Topic: Living with Stage IV

Hello Everyone,

   I haven't written in awhile.  My Mom (Stage IV exterhepatic..mets to liver and lungs..03/2006...four metal stents in common bile duct)  has been fighting this cancer like a true champion.  For the most part, she has done very well.  It wasn't until the end of sept. that things changed pretty fast and not for the good.  That's when we found out the Xeloda she was on did not work....but also her cancer spread to her right pelvic bone.  She had two weeks of radiation to her pelvic bone.  In the meantime, her symptoms worsened.  She started having severe right side/chest pains.  Her lungs were filling with fluid.  She had a procedure to drain the fluid.  They did this in two spots in her back.  Thankfully, the fluid came back negative for cancer.  It was the biliary system producing excess liquid.  The procedure helped her breathe a little better, however she is on oxgyen as needed.  She uses it at night and sometimes during the day.  That procedure happened on a Tuesday, the next day she had another procedure to drain her bile externally...for they could not put another internal stent in.  This is when we discovered that her biliary system was the worse the doctors at University Hospitals in Cleveland have ever seen.  Side note...they have been amazing caring for my Mom and our family!!  They are fighting just as hard as she is! 
She has an externally drainage bag that is draining her bile.  She is also on oxycotin, percocet, cirpo, ursodyiol (sp), along with some other meds to help. 
Her doctors informed us that her cancer has reached a new stage...one of rapid growth!  Since, having her bile drain externally they were able to give her gemcitabine with a little cisplatin.  She has been on this before and it worked.  So we are hoping and praying to God that it will work this time as well.  Her doctor doesn't want to put her on something new b/c her body wouldn't be able to handle the side effects...plus her bili is still pretty high.
Next week they are planning on doing another procedure to hopefully drain the bile internally as well as externally.  She went for some pics  this week and we found out that her biliary system is decompressing..so hopefully with the chemo and time the dr. will be able to bypass the bile to her bowel. 
I'm sorry I talked for so long.  It has been a hard couple of months.  My Mom just turned 54.  I am 29. My brother is 25.   My husband and I just had our 2 wedding anniversary.  More importantly, we have a 7 month old daughter named Lily.  She is the first grandchild on both sides.  AKA...my Mom's best medicine and sunshine on her toughest days!!!  A TRUE GIFT FROM GOD!!!!
My Mom, Patricia, has never complained or asked why.  She takes everyday as a gift and loves God and her family so much!!  She has and will always be my inspiration for everything I do in life...and I get to call her MOM!!
Thank you everyone for listening to me...I hope I can help one if not more people with this cancer.
Love and Happiness to all...Alison

Re: Living with Stage IV

Big hugs to your mom, you and your brother, Allison.  I hope returning to gemzar and ciplatin will bring your mom improved results.  You and your family are in my thoughts and prayers.  Thank you for sharing this journey with us.

30-something caregiver

Re: Living with Stage IV

Alison,

Do you still read this site?

Re: Living with Stage IV

Alison,

I'm not sure if you are still on this site, but i had to post when I saw yours.  We are in very similar situations- my mother was diagnosed in May of 2007 at the age of 61- they gave her a prognosis of 1 year.  At that time i had a 2 month old daughter- first grandchild and loved by my mom more than words can express.  My daughter is now 10 months old, and my mom isn't doing very well.  she is now on Xeloda, but her bily rubin is high, and her creatine levels arent great.  this has been the most overwhelming 8 months of my life- filled with utter joy and such pain at the same time.  I sometimes wonder how i have the energy and mental stamina to take care of my girl, and try to maintain some sanity.  My mother is truly my best friend- this diagnosis has cast a total cloud over my whole family. 

if you are still on this board, please post and let us know how your mom is doing.

Melissa