeloda did not work for me. Mine is TNBC.
I did the scan last Wednesday and I haven't heard anything back from the doctor yet regarding the next step. He was away and came back to the hospital today. Since morning I have been trying to reach out or left message or emailed the nurse. Still no response. This is very stressful as well as frustrating.
Can anyone of you share your exp about these kind of Hypermetabolic lymph nodes. According to the test results these are very tiny difficult to scan.
-Thank you
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Hi Xeloders.
So I am new, so still feeling my way arround this drug.
First cycle: Lasted 12 days before Red Burning feet and "D" appeared. Then OFF 10 days. (3300 mg/day)
Second cycle: 5 days ON, red burning feet, OFF 2 days, then 5 days days ON..stupid red, burning feet again. Now OFF. (2800 mg/day)
Will my cancer get killed with this yoyo OnOff routine?
Also, anyone else get red, slightly raised painful small lesions on forearms, shoulders, legs? Not many of them..just odd.
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You know, I had a burning sensation on part of my palms and on the soles of my feet for my first two or three (?) cycles, then my body seemed to adjust and I did not feel that even though they were still red. That was at 2500 per day.
My opinion, better to reduce dose than keep going on and off.
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Sandi-I think that it will still work since the stuff stays in our system for a week after the cycle has been completed.
I haven't gotten the lesions. Have you been out in the sun?
Question....has anyone had pains in their torso? I thought that I had a cracked rib, but an xRay ruled that out. And my CT scan was okay. This has gone on for 2 weeks, and last night, a very itchy left reconstructed boob, plus the sporadic pain. So, I am thinking that I might have an infection and took a Cleosin which I plan to continue for at least 5 days.
My left boob is saline with a lat flap over it.
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sandinbeach57- I am on cycle 4 of 14 on, 7 off. Last cycle (2500 mg/day) I had red burning feet a few days in and was hobbling to the bathroom the last week. My MO decreased my dose to 2000 I also stopped the folic acid I was taking for my hemolytic anemia. This cycle of 2000 per day and no folic acid is going fine. I am 5 days in no burning feet and no pain.
No pain in my side - some weird rashes On face and hands which I think are from previous sun damage that are coming to light.
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Thank you everyone!
S
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Nkb,
I was just looking up info on side effects of Xeloda and came across an article on medscape about dosage differences between here and Europe during the clinical trial. The US fortifies flour and multiple other starches with folic acid. I hope you can find something you can replace it with. I quit taking my vitamins and eat few starches so I’m hoping it limits my side effects. I just started my second try of Xeloda and so far I’m okay but it’s only been a week.
https://www.medscape.com/viewarticle/583704_3
Sandi, before restarting I talked to my MO about different scenarios and would he be open to them (things I learned here), 1 week on/1 week off, even lower dosage on regular schedule or lower dosage on 1 week schedule. It helped us come with a plan for what happens if what we’re doing doesn’t work and I’m hoping it keeps his mind open to possibilities. He’s a new MO so he doesn’t know me well yet. I hope you get a solution that works for you.
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I'm struggling a bit with an issue with which I suspect many of us grapple: I'm on a dosage which for 16 months now has kept me stable, or at least per PET scans, it has. On a side note, I wonder if an MRI would show something different. My dosage was modified twice during the initial few months: from 3000 to 2500 to now 2000 (for the last year or so). I'm 7/7 and have always been.
My issue is that my hands are red and painful, unless I wear nitrile gloves 24/7, and wearing the gloves tends to make my nails even worse than they were from the medication. I have for the most part lost the feeling in the tips of my fingers, and they feel tough. No fingerprints left; lost those long ago. My feet burn and feel tough and odd. I wear those sock things with the gel lining every night, and those help a lot, but if I didn't put them on at bedtime, I'd pay the next day.
My onc is very willing to reduce the dosage further, but I'm quite simply afraid to do so. My quality of life (except for the HNF) is excellent, and I'm afraid of progression if I make a change/rock the boat. Damned if you do, and damned if you don't.
On a further note, my cuticles had grown down and looked ugly. Those had been controlled by monthly manicures until the shut down. I decided to do my own manicure and soaked my nails and then used an "orange stick" and push my cuticles back. I must have been too aggressive, as most of my nails developed red, angry areas just about the cuticle, and my thumb nail in particular looks bad (for you young ones, don't despair...these hands are 74 years old and do a LOT of gardening!):
I'm not sure that I'm posing a question. I guess that I'm just whining! That said, has anyone else had this sort of irritation at your nails? I worry that I'll develop infection(s) or that I'll lose that thumb nail.
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Joyner--I have had PET scans for many years and they are very accurate. Now on X, I am only getting CT scans. But I would believe them.
I hate my ultra-long cuticles and they are so hard. But they are hard to see and it isnt' like I am around anyone anyway.
My specialty pharmacist who sends the X to me said that my Centrum Silver vitamins are okay to take even with a little Folic acid in them. And the fact that only 2,000 a day has kept me NED for 28 months, indicates to me that it is still working. I also get a Herceptin IV every 3 weeks.
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