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(2 replies, posted in Blogs)

A couple of us have made an amateur support group on Facebook for anyone who wants an easy way to talk or post. It is:

https://www.facebook.com/groups/CHOLANG … p/?fref=nf

Hi Julie,
I also had H. Pylori several years before my diagnosis. I had the exact same pain, and thought it was my gall bladder. After many tests they finally said no, it wasn't my gall bladder but said I had an ulcer and treated me for H. Pylori. I thought I had another ulcer when the pain came back 5 years later. They were sure it was my gall bladder Again. I wonder if they were wrong the whole time....

3

(1 replies, posted in Nutrition)

Why haven't they told us more about Bile Salts?! They are awesome! I had a resection 17 months ago and have had ups and downs with my ability to digest many foods. I stumbled upon bile salts when I was googling about pain and gall bladder removal . I ordered some and they are great. I take 4 before I eat and I can actually feel a difference take place. I would say try them if you have trouble with digestion after a resection , and research if they could be used without a resection to help release the bile. My doctor said they don't prescribe them but I could try them if I wanted. I'm glad I did!!

I had my liver resection 8 months ago and so far so good. My last CT and labwork all looked fine.
I don't go back for another CT till May. I did not have any chemo or radiation after the surgery due to complications. Here is what I am doing right now to keep as healthy as possible.
I am no longer working at my stressful job. I have started eating healthier. I bought a juicer and love it. I never realized how unhealthy my diet was before. I try to eat mostly fruit, vegetables and lean meats. I eat sugar when I crave it, but not nearly as much as before. I also have been taking milk thistle every day as well as something called systemic enzymes. They are supposed to help with inflammation and I feel like they do work. I have what I feel is scar tissue pain at my incision site and I find that I feel better when I exercise and stretch my stomach and side muscles. I have also been doing a lot more praying and am back in touch with God. I am feeling really good about life in general and hope to have a long and healthy future. I made a facebook page to talk and write about cancer related topics. Feel free to post on it if you have anything to say!  The address is:  http://www.facebook.com/Cancerfreedebtfree

5

(6 replies, posted in General Discussion)

I have a question. I was diagnosed in June, had surgery in July, complications for next few months. So I never had the followup chemo. Now I am 6 mos out and oncologist says no chemo, just keep monitoring me. So what am I catagorized as? Do I have cancer? In "remission"? Have survived cancer? I don't really know what to say when people ask. I am grateful for whatever stage that I'm in right now and enjoying each day as it comes.

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(8 replies, posted in Chemotherapy)

Hi,
I have a question about chemo. I am seeing an oncologist on Monday for a 2nd opinion regarding adjuvant chemo. I had a resection in June with removal of ducts, 60% liver and gallbladder, clean margins and no lymph nodes involved. The first oncologist has little experience with CC, and he reccommends Gemzar with Xyloda and a second opinion.
I am wondering what chemo would be actually doing if there is no cancer present at this time. I'd appreciate any opinions so that after I get my 2nd opinion I can make a decision. Thanks!

7

(13 replies, posted in General Discussion)

Help!
I need advice. I have the internal kind of drain with the holes, as well as an external drain with bag. It has been three months and my skin around the opening is sore and red. I also have pain inside if I have to move from laying to sitting. I feel like the drain is trying to come out. I have a cholangiogram on Monday. I wonder how bad it is if they remove the drain and then later it needs to be put back in? They seem like they prefer keeping them in forever. My drain tube has been "snagged" and pulled on several times throughout my various activities . What are the chances of getting it taken out and NOT getting another one?! Any advice would be helpful smile

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(22 replies, posted in Introductions!)

Hi Rena,
I'm so sorry to hear about your dad. I am new to this site but it is great to have found it! I was diagnosed in June with CC and was able to have a resection to remove the ducts, gallbladder and 60% of my liver. I have had those chills too a couple times. The best thing I have used every day since this has begun is my heating pad with an extension cord which I take every where. Both my husband and I are taking antidepressants that were prescribed while I was in the hospital. Chills with a fever need a trip to the doc asap. It is easy to get an infection in my experience.
I am from Ohio too, the Akron/Canton area. I am also still debating about chemo. I go for a 2nd opinion on the 26th. It is an individual decision, so whatever your parents decide is best for them. I'm glad to hear that he is trusting God on this. For me, I have complete peace, which I am sure comes from Him.
I hope your dad and all  of you can enjoy your holidays and just take each day as it comes.
Best wishes,
Laura

Hi everybody, and thanks for your responses. I don't see a way to reply individually so I will just reply to all here.
Lainy: My leak IS internal, but I don't know if I could go with no food to heal. I am at 99lbs, up from 95. I have had a hard time getting my weight back up.
Marions: thanks for the links.
Pamela: I'm so sorry that your daughter is going through this. As a mom, I would much rather be the one who is sick. I pray that she gets her surgery or that she is healed some other way.
Gavin: thanks for the welcome!
Lisa: I am originally from Canton Ohio and graduated from Massillon! And yes, drains are a pain!!!

10

(15 replies, posted in General Discussion)

Hi Tiffany,
What part of Alabama are you in? I get treated at UAB. How were the original spots treated? I am still waiting to see the oncologist about adjuvent therapy. I hope you hear good news.

11

(8 replies, posted in General Discussion)

As a patient, I can sympathise with the nurse. While I was in the hospital recovering from surgery due to an abscess I was so tired of being in so much pain, I wished for a shot to put me out of my misery. Thankfully I recovered and am so glad I survived that whole ordeal.

I had my surgery in June, still have an external drain and also  still have pain. I have a pain in my right rib area where my abcsess was, as well as pain on parts under my scar which I assume is from scar tissue or sore muscles from new use.

I would love it if you could do this because if it is an old post I wonder if they are still here. Also, is there a way that it could be organized in member set up when the patient was diagnosed so we patients can know how long people have had CC and survived? Thanks.

14

(11 replies, posted in Suggestions)

Is there a thread for member locations now? If so, what is it listed under?

Hi,
I am glad to have found you all. I am a 49 yr old wife and mom to a 24 yr old and an 18 yr old. I was diagnosed in May of this year. I am very blessed to live 3 1/2 hours away from UAB, which a great hospital. I had a resection in June, in which they removed the bile duct areas, my gall bladder, and 60% of my liver. I got an infection the first week out and spent 35 more days back in the hospital. I've had three external drains, two at one time, and now have one at home. My leak refuses to heal so far, which is annoying. I am going for a second opinion with the oncologist at UAB. My local one felt I should because he wasn't sure of the best course for me. I can't have radiation because of my unstable surgical areas I guess.
I am completely at peace with my situation, which I imagine because I am a Christian and know I will see my family and close friends again. I do hope I can live for many more years so I can see my kids married and have grandchildren. I will ask questions I have about other topics on the other discussion boards. To all other new people, I say, never give up hope!!!