Discussion Board Forums Introductions! Hello from Houston, first post, sister with Cholangio

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  • #95240
    marions
    Moderator

    Jjigunni…..a tidal wave of good wishes is heading your way. Perhaps sometime in the future you may want to obtain additional professional opinions, but at this time your sister in in excellent care. It’s best to take it one step at a time and that is what you are doing.

    Hugs and love,
    Marion

    #95239
    positivity
    Participant

    Hello Jonas,
    Thank you for joining the forum.
    Everyone can relate to your story. Shock, dissatisfaction, despair, sadness, and eventually having to stand up and face a multiple of medical professionals is just the nature of this condition.
    This was all new to me about 8 months ago when my mom got diagnosed and I was confronted with so much negativity from doctors that I had to withstand it in order to help her the best I can. As you will find on this site most individuals have unique situations in addition to the CC. My mom could not get any treatment due to a concurrent illness of chronic/severe anemia. I saw 4 oncologists, and though it to be unbelievable that the ones who wanted to offer the standard chemotherapy as shameful. I would not accept it, and eventual doctors who supported it as more harm to the patient than beneficial. Again, this is due to severe anemia a side effect of chemo without chemo.
    We have dealt with everything: severe weight loss, constant fatigue, low appetite and imagine having no options and the difficulty of acceptance and taking it day by day which is rough.

    The suggestions I can offer which are similar to above:

    1. Molecular Testing (try Foundation One)
    2. Have you tried Cannabis oil for pain? I heard a few patients say it’s successful
    3. Give those plant based drinks a try, better than Ensure which has high fructose syrup
    4 Get several opinions (I look back and if I took the advice of the first oncologist in my highly emotional state of sadness, my mom would be worse)
    5. Spend quality time together and hopefully she can enjoy some things

    I know firsthand how tough the journey can be and keep going.

    #95238
    karend
    Participant

    Jjgunny,

    I am very sorry that Myrna has been readmitted, but do so hope that she is resting comfortably.

    Everyone on this discussion board truly understands the fear, sadness, and shock which comes from the rapidity of this cancer, and how your family (and you) must be struggling to make sense of it all.
    I personally am so glad that you are here though, and are sharing Myrna’s story with us.

    Cisplatin can be so harsh, Myrna may just need a bit more time to recover along with inpatient support. It will be a useful time as well to discuss the current plan, and be together as a family with her. My sincere hope is that she will rebound with fluids so that she can be discharged.

    Thinking of you all and keeping my fingers crossed,
    Karen

    #95237
    jjgunny
    Member

    (sigh) My sister, Myrna, has been readmitted to the hospital, she was much more weak and less responsive than usual yesterday, couldn’t even stand up without falling, luckily I was there to catch her. BP was tanking, was 70/40 for a while. She is in the ICU now and doing a little bit better, but seems like she is getting worse quickly. They are treating her for possible infection Her bili is back up to 11.3 and now has kidney insufficiency, which I’m hoping is temporary from cisplatin and severe dehydration. My whole family is a wreck and very scared that she may only have a short time left with us , frankly none of us can bear the thought of losing her. Her oncologist is suppposed to come by today and look over everything, but I can’t imagine he is going to have anything good to say. I was going to start looking into getting a second and/or third opinion, but I’m not sure what more could be offered at this point outside of MD Anderson. Keeping my fingers crossed.

    #95234
    marions
    Moderator

    JJGunni….granted, Immunotherapy is still under investigation but the thousands of postings on this site contain absolutely no hint of contraindication. MD Anderson is treating your sister agressively (bili 7 rather than the required 2) but as suggested – molecular testing can be performed via a liquid biopsy. (Blood test). This type of testing is most accurate for stage III and IV, as at this point a higher volume of tumor circulating cells can be detected.

    You are mentioning the worsening of dysphagia and I am wondering whether it’s related to weekness and/or lack of fluid. Perhaps you could investigate hydration therapy through an IV line, the patient receives the necessary fluids faster than by drinking them.

    Additionally, oral hygene is of most importance. Biotene has great products https://www.biotene.com/dry-mouth-products/gentle-oral-rinse/

    Wishing for the absolute best

    Hugs
    Marion

    #95233
    jjgunny
    Member

    Thanks everyone for your input, definitely going to read up on everything. Billy, she is currently taking 12 mg extended release hydromorphone once daily and regular 2 mg hydromorphone every 3 hours as needed. I may ask her supportive medicine team if she can try to cut back to 8 mg a day to try to help with her sleepiness. Pain fortunately has not been too bad for her recently so think she may be able to dose reduce…

    #95232
    gavin
    Moderator

    Hi Jonas,

    Welcome to the site. Sorry that you had to find us all here and I am sorry to hear of your sister and what she is going through with this as well. But I am glad that you have joined in with us here and yes, it is a family and we will help if we can.

    As to Immunotherapy and info on that, please have a look at Melinda’s postings as she has gone through this. Her posts can be found here –

    http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=5631

    This thread especially – http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11199

    Hope that these links work and that they are of use to you as well.

    The videos that Billy mentions are here –

    http://cholangiocarcinoma.org/misc/2017-cholangiocarcinoma-foundation-annual-conference/conference-in-review/

    From what you have said, it sounds to me like that you are doing everything that you can to help keep your sister as comfortable as possible right now and I know how much that will mean to her. I was my dads carer when he had cc back in 08-09 and was with him right throughout it all.

    I do hope that your sisters treatment works and that other options for treatment will be an option as well. Please do not give up hope and remember always that we are all here for you.

    My best to you and your sister,

    Gavin

    #95231
    vtkb
    Participant

    Hi JJgunny,

    I’m sorry to hear about your sister. Molecular testing would be great if they can get another biopsy, it may open up more treatment options. They can also test her blood for any genetic mutations in her body which may show a sensitivity to a certain type of chemo. With your sisters PSC she may not fit criteria for clinical trials, but may be able to get the same treatments if her oncologist is willing to order it for her under compassion care. I know with my girlfriend (Kathy), she has UC and was discovered to have PSC once they resected her intrahepatic tumors, so she’s in the same boat. Shes actually on 6mp which her onc thinks may help , although being an immunosuppressant it may also hurt, but since its kept the uc in remission shes staying on it.

    Secondly, as a fellow non-oncologist physician, I can tell you the toughest part for me so far has been learning how to step back and be the caregiver first and a doctor second. Your sister will need you as a brother for support, and as tough as it is you may have to turn off the doctor part of you while youre around her. I’d also advise looking through the videos of the annual conferences on this website for more information.

    Also do they have her on long acting pain meds or just prn?

    -billy

    #95230
    beatriz
    Participant

    Today I received the USC Norris Cancer Center Report (this is where my dad was treated) and the whole issue was devoted to the liver.

    There is an article of a man who was diagnosed with CCA Stage IV when he was 40 years (just like your sister had other digestive system for the past 10 years!!!!) and he sought 2nd, 3rd, and 4th opinion and landed at USC with Dr. Lenz. Like most CCA patients he started on chemo FOLFOX but when it failed (it is crazy patients first have to fail chemo) he was admitted to a clinical trial meant for breast cancer patients because of his HER2 overexpression on his molecular testing results. Fast Forward 3 years and the tumors dissolved and he is now cancer free.

    To me the recurring theme is:

    #1. Seek 2nd 3rd and 4th opinions

    #2. Molecular testing is key

    #3. Working with an oncologist at a major cancer center that are knowledgeable with CCA (you have MD Anderson which is the best)

    #4. Targeted Therapies work much better than chemo in some cases and when the patient’s body hasn’t deteriorated much after the failed chemo.

    I will try to attach photos of the article…

    I am holding space for your sister (who happens to be my same age) and you and your family during this time….prayers and blessings your way.

    IMG_20170704_071620.jpg

    IMG_20170704_071627.jpg

    #95229
    beatriz
    Participant

    Greetings!

    As far as nutrition please google LIQUID HOPE it is a whole based plant food used in hospitals (per family request of course) that can be used for both tube feeding or oral….I bought it for my dad who was suffering from this monster too and it really helped him.

    The left overs I am either consuming them as soups and my mom uses them too. The best part is that the cost can be covered by insurance and medicare if it is medically necessary (paperwork from doctor is required). I am not a doctor but I believe it is all about absorption and utilization that is why the patients loose so much weight and that is why juicing (enzymes) and whole food nutrition like LIQUID HOPE can help the body.

    As far as molecular testing…you don’t necessarily need tissue especially when it is this advanced the tumor tends to shed lots of protein into the blood stream thus now we have blood profiling. The most widely used test which tests more genes is GUARDANT HEALTH (owned by google) but Personal Genome Diagnostic came out with the first blood biopsy that tests MSI (which test instability point needed for immunotherapies) the test is called PLASMA SELECT 64 + MSI….I know our oncologist wanted to do foundation one blood biopsy because this is their default go to source but he was impressed that I even found the PLASMA SELECT 64 +MSI and ordered the kit (the good thing about this company they are willing to work with people from economically disadvantaged backgrounds in case their insurance wont cover the entire cost).

    #95228
    jjgunny
    Member

    Hello,
    Unfortunately there was not enough tissue in her biopsy to do a tumor profile. She has an appointment with her onc in two days and I’m definitely going to discuss immunotherapy with him, but it may come down to having another biopsy done, which would be tough for her. He did also mention that she may not be a candidate for any immunotherapy because she has pre-existing autoimmune disease? I’ve been trying to do some reading on that but haven’t really come across anything about that being an absolute contraindication. Has anyone had any experience with that situation? Also her dysphagia seems to be getting worse and it’s getting very difficult for her to swallow. Wondering if this is common and just part of the disease or chemo side effect that could maybe get better?

    #95227
    debnorcal
    Moderator

    Dear Jonas,

    Welcome to our group. I am so sorry that your sister is so ill and that your family is going through this awful nightmare that many of us on this board have experienced.

    You didn’t mention molecular profiling in your message. Was this done and if not, can you have it done? Some of the newer treatments have been proving to be effective against specific profiles. Also, some of the clinical trials are targeting patients with particular profiles. You may have already explored this option, but I wanted to raise it nevertheless.

    Debbie

    #95226
    mlidoudou
    Participant

    Hi Jonas:

    I am really sorry to hear about your sister. You may have heard about the wonderful stories of some patients in this forum about the drug Keytruda. It was also recently announced that it has close to 40% response rate in cholangiocarcinoma patients based on the most recent clinical trial data. I am not sure if your sister can get into a clinical trial with Keytruda right now but I also read an article about Brown Cancer Center can treat with Keytruda for free. You may want to look into this.

    Best wishes to you all,
    Maggie

    #95225
    darla
    Participant

    Hi Jonas,

    Welcome to this awesome group that no one wants to join but are so very glad the can. I’m sorry you needed to find us, but you will be glad you did as the support and information you will get is amazing. Unless you have been confronted with this awful disease, others just can not truly relate or understand. I am so sorry your sister has been cursed with this disease and that you and the rest of the family also have to deal with the reality of it all.

    My husband died almost 9 years ago after only 2 months of illness and only 10 days after being definitively diagnosed, so I really can’t be of much help as far as suggestions or treatments as we didn’t really have enough time to even deal with any of that. I do know that things have changed a lot since then and there is much more knowledge and more options then there were back then.

    It sounds like you have already gotten more than one opinion, but if not, 2nd or 3rd opinions can be helpful. Try to be cautiously optimistic as one never knows how things will go. No matter what direction her treatment goes in, the most important thing to me has always been that the patient be kept as comfortable and pain free as possible.

    I’m hoping others will chime in soon with some suggestions and advice as to treatments etc.

    Try to take some time out for yourself and your family when you can. My thoughts are with you all. Know that you have a lot of people here willing to help and support you in any way that we can.

    Hugs,
    Darla

    #13499
    jjgunny
    Member

    Hello to everyone, I wanted to introduce myself and put up my first post. My 39 yo sister has been diagnosed with stage IV cholangiocarcinoma. It has been a nightmare for me and my family, everyday we are all walking around with heavy hearts and lumps in our throats. I should mention that I’m a physician, an internist, so I have first hand knowledge about how unfair and horrible this disease can be. My sister was doing great up until a few months ago in March when she started having mild abdominal pain. She has had Crohn’s and PSC for years, had been stable on meds for a long time. She lives in New York and went to NYU med for MRI in early April, which was read as “worsening PSC” but no discrete mass or dominant stricture, went for ERCP and had a stent placed. Pain and jaundice got a lot worse after that, she had another MRI done (3 weeks after the original) which showed 12 cm mass in the left liver with multiple lymph node and lung mets. She urgently underwent EUS with biopsy which confirmed the diagnosis of cholangiocarcinoma. She came back to Houston with me a few days later and I got her into MD Anderson a week later. She wasn’t able to start chemo right away unfortunately because her bilirubin was too high at ~18, so she was admitted to the hospital and had a biliary drain placed as well as a catheter to drain her ascites everyday. Bili was coming down and she went home, but I had to bring her back few days later due to an infection. Infection was treated and we got the bili down to ~7, her oncologist thought that was the best we were going to do and decided to finally start chemotherapy last week. She had her first round of gemcitabine/cisplatin on 6/27, she is scheduled for chemo every two weeks. Her oncologist is great, but I can certainly tell that he is not at all optimistic and has told me multiple times to not keep our hopes too high. She is recovering now, but unfortunately she is not doing well. Nutrition has been very difficult due to lack of appetite and discomfort, and even swallowing water is an difficult task. She has lost nearly all of her fat and muscle. She is so very weak and tired all day between the cancer, chemo, and multiple pain meds she requires. It is hard for her to keep her eyes open for more than a few minutes at a time. She is still staying strong and positive though, I’m so proud of her for doing her best to keep up with the things I make her do, like short walks and snacks every 1-2 hours. My wife and family are all wonderful, she is basically never alone and we are doing everything we can think of to fight this horrible monster. But I would be lying to say that my heart doesn’t ache everyday as I watch my wonderful, beautiful sister waste away. As a loving brother my attitude will always be stay strong and keep positive, but as a doctor I know that she is dying. I have seen so many great posts on this forum about everything and anything cholangiocarcinoma and it has been an invaluable resource. I appreciate any tips, treatment suggestions or any other forms of support that anyone has to give. Thank you for listening and I look forward to being a part of this family.

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