All about Xeloda
Comments
-
Karina- what a beautiful name. I had only been off A/C for two days when I started Xeloda. Took a few weeks to get that out of my system but now feel pretty good. Just finished my second cycle on Sunday. I did have a bout of diarrhea and cramps yesterday but that's it. I take the nausea Med's about an hour before I take the Xeloda and I'm ok. I do eat about five tums a day too. Seems to be working. Did you come off a chemo prior to starting Xeloda
0 -
Hi Diana, thank you for your reply. No x is my first treatment since diagnosd with mets. I know there can be few se from x and i am ready for them. My problem is me being so unwell , sob, back pain ( controlled by pain meds, strong ones) , fatigue , all these present prior taking x, so hoping that will feel better once the stupid cancer cells start to die from xeloda. I hae been spending most of the time inbed before taking x so its not the x that makes me so ill.
0 -
Karina - I would want my labs checked at this point to see if you should continue to try to get to 14 days. Your WBC / RBC may be way off. Please insist on labs being done asap. When you are ill it is often time to take off of Xeloda until recovered too. So this is a double whammy when you need to fight infection the most.
When I take Xeloda for 6 days I start to feel like I have flu, dragging and horrible draining feeling. I think it is the blood taking the hit.
Oh, and many of us are on the 7 days on and 7 off schedule. So that is a "newish" call after trials proved it to work as well as 14/7 schedule. Some oncs use it and some don't.
0 -
Bluebird thank you for you reply. The thing is i was feeling the same prior to starting xeloda so i am not sure the chemo is to blame and my blood count just before starting it was normal. Every day i get more and more frustrated because i am not getting better. I think i will get thru this week and speak with my onc on 31 october when i have scheduled the appointment.
Love
Karina x
0 -
Karina, I hope you're feeling better soon. It's hard to know what to do when feeling bad like that, but since you have an appt soon, I'm think hang in there with the xeloda until the appt and hopefully it will start working and you will feel better. Is it the nets that give you bad back pain? I wonder if they plan to do any radiation. A lot of people say it relieves the pain.
0 -
HLB thank you for your well wishes. I have several mets in my spine and hip , at the moment they cant tell which one is causing the pain hence delaying radiation untill i see some improvement from x so that i can pin point the exact place that hurts the most. I hope ths makes sense. I am taking heavy dutu meds for the pain and except the stuborn leg joint pain its pretty much ok.
My main problem is shortness of breath. When they drained 3 litre of fluid i thought i would feel better but i am not and i think its filling up again even though they did the talc treatment after the drainage. I avoid geting out of bed because i know how breathless i will be and it sets some panic too so altogether i am a mess...
Sorry for the moan girls, i know you understand
Love karina xxxx
0 -
Lindalou, have been on X since May with no symptoms except this last round started making my finger tips crack. I take 1500 in the morning and 1500 atnight for 2 weeks then one week off. It’s brought down my tumor markers and all my liver enzymes are normal now. Hope I get a good run with this. I hope all of us on X get good results.
Dianna rose you sound great! Glad X is working for you too!
Hugs 🤗 to all.
Anita
0 -
Karina that appt cannot come fast enough! Maybe you should call and tell them that your sob is stil really bad. At least they could tell you whether or not that is to be expected. Like maybe the sob stays until recovered from the talc. Or if it's filling up again at least they will know and maybe have you come in sooner to check things out. That sob can also happen with heart issues but it seems like it's most likely the lung problem. I hate thinking of you miserable and never getting up. They need to do better than that!
0 -
I have been reading the post but I don't know what sob stands for?
0 -
Dianarose, I believe it stands for “shortness of breath “
Aurora
0 -
Thanks.
0 -
Karina- if your hemoglobin is low it will cause sob. I was in a wheelchair due to very low hemoglobin. Now that Xeloda has kicked in and my counts are better I’m up and walking just fine without sob anymore. Definitely have some blood work done. You might need a transfusion for a kick start. I’ve had 8. They really help.
0 -
Karina, I'm sorry. Hoping you can kick the pain and the lungs into order. Hugs.
0 -
Dianarose - I didn't know that about hemoglobin. I will recheck my labs. Had fresh today, MO on Tuesday. Decisions on liver lesions then. I just wish I could take Xeloda w Ibrance or alternate them. Keep it simple, you know.
0 -
I've been putting the stuff on my feet since I started X. I am on day 8 of the 2nd cycle of 2 weeks on, one week off, and my L foot is starting up I think. It started Monday, a small spot right below the toes in the center where my foot wrinkles if I sqeeze it together. Same spot on the R but not as bad as it just started hurting today. It doesn't even look bad, just a little red, but it hurts enough to make me walk funny. I wonder if it would help if I wash my feet a lot, like a few times a day. My hands are okay and I thought maybe because they are never covered and they get washed a lot more than the feet. Like maybe it would wash that medicine off. Also getting very tired and crappy feeling. It reminds me of when I took adriamycin but not as severe. Trying not to be a baby about it but I can't go on like this and work FT. What do you all think about the foot washing thing. I've been using 40 percent urea, then another cream with 10 percent because the 40 is not moisturizing at all. Maybe it too much? I saw onc mon and he thinks I'm fine, but it's gotten worse since then.
0 -
HLB, I think it makes sense that foot washing might help. "The most commonly accepted theory" about the cause of hfs is described in an article I found:
"Local delivery of high drug concentrations through eccrine (sweat) glands has been implicated in the etiology of HFS induced by chemotherapeutic agents such as doxorubicin and TKIs such as sorafenib.6 Notably, the palms and the soles have the highest concentration of eccrine glands in the body, thus supporting the possibility that drug accumulation in sweat results in particularly high concentrations in acral skin."
In other words, toxic stuff that can damage the skin is coming out in the sweat on our feet. So, whenever possible, I rinse my feet in cold water about two hours after my pills (when the highest drug concentration may occur), again whenever they feel hot and sweaty, and at bedtime. So far, so good. Maybe take unscented baby wipes to work?
http://www.oncologynurseadvisor.com/ce-courses/pre...
0 -
Thanks Shetland! I was thinking the same thing about taking wipes to work. And thanks for that link.
0 -
You're welcome. We always seem to travel with a small pharmacy in our purse, don't we?
0 -
For sure, I keep a separate purse just for that stuff. And kleenex and extra socks!
0 -
So... for those of us whose feet don’t sweat much, would that mean the risk if HFS is less? I’m not quite halfway through cycle one and have no idea what to expect.
0 -
I am day 11 and started the urea cream but so far so good with HFS and other SE . Just a little nausea during the day time. Fancy lemon and gherkins all the time though just like when i was pregnant 😞
Good luck everyone with madame xeloda .
0 -
Karina I hope you are feeling a little better.
0 -
HLB , the sob is a little better , I still get easily tired but my mobility was a little better last two days. My daughter says she remembers the pulmonologist saying that it will take a month from pleurodesis , the talc procedure , to feel better. So it is a little over a month and fingers crossed I will go to mend and fluid will not accumulate again. I really dont want to interupt xeloda for drainage or anything else.
Many thanks everyone for your helpful advice and hope everyone has pain and se free weekend.
Love
Karina
0 -
I'm in the second week of my third round of Madame X and I must say if feels its not going too bad. I was fearing side effects would accumulate, but they are actually appearing to settle.
I keep sickness at bay with Zofran, pre-empt the inevitable constipation (from Zofran and my occasional Hydro-codene for my sore hips) with a laxative when I feel it could be brewing. My feet and hands are not too bad - a bit flaky and I'm keeping them moisturized when I remember - I bought some cotton socks and gloves to use at nighttime to avoid a mess all over the sheets. Also, I find its better for me to get rid of the dry skin on my hands and feet - though I need to be careful I don't overdo this. Tired sometimes - which creeps up on me as I can feel great one moment sat down - but then as soon as I go to do something I feel knackered. Been going to bed early some days and not getting going very quickly others.
My side pain for my liver seems to be settling. My liver markers escalated when I was tested a couple of weeks ago - but when re-did without fasting (I was fasting for ano test) they came back to normal. (though Bilirubin was a bit elevated)
So all in all - I'm actually very pleased that things haven't escalated and my drop from 5000 to 4000 a day has been successful (my first two weeks were horrible). Going to see my MO in a week or two and then a scan later in Nov.
Have a wonderful weekend everyone. Onwards and onwards!
Sarah
0 -
Hi Scwilly.
I'm happy to hear that the liver pain is easing. I've just started with Madame X (finish my first week tonight) and find the side effects to be minimal, it any, so far. I am hoping to see some improvement on the pain soon. I posted a new thread today as I am not familiar with anyone with my situation. I have been experiencing pain in my back and right flank around to the front since mid-August. CT scan shows that I have thickening in my chest (pleura) and in my abdomen. They think this is what is causing the pain as it's pushing on my liver. I thought it might be adhesions pulling on things (like that explanation better!) as I have a lot from the frequent draining of my lung. Now, as you can imagine, the pain takes on more of an ominous tone. I'm keeping it under control with meds but REALLY wish it would go away!
Take care all. Hope you have a lovely weekend.
Pat,
0 -
Karina I'm so glad things seem to be going in the right direction. Hang in and stay rested!
0 -
Yay Sarah! I'm so glad things are getting better as far as se's go. And big YAY on the liver numbers.
I remain in prayer for all you lovely ladies.
Mary
0 -
Has anyone NOT have their hair come back on Xeloda? Will be two months on Friday and nothing! It’s depressing 😰.
0 -
Dianarose, ugh, I'm sorry. I was on hormonals before, not a chemotherapy, so whilst my hair thinned, it didn't all come out. I have noticed that it's getting thicker again but it's been four months since I started Xeloda.
Maybe patience is required? I'm trying to remember the days since ACT. I finished chemo in October as I recall, and I wasn't able to go out in public with my hair until sometime in January. Even then it was buzz cut length. And my hair grows FAST.
0 -
Dear metfriends,
my wife has just completed round 2 of XELODA. She is on the 2 weeks on 1 week off scheme. She had the first lab tests and TMs rose. CA15-3 was increased from 88 to 104 and CEA to 3,5. As per the last MRI she has two tiny spots on the liver and a very active lymph node at the back of the sternum close to the spine (size approx 3,8 cm).
I would like to ask for your experience with XELODA and the time it takes to kick-in. I understand that the time frame is too small to evaluate whether XELODA works or not but as you can understand both my wife and I feel frastrated afte the lab tests.
My warmest wishes to you all,
Grigoris
0
