All about Xeloda
Comments
-
My goodness, Deanna. Do the nails grow back once a person is off Xeloda? Or lowers the dose?
0 -
So bye bye to Ibrance/Faslodex, hello to madame X after the return of the galloping CA 27.29 and a mixed CT scan, left liver lobe improving but right lobe much worse.
Ended up getting the upper respiratory plague at the beginning of December which lasted until last week. That messed somewhat with what and how much I was eating, enough that somehow my INR (measure of coagulation) ended up around 15. I ended up in the hospital over night so they could fill me full of vitamin K.
Since I can't take warfarin with Xeloda, my MO switched me to Eliquis and is going to try and get my insurance company to charge me at a lower rate since I can't take warfarin. The interesting thing is that Zeloda isn't even on my insurance company's formulary, but my MO apparently got me approved for that too. They started me out really easy taking 500 MG twice a day with a goal of 1000 MG twice a day after the first cycle. Not too surprisingly I haven't noticed any side effects. My biggest worry at this point is how I'm going to get the dishes done....
0 -
Gloves and cold water. Welcome to the X thread, cive. Your onc is doing well, actively working to get you what you need.
0 -
Hey Cive,
I've been thinking about you and intended to send you a PM tonight as I haven't seen you posting for awhile. Welcome to the land of Madame X although I wish you hadn't experienced progression.It is so challenging when you get mixed responses with good response in some areas and progression in others. That seems so common here. My boss called it a game of "whack-a-mole", beating it down wherever it pops up next.
In my case, I don't know how much longer I will be on Xeloda. I'm finishing my fourth cycle (1650 mg twice a day) and think things have improved in my gut but not in my lung. I have noticed the SOB is getting worse again and I'm starting to cough a bit, particularly in the morning. My MO is supposed to be ordering a CT, likely next week if they can schedule it, to see how the treatment is going. He's been thinking of going back to hormone treatment, ironically Ibrance/Faslodex Cive, but it will all hinge on the CT results. Last scan was stable but that was only 6 weeks after my previous scan - my cancer seems to be a slow growing beast albeit somewhat stubborn when it comes to treatments - so not sure how much would show up on the scan.
I am doing okay re: the HFS after four cycles. My finger tips and big toes are sore and dry but I keep greasing up with the Udderly Smooth hand cream which seems to work. The fatigue is a bit much but exercise helps. I seem to be on a megadose compared to you (it's generally based on surface area but I'm only 5'5" and 125 pounds). Might be room to reduce the dose but given my poor response to treatment I'm still nervous about this.
Sending you hugs. Pat
0 -
I had a CT scan last week and will see the onc on Tuesday. The shortness of breath has got worse again, every movement is a challenge and I am so frustrated. Finishing the 4 cycle of Xeloda. Was so hoping to be in a lot better place as after the first couple of rounds I felt a lot better.
SE are minimal, HFS a bit tender but urea cream helps so far.
SS, do let us know about the results of your CT scan.
Wish you all good results with the treatment and less SE.
Love Karina x
0 -
Saw my onc yesterday. My TM's had jumped 10-15 points, but since I have NO symptoms from the cancer, mainly pain somewhere, he is ok with me staying on it and just keeping an eye on those numbers. If they continue to jump, we will do scans. I haven't had scans since Dec. 2016.
The lifting nails. I think I mentioned, I use Braggs ACV with the Mother and I also push some Vick's Vapor Rub under the nail. You can also soak in the vinegar. I have not lost any nails, and they are growing out and not lifting more.
DLB, ugly feet indeed. My boats are quite large (10), I have never had "pretty" feet, but they weren't too bad, especially if I polised the nails, which was ALWAYS! Same with finger nails. Now, no sandals, no polish. My feet and hands look horrible!
Bluebird, you DO belong here. Even if you are no longer on X. We are here to offer advice to one another and cheer each other on. I'm sorry you have to use a wheelchair at all! Hopefully it's only temporary.
Cived, welcome to the club of Madame X. Wow, only 1 pill twice a day. Never heard of anyone on that dose. Is it 14 days on and 7 off? How long were you on Ibrance? I've been on it for 3 years and have played with dosage over that time. The lowest dose I did was 1 pill (500 mg) 3 times a day, no break.
LOL SS on Whack-a-mole!
Karina, hoping you get good results on your scan.
I find it amazintg how differently we all seem to react to all of these drugs we are introduced to, try and live longer and if possible reach NED. SE's and whether or not it's working.
Here's to a positive 2018 ladies!
0 -
Read but don't post often.
That 2-4 time frame of the afternoon - I just want to sleep and it can last 2-3 hours HATE this, but if that is my most challenging se, I will deal How do folks handle and work?
Nel
0 -
I should feel grateful for being alive , and lord I do . But I would love to feel normal and do normal things
0 -
Kimchee - I'm so with you. I wish I could lead a relaxed normal life - but I'm always sore and worrying about the effects
I found it hard to keep my feet cool a night - and I think that might not help. I sometimes use cotton socks but prefer them to be free - though that messes up the sheets as I like my feet well covered in cream.
Is there anything I can soak my feet in to really clean them? (without any rubbing or soreness) They seem to be getting quite musky being covered with cream all the time.
Ah well - at least my stomach is behaving and I'm not getting a sore mouth. Small victories! I keep thinking Ion not tired but sometimes that creeps up on me, though I think its best I dont stay at home trying to keep my feet rested too much as I'm getting cabin fever!
Oh well - off to watch my dogs get a herding lesson tomorrow which should be fun! (Hubbie will do most of the walking around) (Here is a pic of the rascals) They passed the herding instant test last week.
I 0 -
Scwilly - I just love to watch herding dogs. They are super cute!
Goldie - wheelchair has been off and on for 1 1/2 years. I push more and more and when in I use my legs to walk it until I run out of steam and cannot move it. Love the feeling of running and rowing.
To anyone who has shortness of breath and cough and phlegm that started after being on Xeloda, I did too. The drug stopped and the cough steadily improves, phlegm almost none, shortness of breath so much improved I cannot complain at all. These are some in side effects but we tend to think it won't happen, wishful thinking. Before Xeloda I was on Ibrance / Femara. I couldn't tell you the SEs bcz I was so sick and had airways blocked and a collapsed upper right lung lobe. Anorexic from both Femara and Xeloda. A mess, yes I was. Transitioned right into Xeloda with radiation in thee mix between cycles. So hard pressed to know what caused what. Until now and I am getting better.
CT today - throat, chest, abdomen, pelvis. Will know more Tuesday.
0 -
Bluebird, It's good to hear you are starting to feel better. What an ordeal you have been through. Let us know your results and hoping scan will show stable ( or better) for you. It's interesting that you mention the phlegm etc. ( It's driving me nuts) I've had a bad cold/virus for about 15 days now and just got back from walk-in clinic for an added bonus of sinus and ear infections and bronchitis. I was given an antibiotic so hoping it clears some of this up. Crazy drugs we are all on for sure. The doc told me that the flu is nasty and has hit our area hard now.
Scwilly, Since you have 2 dogs, I think you can give me one!
0 -
Scwilly, that has got to be the cutest, happiest dog photo ever. It makes me smile and chuckle. Repeatedly. Those two look like smart, enthusiastic dogs.
Yeah, maybe you should give your feet some breathing time. I just lotion mine at bedtime. I hang them out of the bed until the lotion has soaked in somewhat. I don't mind if the sheets get some lotion on them.
0 -
Bluebird, I'm glad you are feeling better, and yes, it would be nice to know what is actually happening from what. Is is the shortness of breath that caused you to use the w/c? Praying your scans are good. When X fails me, my next treatment will be Ibrance. For whatever reason I'm affraid to go on that drug.
Linda, I don't get the flu shots, never had. But scary that it's so bad this year. Crossing my fingers I don't get it.
Shetland, like you, I don't mind if I get anything on the sheets.
I got my silicone socks yesterday. Slathered on some coconut oil along with my hemp salve, put them on and wore them to bed. Not sure what time I woke up to take them off. I take them off cuz I know my feet aren't getting air, and I don't know if that is something bad or not. I have big boats (size 10) and they're wide, so the socks are bit tight on the width part. I won't be wearing them if I'm planning on doing a lot of walking, even if in the house doing some cleaning. I'm usually on the computer for work, as we own our own business. Plan on doing some work outside today, so probably won't use them until the evening.
0 -
Silicone socks like the silicone baker's mittens? Good idea. The socks I used just soaked up the salves so instead I would rest my feel on a towel.
Yes, the drugs just make everything more lively and colourful. Thanks Lindalou. I am hoping for smaller liver lesions. Now the CT is over I am doubling up on the complementary supplements for pain and such. Am only on Aromasin now until I am stronger, then undecided and not thinking much about it until 25th. CT info on Tuesday.
Goldie - I was on Ibrance and Femara from end of Nov 2016 to April 5, 2017. It worked for me rapidly at first. Then stopped when no one was realizing. The Femara was what kicked my butt, am pretty sure. Anorexia and depression, lack of will to live or move. But the Ibrance is not to be trusted. It is your friend until it is not then the progression seems to be rapid for most. So as soon as you think the drug has given you its all then stopped for whatever reason, I say have something checked to prove it and get on the next treatment asap. Plan in force before the fact. That is my hindsight.
0 -
So good to see how everyone is doing. I just finished my second round of Xeloda. Not sure when I'll restart. I've just spent 4 days in the hospital getting blood and fluids.
0 -
Today is my last day of round 4. Is the only round I successfully completed. Had to drop dosage and take time off. 2 am/3 pm, 7 on/7 off is what finally worked for me.
I can really feel the cold on my fingers and body. Must be the low red blood cells. Not sure how to raise them.
Have two loads and a cat left and I'll have all my stuff/junk/crap in the new house. The challenge will be getting it sorted and put away with two kids "help".
Never heard of silicone socks. Can't stand for feet to be hot. I use whatever lotion or potion is handy.
0 -
Argh! Not sure if I did this to myself but both of my heels are super painful. No external blisters, cracking or pealing but it’s becoming increasingly difficult to walk on them.
I think it started with me being stupid. It’s cold and wet this time of year so I sooo wanted a nice soak in the tub yesterday morning. I tried to keep my hands and feet out of the water but think my heals may have had some exposure to my ‘soothing’ foam bath. By the afternoon I was starting to notice a problem and today it feels like there are deep blisters on each heel.
Any suggestions? I could really learn to hate this drug, particularly as I don’t even think it’s working for me!
Are we having fun yet? Thanks for listening to me whining...
Pat.
0 -
Pat - I haven't had this problem but for what it is worth and what I have read, I would slather on the best salve you have, put on soft soft socks and then shoes or slippers to protect your feet but that do not put pressure on them. And keep my feet up so the healing happens. If they start cracking it will get much worse. I had some HFS threats during my time on Xeloda and always thwarted the full fury of the HFS before it tore me up. Both times were from friction, once from a pair of shoes for summer and once from gardening on deck barefoot. Good luck.
0 -
Thanks Blue. My thinking is a little different than yours. I feel like it's going to happen at some point, and we don't know if it's stopping a drug, starting a new one. And like I mentioned before, some of us get a long run on a treatment, while others on the same treatment got a shorter life span of it. Who knows. My onc tells me how he has this one lady on ibrance and she's doing very well. And I tell him I know of MANY women who were on it and it didn't do well and they also needed blood transfusions. The silicone socks are nice, but like I said tight. They are for swimmers. And of course they are only soothed for the time your feet are in them. As soon as you take them off, and put socks on, they are right back to looking dry and cracked. I also put latex gloves on my hands after the lotion, or whatever I'm using.
JFV, you're the first one that I know of that needed a transfusion from X. Hoping you can get back on it soon.
Zills, I didn't notice my feet being hot in the socks.
SadiesServant, that's where mine are cracking and splitting. And the skin is so thick and tough. It's hard to try and not peel it off. The skin under is very tender. Hence my silicone socks. Does not hurt near as much. Feet don't get any air, so I put them on for only a few hours at a time.
0 -
Yeah, I wasn't posting or doing anything for that matter, the upper respiratory infection just felled me. Had to hire someone to walk my dog! I also got anemic from the overdo on the warfarin, which really can make you short of breath. My hemoglobin wasn't even that low, I can't imagine how you must have felt Pat, as low as yours got. Whine away, you deserve it!
Scwilly, that's what border collies are bred for, herding! Bet those guys love doing it, you can see it on their little faces.
I was on Ibrance for about 10 rocky months, my TMs were up and down the whole time but really didn't take off again until December. The 1 pill twice a day is meant to go to 2 pills twice a day after the first cycle of 2 on/ 1 off.
0 -
Pat, you may not have done anything stupid at all. Twice (three times but I know what happened the third) I've been fine then BOOM! Two hours later blisters on six toes. Are you on day 13 or 14 perchance?
The remedy is to stop the drug and stay off your feet. Should be better in a day or two. Each time it's happened to me on day 13/14 so I just decline to take the last dose or two.
0 -
Hmmm.... interesting. That was day 13. I'm now finished the cycle (thank goodness). They are darn sore and seem to be deep blisters. Trying to resist the urge to prick them to let the blisters drain. It feels like I am walking on rubber balls. Thankfully I can work from home when I need to so staying put and off my feet as much as possible (bit challenging as I have a dog to walk). I have on thick socks today which seems to be helping.
Funny thing is that they have not really been asking me about the HFS at the Cancer Agency. One physician indicated that it usually doesn't show up until down the road (I have only had four rounds). Well, I beg to differ. I definitely had issues show up after the second cycle (cracking of skin on my thumbs and tips a bit sore, toes also sore).
Thanks all for the feedback. Pat
0 -
Hello Ladies.
I'm about to join you on the Xeloda journey. I was on Taxol for about 6 months (Unfun months!) and while it worked for the first set of scans, the second set showed that I have new spots on my liver.
My husband's employer changed insurance companies and I wondered why the payment was lower and why the deductible was lower, and then I saw it - The drugs. We went from copays of 15/30/45 to a 20% coinsurance. UGH now I have to shop around and find deals. Which usually means I run around to different pharmacies. So I wanted to know if the makers of Xeloda or the generic have copay cards? I was told my portion through the cancer center will be around $816 until I meet my deductible.
Thank you
Amy
0 -
Mz, I get assistance from a company called Good Days. I pay nothing at all.
https://www.mygooddays.org/for-patients/patient-assistance/0 -
Pat, my feet and heals get really, really, sore. I purchased a small round pillow and place it under my ankles while I am sitting in a reclined position. This takes the pressure off the back of my heals. As I get later in my X cycle it is painful to walk and cotton stockings even hurt. I found a pair stockings that have a fleece lining that I purchased at Kohls. The stockings are made by Columbia Sports Wear. The are very soft on the inside and actually make my feel better then traditional socks. They feel so much better that I went back and bought 7 more pair.
I also ordered 40% Urea cream from Amazon. This cream, not lotion, has helped tremendously.
Hope these recommendations help and you feel better soon.
0 -
Sorry all but I have another question. Have any of you experienced anemia while on X? Ibrance did a number on my red blood cells and it took months for my hemoglobin to limp back up to the bottom of normal. Well, has my blood work done today and my hemoglobin has dropped significantly to 10.6. Still not low enough to cause me any issues but what the heck?
The only thing I wonder about is if my cold medicine could be involved. It’s still at the sneezy sinus pain stage so I’ve been taking decongestants.
CT tomorrow and then I will know if I need to move on from Madame X.
Pat
0 -
Posted this on TNBC thread but thought to share it with you too ladies.
Heard the dreading words yesterday from my oncologist. Xeloda is not working !! After 4 cycles on 4000 dose daily, 600 tablets altogether haven't done anything to the stupid cancer cells. He wants me to start IV carboplatin on its own. Has anyone have it with positive result. I know some women do it with combination of another drug, i.e gemzar, but haven't read uch about taking it on it's own. But I trust my onco and I am sure he knows what he is doing. As a triple negative I am scared I will run out of options soon. Well hopefully not. So I wear my warrior head tomorrow and start a new battle
Any advice from you ladies will be helpful. Thank you.
Love Karina
0 -
Karina, I'm sorry X did not work for you and hopefully you will find a treatment that does. Like I said before, this is such a strange disease, one helps this person but not the next. Good luck.
0 -
Karina, I had the gemzar/carbo combo. Let us know how you do on Carbo alone. That may be an option for me next. I got quite sick on the combo.
0 -
Thank you Goldie and Lindalou.
Lindalou may I please ask did you lose your hair with carbo? I am wondering if I should ask for a cold cap. I have seen them in the chemo ward at my hospital.
0
