newly diagnosed with cc

Discussion Board Forums Introductions! newly diagnosed with cc

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  • #24524
    vincently22
    Member

    Hello,
    I was at the hospital most of the day today so didnt get a chance to check this. Today she is doing good. The oncologist came by and saw her did her physical test with the physical therapist and he said she was doing very well. Anyway, they did an MRI of her abdomen (so they could send to City of Hope) and tested her blood to see how much oxygen she has. She was supposed to be discharged today but when the family doctor came, they hadn’t done the test yet and I dont think he would be coming again tonight and therefore she would be discharge 2morrow instead.
    The oncologist told me to not worry ‘cuz he already had a plan and will have the case manager to contact City of Hope as soon as possible. So I am somewhat relieved a little bit. So at this point I’ll leave everything in their hands then.
    So Dr. Huan Giap (San Diego) told me that he doesn’t charge to review medical record. I am thinking that I should just fax him the record anyway to see if his opinion will be the same as the specialists at City of Hope.

    #24523
    gavin
    Moderator

    Hi Vincent,

    Good to hear from you. Sounds to me as if you are being very pro active in trying to get your mum some good treatment. It’s good to see that you have a positive action plan and are trying to get specialists to see your mum. Keep it up!

    Yep chemo was an option for my dad, and still is. He gets a CT scan on the 23rd to see how things are. We were told that chemo would be an option at any time as treatment, but if he had the chemo first, then he could not have the PDT treatment. The specialist recommended the PDT and the stent first, then if neccesary chemo. Dad agreed with this as he wanted to try all possible treatments so jumping straight into chemo would have ruled out PDT. I will keep you up to date on how the treatment is going and hope you will keep us up to date with what is happening to your mum.

    The best to you and your mum.

    Gavin

    #24522
    lainy
    Member

    Sounds like a plan. Perhaps you can all use the intermission! Keep us posted.

    #24521
    vincently22
    Member

    Hello Lainy,
    I just spoke to mom’s 2nd opinion GI doctor and he told me the reason why they want to wait for a week is because mom has other complications (hypertension, diabete and bad kidney) which will take mom about a week to fully recover (from incidences that just happened to mom recently). But while mom is being discharged, they’ll contact City of Hope to schedule an appointment for mom so the specialists there can evaluate what are the best options for mom. With that being said, I think he’s on top of his things so we’ll just have to wait.

    #24520
    lainy
    Member

    Vincent, if you look up Cyber Knife Los Angeles on the web it should tell you who offers it. The one thing we have all learned is that this disease is not uniform. Everyone reacts differently to each treatment. That is one of the biggest problems. I have had 5 top Oncologists tell Teddy that chemo will not work but radiation/cyberknife gives a better chance. Chemo seems to work better when it has met to the liver. You mom and Teddy’s is different. It is in the lower part of the bile ducts. I don’t believe they charge to look at a medical records but you should ask. I think traveling 2 hours would add more stress to the situation and there has to be someone qualified in LAX who can see your mother. When you call these doctors you need to ask how much experience they have had with bile duct cancer. As I told you Teddy had a Whipple and one of the doctors we saw here does a large amount of Whipple surgeries as well as liver transplants. You need someone experienced with this cancer. I wonder if you called the local Cancer Society if they could help you find a doctor? Just thinking out loud.

    #24519
    vincently22
    Member

    Hello Gavin,
    Sorry to hear that your dad experienced the same thing. Please keep me updated with his status/results ok? Besides the stent, did they offer him chemo therapy or radiation?
    So I was able to talk to the assistant/secretary of Dr. Simon Lo (GI specialist) and I found out that he just does is ERCP but not chemotherapy or radiation. So I guess that doesn’t really help much.
    Dr. Huan Giap (San Diego) replied to my message and he told me to send him the medical reports and he’ll take a look at them. He does Therasphere, Cyberknife and brachytherapy. The only problem is that his office is in San Diego (2 hrs from where we live). Does anybody know if they would charge the fee for looking the medical record? Should I just stick with City of Hope right now? I wonder if they do offer Cyberknife also. I guess I’ll search for that info sometimes later today.
    I requested information from UCI Medical Center regarding the Therasphere, but this is the msg I got :( “Unfortunately, we are only allowed by the FDA to use TheraSphere for the treatment of hepatocellular carcinoma (primary liver cancer). In our experience, untreated unresectable cholangiocarcinoma has a poor prognosis with an approximate survival period of 3-6 months.” So there is no hope with UCI.
    After this experience, I realize that they all say different stuff and seems like the ones who dont know much about this type of cancer (never dealed with a patient with this type) seemed to give same answers “live 3-5 months, poor prognosis, chemo doesnt work but also decrease quality of life and radiation doesnt work either :( Anyway, so I learned to become stubborn and not believing in what they say. There are people in this forum who did chemotherapy and they said the side effects aren’t that bad. Well, if side effects aren’t that bad, then I dont see how that decrease their quality of life, and I would definitely trust the people to have had chemotherapy more than the doctors (who usually only go by textbooks).

    #24518
    gavin
    Moderator

    Hi Vincent,

    Sorry to hear about your mum. Just wanted to welcome you to the site and to let you know that you are not alone in this situation. My dad suffered the same symptoms as your mum this summer, yellowing skin and eyes, severe itching, no abdominal pain or fever, weakness and tiredness then admitted to hospital. All the same tests done on my dad as they did on your mum, then my dad eventually diagnosed with inoperable CC. I know what I felt like when I heard the word inoperable, so I can relate to how you feel.

    Straight away, dad had a stent inserted and a “bile bag” fitted! That sure did annoy my dad having to carry that thing around with him for quite a while! Then a few weeks later he was underwent Photo Dymnamic Therapy to try and slow down the progression of the cancer. He is due for a CT scan on the 23rd of this month to see how it went, but. It wont cure him, but hopefully it will slow it down.

    Some great advice and support here for you on this site. Stay positive and don’t give up hope.

    All the best.

    Gavin

    #24517
    lainy
    Member

    Always keep her in a good place that you trust. City of Hope is one of the best.
    It certainly cannot hurt for her to go in early. I still say good work! You are doing fine.

    #24516
    vincently22
    Member

    I just called City of Hope and they said that once mom is discharged from hospital, i can go ahead and refer her myself instead of waiting for the doctor. They said either way is fine. But I’ll try to refer by myself first b/c doctor wants to wait for a week to see if she’s healthy enough. I mean Im very frustrated. To me, whether she’s gonna be healthy enough, it’s just better for her to stay at city of hope and let the specialists make the decision of what to do with her. What if they think she’s healthy enough on day 3,4 or even 5. That is still 2 days earlier and chances are better. Maybe I dont know what the doctor (at the current hospital) and therefore he just decided to do wait, but I just think the sooner the better for mom. I’ll keep everyone updated.

    #24515
    lainy
    Member

    Good to hear it Vincent, and it was so good talking to you. You have a good and hopeful attitude. I hope mom is adjusted to her “bile” bag, or as I used to call it Teddy’s shadow! Please keep us informed as we all care.

    #24514
    vincently22
    Member

    Hello again,
    Thanks for the info. I definitely will give mom the alternative treatment. Lulu, you’re right about telling them alternatives and they dont believe in it. Being doctors, they only try stuff that have been in studies. But at the same time, instead of going with “can’t treat it” I dont think it hurts to try other things (as long as they’re not poisonous) rather than doing nothing. I tried calling USC and the nurse will call me back and hopefully we can make an appointment for my mom as soon as possible. I’ll keep everyone updated.

    #24513
    tiapatty
    Member

    Vincent,

    Welcome and sorry to hear your mom is battling with this awful cancer. Please know that everyone on this board has been in your shoes in terms of not knowing what to decide about treatment and where to get treated, this cancer is hard to wrap your head around and works quickly in many cases and one is left feeling blindsided.

    You mentioned City of Hope, I have no experience there but I see they do have information on bile duct cancer and their treatment approach on their website, in case you haven’t seen it, here is the link:

    http://www.cityofhope.org/patient_care/treatments/bile-duct-cancer/Pages/default.aspx

    Patty

    #24512
    luluu
    Member

    Jean, I love sharing…..I pray everyday that something I’m doing will help. I love doing this for him, it makes me feel not so helpless. I will not stop fighting for him…and you should never, ever stop fighting too.
    Here is the link where I purchased the dried berry powder on-line.

    http://www.nutrifruit.com/shopping/product_details.php?id=7

    Purchase the Essiac also….a friends mom is in remission from ovarian cancer and her numbers are remarkably low and the doctor said it is unheard of….she attributes it to the Essiac tea.

    Vincent, My husband was diagnosised in March…..I’d like to think he’s feeling well, but since it affects everyone different,I don’t know how to compare it. He’s still active…works about 25 hours a week.
    It is extremely frustrating, I cry everyday. The one thing I’ve learned through this is dont let the doctors tell you that alternative stuff is useless, I don’t believe it and when you’re dealing with a cancer that can not be cured, why should you give all the control to the doctor.
    I’m fighting for my husband’s life, “I will not let cancer take him”

    As far as doctors, we just change to a specialist in GI cancers. We had it with the jerk treating him before, he probably never even saw a patient with this cancer. He was just going through the motions.
    Research the big hospitals, check the doctor’s speciality….and go see that doctor.

    I have said since day 1, thank god for the internet…..all the information is at our fingertips. I find myself always on google……looking for everything and anything.

    Good luck to you both, take care and fight like hell!
    Lulu

    #24511
    vincently22
    Member

    Thanks Marion and Lulu for the information! Lulu, just curious, do you feel that your husband is doing better after trying the alternative? Also, were you guys able to find the right oncologists yet? It’s really frustrating when they dont know about the disease, instead of referring to a much better oncologist, they said “there is no hope.” We should try to stay strong!!

    #24510
    jean
    Member

    Lulu

    Thanks for sharing all of this information! The article on freeze dried black raspberries is really interesting. I really like the Science Daily site and get their weekly updates, but missed this one. Where do you find it…online or is it available in stores?

    I hope your husband is doing well…sounds as if you’re taking very good care of him! Wishing you both all of the best.

    Jean

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