Xeloda for "Maintenance" purposes (not Stage IV)
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How are you doing Serendipity?
I saw a video today about TNC non-basal benefitting from Xeloda vs basal. I’m going to ask my Onc about what type I am.
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Hi Mamacure! I'm hangin in there the best I can. I have good days and bad days. I was put on gabapentin to help with the neuropathy, it has helped my fingers a bit, but not so much my feet. Still suffering with terrible headaches, but it's not related the Xeloda as they started during rads. Saw MO today, she's going to have me do another Brain MRI to make sure nothing was missed. She'll put it through and we hope the insurance will approve it. She doesn't want to decrease my dosage of X. If I don't have any improvement or if I can't handle it anymore, she'll have me stop X completely. I'm going to do my best to just deal with it as I want all the protection I can get to prevent a recurrence.
Let me know what your MO tells you about the basal/non-basal, you've peaked my interest.
You should be about half way done with rads right? (sorry haven't kept up with the Nov. thread) I hope you are doing ok.
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Hi Serendipity,
Wishing the best for you with the MRI!
I took Gabapentin, hated it. I felt out of it and loopy. Maybe it was unrelated. Who knows?
What is your dosage? My MO reduced mine a couple of times I think. It is so hard to remember those details.
Blue
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Hi Bue!
Thanks for the well wishes!
I'm taking 3000 mg, 1500mg the morning and 1500mg at night. Last year at this time my MO had already reduced my dosage of X several times.I was surprised she didn't yesterday. We'll see what happens in the next week. The SE's seem to hit me really hard on my days off.
I don't feel anything on Gabapentin, other than it has helped my fingers a bit. The first night I felt sleepy, but nothing since then.
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Hi Serendipity,
How are u doing? Hope you are managing ok. I heard from 2 other ladies complaining of headaches during xeloda, so you are not alone in that. I got my first prescription of X in the mail. I’ll be taking at least 3,300 mg per day. I plan to do 8:30 & 8:30 or close to that. Maybe oatmeal in the morning and not sure about evening food. Maybe peanut butter toast. Not sure when I will start but it should be at least a month away.
Take care.
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Hi Mamacure!
I was just about write and ask how you were doing, wondering if you had started yet? Did you finish rads? Hoping everything went well!!
The headaches are no fun, unfortunately they are worse on my week off. I had several nose bleeds over the weekend, which was part of my 7 days off. I'm hoping it was just dryness of the air in the house because of the heater. I started my 3rd cycle yesterday.
Several other SE's have started to present themselves; loss of balance is one of them. Had a fall last week and hurt my right arm (bad side); neuropathy is getting worse, especially in the feet, bone pain, muscle weakness and I'm struggling with my fine motor skills, dexterity is being affected. My PT and massage therapist sent notes to my MO as they are concerned; I'm not progressing at all; I'm actually worse then I was a year ago. Ortho put a call in to MO too
. I have a feeling she's going to take me off. No signs of hand/foot, thank God! I'l finish this cycle and then have my appointment with her, assuming she doesn't call me before.As far as eating, I don't have much an appetite these days, so in the morning I'll have a piece of toast and then take X about half hour later, 8:30/9am and then in the evening, around d 8:15pm, I'll do a piece of toast with peanut butter or if I haven't eaten much earlier in the day, a small bowl of cereal and take X 8:30/8:45pm.
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I’m sorry to hear that Serendipity!! I hope your arm from the fall is ok. Oh dear.I get dizzy at times & I haven’t even started yet! I finished rads ok, no major issues other than some peeling. Scar area looks angry.
Do u think your MO will do a dose reduction before taking u off? After reading, I am more & more convinced that 7 day on 7 day off will be best. Less SEs & less incidences of dose reduction or stoppage. Also less toxic to the body. I’m afraid my MO won’t go for it but I’m going to ask again.
Take it easy Serendipity, sending you hugs!
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Thank you Mamacure! Glad that you are done with rads and that everything went well! My scar looked really angry after rads too, but now that everything is healed and some time has passed it actually looks better than the no rads breast scar (which doesn't look too bad), my rads side the scar is barely noticeable. Funny, how that works.
I don't think my MO will do a dose reduction, maybe she'll change to the 7/7, worth asking. The fact that my SE's seems to be worse on my off days is telling of how much my body is not liking X. Like I said, I'll finish this cycle and see her and see what she wants to do. It was explained to me that my percentage of possible recurrence wwouldl increase 3% if I didn't take Xeloda; that was last year and not having done rads. Well, the recurrence happened within a month. Now I did rads and I'm hoping that it blasted this beast. I'd like to know what she thinks about my chances of recurrence now. I'm conflicted and stressed.
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Wow 3% only… plz keep us posted on what your MO says Serendipity. Hope you feel better this week.
Where does everyone get Xeloda? Specialty online pharmacy like ACCREDO?
I feel like I am getting ripped off and trying to find if local pharmacies will carry it or generic form. Thanks.
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Happy New Year!
Mamacure - I see the MO in two weeks and will see what my options are. If indeed it is 3% than the suffering is not worth it to me. If she'll switch me to 7/7, I'll try and see what happens.
I get my Xeloda shipped to me from my medical group's specialty clinic. I know none of my local pharmacies carry it. Good luck, hope it works out and doesn't cost you too much.
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Completed 3rd cycle on Monday. Saw the MO yesterday, she decided to give me an extra 7 days off. The bones in my feet feel like they are breaking with every step I take and my headaches are so intense my vision has been affected. I see her again in two weeks and we'll discuss if I continue, if so, same dose, maybe 7/7, a dose decrease or quit all together.
I had MRIs of both shoulders today ordered by the ortho. I don't know if I can blame Xeloda for the shoulder pain or if it's a combo of SE's from rads and X. Most of the other's that I've "spoken" to have tolerated X. Some complained about fatigue, headaches and joint pains, but my goodness, I'm hurting so much. I'm so frustrated. I want to throw everything at this to prevent another possible recurrence.
Mamacure - have you started X?
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Serendipity,
I’m so sorry that the side effects from Xeloda are so intense. I had to have two interruptions while on Xeloda, but my side effects were not as severe as what you’re dealing with. Hopefully, your MO can figure out a dosage that works for you.
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Oh Serendipity, so sorry that your struggle with X continues! Great job completing 3 cycles, anything helps. I’m sure those 3 cycles were hell. Cancer really is living hell at times.
NorCal, glad to hear that you had better go at X. That helps a lot to hear it
My wbc went up ever so slightly so I avoided bone biopsy but if it does not go up again next week, I have to have it done. I’m supposed to start X in 2 weeks if wbc is ok. My MO is so scary. I have the first cycle ready to go, supposed to take 3,300 per day but may do 3,000. I’m very worried and also concerned that any cracking on the left hand will trigger lymphedema or infection. Eeek! I’ll be happy if I can tolerate some of the cycles even if I can’t finish. Not sure why wbc is down it was fine after my surgery. Hang in there!
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Serendipity and Mamacure--I come by to check on you both and think about you often.
Serendipity, I feel so bad that you are struggling; those bone pains sound so awful. Hugs to you and I hope and pray it gets better.
Mamacure--I hope things are going OK for you. I hadn't heard you mention a bone biopsy; that sounds scary and I hope you don't have to have it done. Yes, cancer is a damn nightmare. Take care and hugs to you, too.
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Thank you all!
NorCalS - It truly has been a struggle and I spoke to my MO today and I don't want to take the extra week off. Cycle 4 is supposed to start Tuesday. I will check-in with her on Monday. She does not feel that any of this is permanent.I just want to get this over with. After this next cycle then it's only 4 more to go. If she insists on the break then I'll go along with it.
LW - hope you are well!
Mamacure - hoping your wbc goes up. Be sure to keep your hands greased up. I'm constantly putting on a beeswax salve. Everything I touch is marked up, lol.
I've been a bit nervous as the lab techs are not able to do my bloodwork on my left side and are using my right side for lab work. I pray that it doesn't cause LE.
MRI from yesterday shows that I have capsular contracture on both sides and a torn rotator cuff on the right (bad side). That def explains some of the pain in the shoulders.
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Ouch Serendipity! How did those tears happen? Hang in there & I hope 4th cycle of X is tolerable. I like beeswax salve, will have to get some of that.
LW! Always good to hear from you! I think of you often too. I’m hoping bone scan is nothing & I can move on to Xeloda. I just ordered some fruitcake from Texas for hubby. He actually likes fruitcake!?! Lol.
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Mamacure - thanks! I hope so too!
They suspect the tear happened during the BMX or the exchange surgery.
When is the bone scan? Or did you already have it?
The beeswax salve was a gift sent from a friend of mine in Maine and it is amazing. I order it from Etsy, it's a bit pricey, but so worth it. If you'd like the info, let me know.
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Hi Serendipity,
I started Xeloda this morning. My dose is 3,300 mg per day. I asked for 3,000 since my wbc are still low but no go. I took 1 Pepsid with it in case & 1 vitamin B6 earlier. I hope no nausea. Got Imodium ready for diarrhea. My wbc went up slightly so I avoided bone biopsy again! They had the kit ready next to me so I was so relieved.
I hope you are doing well, have you seen your MO? Yes please let me know the link for the Etsy bees wax salve. I plan to moisturize my hands & feet very well. I hope it goes fast & that wbc stay high enough. I have ahard time taking pills so glad these are not monster pills but it’s still a struggle. Applesauce helps them to go down. Take care!
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Hi Mamacure - I hope everything goes well on the Xeloda or you and that the wbc counts rise. The MO's tend to start off on higher doses. I think the pills are huge, but I have no issues taking them.
I see the MO on Wednesday, we'll see what she says. I see the ortho on Thursday for the rotator cuff and the PS next week.I have a feeling she'sging to keep me off untilI I see the PS. My aldoerm seems to have detached from the implant, making the whole shoulder pain worse. If they're going to do surgery on the shoulder, I'm hoping the PS will jump on board and do everything at once. And since I have to be Xeloda free for 30 days prior to any surgery, I'll fall right in the time frame. All this is wishful thinking though.
I thank God I do to have the diarrhea, X has actually made me regular as I struggled with constipation; the one good thing about it, lol.
The name of the store on Etsy is Maine Street Bee. I love her products. Melissa, the owner, is such a sweet person.
Keep me posted on how you're doing. I really hope it goes smoothly for you!! {Hugs}
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Thank you Serendipity! I hope too that you can get everything done in one surgery. I’m sorry that your shoulder was damaged. Ouch. Constipation was the worst with chemo for me so I hope it does not come with X. I skipped pepsid this AM to see if I need it. I hope things go as you plan with the MO & PS. Hugs to you too
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Mamacure - just wondering how you're doing? I hope you are tolerating it ok with no/minimal SE's.
I was supposed to restart today, but the ortho decided that he's going to address the capsulitis in my shoulders next Friday, which will require me to be put under general anesthesia, so it looks like I won't start my next cycle until 2/11. She did, howeve,r agree to change me to 7/7.
My fingers are just now starting to peel, nothing terrible though. I lost my finger prints from the beginning. I find it odd that I've been off for over 2 weeks and I'm just now getting a bit of H/F.
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Hi Serendipity,
I hope your shoulder surgery goes OK and you can put it behind you.I’m glad to hear that you are on seven days on seven days off I hope I can do that too later on. It’s been almost 4 days and so far so good. I don’t like having to eat so late at night. So it sounds like your hand and foot issues started after cycle four. I ordered silicon socks just in case. Take care and thanks for the Etsy link!
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Mama- glad to hear that everything is good so far. Seems to be tolerated by so many so well, I really pray it is for you.
H/F started after 3rd cycle. I won't start 4th cycle until 2/11. I'm thinking maybe I should get some silicone gloves now. I have been religious about greasing my feet up everyday and wearing the silicone socks and no issues with my skin on my feet, thus far.
Re; eating. I eat something in the morning round 8-8:30 and then aim to eat a piece of toast w/peanut butter, yogurt or fruit around 7/7:30pm. MO and pharmacist both told me it was ok to take10 hours apart, which makes it easier at times for me.
I hope you like the salve, that is, if you buy it
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Wishing you luck on your Xeloda course Mamacure! Glad it's good so far. I start next week. Eating at odd times does sound crummy. Thank you Serendipity for your food schedule though, it sounds like something I could do.
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Hopeheal - I stressed out last year because I was sticking to 12 hours apart and told the MO I wanted off as the schedule was too stressful, lol, that's when she told me I could do 10 hours apart. I'm not one who likes to eat anything too close to bed time. I hope it works for you and that you do well with no/minimal SE's.
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Hi Serendipity & HopeHeal,
I heard that 10 hours apart is ok too. I hate eating early in the am & late at nite but this too is temporary. I eat oatmeal with nuts in the am and yogurt with granola before taking the pm dose (after dinner). I take vit 6 before the am dose. I heard SE start at cycle 3 so that makes sense Serendipity. I’m glad to hear that your feet are doing good. I better start moisturizing better. I hope my gut won’t be too much affected. HopeHeal, what is your dose if you don’t mind me asking. I hope it goes smoothly for you. Have a nice weekend!
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Hi, starting week 2, some headaches starting in the afternoon and thru the evening. Keep forgetting to take vitamin b6 in the morning.
-moderate headaches
-mild nausea, not bad
-Slight drop in energy (still able to walk, don’t want to do chores
-Chemo gas is back ugh
How’s everyone doing? Hopeheal did you start?
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Mamacure - Make sure you are drinking a lot of water I notice that staying very hydrated makes a difference.
Funny enough my h/f on my hands seems to have progressed, not horribly, but some cracking of the the thumb and peeling on other fingers, and I've been on a break for 3 weeks now.
If my feet didn't feel like they were breaking I'd be walking, I didn't think I'd still be struggling with SE's like this, but I need to get through this and get it done.
Hoping things don't get worse for you!
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Ouch ouch your feet, sorry to hear that! I’m trying to get my walking in now before h&f issues come up. Good advice, I’m trying to drink more water but struggling. Thanks Serendipity.
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Serendipity and Mamacure,
I walked 3-4 miles almost every day (took a day off the day after infusions) during AC-T, lumpectomy and radiation. During Xeloda, I had to decrease to 2 miles every day, then near the end of Xeloda I walked about 1 mile and was down to walking 2 miles only near the end of my week off and beginning of new cycle. I had to give my feet a break. For me, I had foot pains at the end of the day if I pushed myself too hard, so I knew I had to take it easy for the rest of the cycle. Try to do what you can, but take the break when you need to. My MO made me take an extra week off half way through to prevent H&F from getting worse
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