Topic: Hello to All !

My name is Rhonda and I am Bob's wife. Bob is a very sick fellow right now, he is beginning to be treated for metastatic chlangiocarcinoma. Our adventure started with a emergency room run on New Years eve of 2004. He had pain that moved around some but was mostly in the right shoulder. I of course thought of a heart attack, he has had two prior heart attacks and is only 47. Well he did not have a heart attack, but they gave him pain meds and advised him to follow up with his primary doc. We got him an appointment and the doc ordered a full blood panel, because we didn't have any recent results. Tests showed extreme elevated liver enzyme levels, about 3x normal so we were refered to a gastronologist. Gastro doc preformed ERCP and pretty much immediately diagnosed cancer even without biopsy results in yet. We did get the results which confirmed cancer shortly after. We were then refered to the University of Cincinnati Hospital which has a pretty extensive heptobilliary dept. The surgeon we met with told us all the potential pitfalls of surgery but felt we should try due to my husbands age and general condition.  On March 17, 2005 Bob had a whipple procedure, they did not touch his pancreas or liver. They did remove his gall bladder (which we were told was hardened by scar tissue) and a large part if not all of his common bileduct, they rerouted using small intestine to replace duct to liver. Bob did pretty well for awhile and then started chemo and radiation. He was on continuious infusion of 5FU and received injections of interferon as well as regular infusions of mitomyison. All the chemo and radiation was really rough for him he was hospitalized a couple of times during treatments and had to do neupogen a couple of times. He got through all that pretty well and only had to miss two treatments due to illness. Bob was pretty good for about a year then all the sudden it seemed like his enzymes got high again and he started to jaudice and get fevers. Bob had billary drains put in early last year, first only two and eventually three. The drains helped for awhile and all we had to do is keep up with the change schedule which is about every 8 weeks. Well right before Christmas Bob was sheduled for a change and instead of a change the Doc flushed out the drains and sent him home. Bob got sick all through X-mas he felt awful and looked awful and finally started a fever, I took him in through emergency and he was admitted for about three days. Mostly all they did was antibiotics and change tubes, the thought was that he had a infection. I took him home expecting him to gradually get better. Wrong answer! He was back in the er the following weekend with fever, throwing up and diarhea still as yellow as ever! He went in on a friday and they ran a MRI and did a Ultrasound and lots of blood work. On Monday they again checked his tubes by cholangiogram. I was available when the doc finished, but he was acting a little strange and didn't seem to want to deal with me, so I went home. I had sat all day to hear what was up, so I wasn't happy when I left. I got home and had a call on my machine from Bob to call him. The Doc after I left read his MRI and told Bob that it looked like the cancer was back and was now in his liver and peritoneum. He needed to confirm this info by biopsy, but he said it did not look good. I was really unhappy to say the least that this Doc dropped this bomb on Bob while he was alone. We talked it out and Bob was due for meds thankfully and could just go to sleep for the night. Biopsy was done the next day and confirmed cancer, more than one spot in liver and a large mass in abdomenal wall. Surgery is not an option, my husband's surgeon refered us back to his oncologist for chemo. That's where we are on the journey now. Bob is taking Tarceva  orally and receiving regular infusions of Gemzar. He is an emotional wreck. I worry constantly that he doesn't have enough strenght to fight this fight again, he just doesnt have the reserves he did when he started down this road. I would appreciate any ideas to help me feed him with out triggering nausea,he will throw up even water at times. He feels really bad and looks worse any suggestions will be appreciated. I was amazed to find this site, I found it by accident! I was on the rare cancer site, but it seems like this is a more actively posting group.                   Bless You All,
                                                                                   Bob's Wife

Re: Hello to All !

Hi Bob's wife,
  I'm sorry to hear about your ordeals.My husband was admitted through the emergency room with severe sickness and was also told his diagnosis when he was alone. Luckily my daughter and I arrived an hour or two after he was told but it was devastating to us. We just hugged and cried and then he even thought that I might have it too because they told him it could have been caused by spraying chemicals in our greenhouse/ farming business. My daughter just about lost it thinking she was going to lose both of us. Things got better though after we spoke to Drs. that really knew more and were more optimistic. As far as nausea, my husband experienced a lot when he went through his radiation/chemo treatments. They would give him Zofran either in pills or IV. That really seemed to help. Also compazine or phenergan. I would make rice pudding, oatmeal. or anything that was easily digested just to get calories in him. Gingerale helped because he had a lot of gas from gastritis and Pepcid AC also helped. It sounds like your husband really needs some anti-nausea meds though if he is too sick to even drink. I hope you find something that helps soon. I was more worried about my husbands health during that time then ever because I realize how important nutrition is in fighting this disease . I felt helpless just as you probably are. I hope you are able to find a way to help your husband feel better. My thoughts are with you. God bless. Mary

Re: Hello to All !

Dear Rhonda:  I am so sorry to hear about your Husband and all he has been going through.  He has definitely been fighting a courageous battle.  I really don't know what to say to you except to stay positive and get in touch with a hospice facility and get some advice on how to lesson Bob's pain and nausea and make him feel more at ease.  His oncologist probally already has prescribed something for both but sometimes a change helps a little.  Rhonda, I can continue to beat around the bush, but the truth is what you already expect.  There is a very few who have beaten this type cancer and those who do usually have recurrence.  But! my motto is perserverance, hope, and pray for the best and don't try doing it alone.  I've personally have had liver resection (left lobe), gallbladder removed, 3D conformal radiation and just started on my 4th different regimen of chemo 3 days ago.  Like Bob my body is at a weakened state and I didn't have the whipple procedure or required stents as of yet and I will have to think seriously before I even consider it.  Rhonda, I don't want to sound overly negative, but sometimes we have to stop and re-evaluate what is going on and make sure it's what Bob wants as well.  We all hope that the miracle cure is around the corner or something that will slow it down.  I'm currently on Oxaliplatin and Xeloda.  I'm not sure how it 's working but it is causing pain in my liver and joints and nueropathy instantly in fingers and face and can't touch nothing cold or breath in cold air. I have to microwave my water before drinking.  Rhonda, I've said it many times and heard it many times; different treatments respond different on everyone so we pray and keep hope as long as we can.  Again , I'm so sorry that Bob and you have to endure this monster!  My heart felt prayers are coming your way.  Please review other experiences and some of the family Blogs on this site. I have found them to be very informative as well as heart breaking but the truth and reality of cholangiocarcinoma shines through.  JeffG.

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

Re: Hello to All !

Rhonda

I

Re: Hello to All !

Rhonda,

I am sorry to hear about your husband.  I to am going through the same thing.  My 37 year old husband was originally diagnosed with pancreatic cancer on November 13, 2006.  After his surgery, (whipple) we were told he actually had bile duct cancer.  I am wondering were they able to remove all of your husband's tumor and leave clean margins?

We were told that Scott's surgery was a success.  They were able to remove the tumor. His tumor was in his pancreas, bile duct and 4 lymph nodes. 
Scott began chemotherapy (Gemicitibine) last Thursday.  They are given him the largest does possible due to his age and relatively good health.  However, he was not able to have a treatment this week because his white blood cells were so low. 

We continue to main optomistic but after reading your story am not sure if we to will be going through the same thing.  It is nice to have someone to talk to that knows what you are going through.  We to are young and feel that we have a long life ahead of us.  God Willing!! 

Cathy

Re: Hello to All !

Rhonda,
I too am very sorry to hear about the struggle you and your husband are enduring. When my father became too ill to eat it was a battle to get anything into him. He lost over 50 lbs (only started at 145) and it was terrible to see because this was a man who truely believed in the healing power of foods, being razed by an old czechloslovakian gramma. Towards the last few months he really enjoyed fresh fruits, jello, pudding, oatmeal and grits. We tried to add anything with a few calories to it but anything fatty just made him sick. Bile is meant to break down fats and when our bodies sense lipids there are chemical signals sent to the gall badder and pancreas to contract and "spit" bile into the first part of the small intestine through a tiny sphincter. Anyway I know you want to add calories but try doing it through easily digestable carbs because pushing fats on him may induce vomiting, since the system that is meant to break them down is not well.
Once again, everyone is different and your husband may have an easier time with fats than did my father. Honestly, the bottom line is try to keep him comfortable and happy. Don't be afraid to call his doctor and demand nausea medications, at first it may seem like they won't be covered by insurance, but believe me ( my fiance is a pharm) you can get almost anything covered if you pursue it.
I wish the best for you, your husband and your family. My father passed away less than a month ago, after being diagnosed in July. I miss him dearly, but I know in my heart that he lived a much richer life dying at 49 than, many others live in 85 years. Take comfort in knowing that you have done and will do everything in you power to keep your husband alive, but most of all happy.
This cancer is a cruel monster and I am once again terribly sorry for all that you are going through...
Take care,
Kara