All about Xeloda
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Amy Q: I have had 9 cycles of Xeloda...at last weeks appt, I finally asked my ONC about decreasing my Xeloda dose due to the HFS....so I am decreasing from 4000mg to 3000mg per day...14 days on / 7 off...I was hesitant due to the exceptional response I have had so far....TMs have dropped 90% and my last scans showed significant improvement !!! I was also sent to a Dermatologist who prescribed a topical steroid cream and a very good moisturizing cream they sell in the office. My advice is pamper your feet and hands from Day 1 ...hoping Xeloda is easy on you !!!
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Reporting back on the subject of the supplement AHCC as an immune booster and blood count booster. My wife has taken it for the last 5 weeks during her time off xeloda and during. As per the usual, her blood counts are taken one week after she finished up her xeloda cycle. Prior 6 months my wife had been taking maitake d extract (6mg/kg). We have switched to AHCC (3 grams daily) to see if it works as well or better. It seems to work as well or better than maitake D in holding up her neutrophils. She finished this cycle with a neutrophil count of 1.4. Last cycle, during which she took maitake D, her count was 1.1 at a week out. She did however once in the past come up to 1.4 on the maitake one week out. No change in platelet count at the end of the cycle, still 49, just like end of last cycle. Liver values however improved over last cycle, and also her CEA took the biggest drop yet during a cycle (percentage wise). CA 15 also dropped, but the rate has slowed slightly over time. So it would appear that AHCC is as good as maitake D extract for holding up blood counts during xeloda. Possibly better. More convenient as it is a capsule, but more expensive, $5 per day as opposed to $3 per day on maitake. AHCC is supposed to be good for the immune system, blood counts during chemo, and liver health.
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Timothy, I have also been on AHCC but have not monitored my blood yet because I have only done one cycle of Xeloda. That stuff is expensive!! What brand do you buy?
Thanks and glad your wife's numbers are improving!
Robin
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Now brand, purchased from Vitacost. It should all be the same since there is only one manufacturer of AHCC.
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The scary part about her last checkup is the MRI. The original lesions in her liver are gone, but she has developed some small nodules. The Onc thinks its regenerative nodules. Apparently that can occur when you have liver damage. But of course he can't rule out it being cancer. Just doesn't think it likely given the continually improving blood work. MRI's are really lacking in their ability to tell you what something is. So many diseases produce similar imaging.
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Thanks Timothy!
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Timothy wrote:
The scary part about her last checkup is the MRI. The original lesions in her liver are gone, but she has developed some small nodules. The Onc thinks its regenerative nodules. Apparently that can occur when you have liver damage. But of course he can't rule out it being cancer. Just doesn't think it likely given the continually improving blood work. MRI's are really lacking in their ability to tell you what something is. So many diseases produce similar imaging.
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Good news overall, Timothy.
What kind of dose Xeloda is your wife on? Still 14/7? How high of MGs? There are many ways to take this drug. I think many times the mistake of some doctors is thinking more is better. Depending on the individual, it might not be the case.
With those low CA numbers, I would think a reduction in days on vs off would help with the side effects. My sister at one time was over 2100. Her last blood work, which is done monthly, her CA was 30. She has been on Xeloda for going into 4 years. She is down to 4 days on, and 7 days off. She is having some problems similar to your wife with low WBC, etc.. The mushroom supplements are interesting.
Thanks for the info and updates.
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My wife is currently taking 1350 mg xeloda, twice a day. They started her out on a much higher dosage, she has gone through a couple of dosage reductions. She had really bad hand foot syndrome initially, it came on pretty quickly. She also got ascites, seemingly a reaction of her liver to the cancer cells dying, as it only came on once the treatment began to work. Her tumor markers have fallen from a high of CA15 450 and CEA 390 now down to 20 and 40 respectively. They fall roughly 20% every single cycle of xeloda. She has now been on for 8 or more months.
We did try one week on, one week off, and it did seem to improve her symptoms and energy. The Onc didn't approve of it, my having discussed it with him. Because of the timing of her blood tests, and the observation that blood counts seem to be worse 2 weeks after the end of a cycle as opposed to 1 week after the end of a cycle, my wife went back to 2 weeks on 2 weeks off. It definately is harder on her being on for two weeks straight. She is leaning towards going back to 1 week on 1 week off again.
We haven't found any supplement that boosts platelet counts. We've tried a lot of things, pineapple, bromelain, papaya leaf extract. No change in platelet counts. It's likely a function of her enlarged spleen, that stems from her hepatic hypertension, that comes from the liver blockages induced by the cancer.
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I posted for the first time about three weeks ago, but did not get an answer. I hope you don't mind if I repost again in hopes someone might have an answer. It's been a very stressful month for me since I've been hospitalized twice and I've had 4 Thoracentesis done over 3 weeks (they took a total of 4000 ml out). I have finished my first cycle of Xeloda and start cycle 2 on January 5.
Thanks in advance, Zoe
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I was diagnosed with lung mets at the end of October and since I didn't qualify for a immunotherapy clinical trial, my onocologist is putting me on Xeloda starting this week. I've been reading everyone experience but my regimen is a little different. Three pills morning and night-daily dosage is 3000, but I'll be 2 weeks on then 2 weeks off. Is anyone doing this timeframe? Or is this something I need to discuss with my onocologist.
Very stressed out and hoping in helps with the two orange sized tumors in my right lung.
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Hello Zoe,
Sorry you didn't get a response the first time. The standard timing is 2 weeks on and 1 week off. Some have switched to (including me) 1 week on and 1 week off (due to blood counts going too low; after my first 2 weeks on I had to take 2 weeks off to recover the counts). Certainly discuss your concerns with your oncologist. Please don't stress too much, I personally think any of these timings could be effective. Hope you are feeling well today : )
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I have no advice but wanted to offer support. I am on my second cycle at top dose 2150mg 2 times a day, two weeks on and one off. So far mostly tiredness is my main SE.
When I have questions that seem (to me) too neurotic for md, I have a favorite ARNP at the cancer center who will answer any question with great grace. She often confers with docs and gets back to me.
I hope xeloda shrinks your tumors fast.
Peace
Mary
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Zoe, my wife's oncologist recommends 2 weeks on, 2 weeks off, to aid recovery. It's unorthodox, but it does work. In comparison though, my wife responds equally well to one week on, one week off, and has less side effects.
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Thank you everyone for the responses . Timothy, I'm glad my onocologist isn't the only one who has offered that schedule. She's very well respected here in the D.C. Area so I thought there was some reason to offer 2 weeks on/2 weeks off
My biggest issue is the nausea right now. I finished Thursday and my stomach is still bothering me.
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Dosage and schedule are still experimental with this drug. I see University of Kansas Medical Centre is conducting a trial of one week on one week off vs 2 weeks on 1 week off. Might have results in a year's time to settle this question.
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tychee- nausea tends to even out after the first few cycles. But do take solids with food to help. And I assume you have a Tina uses Meds on board but if not ask for them. If you do, you can try a different kind.
I am in 2 weeks in, 1 week off 3 pills in am, 4 at night (3500 mg)
Hang in there
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I am having severe nausea with my Xeloda. I am one week on and one week off. I still had nausea on my off week.
Leftfoot, I did not understand your advice for nausea. What is med's on board?
Thanks,
Robin
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Sorry for the confusion. I shouldn't type after no sleep.
I took zofran with every dose of xeloda for the first 3 cycles. if zofran doesn't work the MO can prescribe something else.
I know this doesn't work for everyone but it does help many.
Sorry that you feel so poorly.
There are others who have had success with some other methods.
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Left Foot,
I'm taxing the zofran with every dose of Xeloda too. I still have some cramping and usually sitting with a heating pad for a half hour on my stomach help quite a bit. I usually end up snoozing after the dose too. Just so tired afterwards.
Visited with the doctor this afternoon and they want me to go get my lung drained again this week. They want to do it before it gets too full and they can't take all the fluid out in one go.
Zoe
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hang in there Zoe. In the end you will decide what if any sE you can accept. I hope the nausea gets better for you. Xelida is effective but can/does have some SE that are hard to deal wit
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Thanks! My MO did give me zofran and I take it before each dose. But doesn't do a thing. I have no appetite and not much weight on me to lose. I also have terrible heartburn. I am having an ultrasound on my abdomen tomorrow to check for gallbladder trouble. I would take just about any side effect over nausea. It ruins the entire day.
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Zofran doesn't do squat for me...the only thing that helps is medical cannabis, and it lasts for several hours after it kicks in. I notice nausea is worse on off week too. That's because the toxicity levels build up and it takes days for the levels to come down.
HF syndrome really bad even on my off week this cycle. Lots of tingling, swelling, and can't make a fist. I'm on tenth cycle so I guess toxicity has really built up.
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I wish I had access to medical cannabis! This nausea is killing me.
Robin
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Sometimes you have to try different anti-nausea meds. I have an old friend who had BC 10+ years ago, b4 cannabis was legal here, and she had to try a few different meds b4 she found one that worked. Keep pestering your MO and try something else ;o).
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Popping in to say hello and update... I'm wrapping up my first two week cycle of Xeloda. (Knocking on wood) I'm doing pretty well this first round, although I know X side-effects can build up, I'm finding fatigue to be the only issue which I resolve with a nap.
I do hope this treatment is working. My back with tons of mets, is killing me with pain. I cannot recall if I read that tumor flairs from cell death cause pain, I think I read that here somewhere. If that is true, then X is working for me.
Wondering when your oncologists ordered your first scan after starting X.
Thank you for your support and experiences. It helps to have others in the same situation and to understand.
Happy New Year - I hope 2017 is a healthy one for all.
Amy
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They monitor my wife through MRI. She had an MRI around 3 months after starting treatment with xeloda.
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I am having a Pet Scan/CT on friday. I usually get a scan every 3 months but this time it was only 2 months after starting Xeloda. Maybe because of the new liver lesion.
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So I'm thinking about asking for portable oxygen tomorrow. I'm so tired of sitting on my couch doing nothing or slowly walking around my house. I want to go out to lunch or over to a friends house for a night with the girls, but I feel so crappy. Are the onocologist usually open to this or do you have to be in dire straits for them to let you have it.
Zoe
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Amy Q: My back has been killing me these last few days, too. Not sure if it's the cold weather or not. (I also have degenerative arthritis and bulging discs in the lumbar area, so that could be contributing to the pain.) I have read that cell death can cause some pain, but forgot which thread I read it on. Heating pad and/or massage helps a lot with the back pain, but at times it's hard to sleep at night. Ask your MO for better pain meds. It's all about "Quality of Life" for us Stage IV gals. I use a cannabis balm that helps take the pain down a notch or two. I try not to take too much of anything as it can compete with the liver pathways when I'm doing Xeloda.
I was really scared the other night because I started having a little bit of that searing "nerve" pain that just shoots thru your spine. I had that kind of pain really bad in April when I was initially Dx'd, and I hope to God it never comes back (had radiation to get rid of it). Anyway, I went to the Nutcracker w/my DD on Saturday, and when I got back from intermission, I plopped myself back down in the seat a little too hard and thought, "Uh oh...shouldn't have sat down that fast; I'll probably pay for this." Couldn't sleep hardly at all Monday night, but last night was a little bit better. I'm just afraid I may have caused another compression fracture...I already have FIVE of them back there. I've heard when you have spinal mets you can get a fracture just from bending, twisting or rolling over in bed the wrong way
. Anyway, hope your pain is better. I'm camped out on the La-Z-Boy AGAIN with the massage and heater units going full blast.
Lita
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Amy Q- had scans 4 months after starting Xeloda
Lita- I am on cycle 11 of Xeloda so we are about at the same point in treatment..have you tried any steroid creams for the HFS ?- I had dramatic improvement after using it for a week and my ONC decreased my dose for this cycle. I can walk again without being in pain :-) Will try to remember to post the name of the OTC moisturizer the dermatologist gave me also
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Lita, I have had my share of bone and liver flare pain on Xeloda, continuing throughout my entire course on Xeloda. Not just the first few cycles. I hope it is flair and not another fracture.
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