All about Xeloda
Comments
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Michelle,
I am on my sixth cycle and have no side effects. We are very lucky.
Barbara
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Well Crapp Frapp
Of course the key word in there is 'Before'. Before you started X which is shrinking the breast lumps and is hopefully doing the same number on the rest.
Can you do anything about those scan results? No
Are you going to get to a point over the next few days when thinking about them is driving you nuts? Yes
Why not box them and decide to think about them around next scan time - hey Laurie great idea!
OK I know it's not that simple, but don't let shrinking lumps (evidence of good news) get trumphed by old mets scan.
Have a good weekend!
Lx
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Thank you all for the support. Yes chicadee i wish id never seen them. I know that these are pre-xeloda scans and they really shouldn't matter right now. I feel good, I have visible signs that this one is working so I should be thinking of those scans as in the past. It's just that they are the worst ones I've ever had. Your right Alesta, I'm just going to stomp them down into that box.....quick close the lid before it gets out!
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LuvRVing, it was only a couple of days into the xeloda that the nausea started for me. It lasts throughout my 14 days on and into the first half of my 7 days off. We've cut my dosage back and that seems to be helping - but I'm nausea-prone (had to be admitted during two pregnancies due to "morning" sickness!)...
I'm sorry about your scans, Frapp. But, as others have pointed out, they are pre-xeloda, right? Who knows how much of that junk's been kicked to the curb by the xeloda!
love and aloha to you all -
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So I start on xeloda on Monday. I would love to talk to someone who is on this med, or has taken this med. I hear the diareah is horrible. I start on this on Monday, and have to be at work Monday. Hoping not to have to run to the bathroom all day.
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For the most part the SEs don't start right away. I've been on it about 2 months and have had diarrhea only twice, both in my off week. Keep some Imodium in your purse if you start to feel crampy. I had more trouble with appetite and indigestion in the first weeks and then that waned. This week the hands and feet are red and getting more uncomfortable so I have to ramp up all the advice everyone has given for that. Soaking my feet as I tap this out.
We all react differently so hang in there and I hope yours are minimal and manageable.
Please tell me you don't have 50 cats!.0 -
Fiftycats - I'm a newbie at this, too. I have seven doses under my belt and so far I've not had any SEs. They may come like Chickadee says, but so far, so good. You should be OK on Monday. Good luck - hope Vitamin X is gentle on you while kicking cancer to the curb.
Thanks, Mauimom. I had morning, noon and night sickness, too but I never had to be hospitalized. I also get seasick...have you tried the scopolamine patch? I used it during DD AC/T and that along with the other anti-nausea meds worked great for me.
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Im on my 11 cycle / 7 months of X but I also do it with taxotere , so my SEs are a combo of both. In general Big D hasn't been that bad, but mouth sores and joint pain are the worse. And of course food taste horrible. Hand and feet and getting a lil more numb so ONC said to take b12 & b6 vitamins , UGH more pills to swallow
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I'm on Day 1 of my second week taking pills (7/7). I ate a good breakfast and took a Zantac with the X, but an hour later I was wretching. Fortunately, I kept everything down, but I'm so shocked that my GI issues began so quickly this time. I spent the rest of the day eatiing corn chips and drinking 7-up. I started to feel better about 7 hrs later. So, I just took my second dose of pills, after eating a bowl of cereal and having crackers and I figure I'll just go to bed before I feel sick. This is so going to suck if my experience continues this way. I'll probably have to give the Compazine a whirl tomorrow.
It's interesting how we're all reacting differently. I haven't had any diarrhea yet or hfs. My eyebrows are thinning, though, even more than they did on the Arimidex. I can't tell if my hair is. My joints are sore, too. I'm prettty sure the X is working, however, because my mets are hurting again and they had gotten better after the first week of pills.
Good luck everyone and I hope we all learn ways of coping with the side effects we end up with.
Cynthia
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Just starting the second week of my second dose and I'm still feeling crazy good. I mean, I know there are differences - my feet (especially my right foot) is much more sensitive. Not in a creepy-crawly sort of way but of way but in terms of slight achiness in my heel is I walk barefoot (and I was a very "anti-shoe" person). For my work flats I got those Dr. Scholl's orthotic inserts for arthritis (they seemed to have good arch support and the cushiest heel). Heaven in my shoes!!! Still no nausea issues but I have meds anyway because I hate throwing up. No "D" but I have Immodium stashed everywhere - pills in car, desk drawer, and purse along with liquid in bathroom and kitchen. Also next to my bed. I've only needed to take it once. No fatigue - I actually feel like I have more energy. That might just be that the stress of the diagnosis and the fall down the rabbit hole with all this in April and early May is done so I'm not using energy for that stress. I wonder if my energy level will drop before my next scans?
Actually, I do feel tired more easily at work - I find I have better concentration level for things like typing reports in the morning. My afternoon crash used to come around three but now it's earlier (12 or 1 PM) instead. The past few days I've managed to keep my early afternoon's as "meeting time", so I getaway from my desk and computer screen and physically change my location. I've also made sure to walk to meetings in other buildings to give myself a boost and will leave phone calls or other types of interaction with people for this time of day as well, as it seems to give me a boost. Has anyone else found they benefit from an activity change to increase their mental and physical stamina?
I will say I'm on a low dose of Xeloda. Only 2000 mg. My doctor might increase next round and I think I'd tolerate 3000 mg pretty well. I might ask for it - I keep wondering if it's working as well on my mets as it seems to be on my boob. My bad boob definitely feels softer still. It's made me realize how long it's been since it felt like this but the changes were so gradual (till I really felt that lump). I'm not due for more scans till August.
What made me feel sick was the bill from Sloan. $18,000. For the lung biopsy, turmor tests, and Xeloda. That was all in May. That is what they are billing my insurance company. I only have to pay $65 of that and $50 to the doctor who did the lung biopsy. It's "change your policy" time at work and even though the premiums are going up, Jeez are they worth it!!! So far, my insurance company hasn't blinked an eye about paying anything (except Lunesta - they disapproved that but I didn't really need it anyway).
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I'm starting day 2 of my second round. No side effects worth thinking about. One day on my week off I had 1bout of D but I blame that on the greasy wings I ate. My doc said most of her patients complain of symptoms during their week off.
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It's fascinating that the SEs tend to crop up during the week off. I'm just a few days into this and I am noticing a slight backache, like I've done too much of something strenuous. It's not bad, just noticeable. I take Meloxicam for severe osteoarthritis in my knees, so I'm always surprised when I feel pain anywhere else.
I started out with cold sores/fever blisters when I did chemo last summer (DD AC/T) and my MO put me on Valtrex right away. I never had another problem. So I started it up again when I started Xeloda and I am hoping I don't get any mouth problems.
Dormouse - get used to those outrageous medical bills. I have been in treatment for breast cancer for two years as of yesterday, and I am approaching $1 million in billable invoices to my insurance company!!! I don't know how people without good insurance manage...my annual out of pocket limit is $1500 (not counting doctor and prescription co-pays). I'll be eligible for Medicare in October, I think, and we are holding our breath that my DH doesn't lose his job before then. They laid off 100 people last week, he knew 70 of them. And most had been with the company as long as he has - 32 years. Paying for COBRA would be so expensive!
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Doe the HFS thing wane on your week off? Mine got fairly uncomfortable by day 6 and 7.
Day 1 of my off week and things are red and tingly. I really enjoyed wrapping my hands around a very cold glass of ice tea at lunch today. I was fairly hugging it with my finger tips. Interestingly my thumbs and big toes are the tightest and sting the most.0 -
Ladies, I'm on a 7/7 schedule. My last "on" week, I took only 4 days, then went on a break. Stopped my Tykerb, too. Went to Hawaii for a week to celebrate two of my best friends getting married. Drank many tropical drinks, went snorkeling, ate wonderful food. I had such a great time and am so, so thrilled that my onc supported my choice to take a little break and really enjoy my vacation. A fantastic time I will never forget! I actually felt 37 years old for the week, not 87.
I am a lucky, lucky girl. Back to the Xeloda grind tomorrow...
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Petjunkie - I'm so glad you had such a wonderful time in Hawaii! That is so awesome!! It's nice to feel young again sometimes.
We took the kids on a tour of a cavern today and I managed more than an hour of walking, a few stairs, slippery rocks, and bending over to squeeze past roofs without pain. I would not have been able to do this even two weeks ago. I could barely get in and out of the car then, even with advil and tramadol. It has to be the Xeloda doing it's thing. I feel pretty strong today and it feels good. It's been a long time.... And, the nausea never materialized today! X is very unpredictable, but I'm glad it gave me a break today.
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Petjunkie - so glad you got to enjoy a trip to Hawaii! We've been five times and are planning to go again in October. Of all the places I've been in my life, Hawaii is my all-time favorite.
Cynthia - so glad you had a great day with your family!
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I'm feeling much better now. Past the shock of seeing the old scans, thank goodness, and life is moving on. I have noticed that my left hip no longer hurts and I have lost the limp. Yea xeloda!! Three fingers on my right hand are very dry but no tingling or redness so far. I notice that the tips seem to be tender at times depending on what I'm trying to use my fingers for. Right now I'm sewing the binder on a baby quilt I made for the new granddaughter and I definitely have to use a thimble. We are flying out to Albuquerque new Mexico next week to see her. Can't wait.
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Frapp - I'm glad the Xeloda is helping you and you get to see your granddaughter soon. That will be wonderful.
I might have some HFS. I noticed that parts of my hands are very tender, but only slightly red. I really have to look for it. So strange. No peeling or tingling...just tenderness. No nausea yet today.
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My palms look like a weird roadmap of reddishness. The tips are tingly. My feet get real red on the soles if I'm on my feet a lot. I have had to take my rings off somedays because they feel tight.
However, it's annoying at this point but far better than side effects I've had on other meds.0 -
Chickadee - thats interesting about the redness. Right now, my redness is on the fleshy part of my palm and that's where I rest my hand when I'm typing on the keyboard. I'll have to work on not doing that. My fingers have also seemed swollen a bit, too, but it's been over a 100 degrees yesterday and probably today so I just figure that's contributing. Usually, by now, my fingers aren't swollen anymore, but I can still see my wedding ring squeezing my finger. There's no way I can get my ring off now. lol
Glad your side effects aren't too bad.
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A gypsy would have no problem reading the lines on my palm. ;-)
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I am on the 5th day of my second round (14/7) and I was up all night with pain in my sacrum area. I know that I have several mets there. Is it possible that this can be from the xeloda fighting the cancer (tumor flare)? The tumors in my breast continue to go down and I'm amazed at how quickly it is working in that area. My breast is almost back to normal. I don't want to call the doc cause I know they will tell me to come in and that's a 2 hour drive. I am also flying out to see new grandaughter in 2 days. I'm sure this can wait till I get back as Ibuprofin seems to help. I am hoping that this could be tumor flare. Anyone else have this happen?
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Frapp - I had burning pain in the area where my mets caused the most problems for me, so I think it certainly could be a tumor flare. Whenever I've been on a medication that worked, I've felt that burnng sensation. I hope the advil continues to help the pain and the pain begins to improve as the Xeloda gets the upper hand. Hugs.
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Hi,
I live in Antioch ca also. Just started xeloda 3 weeks ago. Lips hurt and dry eyes. What helps you? I just joined. I'm treated at kaiser Antioch. What about you?
Thanks
Renee0 -
Hi Renee and welcome!! I've actually never heard of either of those side effects from Xeloda, but I have had dry eyes before and the artificial tears drops were very helpful!! You can get them easily and it's not expensive. Not sure about the lips hurting though...do you mean like they are really chapped/dry?
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Thanks for the welcome. My lips are very dry and burn. Also getting a sore. So far hand and foot in control but do have nausea at times.
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Welcome swannay, you're in the right place. My upper lip was chapped pretty bad with my first cycle. I used a medicated Chapstick from cvs that seemed to help. It cleared up during my week off and has not come back yet. I'm on my 5 th day of second cycle. I get a little nauseous too but find if I eat something it goes away. I have minimal hand foot issues. I was on my feet a lot on Sunday and they felt like they were swelling. So when I got home I tried chickadees remedy and soaked them in Epsom salts and tepid water for about an hour, then slathered them up with lotion giving myself a little massage and they felt much better. They even felt better today so thanks chickadee for that suggestion!!
Lynn, thanks for letting me know that you've had that burning pain also. That's definitely a good description for it. It has been bothering me all day. The ibuprofen helps some. I have some hydrocodone at home that I'll take half a pill so I can sleep tonight but I don't like to take it cause it sometimes gives me a headache in the morning. thanks again for answering, I feel a bit relieved.0 -
Ah, lip sores - like cold sores or fever blisters? I got a crop after my first dose of AC last summer, so my onc prescribed Valtrex. I never had another sore, no mouth sores, nothing. I stayed on it for six months. Now that I'm on Xeloda, I am back on the Valtrex, probably for life. I hope this thought helps someone.
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Frapp, thanks for the tip about the nausea and chapstick. Hope you get some sleep and relief from the pain.
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My eyes do the exact opposite... they water along with a runny nose. I can't even tell ya how many boxes of Kleenex I go through. When puffs with lotion is on sale for .99 I stock up. One time I bought 10 boxes, and I've went through those already!!!
My mouth is starting to hurt so I think the mouth sores are beginning, so I put in the prescription for the magic mouthwash. If the mouth sores get real bad then I won't be able to eat... Ugh0
