All about Xeloda
Comments
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Okay, they got me in for STAT MRI's today and I've got a fracture vertebrae and a mass pressing on my spinal cord from t7 to t10. The T9 mass has grown to encompass from T7 to T10, so I wonder if that means the Xeloda isn't working??? I've got stronger pain drugs now to help me through till I find out the next step. I'm sure will speak with the onc tomorrow on what the next step is. I've already had T6 to T10 radiated so not sure if that can be done again? Cement for the fracture??
This is another bump in the road but I know I am going to be okay. Will keep you posted.
Linda0 -
Karen, congratulations on the good scan.
I think the sun issue was answered but not really about coloring the hair. I have always been told to not put color on your hair while on chemo. You don't know how the chemicals will take to hair follicles that have chemo in them. My hair is so thin, I am afraid I would make it all fall out by the chemicals.
The one thing that I have had happen several times while on Xeloda is severe indigestion hitting me at random times. I mean bad pain that goes up into the neck.. I can use several Tums and eventually get it under control. It doesn't happen often but is darn scary when it does. Writing this must have triggered a suggestion about the indigestion - going to have to go get a Tums.
I see a pain management doctor for my spine issues. In fact, when Medicare approves the procedure, will have a radiowave nerve ablation procedure to my back. He doesn't give me my pain meds though; leaves that up to my oncologist.
I am on 90 mgs. Morphine 3 times a day and have fast acting Morphine for break through pain - 15 mg. tablets and can use up to 45 mgs at a time. I have had to do that sometimes recently with my back and shoulder pain. My old oncologist would always ask me about my pain and how much I as having to use the break through but the "new MD" that I am seeing now, leaves it up to me to tell her about my pain. If you aren't getting relief, then tell them. I was switched from Oxy to Morphine because of the cost. My Oxy was costing me $300 for 30 day supply vs. $90 for Morphine. Just don't hurt.
Linda, just saw your note. To say that was a surprise would certainly be an understatement. I know there is a max of rads you can have to an area and I have reached that with my right femur but hope that they can still give you . ome to shrink the tumor - then perhaps a surgical removal and cement or similar procedure. No wonder you are in pain !! Glad you have better pain meds. Keep us posted.0 -
Hi, Hansaim, I'm in the same position. I've been on 2 rounds of 14/7 so far. I didn't "get" how tender the feet and hands would be, and how susceptible to abrasion IF you get hand and foot syndrome, which everyone doesn't get. I'd been so lucky with side effects, I hoped I would dodge the HFS, but I got caught this time.
There's lots of good advice here. Mine is to think of the skin on your hands and feet as being as delicate as a pair of hosiery, and treat them as gently.
Calico0 -
Linda, bummer news. So sorry you're having to go through this. I have refused rads so I can't speak to what's next. Would cyberknife be an option?
I'm glad some of you are addressing the pain issue. I've been on Oxycodone for the hip pain. Seemed to make me loopy in the early going and worked on and off. Lately nothing is working. I'm not sure what to ask for next.
Sue
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I've got an appointment to get my hair dyed next week. Is that a no-no when on chemo???? I'm on Xeloda right now.
Thank you!
Calico0 -
I just asked my MO about this today. She has decided that xeloda is my next treatment. I had a long list of questions for her, and one was "can I still color my hair?". She said yes, it was ok to do with xeloda.0 -
I had a PET scan last week, and found out that I now have a small spot on my liver. Met with my MO today today, and she wants me to start xeloda. Faslodex and Aromasin seem to have stabilized my lung nodules and bone met, but I've had progression to the liver, so we're moving on to something stronger that will hopefully take care of business. I've read through the thread, but am wondering if there's a list anywhere of helpful hints to deal with SE's, etc. I was given some info today, but it was pretty general, and I'd love to know info that's based on BCO members' experiences. I would like to know brand names of remedies that have worked for you, foods that are good and bad for SE's, and anything else that might help with this treatment.
I had really hoped that the hormonals would have worked longer, but I'm encouraged by your posts that xeloda has been so effective. Thanks in advance for your suggestions!!!0 -
Thank you, Hollander! So glad you thought to ask about the hair coloring.
I've been wondering how I was going to manage cooking with my raw right thumb and tender finger tips. I tried using surgical gloves to cut things up and that seemed to work fine, and my hands aren't any the worse for wear. Friction seems to be the big no-no for me with the hand-foot syndrome.
Calico0 -
I finish my first cycle of Xeloda tomorrow - 14 days, 1800 2x a day, 7 days off. I was concerned about side effects too. My onc prescribed Zofram for nausea. So each time before taking the Xeloda, I ate a banana, took a zofram, and half hour later, swallowed the dose with a big glass of water. I drink a lot of water during the day. And I never took the stuff on an empty stomach. The only side effect I've had is a bit of constipation (took a stool softener daily, that helped) and some fatigue. No HFS as of yet. I run/jog and work out every day, and I gotta say my lungs feel a lot better on this stuff than the Tamoxifen I was on for 6 months (Which didn't work! I had more lesions in the lungs, and progression to the liver on Tamox and Zoladex shots and i hated those constant sweat-sessions! And dammit I want my estrogen back NOW! I miss my periods and the crazy mood swings of PMS!)
Its going to be a while before I get any scans, but I have to say this Xeloda has made me feel like I did before I was Stage IV.
Hope the the next round is just as easy - good luck, my Lady-Friends! I'm reading every post and wishing the best for all ~0 -
RangerMom - I'm sorry to hear about the new mass. Hopefully they can get things under control for you quickly. Hugs to you as you travel over this bump in the road.
I'm on my last day of the first cycle with the increased dose (1500mg twice daily) and I'm seeing some signs of HFS. The balls of my feet feel like I'm walking on hot coals. Any chance I get, I take off my shoes and put my feet on a cool floor and it feels so nice. Hopefully the symptoms will go away during my week off and take their time returning next cycle. So far Xeloda seems to be working for me, so I'm willing to put up with the discomfort for now.
Hollander -- someone pointed me to this BCO page for info on Xeloda when I started on it. Hope it helps you. Xeloda tips0 -
rangermom - also so sorry to hear about the progression (and pain). Hope that grandchild comes soon and that your MO has more magic bullets in his/her arsenal.
Hollander - in the midst of my 2nd cycle of xeloda; I've been using eucerin on my hands and feet at night and trying to keep my feet cool. The eucerin is sticky,but you can always put a pair light cotton socsk on. Taking vitamin B-6 for possible peripheral neuropathy; an occasional Zofran for nausea, and Feosol for low iron (I tend to be low iron anyway). The Feosol is good if you have a sensitive tummy.0 -
Thanks for all the suggestions, ladies! I'm getting my xeloda remedies together. I feel like I'm packing for camp! But at least I'm feeling more prepared.
I do have a question about socks... I don't usually wear them, unless I'm going for a walk. I'm guessing I may need to change that behavior if I start to show signs of H/F, just to keep them moisturized, and separated from bacteria that might be lurking on the inside of my shoes. How have you all handled this? Thanks!!0 -
It's funny what passes for good news for me these days, but hearing the onc say I can stay off Xeloda another week to give the HFS time to recover, and then go on a 7 on/7off schedule is a relief. The HFS didn't kick in until Round 2 Day 9, so hopefully this new schedule will be better.
xoxox
Calico0 -
Starlover, I'm thrilled you've had such a good experience with your first cycle of Xeloda. You're on a very low dose. My first experience with Xeloda was taking 4,000 mg per day! No wonder I suffered with hand/foot syndrome! I suspected 4,000 mg daily was too strong for me. I'm 5'5" tall and 115 lbs.
The reason I'm writing is because you mentioned waiting 30 minutes after eating to take your Xeloda. This seems to be confusion caused by the Xeloda manufacturer. There's no reason to wait 30 minutes. I imagine women finishing a meal, looking at their watches (or setting the oven timer) and waiting around to finally take their medication. Xeloda should be taken either WITH a meal or within a half hour of eating. The main idea is that you're not taking Xeloda on an empty stomach.
I, myself, take my Xeloda immediately after I finish eating. I've never had any nausea or any stomach issues by doing this.
Just thought I'd mention it. My mother took Xeloda for gastric cancer back in 2009 and I distinctly recall her counting down 30 minutes after finishing a meal before she thought she could take her Xeloda. Wrong, Mom! You can take it in between bites of your meal!
The instructions "take within 30 minutes of a meal" can be easily misunderstood. It doesn't mean to eat, wait for 30 minutes and then take Xeloda.
Kessala
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Kessala, the pharmacist at my MO's office said the same thing to me yesterday. Take the xeloda with, or just after the meal. No need to wait 30 minutes. I start my first cycle on Friday-- hope I have your luck with no stomach issues!0 -
Linda, I love your positive attitude! I will be so happy to hear about your new grandbaby!! He/she is going to be a real blessing and help you feel better about everything!!! I have little twins--my little granddaughter came up to me tonight and gave me a big hug and kiss and told me she loved me. Then she grabbed a pillow and put it behind my head and covered me up w a blanket. She said that she knew I wasn't feeling very well. They are such a precious gift!!
I have joined the lung mets discussion board since I had to be taken off X. I didn't want to have to stop the treatment but my onc said w my SE he had to. He said he might want to go back to it at a later date. Since X--on 14 days, I haven't had the breathing issues and he said my lungs were clear. I am starting to cough more now so we'll see.
Good luck to all of you and goodnight to all! I'll keep checking in though from time to time!!
Judy0 -
A friend talked me into trying Eucerin for Eczema for the HFS and of the 4 creams I've tried, it seems the best.
Both my thumbs are peeling and painful. Wrapping them in multiple bandages a day was a pain, so I'm trying these finger protectors I found in the Band-Aid aisle at the drugstore. I applied some antibiotic ointment with painkiller in it, and slipped the finger protectors on my thumbs. It just might be an improvement.
xoxox
Calico0 -
On my week off after 2 cycles of Xeloda and all tumor markers have dropped like a rock. From 700's and above down to mid 100's! Side effects are totally worth this!
Onc said to try emu oil on hands and feet. Apparently, it works wonders. B-6 is generally helping but this week the ends of my fingers are a little sensitive. Swelling in legs, ankles and feet is slightly better. I'd say this and the lung of fluid have been the two major side effects I'm hoping Xeloda will help.
Start cycle 3 tomorrow! I definitely feel better with the tumor load lessened -- markedly, in fact. Don't have to go back for more tests now for three months! Hubby and I had a little celebration last night. Every good bit of news is worth a celebration in this battle!0 -
Congratulations, Rockknife! Your story is very encouraging!
My husband looked at my peeling, raw thumbs, and he, who never worries about anything, said he thought I should see someone at the onc's office, so I saw the nurse practitioner today. I told her I had no point of comparison as to whether my thumbs were particularly bad, and she said, "I've seen worse." I guess that was a comforting statement?
So she prescribed an ointment used for burns, and didn't like the rubber finger protectors I'd gotten because "air needs to get to the (raw) area", which had occurred to me, too, but, geez, I have to keep them covered with some kind of bandage to do anything. I guess I'll just have to be a princess for a while.
As far as restarting Xeloda, which I'm supposed to do next Wednesday, she said if the thumbs weren't better by then, to wait until the weekend to restart it. I asked her what to do if the thumbs weren't better by next weekend, and she said, "they will be." I hope she's right because, at that point, I will have been off the drug for over 2 weeks, after onlly 2 cycles.
xoxoxox
Calico0 -
K-Lo I would appreciate it if you could post your information about Xeloda...I am struggling with GI side effects expecially. Thanks0 -
I am so glad that I just read about the 7/7 of Xeloda. I have severe GI effects from the Xeloda that worsen as the days go on. I am also going to ask about an RX to take the Zofran before taking the Xeloda. I am so thankful that I found this on line forum. I've been very depressed and now feel as if there is hope.0 -
having a brief look at this thread, I feel the need to suggest not dying your hair too harshly.. Experience talks
My almost a year of platinum blond started getting weaker.. My hairdresser suggested we move onto organic dye, which unfortunately doesn't work as good as the good old bleachers.. While dying is Ok, the hair follicles aren't strong for a long run of harsh chemicals..
Meanwhile I am still enjoying my current color for now
Ebru
Oh started 12th cycle.. So far so good.. Fingers crossed for many more cycles..0 -
Kessala, thank you for the info! That makes it easier for me. So good to read all the positive reports, I start my second cycle Wednesday.
Big warm hugs to you all!
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Kessala, thanks for the info. Are you taking any anti-nausea or just taking the X with food. I'm one of those who's been waiting the 30-minutes after taking the anti-nausea, then food, then the X. Glad to know.
Big mom, welcome! I'm on the 7/7 at 1500/2x's day. I've had relatively few, if any side effects from day one. I actually have a bit of a funny stomach on my week off but I take an anti-nausea and it seems to settle down. Watch fatty foods on your week on. I also was told via this thread to take the anti-nausea about 30-minutes before taking the X. It works for me so you might try it. Zofran worked better for me than compazine. I keep the comp. for my week off and take it if I get the funny stomach.
Calico, I've had no hfs. I do get splits near my nail beds on a finger or two, late in my on week. I went to Walmart and bought a box of vinyl gloves (@$10/100). When it's just my thumb, I cut off a thumb from one of the gloves and coat it in Heel Tastic (Walgreens or as seen on TV $10). I love the stuff and it's all natural/organic. I use it on my splits and my craggy heels. When my heels get dry I coat my feet with the stuff and then put on my slipper socks. Within a few hours the cracks are gone. I've also coated my hands at night and wear the gloves until morning. Best remedy I've found so far and not near as expensive as some of the other things I've looked at.
Blessings to all. Sue
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Milehighgirl, I have Zofran in the house just in case I have nausea but I've never used it. I just take Xeloda right after finishing a meal and I've never had stomach or digestive issues at all.
Kessala
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I'm starting cycle 5 tomorrow, 1500 mg x2/day, 14/7. I'm constantly exhausted, my hands are cracked and peeling and the balls of my feet feel like I'm walking on hot coals. But today I was at my onc's office and saw my latest PET scan, compared to one from July. The 5 black spots in my liver now show as 3 grey ones. My right hip which used to be a mass of black is now a soft grey. There are even some light spaces in between all the black at the top of my spine now.
I will take the hand cracks and sore feet and exhaustion. Yes please, give me some more if these results will continue!0 -
Woooo hoooo, Kebab!!! Wonderful news!!!! May you have much more of the same!!
xoxox
Ellie0 -
so great to hear this news.. Keep it coming!!
Time of tubs of eucerin!!0 -
Hi Kebab. Great news. I finish my fourth cycle on sunday. Running a week behind because I had to have an extra weeks rest so that hands and feet could recover. Fourth cycle dosage was reduced and hands and feet have not been so bad. I get my scan tomorrow and the results on 22nd November. Will let you know outcome. Keep positive. I keep talking to the big guy in the sky and I feel sure he's listening.
Big hugs
Helen0 -
Hi rangermom. Not heard from you for a few days. Hope you are ok. Has your grandchild arrived yet?
X Helen0
