Topic: Introduction and question

I've been reading this site since my husband's diagnosis in 8/06.  We were in the Mayo transplant protocol until staging surgery revealed metastasis to a node in November.  We've been trying to find our way ever since. 

Chemo or no chemo, and dealing with the ominous threat of frequent cholangitis.  Metal stents were placed at Johns Hopkins in December.  We thought it would afford us more time between cholangitis attacks.  I think Hopkins' motivation was to make us go away.  Which we did, and we won't go back there.  We will now go to U Penn for ercp proceedures.

We had one stent occlusion since the metal stents were placed and this was dealt with at Penn with a plastic insertion into the metal stent.  The left stent is now unaccessable.  My husband is trying to be active, he's working almost full time and we just returned from a trip to Paris.  Fly fishing this spring is his greatest goal.

Some of his physicians are talking about percutaneous drainage as allowing him a more active life with less of a threat of these dangerous cholangitis attacks every month or so.  I must admit, he's really not crazy about tubes permanently coming out of his body.  The last cholangitis attack almost killed him so we are looking for any advice or experience with percutaneous drainage.

There is also differing opinions on remaining on antibiotics.  Some say stay on them the rest of your life, others say you need to get off of these for fear of antibiotic resistance.  I see both sides of the issue.

We are trying 5 FU on a weekly basis for the last 2 weeks.

Any advice, words of encouragement or prayer will be greatly appreciated.  We are both 55 years old and looked forward to a great retirement and future full of many things until this disease upended our lives.


Re: Introduction and question

Hello Pam,
   I'm sorry to hear about your husband. You are not alone, unfortunately many of us have had our great plans of long life and dreams of retirement upended. My husband's Dr. has wanted to put in a metal stent. We have said no up to this point. It seems too permanent and my husband has been able to have his plastic ones changed without any problem up til now. He does get bouts of cholangitis usually when it is time for the stent change. They have been leary of giving him too many antibiotics because he is allergic to 2 of the main ones, Flagyl and Cipro.I think there are people that do take them on a routine basis and do alright. I would be afraid of  building resistance to them.I don't know much about the U of Penn but we went to the UPMC and were impressed with their program. If you read you will find out a lot of information about different chemo treatments. My husband has mainly just had radiation along with Xeloda but if it becomes necessary for him to go on chemo I have learned a lot by reading here. At least I know I can ask about different combinations etc and sound informed. That is important. The Drs. need to know that you know what's going on. You need to ask lots of questions and get more than one opinion.   Good Luck!!    Mary

Re: Introduction and question

Hi Pam,   Just wanted to say that you and your husband have a few prayers coming your way.  My Journey started at Mayo 8 years ago.  I just turned 51 this pass January and wonder at times if I'll see my 52nd birthday.  Monday will be my 30th wedding anniversary to my best friend, love of my life and  top supporter in the world.  Each and every day without fail, the what if 's cross my mind.  The road has been bumpy at times but we continue to keep each other as motivated as possible.  I've had a few close calls with adverse side effects from different combinations of chemo other wise my prayers of staying around with all my loved ones a little longer seem to be getting answered.  Like you and your husband we to had some retirement plans.  We still keep hope that some of them will occur.   It is so hard to remain positive when the big picture is so grim but I honestly believe the magic bullet is just around the corner.  If I can just turn that corner along with others with this dreadful disease, we can all take claim that we remained persistant long enough to make a difference just through interaction and sharing whats working or not and by keeping an eagle eye on what is happening on the horizon.  I look back in rememberance of those individuals from this site and how much they contributed to finding a cure.  They without doubt kept the motivation and drive to finding a cure rolling along and I plan on doing the same.  I guess I have gone off on one of my heart felt ramblings.  Keep faith and hope and live each day to the fullest.  Tell your husband fly fishing is certainly a goal that would remain on the top of my list as well.  Again, prayers coming your way and keep your hopes flowing and them trout or bass a jumping.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Introduction and question

My husband had percutaneous drains after leaving hospital afer a failed resection.
he had them becasue they were planning Photodynamic therapy to open up the bile duct. They used the same tubes as the drains.
The external drain was pretty straightforward and can be flushed if it gets blocked. They needed very little maintenance.
My husband had four attempts at ecrp before they successfully inseted a stent. Personally and I have no evidence at all for this, I think that trying to push the stent through the tumour - which was obviously very dense, made his overall situation worse, I think it seeded the cancer elsewhere.

Re: Introduction and question

All the risks and benefits need to be understood.  I consider PT tubes a last resort when bile can not be routed to the small intestines.  You have to understand that if it is draining to an external bag, it is not being used in your body for its intended purpose and this impacts digestion and overall well being. 

I would only consider a PT tube if the risks of infections are too great or the blockages or strictures are causing serious jaundice.  The liver creates a tremendous amount of bile.  My brother empties his bag 4-5 times per day and it adds an extra 30 minutes to his morning routine to clean, flush, rebandage.  He says he would do anything to get rid of the bag, he feels it limits his activity and feeling of wellness with the bag strapped to his wasit or thigh.  They currently are talking about adding a second tube and bag to the left side of his liver and he says "no way".

Re: Introduction and question

Pam, Prayers are coming your way.  My husband was diagnosed this October and just finished the Mayo protocol, he has not yet had the staging operation.  For my young children's sake I hope he can get the transplant, they are three and six and think the sun rises and sets on their father.  I am curious what they thought before the staging surgery?  Did your husband have a visible tumor?  Dr. Brown, Emond and Seigel at Columbia have a new protocol, not sure if it is for you but it is for advanced disease, it is a combination called GTX and has been used in Pancreatic with some success.  Good luck and God Bless.