1 (edited by lovemom Wed, 19 Sep 2007 05:30:41)

Topic: mom diagnosed...

Hi everyone

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.

Re: mom diagnosed...

Dear Lovemom,
I'm so sorry you are going through all of this. I personally don't know much about Dr. Kennedy but have read about other people who have been treated by him. I really think you are doing the right thing to go there. I really understand all of your pain and the problems your mother is going through. My husband had external drains with leakage and discomfort and he also is a new grandpa. The one thing he was most upset about was the fact he would not get to see his grandkids grow up. But he is doing very well now after months of dealing with treatments, abcesses, stent problems etc. I agree with not putting in the metal stent. We won't agree to it either. What I don't understand is why they say the plastic one can't be replaced. Has the tumor grown so big that it is not possible to place another stent? My husband had that happen originally but after his radiation and chemo treatments thay had no problem whatsoever. They were actually all shocked at how easy it was and remains so.He has his changed every three months. I hope you will have success at Wake Radiology. I would go ther as soon as possible. As for the drains and stents I really don't know. We go to OSU in Columbus Ohio. They have a brand new endoscopy departmenrt that is one of the best in the country.We have had very good treatment there. Best wishes and don't lose hope. Things will get better! Take care. Mary

Re: mom diagnosed...

Hi lovemom,

I really feel for you and all you're going through, as my healthy 64 year old mother just LIVED for her only grandchild, my daughter (age 4). We also got the runaround in NYC at NYU with one of their experts who had a terrible bedside manner - I think so many people go to these experts that they're overwhelmed and they don't give you the personalized care they should. I hope you get better service - and some answers - at Wake. I know I've seen a few posts here about Wake and they were positive, I think.

Sorry I can't help with your specific questions - just wanted to say hi and let you know you have friends out there.

Much love and luck,
Joyce

Re: mom diagnosed...

Dear Lovemom, my husband Charlie, age 52 dx with cc end of May this year.  We went to Dr. Kennedy at Wake after 14 weeks of gemcitibine chemotherapy, which was only maintaining the tumors, not growing, but not shrinking and also starting to wreak havoc with his blood counts.  This was our experience.  Dr. Kennedy is so sincere and compassionate.  It is 180 degrees from our oncology experience in our hometown.  He took all the time we needed, explained everything in detail.  One problem with the SIR spheres that he does is insurance sometimes won't pay so they were working on that for us. They do all the work.  He will write letters or talk to the insurance company or whatever is needed.  If you send your records, scans, etc., he'll get back with you quickly.  If you e-mail, he responds quickly.  We were waiting to see if it was a go with our insurance and then lo and behold, a surgeon at the tumor board meeting at UNC called and felt he could do something surgically.  We had gone there for consult/2nd opinion a few weeks earlier.  He did laparoscopy and MRI to get as much info. as possible and he thinks he can remove the bad lobe that's full of tumors and leave the good lobe.  Embolization and then remove bad lobe.  Sorry, getting side tracked...it takes over your life when you're fighting for a loved one.

I would highly recommend Dr. Kennedy to anyone because of his sincere desire to help people.  He's very interested and knowledgeable about cc and a wonderful practioner.  If the possibility of surgery hadn't come up, we would be doing the spheres with him right now if our insurance would pay. When I e-mailed him to update him on UNC, he was very positive and glad that surgery might be an option.

I hope this helps in some small way. I'm so sorry about your Mom and hope that things will get better.  You take care too!

Carol

Re: mom diagnosed...

thank you everyone for your kind words- and carol for giving me some feedback regarding your experience with Dr. Kennedy.  I am so hoping he is the miracle we are looking for. 

this board is great- but its so sad to see how many peoples lives are affected by this damn cancer.  i look at my own experience with my mom, and i guess its hard at any age to have a parent come down with a sickness, or to lose them, but it just makes it something different now that im a mother.  my family should all be celebrating my daugher- my mothers granddaughter, but instead everyday is filled with the unknown... how will she be feeling today, what kind of research can i find today, will that tumor shrink... its overwhelming and makes me so sad. 

As children we all believe our parents are invicibile- they are the strong ones, and now im finding myself having to be the strong one for her, which i know i can be but  all i really want to do is crawl up on her lap and hug her like i did when i was a kid.  god- i hate this...

thanks again for everyones words- i hope to be posting more on this board.

Re: mom diagnosed...

"As children we all believe our parents are invicibile- they are the strong ones, and now im finding myself having to be the strong one for her, which i know i can be but  all i really want to do is crawl up on her lap and hug her like i did when i was a kid.  god- i hate this..."

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Lovemom,

Those are very heartfelt and meaningful words.  I always wonder what is going on with my kids when they deal with their mom's illness and you probably hit the nail right on the head.

My wife had great success with Therasphere and I am a big advocate of getting multiple opinions and finding a doctor you can work with.  Good luck to you, your mom and your entire family.

Bill

Re: mom diagnosed...

LoveMom,

My Thoughts and Prayers go out to You and Your Family, especially your Mom. You are right,  she should be enjoying the new grandbaby, instead she is fighting this terrible disease. Keep up the fight, and enjoy every minute you can with her.
We all think that our parents will never get sick or leave us alone in this world, but many of us here on this board are facing the sad reality that it may happen to us.
I am so sorry your Mom is having so much trouble, and I hope they get it under control soon.
My Dad was diagnosed a few weeks ago, and this board of great people have been a huge help. I am only starting to understand this disease through thier stories, and experiences, and I have come to learn that there ARE survivors and not everyone succombs to this Devastating Cancer. I hope that your Mom is one of those people.

Love and Thoughts,
Lisa Ann