seasheller
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Sorry I haven’t posted in a while. My husband is still feeling yucky, but is eating a little more.
One day I will feel so encouraged when he feels a little better and then the next day, he’s back to feeling weak. It has been an up and down thing.
We see the gastroenterologist on Fri. May 4 and he will be scheduling the ERCP for next week. I hope after the bile ducts are examined or opened with a stent, he will start to feel better. Thanks for all the responses to prior posts. It helps so much to have the thoughts and support from others.
God bless you all. ~~ JeanHi again Mary — There have been so many posts that I have read in the past. At the moment, I can’t recall your husband, Tom’s CC. background.
Does he have a liver tumor along with the bile duct involvement? What did he have radiation treatments on? Guess I never heard that radiation could be used. I am really concerned when it comes to getting chemo. So many have talked of how it made them so much worse and they wished they hadn’t had it. You asked if my husband has any itching — no, he hasn’t had that. After he was first hospitalized for the pancreatitis back the first of Sept. 06, and was given IV’s and antibiotics, food never tasted the same, but he still had an appetite. It was just a couple weeks ago that he suddenly lost his appetite. He has had blood tests at the oncologist, with nothing dramatic except a slight elevation in the white blood count. He went for an ultrasound and that showed no change in the size of the liver tumor, but there was a dilation of the bile duct. He goes every two months for an MRI — no changes in the last two. We’ll all keep praying for our loved ones and hope for the very best. In the meantime, I’m having a hard time sleeping at night for the constant worry. I’m sure we all share these times.
We have to keep the faith and go on. Thanks for letting me vent my frustration. God’s blessings to all. ~~ JeanHi Mary — Thanks for your responce. I have wondered about the purpose of the ERCP since my husband has not become jaundiced. He does have discomfort in his abdomen, somewhat like it was when he had pancreatitis at the onset of the liver and bile duct cancer discovery. His white cell count was up, but the other pancreatic readings were mostly normal.All this keeps us guessing what is going on. His appetite is very poor — unusual for him. He does not want any meat and there isn’t much that sounds good to him. I worry about his nutrition. Right now, he can’t have dairy products or fatty food. He can’t have Ensure or Boost, we’re assuming. Did your husband have an appetite problem at any time, Mary? Are there any cases out there where a person’s appetite returned to normal and if so, what was taken to change this??? Any pills or anything?? It’s all so frightening and frustrating. Love and prayers to all, Jean
My husband was going along symptom free and now all of a sudden the CC seems to be starting to show its “ugly face” as I have feared. He is going to go for an ERCP in a week and a half — don’t know whether the bile ducts are opened just with that procedure or whether it is always necessary to put a stent in. He is not jaundiced at all at the present time, but he just does not have a taste for so many different foods. It’s difficult to know what to fix for him to eat.
If there is anyone reading this that has had the experience with the ERCP procedure, I would appreciate being enlightened if it helped or not.
I know part of it is for diagnostic purposes, but opening the bile ducts is the other reason for it.
Heartfelt prayers and love to all.
~~ JeanHello Maryellen & Joyce — I’ve been wondering whether your loved ones had any treatment or what their symptoms were to have lost them in such a short period of time after diagnoses. There are many successes that we read about and then others have such a short life span — it’s heartbreaking to hear. My heart goes out to both of you!!!
~~ JeanHow heart wrenching these losses are to read about, especially when most of us reading it have a loved one suffering from CC. It is a lesson to treasure our lives and love each and every day.
God bless you and comfort you in your sorrow.
~~ JeanJeff, that’s great that you are choosing a sensible path of treatment. I agree that too much chemo at one time can be toxic and you need time to build up your immunity again. When you are feeling good and can do some gardening, go for it!!! God bless! ~~ Jean (Seasheller)
Dear Father’s Daughter (don’t know your name!)
It’s pretty hard to tell what you should do right now when doctors are trying to decide how to treat him. If and when they decide, if you and your family aren’t comfortable with the decision, it’s always a good idea to get a second or even third opinion. When my husband was diagnosed, I had the feeling that we should rush into treatment. Now I’m glad we didn’t, being he still has no symptoms and feels well. The tumor is in the right lobe of the liver and into the bile duct, inoperable because it was too close to the portal vein. The tumor is 7 cm. After reading all the different cases in this CC site, I realize that everyone is different — it is so hard to tell someone else what they should or shouldn’t do. As I have said, we are not seeking chemo until the cancer “shows its ugly face!” For your sanity, if there are other sources where you can get a second opinion on treatment, it’s comforting to do that, then you know what options are the best for your Dad!
God bless you in your decision making! Everyone that reads these messages knows just exactly what you are going through — we’ve been there!!!
~~ Jean ~~ (Seasheller)Dear Chris — Was wondering if Ambrotose is a nutritional supplement or is it supposed to be a substitute for chemo? Nice to know that it is helping your father-in-law.
~~ Jean ~~Hi everyone! My husband is still hanging in there after the diagnoses of CC in early Sept. ’06. He had been having Cat scans, but now the oncologist has changed to ordering MRI’s because the contrast dye for the Cat scans could pose a problem on his kidneys. The MRI proved to be a much sharper image and fortunately that scan showed no changes in the size of the liver and bile duct tumor. Now we wait another two months for the next one. He still feels good and no symptoms, so the oncologist is going to continue monitoring it with no treatments necessary. We are blessed so far. I’m a firm believer now, that even though we know the tumor is there, if there is no pain, no jaundice, no weight loss and still a good appetite, leave everything alone until the cancer “shows its ugly face!!” We’ve gone through the emotional and devastating affects of just hearing the news of having the cancer. Now we are living and enjoying one day at a time and treating each day as a banquet as our doctor originally told us to do.
We continue to pray everyday and try to keep a positive attitude. Our prayers are for each and everyone of you who share this disease. God bless you all!!! ~~ Jean (seasheller)Hello everyone — Yes, this is a very confusing disease and apparently so different for so many people. My husband is still feeling well and looks good — no symptoms yet. He was diagnosed with CC in Sept.’06. He has had 5 Cat scans and, just last week, had an MRI. His creatinine (sp?) was a little high, so the radiologist didn’t want to administer the contrast dye.(could damage kidneys)
With no contrast in the scan, defining any changes in the size of the tumor made it difficult. The oncologist has decided to do MRI’s from now on — no dye required. My husband has an 8 cm. tumor on the right side of the liver and into the bile duct. It is surprising that he does not have symptoms such as jaundice, etc. The oncologist is not starting any chemo or anything at this time.
It would be wonderful if the “thing” just sits there for quite a while. We continue to pray and keep a positive attitude.
God bless all of you who are battling this disease. We all continue to walk that unknown path. Seasheller (Jean)Dear Maggie — Our deepest sympathy to you! Our hearts were with you with each message you wrote about your “Mum”! Your compassion, concern and love for her came through loud and clear. You tried so hard to get the care she needed — you were a “diamond in the grass” everyday for her.
What a dear daughter you were for a wonderful mother. Our thoughts and prayers are with you with sympathy and love.
~~ Jean & Marv (a CC patient)Lynne — Just read your post and want to wish you well with your chemo treatments. Glad to hear you are tolerating them. Keep the faith and a good positive attitude. It helps so much. Our prayers and best wishes go out to each and every CC patient reading this. ~~Jean
It is so hard to make decisions about having surgery or not. From my husband’s experience, I am so thankful that he didn’t have surgery which was the only option for cure. His tumor on the liver was 7 cm. and into the bile ducts. Surgeons at Cleveland Clinic said it was too much of a risk being too close to the portal vein. We were devastated to learn this. Now we feel so blessed that he didn’t have the surgery. He is feeling fine and still does not have symptoms. He was diagnosed the first of Sept.’06 — looks healthier than ever. He sees an oncologist, but the doctor is not starting any treatments of chemo until there are symptoms. We are living one day at a time and enjoying life. ~ Jean
Hi Ron — It is quite normal for you to want to vent your feelings and also a healthy thing for you to do. How thoughtful of you for not wanting to put stress on your family by letting off steam to them. They also have these same feelings that you have — the care of concern of family members is deep seated also. A positive attitude is so important and prayer has been proven to help in so many cases. I will pray for you and put you on a prayer chain through our church and many friends.
God Bless you!!!! ~~ Jean
