Topic: mom diagnosed...
I have been lurking on this board since my mother was diagnosed in May of this year with unresectable cholangiocarcinoma, and decided i should start posting. Brief history of this- last summer my mother was having symptoms of jaundice and pain in her abdomen- she had gall bladder problems in the past- so we all thought it was her gall bladder, which she ended up having removed in October of 2006. after the surgery a stent had to be placed to drain the bile- it was a plastic one. in December they found what they called a stricture, which all the dr's thought was certainly NOT cancer because my mother presented too healthy to be a cancer victim. the dr's decided to wait on this- they told her to go about her life- so she went to Florida for a month, came to visit me when I had my baby in March and stayed with my husband and I for a month. All this time she was feeling good. then the stent started to fail, which we expected because it had been 3 months, and she began contacting her dr's, who decided they wanted to do surgery to remove the stricture and reconstruct the bile duct- again there was very VERY little worry that this was cancer. So, on May 15th when she went in for surgery we were all shocked by the diagnosis that she had cancer- was unresectable and had 1 year to live. knocked us all over! my mother was always a very healthy woman- never had to take medications in her life- 61 yo, and a brand new grandmother. this was, to say the least, so unfair. She had been seen by Dr. DeMatteo at Sloan-Kettering in NYC- lets just say his bedside manner is not great- but we were told this was the place to be and this dr. was the EXPERT in this type of cancer. He told us while she was in the hospital that they wanted to place a metal stent, which we were all concerned about, because it was permanent, but only lasted 3 years. So, they placed an internal plastic stent, and an external stent. the external stent has been so impossible- she is always leaking bile all over everything- she has to attach that stupid bag. it is so cumbersome, and has made her quality of life very poor, as she stays in bed a lot of the time because she is leaking bile so frequently. SO, long story short- they decided against the metal stent because it would cut off all her options- started her on Gemcitabine- they were supposed to do a scan after 2 rounds- they waited until the 4th round, and low and behold, the tumor has grown. she is having breathing problems because this chemo drug affected her kidneys, which her oncologist didnt even pick up. I cant even go into all the details because it would take too long, but my family and I are SO disappointed in my mothers care through sloan-kettering- the supposed BEST hospital in the world for this cancer. so, in doing research I found Dr. Andrew Kennedy, at Wake Oncology in NC who is doing that new treatment with microspeheres. I emailed him, he got back to me within 4 minutes (sloan-kettering dr.s and nurses take DAYS to return phone calls) and we sent her MRI results to him to see if he can help us. has anyone on this board been through this treatment for BDC?
My other question- my mother's plastic stent is failing, and now the internal radiologists are saying it CANT be removed????? We dont know why- they want to place ANOTHER external catheder- that would make two for her. Anyone have this experience? My whole family is so overwhelmed- i am 4 hours away from my parents, and my father is so consumed with grief that we are having a hard time getting questions answered.
i am sorry this is so long- i left so much out too, but im afraid people wont want to read it if it is so long!!! i am a new mother- my baby is 6 months old- my mother is a new grandmother. i am very close to my mom, and am so lost right now- im angry that she cant focus all of her attention on her grandbaby, which she deserves. this is so unfair... but its so nice to see the support people get from this board, because this cancer just really REALLY sucks- thats the only way to describe it. It comes out of nowhere, and then there is so little treatment for it.
Ok, im done for now! please, if anyone has experiences with Dr. Kennedy please let me know.