newly diagnosed with cc

Discussion Board Forums Introductions! newly diagnosed with cc

Viewing 14 posts - 151 through 164 (of 164 total)
  • Author
    Posts
  • #24509
    luluu
    Member

    Vincent, So sorry about your Mom’s diagnosis. We wasted a lot of time with an Oncologist that obviously didn’t have any experience with CC. You are headed in the right direction……run away from that doctor and hospital and only see a doctor who specializes in this type of cancer.

    As far as alternative stuff…I will tell you what I do for my husband.
    Mornings and before bed he gets a smoothie with yogurt, flax seed oil, whey protein powder and fresh, except now because of the change of season, frozen fruits such as black raspberries, Acai berry, blueberry, etc…Recently, instead of yogurt I’ve also been using soy milk. During the day he will get about 3 fresh, home made juices…things like beets, kale, spinach, apples, carrots, cauliflower, broccoli, in total he gets about 48 oz. of juice, not including the smoothies per day. Also, I just recently purchased Freeze dried Black Raspberry, see link, I add that to his drinks as well.

    http://www.sciencedaily.com/releases/2008/08/080827163933.htm

    He gets 8 teaspoons of Essiac Tea daily, I also give him major
    supplements….he takes Green & Whte Tea supplement New Chapter brand, vitamin D3, “BroccoliLive” i think also New Chapter brand…garlic supplement, TurmericForce, also New Chapter….Google ” Turmeric and Cancer” and you’ll see some interesting information. Shark Cartilage, Cat’s Claw, Vitamin C, calcium, magnesium. I think that’s it. Of course, I try to get this into his diet , but when you’re that sick, you can’t get it all from food.
    Read this link…..
    http://www4.dr-rath-foundation.org/NHC/cancer/cellular_solutions.htm

    Another thing I do is he only drink Ionized water. It may or may not help, but I’ve heard some convincing information.

    Anyway, I do anything I can find…my husband is young like many with CC.

    Good Luck and the best to you and your family.

    Lulu

    #24508
    marions
    Moderator

    Vincent…..Simon K. Lo, MD is Director of the Pancreatic and Biliary Diseases Program at Cedars-Sinai Medical Center. Dr. Lo is also an Associate Clinical Professor of Medicine at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA). You might want to contact him, also.
    Good luck and please, stay in touch

    #24507
    lainy
    Member

    Nice going, Vincent!!!! You just keep asking questions until you are totally satisfied! You have the right attitude. There is always hope.

    #24506
    vincently22
    Member

    Thanks everyone for the information. Mom would prolly try chemo if being offered. I just called the USC for Dr. Lenz but he wont be in the office until tomorrow so I’ll try to call them back again. I just found out that the length of the cancer was about 5 cm about 2 weeks ago. I dont know how long it is now until we get an updated report of the 2nd ERCP. Lainy gave me some information about Cyberknife. Hopefully I’ll get a chance to speak directly to Dr. Lenz 2morrow so maybe we can take mom to USC as soon as possible. Marions, do you know if there is a direct phone # that I can get a hold of Dr. Lenz? I tried calling this # earlier (323) 865 3000. Does anybody know any other oncologists (around LA area) that specialize in this kind of cancer so I can contact them as soon as possible so mom’s cancer could be treated aggressively? Mom’s condition seem to be stable now so we don’t really want the doctors to just “wait & observe” any more. Now I’m very frustrated that mom’s cancer was about 5 cm last time, I wonder if they even know/heard about Cyberknife instead of “inoperable.”
    In term of insurance, mom has medicare and medicaid so it shouldn’t be a problem.

    #24505
    marions
    Moderator

    Hello Vincente….You might also want to contact Dr. Lenz USC/Norris Cancer Center. Dr. Lenz is familiar with this cancer. Good luck and hugs to you and your Mom.

    #24504
    carol58
    Member

    Hi Vincent, I think telling a cc patient 6 months to live is what most of the doctors say. Don’t listen to them. Charlie was told 3 to 6 months in May 2007 and he’s alive and kicking now and looking forward to 2009! Did you say your Mom would try chemo if offered? Just throwing things out there to think about. I know some of the most used chemo drugs are Gemzar, Xeloda, oxaliplatin and I’m sure there are others. We’re very interested in Theraspheres also, but our BC insurance is denying it. We’re in our last attempt to get it approved. I hope that your mother’s insurance will approve it if she’s eligible for it. Some insurance companies do. It sounds really promising to at least give us a little more time. I think there are too many variables to figure out the shortest time and longest time to live with cc – so many factors involved in each individual case. I wish you all the best. Please keep us posted.

    Carol

    #24503
    lainy
    Member

    Hello Vincent and welcome to the best little club in the world that no one wishes to join! I got your e mail and would like to talk to you if you can call me today.
    I do have some suggestions and it sounds like your mother is about where Teddy was 3 years ago. Yes, 3 years. Let me know if you cannot call and then I will answer your e mail. I have so much to tell you I felt it would be better to talk.

    #24502
    bill
    Member

    My wife had success with two Therasphere treatments at Mayo Clinic. It extended her life a year with little apparent side effects. Good luck.

    #24501
    roma35
    Member

    Vincent,
    You should also search the internet, there are tons of books on herbal treatments, and nutritional supplements. My dad was/is open to many that I have researched and given him. I am not really in a position to tell you what you should give to your mom, but when my dad was first diagnosed I did tons and tons of research on nutrition, and so I can tell you what i do for my dad. I went out and bought a really good juicer immediately when he was diagnosed. I will give him atleast one(sometimes 2) vegetable juices a day. Many different combos- carrot, beets, broccoli, tiny bit of garlic. This summer, I used most vegetables from the garden. I give him a cup of Essiac tea everyday. (you can look that up on internet), he tollerates that with honey. He doesn’t like to take too many pills, and says they bother his stomach, but I do give him 1 melotonin a day. Also, there has been a lot of studies on a good Attitude(which Lainy and Teddy, who are members of this site, can attest to) We try to keep my dad positive and laughing. He recently told me he loved the show The Odd Couple, so my brother found a whole DVD set of the series, and everyday we pop those in DVD for him. I love to hear him laugh. The good and bad aspect of this cancer is every persons situtation is different, and what has given me hope, is many people have out lived the doctors expections by years.
    Thoughts with you
    Barbara

    #24500
    vincently22
    Member

    I live in Los Angeles, California. The hospital that my mom stays at is Garfield hospital. I haven’t been to another hospital/dont know how it is like, but I kinda disatisfied with this one. I mean the other day when she had her seizure, she was in the ICU. I think it’s ridiculous for them to not have at least one back up doctor there (instead of being oncall). But like i said, i dont know how other hospitals are like. But pts are in intensive care b/c their condition is dangerous/not stabled at all. They dont seem to be very helpful but too bad they have all my mom’s record. But then I’m happy that mom could be released from hospital soon. At this point the oncologist told me that the thing we could/should do right now is to pay close attention to mom and hopefully she’ll be healthy enough. He said that about a week later, he’ll have the case manager to follow up and call the oncology institution (City of Hope) and have them review mom’s file to see if she can be a candicate. I’m praying that everything will be fine and that mom will qualify for Therasphere/whatever out there that can prolong her life.

    #24499
    darla
    Participant

    Vincent,

    I am so sorry that you & your family are going through this. However, you have come to the right place for help & support. As for alternative medicines or Therasphere, I can not say, as my husband did not have the time to try either. As for your question of time, unfortunately there is no really good answer. This disease affects everyone differently and depends on so many things. There are many here that have been dealing with it for years and for some the time was as short as 3 weeks. I don’t want to scare you or up set you, but I feel you need to know all of the possiblities. In my husbands case, he passed away less than two months after he began to feel ill. They did all the tests & could not find out what was going on. He was finally diagnosised 1 week before he passed away. At that time we were told he would have up to 6 months without any type of treatment. That week he just keep getting worse & after 6 days we were told he had possibly up to a month and was too weak to even try any type of treatment. Our intention at that point was to get him home with the help of hospice care. Unfortunately that never happened as he passed away the following morning.

    Please keep in mind that everyones situation is different. Try to stay as positive as you can & take things one day at a time. I know that is hard to do, as I was where you are now just a few short months ago. It has been almost 3 months and I can still remember every detail of what we went through. Try to stay strong. Take care. My thoughts & prayers are with you & your family.

    Darla

    #24498
    kristin
    Member

    Hello Vincent,

    We are so glad you found us! The members of this board will do everything they can to help and support you– they have been SO wonderful to me!

    The best thing to do is just to read through the diffferent sections, especially about experiences and different treatments. You’ll find that though doctors’ predictions are accurate in some cases, many times people live much longer than was predicted. Doctors know a lot of things, but they are not God! They can tell you what USUALLY happens to patients, but they can’t tell you for certain what WILL happen to your mom. I have been living with this cancer for five years now, and I can say that my doctors have been wrong in many things.

    The key is to find a doctor with some experience, and one who has a general outlook that is right for you and your mom. I completely agree that you should try to get a second opinion.

    The best of luck to you and your family!

    Kristin

    #24497
    roma35
    Member

    Hi Vincent,
    So sorry about your mom, we all on this site know what you are going through. I have few questions: where do you live? what hospital are you being treated at? have you gotten a second opinion? This cancer is so rare, that many hospitals and ONC’s just dont see enough cases, and simply dont now about all the different treatment options. I will add your mother to my prayer list.
    Barbara

    #1761
    vincently22
    Member

    Hello everyone,
    My name is Vincent. My mother is 69 yo (hypertensive & diabetic) who was diagnosed with cholangiocarcinoma about a week ago. About 3 weeks ago, she was admitted to the ER due to her yellow skin and very itchy without abdominal pain nor fever (which doctors said is more dangerous than the ones that feel pain/fever). At that time, they did all kind of tests (CT, blood tests, etc.) and took about 5 vials of blood from her everyday for about 3-4 days (which caused her to be really anemic I think) but couldn’t confirm if it was really cancer although they highly suspected it. So they decided to do an ERCP and put a stent inside her bile duct so it could help to drain out her bilirubin. During the process of doing the ERCP, they found out other organs around the bile duct looked normal (hasn’t spreaded to other organs yet). After the ERCP, her bilirubin level dropped from 12 to 7 and they decided to let her go home. During the procedure, they doctor did get very lil cell from her bile duct but then it wasn’t enough that they couldn’t really confirm if it was really cancer or not. When she got home she wasn’t as healthy as we would have wished but we thought that it might take several days. ON the 3rd day, she got tired really fast after walking to a point that she almost passed out so we called the ambulance and they took her to the ER. At that time, her potassium was 6.1, blood sugar was 450 and had metabolic acidosis. They gave her kayexelate which made her poop alot so she could excrete out the potassium. However, she had bloody stool and we were so scared. Then they gave her 4 packs of red packed blood cell. After several days, her labs were within normal range. They thought that she was stable enough so they decided to do a 2nd ERCP for her again except this time will cut enough bile duct cells so they could do a biopsy. They also removed the old stent and put in 2 new stents (as a Y letter) This time the xray showed that her cancer (which later confirmed) had been spread (going upward). Unfortunately, this time around my mom had complication and she passed out right after the procedure. They transferred her to the ER and then ICU. It was horrible and painful for us to watch her going through that. She was unconscious and couldn’t breathe on her own. They had to use a machine to breathe for her. AFter 6 hrs, she wasn’t able to breathe on her own either. AT that point, we were really scared that she wouldnt make it :( About 10 hrs later, she was able to breathe a bit (although unconscious) and slowly she recovered. They did a CAT scan and it came out negative. However, the 2nd nite around 10:30 pm she started to had her first episode of seizure. WE were so frustrated that there was no doctor there at that time and nurses didn’t know what to do. They called the neurologist to come (which took him about 15 mins). Her seizure lasted about 10-15 seconds (each episode). By the time the neurologist came, she was on her 3rd episode and he waited until her seizure stopped and gave her some Ativan. To make the long story short, my mom is still in hospital now and is improving. They just transferred her from ICU to a regular room yesterday and she was fine. They’re planning to release her this coming Monday (12/1/08) if she’s doing good for the next day or 2.
    The oncologist told us that her cancer is inoperable and she has about 6 months to live. I did ask him about the Therasphere and he said that it’s still in trial and hopefully my mom can be a candicate once she gets better. He said that there aren’t really anything working available. he said that Therasphere could prolly help to prolong 6 months (if it works) and not that long and chemotherapy doesn’t really work. Here are my questions/concerns.
    1)did anybody try any alternative medicine (herbal etc.) and are there any out there? I read up “shampoo ginger” but that might work for liver cancer but I dont know about bile duct cancer.
    2)I am really curious about the time once patient is diagnosed with CC and how long they can live for? I know it’s varied from one person to another but I would like to know the shortest/longest time someone can live.
    3)did anybody try Therasphere? i would like to know the result of it.
    Thank you very much for reading my post and please give me as much information as you could/know!

Viewing 14 posts - 151 through 164 (of 164 total)
  • You must be logged in to reply to this topic.
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation