All about Xeloda

Moderators

Dramirez, until you get replies here, there's more info about Ixempra at the main Breastcancer.org site, as well as busy threads about it here on the discussion boards.

Chickadee

Dramirez, I am one week out from starting the same regimen. My thread is here:



http://community.breastcancer.org/forum/8/topic/801243?page=3#idx_79



Get ready for a challenge. Day 8 and I'm finally feeling functional. It's a tough one. Scuttlers has done it and really helped me get through this first week.

wannabe

Hello ladies,

Is it safe to take Curcumin while on Xeloda? My mom is having Herceptin + Xeloda and she also started one month ago to take Curcumin. Is it ok? I know it doesn't interfere with Herceptin, but I didn't find any useful information about Xeloda and Curcumin.

She's taking very few supplements. In our country we don't have naturopat oncologists, but I found many useful informations on this forum and with her oncologist's consent she takes Curcumin 2000mg a day. I just wanted to check with you if it's ok. Any advices will be useful.

Thanks

Chickadee

Her doctors opinion is far more knowledgeable than ours. We'd just be guessing.

wannabe

Thank you, Chickadee

I wanted to hear opinions from you, ladies, because her doctor usually doesn't recommend any supplements and I'm not sure how well informed is about them.

chele

I don't have a clue wannabe!  I just google; i.e. xeloda curcumin  I know there are few interactions, and if her Onc said it's OK I'd just run with it.

Started round 7, the first round of 7/7, still on the same dose.  Hands fired right up, shesh.  Feet have numerous cracks, bleeding heels.  I've found using Triple Anti-biotic Creme with Pain Relief really helps my heels.  For my hands I'm using nice cooling Baby Wipes with Aloe and Shea Butter, then I apply Burt's Bees Shea Butter Hand Repair Creme, then I apply my homemade aloe/lemon so the creme will soak in.  What a mess.  Barely keeps my hands functional.

By the way, I'm just posting this nonsense in case anyone else might gleen something useful from it. 

dbla

Lousy palms, lousy feet but so far after a year everything in between is stable so who am I to complain!

Naniam

Summer,  I didn't start the Xeloda until I had finished 25 rounds of radiation.  I had horrible burns, one was 6" x 5" on my buttock.  I had to stop the Xeloda after 10 days and I was told that the burns might start to heal also.  The following week I saw my oncologist and she wanted to see the burns.  She was upset that they were so bad but I was to start Xeloda again on Monday and she told me she wanted me to wait until this coming Monday to start again - she wanted the burns to heal. So apparently while you are on Xeloda it can make radiation burns worse or if you get burns, makes it longer to heal. 

I'm having lots of swelling in my lower legs, feet.  My ankles are really puffy and I've never had this before.  I start Xeloda again on Monday - has anyone had this as a side effect.  I've never had this happen before with any treatment I was on. 

As of today I had not received my Xeloda in the mail.  Tomorrow it would be a week since I saw the oncologist.  I called today to check on it - I was on hold forever to talk to a nurse.  She took my question about the Xeloda to ask the doctor and to check on it with the pharmacy but she also put me through to the pharmacy.  She put me through to the "regular pharmacy" (this is at a comprehensive cancer center) and they said I needed "special needs pharmacy" but they called and ask them.  Neither of the pharmacies had the order for Xeloda - only said there was a note on March 5th that I was having nausea on the Xeloda and not to fill it again until advised further.  I called the nurse back, gave her this info and later I received a call and my oncologist had one of those "ugh" moments.  She forgot to follow through with the pharmacy and it was taken care of.  I later also got a call from the pharmacy to let me know it had been ordered and to make sure someone would be home to sign for the meds.  I really don't know about this oncologist - she did order the MRI to find the cancer that required a rod in my femur and my old oncologist had listened to me complain for months about the swelling and increasing pain in that femur and only ordered an ultra sound but she and I just don't seem to connect.  One more visit and I think then I will stay or move on.  I have been at this cancer center for 8 years and I really hate to move with all my scans there and I know the people but they really need to get at least two new breast oncologist.  Frustrated.

Chickadee

Swelling was a big thing when I first started X. Especially my left ankle. Sorry you are vexed with it to. It's less now but warm weather aggravates it.



I hope your cancer center gets its act together you sure don't need more stress.

chele

Naniun, I understand your frustration!  I work in a hospital, and I'm sorry to say, but being totally disorganized seems par for the course with medical facilities!  I have to hand carry my lab results to my oncologist.  The lab here at work says they ALWAYS fax the results to my onc, my onc says they never get the results.  *shrugs*  It was also a nightmare when I had to deal with the mail order pharmacy through my insurance.  A Script is not enough, oh no - they have to have ORDERS too.  schmucks. 

Reggata2

Hi ladies, I am on the 3rd cycle of X with very few side effects and I am tolerating it well, my hair has thinned however I was on Navelbine before X and most of the thinning was from Navelbine it has started to grow back a little. The SEs I am having at present are occasional diahorrea and aching joints nothing I can't deal with, after going through so much on Navalbine It's a walk in the park and I hope it stays that way. I have a scan after the end of the 3rd cycle I hope to god I am responding I have multiple bone mets and 3 small tumours in the liver. I am 6 1/2 years from first diagnoses 4yrs with bone mets and 6 months with liver mets. I have read a lot of positivity about xeloda and ladies who have been on it for a long time. I hope and pray I will be one if those ladies with good results and able to stay on x for a long time.

KeepingFaith69

Goodness me! I am on day 4 of my week off and the se have kicked into over drive. My face is covered in spots, my stomach is bloated, I feel like I have do much gas I could float, abdominal pain and back pain. I am misery guts! Good news is that the fatigue has taken leave.

Naniam

Keepingfaith, so all the gas (horrible gas !!) is a side effect?  I had never had gas and especially gas like this- my husband and I have been scratching our heads to try to figure out what was causing all the gas.  Didn't have the gas while I was on the Xeloda.   

Reggata2, starting my 2nd round on Monday.  Hope we both have a long time on Xeloda. 

The oncologist did not cut the strength of my Xeloda - she kept me on the 4300 mgs. daily. 

KeepingFaith69

Hi Naniam



I read somewhere in this xeloda thread that gas is a se.

I hope it is! Otherwise I'll be pulling my hair out, worrying about progression... Eeek!

Chickadee

It is. I already took a prescription med for indigestion before I started X. Initially the gas and indigestion was so bad onc sent to GI doc who recommended taking twice the med and added a stomach ulcer med to coat the stomach lining. It finally resolved and little by little its no longer an issue.



Worth asking for a referral to a gastro doc.

Frapp

GasX helped me with the xeloda gas.

Reggata2

Anyone have pain with liver mets? I am experiencing a dull ache just hope it is the xeloda doing its job, it is an intermittent pain.

Chickadee

I've never had pain but I think some have.

JoyE1947

I had pain with liver mets.  Thought I was having gall bladder problems but one day my pain became very severe and I went to ER.  CT scan showed the liver mets.  My pain was just under my ribcage on the right, and in my back under my right shoulder blade.  My liver was enlarged.

I have been on Xeloda since Aug. 2012 with excellent results and very few side effects.  I am on a low dose, 1000 mg AM and 1000 mg PM.

I have heard others say that the Dr. told them their pain was a result of the chemo doing its work.  Hope that is the case with you.

saskie

Hi Keeping Faith,  I definitely have gas with the Xeloda.  My oncologist has prescribed Raberprazole sodium to offset the gas and keep it somewhat settled.  I still find if I eat anything even a little bit spicy or acidic that it causes more gas and stomach and back pain because there is so much gas and bloating.

Kazzie61

Hi girls....I too have had a bit too much gas!!

My stomach gets a very bloated feeling & the wind is really embarrassing....too scared to go to public toilets!! Lol

I'm just at the end of cycle 2 & the side effects haven't been too bad. Apart from the bloating & gas, just a bit of nausea & mouth ulcers & very little hand/foot syndrome....fingers crossed it continues that way & most of all, it is doing the job!!



Hugs to all.....Karen x

leftfootforward

wow, I am back on Xeloda after a two week break to help my feet heal.  It is kicking my ass. Fatigue is amazing. And between it and the tykerb, I look like a 16 year old again with acne like rash all over my face and back.  Ilove the roulette of the SE from these drugs.  I never  know what I am going to get.  

Gasex helps with the gas.  

Keep on keeping on

Frapp

Hang in there, the acne will clear up in a couple of weeks.

chele

Me too leftfootforward, the fatigue is kicking my butt.  I slept all afternoon yesterday, and wish I could today.  Not sure my boss would apprechiate me sleeping at my desk though!

Oh boy. I haven't had anything like acne. I had some peculiar lumps that looked kinda like boils, but no puss. Luckily, not on my face. I'm on day 5 of round 7. Loving the plastic fingers. bleh.

Kazzie61

Hi girls....



Am I the only one not getting the hand/foot thing??

I do have a few red bits on my hand....very, very minimal!!

I keep thinking if I'm not getting bad SE's it's not working.......

Onc appointment today, just about to start cycle 3.

Hugs to all.



Karen xox

chele

Lucky you to not get HFS Karen!  I HATE it.  It's a real hassle trying to type all day.  My feet have improved quite a bit though, very thankful for that.

Moiralf

Hi Karen, I didn't get much HFS.

Did 8 cycles and got little bit of peeling on two fingers and small amounts on feet. Use a really good cream as much as you can and resist peeling the skin.

I got thingling in the tips of some of my fingers but nothing to stop me doing anything. My onc didn't even think it was a SEs but I knew it was and it went away when I stopped the X.

X put me NED so it worked really well for me so not having SEs does not mean it isn't working. I just counted my blessings that I was that lucky.

Did get the gas a bit though but small price to pay.

Good luck with onc appt.

Moira

Chickadee

It's posted elsewhere but Lynn1 who started this really helpful thread lost her battle with this miserable disease. Peace to her family.

jeanieb2

Oh, no, Chickadee do you know when this happened to Lynn.  I had not heard from her in sometime and just today was going to check her Facebook page or the other thing she posted on.  I did not know how to get in contact with her other than an email and I knew she was having a really rough go of it.  I am so sorry and upset to hear this and thank you so much for posting this.  I did not know where to go to see anything on her. May God Bless her and her family.

SyrMom

So very sorry to hear about Lynn.  Although I didn't know her personally, reading her threads have helped me immensely.  May she rest in peace.