information for my husband

Hello, I'm a first time blogger.  This is a very interesting site...My husband, Mark, has bile duct cancer.  October 2008 he experienced jaundice(sp?) back pain, loss of appetite and weight loss.  Our primary doctor ran a battery of tests, first looking for hepititis.  Many blood tests later, she recommended a gastro specialist.  After many more blood tests, they finally did a catscan of his abdomen and saw the blockage in the bile duct.  Since October he has been thru 4 endos.  The gastro doc said he would need to have the cyst in the bile duct surgically removed, as he didn't need to keep having stents taken in and out.  Each time they did a 'brushng' of the area and 2 times the tissue came back negative for cancer, but admitted the tests were only 50% accurate. This last ERCP was done about 4 wks ago. The docs removed the stent but couldn't put a new one in because the duct was too swollen.  The docs said they didn't like the way it 'looked' in there.  They sent him home on Friday with no special instructions except to rest. Remember he already two of these procedure done, with no complications.  So I brought him home, made him a light sandwich.  He ate 1/2  then and he other 1/2 early evening.  Late that evening he was in screaming pain. He was doubled over and had horrible back spasms too.  I called the emergency line for the doc who did the procedure.  And he blamed the discomfort/pain on the fact that he was supposed to only drink liquids and the sandwich was the problem.  Mark went until  3 a.m. in that pain.  The doc said we didn't need to go to the emergency room unless his temp went up.  It  never went up....the next morning I called the doc back and he suggested we go to emergency room to have more blood work done and a catscan of the belly again.  We did , and the ER doc gave the info to our doc.  His liver enzymes were off the chart, he was already jaundiced and again horrible back pain.  He was back in the hospital early monday a.m. for the stent placement.  They were successful this time.  The next day we had the results of the brushing and this time it was cancer. 

So, we were referred to a liver transplant surgeon with the local Fl Hospt transplant center.,  We were ref'd to him because of the specialty of operating on the bile duct.

Met with him 2 wks later.  Unfortunately, we were not impressed with him. I'm sure he is a fine surgeon and has the credentials, but we just couldn't connect with him.  Both in his attitude and personality.  Mark has a Pet and CT scan scheduled for this Wed., to see if the cancer is anywhere else.

  Perhaps it's the surgeons job, but he painted the very worst case scenario and suggested the 'whipple' procedure may need to be done. That looks horrible!   We left there realizing we need a very good oncologist and surgeon.  We are exploring the MD Anderson in Orlando, where we live. 

 As you can tell we still have a lot of questions.  In the other blogs, I've read the common thread of 'it takes a very long time to get answers, it's difficult to find out much about this cancer, it seems a lot of time is wasted in the initial months of testing for such things as hepititis.'

Marks insurance plan covers Fla Hospital, MD Anderson, Orlando and Texas and Shands in Gainesville. 

We haven't met with an oncolgist yet.  We'll get busy on that this week. 

So, we are basically in the dark until these tests come back to know which route to take.

Thanks to all of the bloggers for sharing their stories and experiences to date. 

Any info or suggestions would be appreciated.  Thanks.

Hey there....I will pray for your husband. It can be very frustrating dealing with medical professionals.....I can tell you my neighbor was dx'd with bile duct cancer over 6 years ago and they did surgery and radiation and he was out shoveling the snow off his driveway yesterday.....find a doc you can connect with and do all the research the internet will give you!

Thank you!

My husband had bile duct  cancer.  After researching on the internet we bacame very discouraged.  I started just using the cancer message board and found people do surive after bile duct cancer. 

My husband had the stints and removal for a year before they found the cancer.   Prior to finding the cancer we started using Juice + and then also doing fruit juice in the morning and vegetable jucice 3 times a day  This was all with fresh vegetables and fruits with a juice machine.  After the diagnosis we talked to the surgeon and he told us to keep doing the juice to build the immune system.  Others had told us to just try to put weight on my husband since he had lost so much weight.  The surgeon said "build the immune system"  prior to surgery.   It would have been a bonus if he had gained any weight but that didn't happen.,

 My husband had the whipple surgery on June 23, 2008.  The surgery went so very well the surgeon said it was atext book case but said since he had such a strong immune system it really did help him get thru with no problems.  After 3 days I started bringing  him his juice to the hospital after the surgeon said it was ok.   He left the hospital after 10 days with his tubes in place and also on a feeding tube.  After 30 days his feeding tube came out so we just left it out and he started drinking the supplement rather than taking it  thru the tube.  

After 90 days he was back in his fields doing the irrgation of the land and feeding his cows.    He has had lots of blood tests and a Pet scan and no signs of cancer. 

Do have the surgery.  It sounds scary but it saved my husbands life and gave him his quality of life back.  He was 66 when he had the surgery .

He was also on lots and lots of prayer chains with I know helped him thru and very trying time.     But it works.

 

Thank so much for your message.  We met with surgical oncologist at MD Anderson Cancer Hospital in orlando yesterday.  He discussed the whipple procedure with us too.  He is waiting to receive the most recent CT scans, but feels the cancer is in more places than the bile duct,  the original doc that order the CT scans called my husband today and confirmed the mass has spread into the liver.

 Did your husband have cancer any place else?  I'm so glad your husband is okay now.  It is a scary procedure, but necessary.  Where did your husband have his surgery?

 

We didn't know until surgery, but no my husband did not have cancer anywhere except the bile duct.  We were very lucky and blessed. 

We looked at going to several hospitals but our insurance would not allow it.  Our family physican said to meet with the surgeon at University of Denver and see how we felt about him.  If we did not feel confident in him then our family physican would have fought the insurance company so we could to to the Mayo Clinic.  After meeting with our surgeon in Denver we felt very good about the surgery so we did have it at the University of Denver Hospital in Aurora, Colorado.    I think you really MUST feel confident in your physican.   We especially liked that he told us to work on building the immune system rather than just trying to put weight on my husband.  It was alot of work doing the jucie 3-5 times a day.  Some times I felt like I couldn't get anything done except doing the jucie and by the time I got the juicer cleaned up it was time to juice again.  It was also a challenge keeping all the fresh fruita and vegetables on hand,.  I started a garden and grew the beets, tomatoes, peppers, beans, watermellon, cantelope, cucumbers etc.  We live on the western slope of Colorado so we have lots of orchards and were able to get apples, pears, appricots, grapes etc locally.     

We still juice but not nearly as much.  We still take the jucie Plus.  We certainly do not ever want to go thru that again.  My husband had  prostrate cancer about 6 years ago and had surgery for that also.  So we want to keep the immune system built up forever. 

Since your husbands cancer  is not confined to the bile duct what will be the next step?   

Please feel free to ask any questions you might have.  I just I can be a little support for what you are going thru.  Lots of prayers will be coming you way.

 

Joann

 

 

Hello Barbara,

       I just now read your message and want to suggest to you that you look into a  Clinical Trial that is open now for Bile Duct and Gallbladder cancer patients at M.D. Andersen in Texas.    The same Clinical Trial is being held at USC in Los Angeles, CA and is approved by the National Cancer Institute  We are trying to get my husband into the one at USC--he has a May appointment to meet with the oncologist heading up the Trial.  There is, of course, no guarantee that he will be accepted, but we are hopeful.

 If you go on M .D. Andersen's website and click on Clinical Trials, then enter Bile Duct Cancer, you should find the information you need.  Best luck to you and your husband.

Margery

 

.

Hi Barbara, I hope your husband is doing well, I too had cholangiocarcinoma surgery over 2 1/2 yrs ago. The cancer also spread into my liver, it was stage 3 cc. I had the surgery and then had a newer type of radiation called Novalis, see if it's available and if it will work in your case although you may be beyond this phase.  I juice and drink the essiac tea every day and have had clean scans for the past two and one-half years.  There is hope, I'm living proof. I'm 53 yrs old and met with two very unlikeable Oncologists who gave me little hope up untill I met my current Oncologist who took the task and didn't talk the doom and gloom, theres no time for that..Control your husbands destiny, hopefully he's had the surgery and everything went ok, if not find cancer patients, ask them if they have good Oncologists and go see them .  Good Luck and I'll pray for both of you.

How is your husband doing? I hope you were successful in finding a hospital and surgeon that was able to operate on your husband and offer some hope.

Your description sounds very similar to my sister's situation and we're very early in this whole process. Any information you can share is very much appreciated.