New Diagnosis: Faith Hope and Love for Mom

Discussion Board Forums Introductions! New Diagnosis: Faith Hope and Love for Mom

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    Hi Cuz, I thought you were hip and trendy as “pink” is the new color for men!!!!


    I am surviving 23 months after initial diagnosis of non-operable IHC and still going, just like the Energizer bunny (Cuz – not a word about how I might look good in pink). I have posted elsewhere about my first oncologist and her treatments and why I am on oncologist #2.

    I had many of your mother’s initial symptoms – heard the same story about six months if I did not start chemo. About the survival time – you can find stories here about patients who have survived years beyond what was initially diagnosed. Absolutely no reason why your mother can’t be one of those success stories. As a few others have said in other topics “We don’t come with an expiration date stamped on our heels.”

    Same issue with inexperience of the oncologist. The entire center had only seen four patients in three years. The time for the biopsy results to come back may simply be because it was done off site – shipping, handling, and waiting in the queue probably took most of that time. One suggestion – make sure any excess biopsy material is sent to which ever hospital you choose. It might save time. Also get any slides returned – all of this is your mother’s body – her property, not your oncologist or the lab doing the biopsy. Might save the new onc some time.

    Just to add one more on the band wagon – you need to put as many miles between you/your mother and that onc/gastro as soon as possible.

    I started chemo about two weeks after being diagnosed, so you have time – don’t panic. As said by others, there are many reasons to be hopeful. But this roller coaster has its downs as well as its ups for both of you. Your lives are changed. That will take time (and probably some tears) to adjust to. Normal.

    Something to start immediately – live your lives. We all know there’s an elephant in the room (can smell the peanuts on his breath) but that’s no reason to drive you to desperation. Take time to look at the “signatures” at the bottom of some of the members of these boards – they are our philosophies. You won’t find a surrender in any of them. Then sit down with your mother and write YOUR philosophies. You don’t have to add them here but you will have them to help you through the dark times. Not sure if you ever saw the “Red Green Show” on PBS. One of the recurring segments has him ending with “Remember, I’m pulling for you. We’re all in this together.”

    Peace, and good night.




    Wow, you have “gotten your arms around” your Mom’s situation quickly. You are and will continue to be a great advocate for her. The literature found for CC on Google, and the diagnosis/treatment plans/prognosis offered by even very good general physicians can be very disheartening. Because this is such a rare cancer, it is imperative that patients work with a top medical center. They are aware of the latest research and potential treatments available. They understand when it may be feasible to resect, and if not possible, what the next best line of treatment is. All the other medical facilities take the palliative approach only.

    I completely agree with Cathy and Lainy. My husband’s doctors, including the surgeon, told him resection was not possible. We went to UCSF medical Center here on the west coast, and their expert surgeon successfully performed the surgery in January. Just FYI, John’s Hopkins and Columbia Presbyterian both gave us remote second opinions. They were very helpful.

    Hang in there and please keep us posted on your Mom’s condition.




    I totally agree with the others and am glad you already have things moving in the right direction. I too am sorry you have had the need to reach out to us, but know that you have come to the right place. You will get all the help and support you want or need for you and your mom from all of the caring people on this site. We’ve all been there and know what it’s like. No matter what the issue some one here has dealt with it too and will be happy to help you out in any way that we can.

    Hoping for the best for your mom. Take care and let us know how things are going. We truly do care.




    Your response brought the first tears of joy that I’ve had in several days. My heart skipped a beat when you mentioned hope, as your response definitely is hope! :)

    Cathy and Lainy,

    Thank you so much for the words of wisdom. :)

    I have started the referral process at MDA in Houston. They said that they will get her medical records, and have already verified her insurance. I will also contact Dr. Chapman tomorrow to see what he says. All fingers and toes are crossed. My mother needs a physician that has a heart and a treatment plan for both short term and long term success. I will also contact Mayo to get the ball rolling with them as well.

    It truly feels like we are turning the corner and I know that the right door will open.


    Thank you for the recommendation on Sarna. I will look into it. I hope both you and Cathy don’t mind me looking through your many posts. They along with the countless others on here have given such insight, hope, and much needed strength. From the bottom of my heart thank you.

    With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,



    Dear Jason, I totally agree with Cathy. Call Mayo and MDA and see where you can get in quickly. I also do not understand why they cannot put some stents in. It would relieve the Jaundice fast. When my husband itched before diagnosis he used to use ice bags and cool showers to help with the itching. We also found an over the counter cream called Sarna and it works very well for temporary relief. I am so sorry you are having to go through this but what ever your course make sure you have a team experienced in CC. Please keep us updated as we truly care.

    You may find the following link helpful:


    Jason, RUN don’t walk to a second opinion!! Your mom’s diagnose and treatment so far is subpar. Our cancer is very rare but not as rare as 7 years ago when I was diagnosed.
    I am excited to tell you I just did 6 years cancer free!! I have an amazing story to share and keep it posted at
    I am proof there is HOPE!!
    My hero is Dr. Chapman at Barnes-Jewish in St. Louis MO. I have posted his name as many times as I can and several of our CC family have consulted with him and have had there dire prognosis changed for the better!! Dr. Chapman is not only a great a great doctor but a kind compassionate man with a heart. Dr. Chapman is also phone friendly an will take your call and decide quickly if he can help, he knows time is not our friend. , and will not bring you to St. Louis if he didn’t think he could help. Brenda on the farm just posted her husbands1 year good news story and Dr. Chapman was there second opinion!!
    MD Anderson and Mayo Clinic are cutting edge places for CC and I am sure you will here great stories from our CC family quickly.
    Please contact me if I can help 618-568-3247
    Lots of prayers for your mom


    Family is so important to all of us. My wonderful mother was diagnosed with Cholangiocarcinoma two days ago on Thursday, June 4, 2015.

    I thank you for taking the time to read about her, as well as offer up any suggestions, guidance, and direction.

    Approximately 6 weeks ago mom was not feeling well. She had a temperature that varied from 101 – 103°F. She went to the ER. They ruled out pneumonia and said it was bronchitis. For one reason or another they decided to do a blood test. The blood test showed that her liver enzymes were elevated. This prompted them to do a CT scan. When she came out of the CT scan all of the medical staff’s demeanor instantly changed. This upset her greatly. Especially after they told her that there was a large mass on her liver. This was on a Sunday.

    They gave her a cd copy of that CT scan and told her to contact her gastroenterologist asap. She did just that. It took the gastro several days to read the report. During this time the fever subsided. However she started having pain in her upper middle, upper right abdomen, and some pain in her shoulder/back. She also had random fits of severe nausea and vomiting. The following week on Tuesday they finally called her and made an appointment for Friday afternoon. In the mean time they had her get some blood tests. One was a CA 19-9 tumor marker test. Another was a more specific liver enzyme test (AST/ALT). Her results came back within the next 2 days. Her liver enzymes were in the 700’s. The CA 19-9 results showed elevation, but the gastro said they weren’t significantly high (hopefully I have remembered these numbers correctly) Her appointment was schedule 12 days post her initial visit to the ER with CT scan.

    At the Friday afternoon appointment with the gastro, she was told that there was a single tumor on the left lobe of her liver and it was 5 mm. He told her that her bile duct was also inflamed. He said at worse her left lobe would need to be resected. Which might require chemo beforehand to shrink the tumor. A biopsy was scheduled for the following Tuesday. She had the same symptoms, but started to become very itchy all over her body. The gastro told her this was because her bilirubin was starting to elevate above 3 or 3.5.

    The biopsy was completed 16 days post her initial ER visit. They told her it would take 10 to 15 days to receive the biopsy report. At this time she still had the same symptoms except started to itch all over her body. We were all rather confused about the 10 to 15 day timeframe to receive the report as shouldn’t a tumor on the liver be an indication that the biopsy should be rushed? My aunt, a nurse for over 30 years who had worked oncology for a lot of those years said that when needed, a biopsy report could be done in as little as a couple of hours. If it was truly rushed. Why was this not done?

    Shortly after the biopsy her bilirubin level increased and she became jaundiced. Both her skin as well as the whites of her eyes turned yellow. She called the gastro several times but was told that we just need to wait on the biopsy report to see what the treatment plan will be.

    Two weeks after the biopsy and 28 days after the initial ER visit and symptoms, she pleaded with the gastro to get the biopsy report. They told her they will call to find out what the hold up was. The next day, 29 days after initial they called her and told her that the tumor was cancer. They did not specify what, but said an appointment with an oncologist would be scheduled for 2 days later. This was now 30 days after the initial ER visit and symptoms.

    My mother got the call that it was cancer this past Tuesday, her oncologist appointment was this past Thursday. Within the past couple of days my mother has started to experience extreme fatigue. She said it takes all of her power to just go from the bed to the couch. But she said some days are much better than others. The appointment did not go well. The oncologist said that the tumor was Cholangiocarcinoma, attributed to adeno cells that are in the mucus lining of the bile duct. All of the bile duct tree was inflamed. He said a stent was not possible to relieve the jaundice/nausea!

    He said surgery was not an option, nor was radiation. He said this diagnosis was very rare, and at best he might see one of these per year. He was referring her to a specialist for this coming Monday, June 8, 2015. (She has since decided she will not go as this specialist told her that there was nothing that could be done)

    He then proceeded to tell her that she has 3 – 6 months to live. If chemo can be an option (it will be discussed this upcoming Monday), that might add another 3 – 6 months. While there he actually called the specialist on the phone with my mom in the room. The specialist flat out said there was nothing that could be done. If this is the case, why was an appointment scheduled with her for next Monday? During this whole time the oncologist kept on repeating over and over “you should have been in here a month ago”. Really!? We all knew that, so why did everyone drag their feet? Again, a biopsy of this type takes 2 weeks to get the results?

    If you are still reading THANK YOU. :)

    This is where we are today, Monday June 8, 2015 (36 days after initial ER visit/symptoms):

    Diagnosis of Cholangiocarcinoma
    no surgery and no radiation
    Not slow growing tumor but not the fastest either – grows in the middle of the pack but said would double in size in a month
    Maybe Chemo
    Bile Duct Inflamed
    Told Stent can not be put in

    *** My mother has had ulcerative colitis for pretty much all of her life. She has a j pouch that has replaced her colon. She also does not have a gall bladder. The oncologist was not sure if the tumor could have come over from the pancreas or vice versa ***

    Currently experiencing:

    Severe Jaundice – yellow to almost greenish?
    Extreme fatigue that comes and goes
    Loss of appetite but is only eating fruits and vegetables when she can
    Only eats when nausea and vomiting are not as bad
    She knows she needs to eat to try to get energy
    Has not had a fever for a while


    Should I go ahead and contact MD Anderson and/or Mayo Clinic? Are these the two best options?

    She is retired military so has Tricare. Is this something that either take, or will we need to pay out of pocket? If so, what are the costs for a 2nd/3rd opinion at these institutions?

    Why can’t a stent be done? Is it possible to receive a biliary tube or drain to relieve the bile so infection/sepsis does not set in if a stent can’t be done?

    Is it simply palliative care from this point on, or is it possible that some type of curative treatment plan might occur if chemo works?

    If nothing can be done, will something at least be done to help her extreme fatigue, pain, and to help relieve the bile from backing up due to her entire bile duct tree being inflamed?

    Should she also see a naturopath? I’ve read that some have had great luck with an IV infusion of vitamins to include Glutathione. Anyone know about this?

    What are the power fruits/vegetables that she should eat for CC?

    Thank you all again for taking the time to read all of this, as well as provide much needed suggestions, guidance and direction. Like both you who have CC, as well as the many of you like me who are caregivers, we all simply want the best for our loved ones. At worst we want to ensure she is pain free, not scared, not sad, and is able to enjoy the time she has left with dignity and a whole lot of quality.

    Hopefully MD Anderson and/or Mayo Clinic has something in their tool bag that neither the oncologist (who might see one of these cases a year) or the specialist that she see’s Monday (who might see 5 of these cases a year) have.

    With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,


Viewing 8 posts - 46 through 53 (of 53 total)
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