I'm Scared...Does Anyone Have Any Suggestions For Me?

Hi,

I am really new on this site.  My mom has bile duct cancer.  After 2 grueling surgeries (liver and then pancreas) and chemo, it came back and spread to her stomach, kidney, back to the liver and nodules in her lungs.  We also think it might be spreading more.  After trying chemo pills that really wiped her out, she started bleeding.  They felt like it was from the tumor on her kidney so they went in through the artery and tried to cut-off blood supply.  Meanwhile, she is anemic and feels awful.  She is still bleeding, not as much, but Mon. the 26th the Dr. wants to do surgery to use radiation and cauterize the tumor on her kidney.  Mom said the Dr. said it would be hard to recover from this surgery.  Her breathing is not great anyway. 

I want to ask the Dr. about a blood transfusion, oxygen. I want her to feel as good as she can.  She is wanting to get through this surgery to take another round of chemo.  I'm afraid of this surgery and whether it's really needed but I try not to say anything that sounds negative to my mom.  I don't know what to do.  She hardly eats anything, has pain and is exhausted.  She uses a walker because she was falling alot.  I feel helpless and confused.  I don't know how to help her and I worry about "what are the right decisions" in treatment. Sometimes I think she wants the best quality of life she can have now, and other times I know she wants the next round of chemo to cure her.  

I'm heartbroken and frustrated that I can't fix it for her.

 Thanks for listening.

Diane 

Thank you so much.  It does effect everyone one doesn't it?  Hugs and prayers are wonderful.  I pray this surgery is the right thing and it goes okay.  Thank you for your kind words and thoughts.

Diane

There is a drug on the cusp of approval called DAVANAT.  They are recruiting people in trials now.  If you are stage IV I'm not sure you can get into the trial.  It clearly worked wonders on stage IV patients  who lived over a year on the treatment.  The drug is a targetting mechanism that has a payload of Chemotherapy 5FU and gets it right to the tumor without going to other parts of your body.  The drug has ZERO toxicity.  I repeat ZERO.  No other chemo has zero toxicity - everything effects your blood count.  This doesn't - well then does it work?  The answer is Yes.  Have they measured a percentage - NO.  They need more tests.  You have to go to the companies website. Tons of great information. 

 This Drug will be the new AVASTIN in 3 - 6 months and a household name.  The question is do you have the time to wait - go for this now.  They want to use this for first line therapy for unresectable cancers - means - they think this is a way better option than surgery. 

 They are using a 30 year old toxic chemo drug called 5FU and have a targetting drug bonded to it to seek out and destroy the cancer cells only.  I think it will work brilliantly for you. 

Diane - I'm so sorry that you even have to be on this site looking for answers.  This is such a horrible cancer.  I lost my best friend to this cancer back in November - she was 31.

I recommend that you wander over to www.cholangiocarcinoma.org.  There's a pretty large community over there, and you may find some helpful advice. 

 This won't be comforting, but there is no "right" treatment for this cancer.  As you continue doing research, you'll find that people react so differently to each treatment protocol.  What works for one may not work for another.  I wish I had the silver bullet, but the research is incredibly thin due to lack of funding.  The reality is that the doctors are making their best guesses.  But I'm confident that they will eventually find the right treatment. 

On 2/27/2007 Sparks wrote:

Diane - I'm so sorry that you even have to be on this site looking for answers.  This is such a horrible cancer.  I lost my best friend to this cancer back in November - she was 31.

I recommend that you wander over to www.cholangiocarcinoma.org.  There's a pretty large community over there, and you may find some helpful advice. 

 This won't be comforting, but there is no "right" treatment for this cancer.  As you continue doing research, you'll find that people react so differently to each treatment protocol.  What works for one may not work for another.  I wish I had the silver bullet, but the research is incredibly thin due to lack of funding.  The reality is that the doctors are making their best guesses.  But I'm confident that they will eventually find the right treatment. 

I suggest contactiong Wake radiology in Cary North carolina (Dr. Andrew Kennedy) re radioembolization also known as Brachytherapy. It has head great initial success. It uses tiny glass beads that contain radition.

Thank you to everyone that has replied to my message.  I haven't been online in a few days because we've been at the hospital.  My mom was scheduled for the procedure to cauterize the tumor that was bleeding on her kidney for this past Monday but Sunday her blood pressure dropped dangerously low, she thought she would pass out and she was more confused than normal.  We called the Dr. and decided to go in through the ER.  We've been worried about the cancer spreading to her brain because of confusion etc. They scanned her brain -CT scan and it didn't show anything however, they discovered her Oxygen sats were at 76% and she has pulmonary embolisms in both lungs.  They admitted her and tried to put her on Heprin...which makes the kidney bleed more.  She became extremely disoriented while in the hospital...like dementia.  From the ER visit on, the Dr.'s started talking about DNR's, Hospice....it was a 180 degree turn from the path we were on.  Mom and our family met with Hospice and mom wanted to go that way so, they took her off the Heprin and transported her home last night.  I'm so worried because she could throw a clot at any second.  It seems that she doesn't have much time and although I know no one knows for sure, I wish I knew how much time she has.  It makes me so sad that she is so confused because I don't want her to be afraid or feel alone and there are things to say and do.  I'm worried about my sister and my nephews (mom and dad moved in with them about 5 months ago). My sister is an RN but taking care of your own mother is much more emotional and she's afraid and upset over the reality of the blood clots and being at home and the DNR, even though we think this is the best thing as maybe Mom can have some peace during the time that is left.

I'm sorry, I'm going on and on.  I've been at the hospital day and night since Sunday and I'm sleep deprived for sure. 

It's really been a comfort to read all the posts on this site from so many caring, compassionate people.  Again, I really appreciate all of the responses to my request and every other thought I have is about trying to find a treatment but I know mom has chosen Hospice...she's just completely exhausted from the fight that has been going on for 2 years now. 

Diane 

I feel for your family.  This is such a horrible disease that generally does not respond well to chemo.  When my mother was first diagnosed, she lost her hearing by about 40% due to the chemo drug Cisplatin within the first 12 hours of treatment.  From there, her doctors put her on Gemzar, which she tolerated very well for about 6 months.  Then, with no warning, her tumor markers began to climb.  The doctors switched her to Carboplatin and 5FU, but her hearing seemed to get worse, so they dropped the Carbo.  Now we do 5 days of 5FU every 21 days.  Her tumor markers seem to be holding (her doctor says that this is "great news").  The problem  is that she has very little quality of life.  On day 3 of her infusion, she starts getting mouth sores that last until 2 days before her next infusion is scheduled to begin.  During this time the only foods she will tolerate are milk and tapioca pudding.  She is down to 113 pounds, and I wonder how much chemo she can take.  She was just in the hospital for almost two weeks for a yeast infecion in her bile.  I never knew any such thing existed!  Her doctor finally agreed to put chemo off for several weeks, so we will see how she does. 

I know this was kind of a long-winded post, but my point is that if  your Mom has chosen hospice, that it might be for the best.  I wish my mom would give up the chemo.  I think it will kill her before her cancer does.  Maybe your Mom will have some good days left without the poisonous cloud that chemo leaves over everything.

Hi,

Thank you for your post.  I have been frustrated from the beginning about the chemo because the research says there is no proof that if does any thing to help this type of cancer.  The first round was 6 months, right after the liver resection and it went okay but 6 months later, it came back, more surgery and on and on.  When the Dr. said chemo pills after Christmas, we were concerned and after only 1 week of taking it, the damage was done.  She's never regained her strength, hearing etc.  It was during the conversation with the Hospice rep. that I had my first moment of thinking, "it's too soon, maybe we are giving up too soon" but I know it's because my mom is such a strong person and fights so hard and it's just not familiar that there is something that she can't beat.  I am at peace with her decision and feel it was the right one.  The Hospice nurse came in yesterday and after accessing mom says she doesn't have much time so I hope these next days will be better for her and that we can spend more quality time together. 

My thoughts are with you and your mother and I wish the best for you and your family.  Thank you for your thoughts.

Diane