newly diagnosed with cc

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Viewing 15 posts - 106 through 120 (of 164 total)
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  • #24554
    lainy
    Member

    Great work! You cannot ask for anymore than that. Now mom can spend 2 weeks getting her strength back, you get a little mental break, and your family can have a nice Holiday all together. Keep us posted.

    #24553
    vincently22
    Member

    We went to City of HOpe today and Dr. Vincent Chung looked at the record, he’ll have to meet up with other surgical oncologist to determine what they’ll do with mom. In the mean time, mom has to do a stress test first to make sure she’ll be ok if there is anything that need to be done (surgery or radiation). Hopefully mom is still a candicate for surgery. But he said it’ll prolly take about 2 weeks before anything can be done. And I did bring up my concern what if it spreads etc. He told me that another 2 weeks shouldnt make much of a difference b/c he wants to minimize the risk. Also, if it really spreads that fast, then the radiation/surgery (if qualified) is not gonna work.

    #24552
    vincently22
    Member

    Hello,
    So we got a call back from City of Hope and they give us the appointment for mom on Dec 16th at 1:30 pm. Dr. Huan Giap (San Diego) told me he looked at the medical record and said that Y-90 radiation is an option for her. I emailed him back to ask if it means it’s “inoperable” but he hasn’t replied yet.

    #24551
    marions
    Moderator

    Vincent….good luck on your exams. Things are moving along with your Mom’s medical records being at Dr. Giap’s. Hoping for your Mom to continue to improve. You have a good day, also.

    #24550
    vincently22
    Member

    Hello,
    Sorry for not able to write much yesterday since I was busy studying for the exam today. Dr. Huan Giap’s assistant told me she just received mom’s medical record and will have Dr. Giap to look at it tomorrow once he comes in. Have a good day everyone!

    #24549
    marions
    Moderator

    Vincent…you are so on top of it and I congratulate you for it. Sometimes, the best thing to do in order to have results, is to take things in your own hands. With your brother personally taking the records (make sure it was an extra copy otherwise, have them copy what they need) you know it will get done. You are (as most of us have) experiencing the glitches in the american healthcare system. Seems as if someone always, somewhere, is not doing their job however with your follow-up things are being tended to. Books could be written about this subject and I would not be surprised for you to be hearing from others who have had to fight their way through the obstacle course of the American Healtcare System. So glad to hear that your Mom is doing o.k.
    Tons of good wishes coming your way,
    Marion

    #24548
    vincently22
    Member

    So we just found out that the case manager never did his/her thing. The oncologist told us that he thought they were working on it. Wow, they’re playing the blaming game omg. I’m gonna find out who that case manager is and I’m definitely will complain.

    #24547
    vincently22
    Member

    Hello,
    I called City of Hope today to see if they have an appointment for mom but they didnt’. So I called back the oncologist from Garfield hospital and found out that he would have his assistant to do it sometime today and would request for the medical record. Seems like he wasn’t really following up but I dont know. Anyway, so my brother will bring the medical record to them directly so they could refer her to City of Hope ‘cuz if we wait for them to get the record, it’ll prolly gonna take another 5 days with the way they do things :(
    I rescheduled the appointment with Dr. El-Khoueiry instead of Dr. Lenz (who referred me) ‘cuz he could give us an earlier appointment (Dec 18th). Mom is doing ok so far :)

    #24546
    marions
    Moderator

    Vincent….seems as if everything is moving along in a timely manner. Don’t be frustrated as you are doing everything right and you now need to await the physicians responses, which hopefully will be within this week. Is your Mom feeling better?

    #24545
    vincently22
    Member

    Hello everyone,
    My brother is gonna mail out the record to Dr. Huan Giap (San Diego) sometime today. I tried calling the oncologist (from Garfield hospital) to see the status of my mom but he wont’ be in till 2morrow and I left a msg for him to call me back tomorrow. It hasn’t been a week yet but I’m just worried and make sure he’s following it. It’s kinda frustrated. I also just emailed Dr. Lenz and asked him to look at my mom’s medical record.

    #24544
    vincently22
    Member

    Thanks Lainy,
    I’ll be calling Sandy on Monday or Tue to see if Dr. Lenz got a chance to look at mom’s medical record yet.

    #24543
    barbara
    Member

    LuLu,
    My tumor filled with fluid and broke open. The surgical oncologist I saw at first said it could have been because the center of the tumor died and it broke open or just because it was getting too big. I didn’t receive an injury or anything. I didn’t know I had the tumor and then had pain under the rib cage and then fever. I had to have a Jackson-Pratt drain with a tube coming out of my liver for 2 weeks to drain off the fluid. That situation has resolved itself but my liver remains tattered and torn at the end from when the tumor bursting. I don’t know yet the specific name of mine (hep or what) but I will find out at dr. on Monday.

    #24542
    lainy
    Member

    Hi Vincent: Your parents did a great job of raising their children as you are all amazing!! Just a suggestion. As we get near the holidays, perhaps some people may cancel an appointment here or there and I would call Dr. Lenz office and see if you can put your mom on a waiting list for cancellations. Keep up the good work!!

    #24541
    vincently22
    Member

    Today my brother finally got a copy of medical report and a cd of all the scans. He brought it directly to Sandy (who works for Dr. Lenz) so she’ll give it to Dr. Lenz. I haven’t emailed Dr. Lenz yet. But Sandy said she’ll let him know about it and hopefully he can schedule it sooner than 1/5/09 at 2:30 pm. I’ll be contacting Dr. Huan Giap also to see if he’d prefer us to mail it to him or if he wants to request to get it from hospital since we just faxed him the form that was signed by my mom to agree letting him get a copy of it. I tried calling his office today but I couldnt get a hold of anyone, but hopefully they’ll either call me back or reply to my email :)

    #24540
    barb
    Member

    reply to barbara l and vincent….

    hi barbara, l’m sorry i did not reply last night…i was starting too but was feeling a bit ill and had to stop.

    dr. lenz is located at the norris comprehensive cancer center, 1441 eastlake ave., los angeles 90033, which is near I-5.

    the phone # to norris is 323-865-3000. but, as vincent posted there is another # (i just learned that via vincent’s post) for usc keck school of medicine. evidently you can also get an appointment with lenz through the # vincent posted 323-442-5837. norris is part of usc.

    hey vincent you will see lenz the day after i do. heck, i didn’t think he saw patients at norris on ….there goes my brain cells….i had told you i am seeig lenz on the 4th…that’s a sunday….oops!!! my appointment is the same day as your mom’s vincent. my appointment is not until 11:45 am, later than i usually go. what time is your mom’s appointment?

    barbara l and vincent
    when you make the trip to norris there is free valet parking for patients. it’s wonderful not to worry about parking when you are already a bit stressed. you just drive up the driveway at norris and one of the parking guys will assist you.

    on my first visit to norris i had to go to the “admitting” office to get an id. as you enter the building the admitting office is almost straight ahead. it’s around that small wall you will face as you enter the building. there is a small waiting area around that wall and you sign in and wait there to be called.

    i can’t remember if i then had to check in at the front desk or if the admitting office served that purpose on my first day. i do know that on any future appointments you need to check in at the front desk before proceeding to lenz’s waiting area.

    as you enter the building you are in a “hallway” of sorts. to get to lenz’s waiting area you continue down the “hallway” to the end. there are seats, some coffee, and water available in that area.

    probably irene or nilsa will call you in for your appointment. then….taline may come in before lenz does or with him. taline is a nurse practitioner and very knowledgeable. everyone is really, really nice there.

    good luck to you both.
    barbara h

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