Topic: xoleda to control lung mets

Hello everyone,
Just back from an all day event at Cancer Treatment Center of America, and the news isn't great....but what I expected.   My dad has several mets on each lung.  The good news is after Cat and PET test no indicaiton of any other mets in his body.  The cells apparently were detected, but too small to biopsy when his CC was first diagnosed in June of 07.  They have grown now, slowly, but none the less they have grown.   The ONC strongly suggests Xoleda.  3 500 mg tablets in am  and 3 500 mg tablets in evening.   Dr. basically said, this will not "cure" this cancer, but could stableize the tumors.  Not sure, but hopful(the the ONC was sounding really positive, which helped my parents  a bit- although they are both really scared- it was a long quiet car ride home)  Any feedback on Xoleda?  Success?  side effects?  we were made aware of all the possible side effects, and actually met with a naturopath and she percribed a bunch of things to try and combat the possible issues.  Thanks for any assistance, I am thinking my parents want to go for it, especially since my dad can do it in the convenience of his own home.

The  Lord is my shephard

Re: xoleda to control lung mets

Hi Roma,

My Mom is 77 and has CC with lung and pericardial metastatis.  She was on Oxyliplatin and Gemcitibine along with the pill Nexavar.  After a recent bout with a pericardial effusion that caused her some heart issues (which were able to be fixed) her Oncologist put her on the pill Xeloda.  So far she has had not one side effect with the drug.  She and my Dad are careful about checking for side effects which are mostly issues with the hands and feet and mouth.   She uses hand cream on her hands and feet daily and checks her mouth for any sores.  (She switched her toothpaste and mouthwash to a brand called biotene on the recommendation of Duke's cancer clinic in the beginning of chemo.)

I can't promise you your dad will be the same but we've been lucky.  As to stablizing the tumors I don't know yet since we've not had any scans since switching to the Xeloda.

The company that makes the drug is excellent as far as patient resources.  I'm in the medical field but the patient information is in a very readable format and they have a help line as well.  I was impressed with the kit that comes with the drug.

I know how hard it is with this disease to try and decide what to do.  With its' rarity there really isn't a definite protocol for how to treat this horrible disease.  I would give you the same advice I gave my Mom and Dad.  Try it.  If it isn't working or the side effects become uncomfortable then stop it. 

I'll pray for you and your family as I do all on this board dealing with this monster.  Take care and keep the faith.

Cherbourg

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: xoleda to control lung mets

I've been on Xeloda since Sept 07, and am just now experiencing side effects with my hands and feet.  However, vitamin B6 is helping to alleviate the foot pain and hand tingles.

Re: xoleda to control lung mets

Hi Lisa,
Wow, that is great that you have been on Xoleda that long and have had such few side effects.  Are you taking it to treat mets as well.?   From what  I can tell, it was originally developed for breast cancer, and has had  success with CC.  Has it been effective for you? 
Thanks, Barbara

BTW, i love your website, I was on it for an hour, you are an amazing fighter.  Keep Up The Faith!
Barbara

The  Lord is my shephard

Re: xoleda to control lung mets

Thanks for your kind words! 

I have possible lung mets, but I'm not too concerned about them because there's really not a lot they can do about them right now.  I'm taking everything that they throw at me smile

The cholangiocarcinoma will kill me before any type of lung mets will  smile

Off to chemo!

Re: xoleda to control lung mets

Hi Barbara,

Sorry to hear that the news from your dad's tests were not as good as could have been. But as you say, at least you got some good news in that he shows no results of mets in other areas of his body.

Got no experience or knowledge of Xoleda so can't comment on that, but I like what Cherbourg says reagarding starting it and seeing how it goes then stopping if it all becomes too much. I guess if you don't start it then you will never know? How do you feel about that?

Wishing you and your parents the best.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: xoleda to control lung mets

Barbara,

My mom was on Xeloda briefly, she kept on ending up back in the hospital for fever and low blood pressure and was not really stable enough to keep taking it. It is very convenient since it is in the pill form so I agree with others that it is worth a shot, just as cc seems to act differently in different people, patients react differently to the different forms of treatment.

Patty