Discussion Board Forums Introductions! Mom just diagnosed with CC – Please Help!!

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  • #52412
    peggyp
    Member

    Hi Danny,

    My husband also has Stage IV metastatic intrahepatic CC. He was diagnosed a little over 3 years ago. They originally told us his only chance was surgery as he had a large mass in his liver. When the surgeon went in, he removed 70 percent of John’s liver, his right kidney, part of his colon, gallbladder and some of his stomach. The tumor was the size of a softball and had grown into his kidney, colon and stomach. The surgeon said his kidney had not been functioning for a long time and it was completely shriveled up. He was otherwise in good health and did not have any symptoms other than a pain in his right side. That’s typically the way this cancer works; by the time you present symptoms, it’s already in the late stages. At first, the surgeon was very confident that he had gotten everything, but that wasn’t the case. Six months later, John had multiple tumors throughout his liver. He went through chemo treatment which shrank some at first; but then the doctor gave him a break and the tumors started growing again. After he had an adverse reaction to the chemo, he had to stop. The oncologist started him back on a new chemo on January 4, 2011. This was gemzar/cisplatin/avastin and he went through 11 treatments of this. John developed some bleeding so the doctor took him off the end of May. He just restarted this same treatment plan on Friday as his last scans did not appear to be good. Other than tiredness, John has been able to enjoy life. His appetite is still good and he has maintained his weight. We take each day one day at a time, and pray that God will continue to give him many more days. John’s motto has always been, “it is what it is”, and he has tried to keep a positive attitude throughout everything he’s been through. I think you should pursue any and all options available to you, and tell your mom that there are indeed many people living with CC. Take this time to enjoy every moment you have with your mom as these memories will stay with you forever. I will say a prayer for your family; try to stay strong and positive and keep the faith. Wishing your mom well, PeggyP

    #52402
    pcl1029
    Member

    Hi,Danny,
    1.This link may help you for clinical trial(experimental studies),you can read more about this subject under the research forum of our web site.
    http://www.cancertrialshelp.org/contact.aspx.
    2. For progressive or metastatic intrahepatic CC ,first line chemo therapy like Gemcitabine+cisplatin or 5FU is recommended by most oncology studies; or best supportive care.For experimental studies,clinical trial of chemo and/or radiation treatment is suggested.
    3. Only surgery provide the POSSIBLE cure for cc; chemo and radiation treatments mostly provide tumor control and can extend patients’ survival.
    God bless.

    #52411
    lainy
    Participant

    Danny, I am not sure how a doctor can order a chemo regiment without knowing all the test results. One week is not going to make a difference. I would definitely call John Hopkins or one of the other fine hospitals. I learned to practice “gut” medicine rather quickly and honestly lsiten to your gut, it will not mislead you.

    #52410
    katielinn
    Member

    Hi Danny,
    My mom has stage IV CC and recently had chemo embolization done at Johns Hopkins. We love the doctors there! The side effects have hit her hard (she’s very tired and weak), but we did just get MRI results and the treatment did work! She had tumor necrosis (death) and some shrank. I would definitely send them your mom’s scans and blood work and see what they say. We have to have another chemo embolization done in a few weeks (if she feels better by then), but the fact that the tumors responded to the treatment is giving me some hope. Let me know if you need any additional info.
    ~Katie

    #52409
    d4b182
    Participant

    Thanks everyone!

    The success stories I have heard have been great inspritation to me, and especially my Mom! I am so proud of her as she is trying to stay as positive as she can.

    She is scheduled to meet with a doctor early next week to discuss a treatment plan, most likely chemo (I believe through IV). Is it true that many doctors like to see all of the test results etc. BEFORE treatment begins? I really don’t want to postpone her first chemo treatment unless there is something out there really worthwhile since she wants to get started right away.

    Also, is there someone out there (doctor or non-doctor) that I can call who can either:
    1) Explain about any possible studies/experiments going on which may be able to rid my Mom of this disease
    2) Explain the different types of treatments that have been used on patients with CC (the doctors I have come across here in South FL are pretty much saying that chemo is the best/only way to go, but I suspect there are other effective treatments out there).

    I know I may be asking questions that don’t have easy answers (or answers at all). I can’t put into words how much I appreciate coming on here and seeing all of your responses. I feel like part of this family already and want to both receive and give help in any way I can. Thank you all so much!!

    Again, if you’d prefer to e-mail me privately about anything, my e-mail is D4B182@hotmail.com.

    #52408
    gavin
    Moderator

    Hi Danny,

    Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your mum. I know how you feel right now and what you are going through as I felt the same when my dad was diagnosed. But I am am glad that have joined us all here as you have come to the right place for support and help, and you will get a ton of support from everyone here.

    I do agree with what Lainy and Cathy have said to you regarding a second or even a third opnion for your mum here. This cancer is quite rare and many doctors do not have the experience in dealing with patients with CC. Some links that may be of use to you. This is a link of some of the major treatment centres in the USA –

    http://www.cholangiocarcinoma.org/majorcancercenters.htm

    And this is a link that was created by the members here and consists of the names of doctors and treatment centres who they or their loved ones have seen –

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

    As to your question about how long do most people live who were diagnosed at stage IV, we can not answer that question for you. I know that your head will be spinning right now with everything that is going on, but you are doing the right thing for your mum in seeking further information. The more information you have the better informed you will be. I so hope that you will keep coming here and please feel free to ask any questions that you have and we will do what we can to help in answering them. We know what you are going through right now and we care.

    My best wishes to you and your mum,

    Gavin

    #52407
    nancy246
    Participant

    Hi Danny, You will find this board tremendous support. My husband was diagnosed with extensive stage 4 cancer last October (multiple tumors throughout liver, multiple tumors throughout spine and pelvis, lymph involvement) and in December they determined it was cc. He chose the chemo (from December to May) which he did respond to and it has given him 8 more months so far. The quality of life for the most part has been good and we have been able to enjoy many happy times with our family. Recently his health has started to fail again. He is 60. Like Lainy said chemo is a personal decision. It seems no rhyme nor reason why some respond to it and some do not and why some live weeks, some months, some years. My husband, as well as others on this site, take supplements to boost their immune system (another personal choice). He sees a naturopath. We believe it helped him tolerate the chemo well.
    If the cc is confined to the liver your mom may be a canditate for liver transplant. There are only a couple of places that offer this, one being the Mayo clinic. Of course this comes with a lot of risks but may be worth looking into.
    I wish you all the best with your mom. Keep being the great advocate you are and continue to seek out opinions and options. Nancy

    #52406
    jathy1125
    Participant

    Danny-Welcome and sorry you had to find us. I am a CC survivor. I was stageIV and inoperable, but my saving grace was it had not metasized. I am alive because of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
    Lainy was right on the money saying get another opinion. Our cancer is very rare and real requires a specialist. Dr. Chapman and Barnes falls in that category. You should be able to contact any doctor/hosptial and have all medical test info faxed or sent.
    Please feel free to contact me if I can help. There is HOPE!!
    Lots of prayers-Cathy

    #52405
    lainy
    Participant

    Danny, please know that not all “Cancer Centers” are good at dealing with CC. One of the best Hospitals is John Hopkins. All you have to do is send in her tests and LAB results. If you call them first they will walk you through the procedure. i don’t know of many that would put your Mom through everything again. Don’t know where that doc got that news. They can usually tell by just reading the reports. To chemo or not to chemo is a big personal decision. My husband had to make that decision and was told it would buy him maybe a month. He decided on quality of life not quantity. It should be up to your Mom. Please note that we have had some in her position and they did quite well with or without chemo so its a rough one to decide. By the way please ask the new ONC how many CC patients he has treated. Because of it’s rarity you never want to be with an unexperienced ONC who has not dealt with CC.
    How long do people live? It is very weird as those who were told months are here years and then the opposite. We don’t listen to statistics as they are old and not updated and new discoveries are happening all the time. I like to say that we remain realistically optimistic. Please keep us posted and feel free to ask away on our wonderful site!

    #52404
    d4b182
    Participant

    Hi Lainy,

    Thank you so much for the resonse. My mom is 63 (64 in October). I don’t know how much experience her doctor has with CC, but we are sending her lab work etc. to another doctor hee in South Florida who she is going to see instead (the new doctor works at a cancer center and is more well known down here). The first doctor told her that if chemo works (which would have a 40% chance of working), she would live “a couple months to a year”. If it doesn’t work, less than “a couple months”.

    The original cancer doctor was explaining that many doctors want patients to go through all of the cat scans, biopsies, etc. again and I don’t want to put my Mom through all of that pain. Am I able to send her lab work etc. to places like John Hopkins? If so, which place is the best to send them to?

    From your experience, how long do most people live that were dianosed at Stage IV? Do any go into remission? I’m afraid the answers to these questions are not pleasant, but any hope is greatly appreciated.

    Thank you again so much for taking the time to respond to my post!

    #52403
    lainy
    Participant

    Dear Danny, welcome to our wonderful family but so sorry you had to join us. First I would like to say that we do have members here who were diagnosed at Stage IV and are doing quite well. Next, we are big believers in 2nd and 3rd opinions. I would gather all your Mom’s Test and LAB results and send them to
    either John Hopkins, Barnes Jewish Hospital St. Louis Mayo Clinic Rochester, MN, MD Anderson Houston. At the top of this page is a Search Engine where you can type in Trials and see what posts appear. Read up as much as you can as knowledge is very powerful when dealing with CC. I know that everyone is probably in a state of shock right now but do you know if Mom’s ONC has experience treating CC? What age is your Mom? Surgery is actually the best way to treat CC but I would ask the ONC what is the chemo going to do for her?
    In many cases it does hold it at bay for awhile but what does he say is her prognosis?
    I am sending you best wishes and good luck for some answers and I know more of our members will be joing in. Be strong, Danny and hopefully everything will fall in to place.

    #5587
    d4b182
    Participant

    Hi,

    Last Tuesday, my Mom was sent to the hospital after some routine blood work because the calcium levels in her blood were dangerously high. After some cat-scans and other tests were run, they found a growth on her liver. After further tests they discovered that there were in fact a cluster of growths on her liver that were cancer and it spread from her bile ducts. She was diagnosed with cholangiocarcinoma and they told her she was in stage 4.

    This of course has been very hard news to take in for my Mom, myself, and the rest of our family. The doctor said that the best way to treat this is chemotheraphy. Surgery and/or a liver transplant weren’t options since there were so many growths in her liver already.

    To anyone taking the time out of their day to read this: Do you know of ANY experimental studies or anything along those lines out there that can help possibly cure my Mom? Or at least give her some extra time with us? She has never had chemo before and has a pretty advanced stage of CC, so maybe there is something out there which my Mom would be a good candiate for.

    If anyone knows of anything that might help, or even just has some encouraging words or advice, I would appeciate it so much.

    If you would rather reach me by e-mail privately, my e-mail is D4B182@hotmail.com

    Thank you all for taking the time to read my story and good luck to everyone and their families out there struggling with this awful disease. I am praying for all of you.

    Danny

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