All about Xeloda
Comments
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I'm on day 4 of my 7 days off & I seem to have more issues than when I was on my 14 days on!!
2 days ago I had an awfully bloated stomach all day along with diarrhea for about 24 hours....even had to get up in the night to go -TMI.....
And I also feel very, very tired.....nana naps during the day & waking quite late in the morning.
I also seem to have more pain than usual & need more painkillers!
Anyone else have this on their week off??
Karen x0 -
Yes, I often noticed more digestive issues on the week off. Onc said it was the body dealing with the change. Weird to have more SE's on the week off but it was common with me.
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I have more side effects on my week off, too. I was told it was the body detoxing. It really sucks because by then I really need a break.
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Chickadee, cut it very short. It will be less dramatic that way. I've lost mine twice and although I have it back for now, I know that it's temporary. The first time I knew I was going to lose it I figured what the hell, I'll bleach it beach slut blonde and have some fun. Turned out 98 year-old Aunt Esther orange! I was actually relieved when it came out! Now that it's back, I refuse to get overly attached to it or to invest money in it so once again, I bleached it platinum. Fortunately, home dyes have improved in the 10 years since my disaster, and it truly is Jean Harlow blonde- which is where my resemblance to any femme fatale ends!
When I lost my hair, I got a couple of great wigs and cute hats. Also, if you have any fun pins or brooches, you can find pretty scarves and use those as accessories to close them.
It sucks, it's heartbreaking, but if you have a good imagination, there is a lot you can do.....hugs!
Donna
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Thanks Donna. My schedule is firming up for the next week. Labs on Mon., Port placement Tues., head CT Wed., for this ache that won't go completely away, meet with onc and infusion next Mon at 2. They said the path report on the biopsy would be done by yesterday so I'm curious if I'm still ER+/PR+ HER2- if it changed then the choice of treatment would, of course, change but still be a tough one.
I read that a few didnt lose hair but most did. I'm kind of twisting in the wind......cut it short now or wait for something to fall out......I have to call this salon in Austin that does the ACS wigs and hats and see what they recommend. Come in now or later?
It might be long enough to donate to Locks of Love, not sure though.0 -
I'm so sorry for you.
Take a picture of yourself with your beautiful hair just the way you like it. Keep it in case you lose your hair or if you find out that you will. Then you can get a wig that looks as much like the hair you love as possible.
On a positive note, I never got more compliments on "my hair" than I did with a wig. I was asked many times where I got my highlights done, and I never told anyone at work that it was a wig. And they never, ever knew!
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Hello all, I'm new here (sadly) and will be starting Xeloda / Tykerb regime this week. Sounds like most of the SE are HF and headaches, which will be super fun with brain mets
. Has anyone noticed hair loss? I know that's a trivial thing, but it finally grew back and I'd like to keep it.... Thanks in advance for your advice/helpRegards
Dianne
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Thinning strands initially but not complete.
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Day 6 on my 14 days - some nausea that seems to get a bit worse each day. Gas, lots of gas !!! no diarrhea. Some headaches and aching joints. Otherwise ok. Darn radiation burns are worse than the problems with Xeloda. I have on on my buttock - worst is at the panty line and that one measures 6" x 5" and has brought me to tears. One behind my knee too but not as bad as the one on the buttock. It has bled and I've been concerned about making sure I don't get an infection.
Ladies, I was looking forward to my week off; after reading some of the issues you are having, not so sure.
Dianne, welcome. Sorry that you found your way here.
Chick, hope that your status hasn't changed. You have a busy week getting your port, labs and CT of the head. Good luck. My hair is just growing back and thin in some areas so going to be interesting to see how Xeloda affects that.
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I lost my hair with Navelbine and it grew back while on Xeloda. I am at a low dose so maybe that makes a difference. I don't mind wearing a wig. I am almost ready to go without it.
Hope Xeloda is gentle to you.
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I lost all my hair on Paclitaxel/Gemzar & I am now on day 13 of Xeloda & it has started to grow back....
A bit pissed off coz the previous treatment didn't work so lost my hair for nothing....lol
Oh well, no point whinging about it!
I'm finding I'm very tired on my week off & sleeping a lot more as well as a few tummy issues!
No sign of hand/foot at all......is that unusual?
Karen x0 -
No, the HFS didn't really kick in for me till some time later. You'll also find the SE's are random and unpredictable. They come and go. Very weird and frustrating.
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Naniam: My onc told me that you have stronger side effects during your week off because the drug is accumulating in your system from the two weeks of pills. I have had to take an additional week off twice now because the side effects - hands, feet, tongue and lips burning sensation/ hands and feet peeling. Just seems like you get back to feeling somewhat normal and have to start all over again. CT did show bones building back up and cancer spots stable though so this was good news.
The stomach naseau and gas/extreme heartburn is what the raberprazole is for. Usually take one in the morning but sometimes I have to take one at night if the bloating and gas is too painful.
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My HFS gets better during my week off. My fingertips still feel plastic, but at least the hand lotion soaks in. I had digestive issues Saturday, which would be day 3 on my week off. Like chickadee said, the SE's come and go, and it IS very frustrating. I never know what to expect from one day to the next. I do know that on the 10th (?) day, Saturday, my hands are so bad that I can not ride. THAT has got to change, I'm not going to waste riding weather on stupid HFS. I know I'm going to ask to go to 7/7, if that doesn't fix it then I'll try changing my start day so my SE's don't happen on the weekend!
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Chickadee, sorry to hear about the progression. I know how hard it is to lose the hair. For me, eye lashes and brows were just as bad. Buying a wig ahead of time made me feel better. Wishing you the best.
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Well I scored today. Wanting to create a sitting area in the bedroom for when I feel crappy but dont want to lie in bed. We have been pricing recliners and looking around. Went to my favorite thrift store looking for a lamp I saw last week (dogs knocked the other one off the table). The lamp was gone but there sat the perfect recliner. Leather, in good condition, $65! Wrong color but who cares.
Didn't get home before the hospital finance people called to tell me that my share of the port procedure is 10%............... :-( ..........or $500.
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Score on the recyler Chickadee! Sucks you'll have medical bills.
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hi ladies great news get to stay on x ct scans showed no new spots so due to tumor markers still rising he wants to radiate the tumors in my breast it depends on what the rad onc says since he is also the one who does my cyberknife i see him on the 21 of this month. hey chickadee he moved me to the georgetown center maybe we could finally meetup hope everyone has a great night
love Chris
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Hugs to you Chickadee. I hope the new meds treat you well. When I lost my hair I purchased a purple superhero wig and a huge blue curly afro wig. I had a real wig as well. I never wore the real one. I found I had more fun and people around me loved the purple one so that is what I wore when I wanted to wear one. I have a lot of good memories in the purple wig. I would tell you to wig shop before you lose your hair. It is easier and less traumatic in my opinion. I also cut my hair short, pixie short, as soon as I knew i would be losing it. this helped me with the transition as well. So sorry you have to go through it and I wish you all the best.
Side note-
I can't remember who is on tykerb as well, but I believe that you should not take heart burn medicines while on this medicine. It makes the tykerb not as effective. I have had to manage my heartburn with sleeping upright, changing diet etc. Check with you doctor of course. This was what I was told.
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Braids, is that the one in the hospital near the post office ? They are so nice there.
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yea they were real nice.and they got my blood 1st time so glad. its only 10 miles from home and no 183 yea! love and blessings
chris
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Chickadee that is a good find on the recliner. Terrible that you have out of pocket cost on the drug - know many of us do. Hope you put the recliner in a good spot and have things all lined up to make you comfy. Could not believe what we paid out of pocket last year for medical cost when I added it all up for taxes.
I placed a call to my oncologist yesterday, (she was in clinic) about inside of my lips being so red and sore. Never heard a word so I had to call again today. The PA called me back and said that the sore lips was an indication the Xeloda was to strong and to stop taking the Xeloda - would have finished the 14 days Monday morning. I get so frustrated with this new oncologist - I guess I was spoiled but if I called about a problem my old oncologist never left me hanging 24 hours and never did I have to call back about the same problem. How many times do you have to call your oncologist about a problem? I really want to stay at the Comprehensive Cancer Center but I don't have a good choice in breast oncologist - they haven't brought in anyone to replace my oncologist. I am trying but I really don't understand this oncologist an am not happy. I know she is probably on overload as she and another oncologist had to take over my old oncologist patients. I only had two choices in times available for my return visit but you just don't leave a patient hanging either.
I also have REALLY bad radiation burns - one is 6" x 5" and the skin peeled. It is on the buttock in a very hard place to heal. I have talked to the RO twice now. I also have a burn behind the knee. The PA also said that stopping the Xeloda should help the skin heal. Has anyone had a hard time of a burn or cut healing while on the Xeloda? I hope stopping the Xeloda will help - I have been pretty miserable. Can't sit, I turn in bed and hit the sore and getting in and out of bed - oh boy can bring tears.
Can't wait to see what Xeloda has done to my blood counts; feel SOB and very fatigued. I made it 10 days out of 14 - not sure if that is good or not but just thankful I made it that long.
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Nan, can you get some prescription Silvadene out of the radiation folks. It helped heal my crispy shoulder skin that got burned. I hope you can insist on the 7/7 schedule, it should bring the side effects down.
I get frustrated with non responsive professionals.....it became part of the reason I moved my treatment back local after a year and a half traveling to MDA. It took too long to get questions answered once I was no longer part of a trial.0 -
Naniam I can't imagine having an unresponsive Oncologist. I'm sorry you have one. I've been Neutropenic and Anemic ever since my very first chemo 3 years ago. I'm fatigued on Xeloda, but my counts are improving!
Pros and Cons so far for me and Xeloda. I have odd SE's but most of them are very tolerable, such as stomach pain and fat lips (they feel so odd!) I also HATE having to eat breakfast!
Cons - Hand and Foot syndrome; It is really cutting into my quality of life. My feet have peeled and cracked to the point of pain. My hands get so sore I can't stand to touch anything. The timing sucks because so far it's been the worst on weekends, which is when I'd like to ride my horse but can't because I can't tack him up. I'm on Gabapentin (which I have been for a year or so) and I think it is really helping with the pain. I forgot to take it one day and man did my hand and my feet burn!
Pros - I'm sleeping VERY well. I'm always tired, but I am so very thankful to actually sleep all night!
Results. I'm trying very hard to stay on Xeloda because it IS working. My TM has come down to what it was before the Navelbine quit me.
My experiment. I'm mixing Aloe Vera gel with TrueLemon powder (LOVE this stuff! So tasty) and applying it to my hands. It makes them shiny, smooth, and slightly sticky - which is very helpful at work, since I can't handle paper otherwise. I will keep you updated, because if it helps HFS for me, maybe it will help someone else!
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looking for any advise for cracked feet. My toes are killing me. It is like i have a whole bunce of ingrown toenails. Lots of build up of tissue, some discharge and don't touch them. It is making it hard to walk. My hands are in bad shape as well but I can deal with that. Bandaides are my friends right now. Today is my last day of a 14 day cycle so I will have a week off. I will talk to the MO but want to see if 7 days off will help. If not, I am thinking of asking for a few more off to see if I can get my big toe to heal at least. Any suggestions are welcome.
thank you
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Chele have you tried L Glutamine for the hand and foot syndrome. I've been reading about it on Livestrong and plan on checking with my onc Monday before I start that Ixempra. It's supposed to double down on the HFS and I ain't looking forward to that.
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My dosage was increased too 2000mg (4 tablets morning and night ).
I feel really tired and have achy shoulders and back.
Is this normal? Will it pass?0 -
I'll look into it chickadee!
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I bought that L Glutamine stuff, it was so nasty tasting I couldn't keep it down while on the Ixempra.
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Keeping faith, it seems all these SE's pass and come back. Not a lot of rhyme or reason. I will say that I don't feel as fatigues in the last couple months as I did the first couple. Guess my body keeps fighting all the changes, sometime I win one. Hang in there.
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