newly diagnosed with cc

Discussion Board Forums Introductions! newly diagnosed with cc

Viewing 15 posts - 121 through 135 (of 164 total)
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  • #24539
    marions
    Moderator

    Vincent…had you transferred the records to Dr. Lenz, already or, how does he determine the ugency of your visit? Vincent…would you be so kind as to send an e-mail to me? You probably know how to do this but, just in case. Under the name on left, top, you will see e-mail.

    #24538
    vincently22
    Member

    So I called Dr. Lenz office and he is booked for the month of December. So the appointment I got was Jan 5th but the assistant told me maybe it could be earlier if Dr. Lenz thinks the case is urgent.
    This is the phone for the USC if anybody needs 323 442 – 5837

    #24537
    luluu
    Member

    Hi Barbara L, What does it mean that your tumor burst. Is that a good thing? Sorry for sounding stupid, but i don’t understand. What made it burst?

    LuLu

    #24536
    lainy
    Member

    Hi, Linda and welcome to the best little club in the world that no one wishes to join! My husband, Teddy (you can look up my posts) has CC in the bile ducts not in the liver but he is being treated by a fabulous ONC, Dr. Jack Cavalant and a great Radiologist at St. Joseph, Dr. Jon Kresl. We were referred to Kresl by a Dr. James Cashman. He is the best. He was director of liver transplants at St. Joseph. They are the absolute tops. If you care to e mail me personally please do and we can talk. You have come to the right place!

    #24535
    barbara
    Member

    I, too, was diagnosed in Oct with stage IV but my tumor burst. I am being treated at UCSD and have thought about going to Mayo in Scottsdale since we are just off Hwy 8 east of San Diego. I am on chemo. Do they have a lot of experience there with cc? Nice to hear from you.

    #24534
    lindalaverne
    Member

    My name is Linda. I was diagnosed with cc in October. I am now being treated at the Mayo Clinic is Scottsdale. I haven’t met anyone else with cc and was just interested to hear other stories. Mine was quick and terrifying, but I now have some hope from these doctors here at Mayo.

    #24533
    barbara
    Member

    Barbara H.

    Who I Dr. Lenz and where is he located? I would like to contact him, too, since I was just recently diagnosed in Oct. Thanks.
    Barbara Lowe

    #24532
    barb
    Member

    vincent, glad to hear your mom is feeling better and that she has been sprung from the hospital.

    i hope you are able to talk with dr. lenz soon. i know that he sees patients at norris on mondays and thursdays. you can mention my name (hartley) when you call…not that it will do you any good, but you never know. you should also mention this web site.

    i’m hoping that your mom will be fortunate enough to be able to get a resection…..there are several people on this site who were once told they were inoperable and eventually had surgery.

    take care vincent.

    barbara h

    #24531
    marions
    Moderator

    Vincent….great to hear that your Mom is being tended to so well. I am looking forward to your next update.
    I am sending all my best wishes to your Mom and your family,
    Marion

    #24530
    vincently22
    Member

    Hello everyone,
    Barbara,sorry to hear that you have go to through all of the dramas and still taking your time to answer my question/giving advices/opinions. I really appreciate it. Oh, I dont know if I take this as a good news for mom or not but you said they told you it was “inoperable” and you still did. Mom’s was at 5 cm about 2 weeks ago and I dont think it grew to 13 cm by now (gotta see the newest report which they said it’ll take about 5 days). So I’m hoping that it’s still “resectable”
    To answer Marion, I have other siblings (5 total) and we do take turn to take care of mom. HOwever, I’m the primary person who is doing the searching/calling to specialists because my English is better than most of them (we are chinese/vietnamese).
    Dr. Huan Giap sent me a form that needs to be signed by mom to release her medical record so he can evaluate and give his opinion. I think I should go ahead and do that since it doesnt hurt to hear more feedbacks from different doctors.
    As for Dr. Lenz, I think I should call his office tomorrow to see what stuff I have to do in order to request him to be mom’s 2nd opinion doctor.
    Good news, mom was discharged today and she is doing good. They provided us oxygen machine so she could use it at night time. I’ll keep everyone updated again tomorrow.

    #24529
    barb
    Member

    vincent, ouch i just lost all my typing…………. oh well, i’ll try again.

    first off, my next appointment with lenz isn’t until jan 4th. i may stop by to see him on the 22nd of this month, post my scan, but that will not help you right now.

    in my first posting, i left out the beginning of my cancer journey. i found my own tumor in dec ’02 and was operated on in feb ’03 at kaiser (after 2 other consultations).

    my tumor weighed just under 2 pounds and was around 13 cm. i was staged at T1 for pathological, 0 lymph nodes were tested, and staged at T3A for “stage grouping,” histologic grade was G2 meaning moderately differentiated. the write up for the 1st surgery was so scant that it was not helpful to any physicians post kaiser. the kaiser surgeon said there was nothing proven to treat cholagio and therefore he did not offer chemo, radiation, or any other treatment.

    i paid a research firm “the health resource inc.” and learned that i should have been offered radiation (at least back then…don’t know if that’s still the case), and that i needed to get ct scans and turmor markers done on a regular basis. i had to pressure kaiser to do those tests. in oct of ’03, due to regular testing, i learned that i had a recurrence. kaiser offered rfa (said i was inoperable) but the person who was to do the procedure did not have much experience. i had a consult with the “wonderous” dr. lenz who advised me to hold off until my insurance changed and then i could get a 2nd opinion by dr. selby at usc. i did just that and had my 2nd surgery in feb ’04…began chemo treatments in april ’04 and had a 3rd surgery in aug ’06 and resumed chemo after that.

    i have been on a chemo “holiday” since …..around april after being hospitalized for migraine headaches that we believe were related to the avastin. it was a joint decision to stop chemo for now.

    i’m sorry that i have NO info on city of hope regarding this cancer. i do know that lenz is one of the best. he treats GI cancer…the man is a wizard. i have no regrets about seeing him.

    lenz fights hard for the proper care for his patients. he is very busy, but i’ve never felt neglected. he demands a lot out of his staff and is forthright with me. we know that i am “off the charts” with this disease, but having been given a few months via kaiser it’s will be six years in feb since my first surgery.

    sorry but i don’t read this great site on a daily basis as my life continues to be filled with drama from other family matters. today was dealing with a lawyer, a child psych., billing errors, seeking custody of a grandchild (wild i know), brother with bones mets from bladder cancer, house painters……. however, because i posted to you i will do my best to check in daily as long as lenz is a possibility. warning….he can get a bit testy….but he’s brilliant.

    wishing you the best,
    barbara h

    #24528
    marions
    Moderator

    Vincent….I thought to write to you until Barbara has a chance to answer your questions. When my husband was diagnosed we made sure to follow the leads to three different specialists of whom not all agreed on the direction to take with his treatments. This is time consuming and stressful however, it was possible. Always, I find it of utmost importance to gather all records and forward them to the specialists in this field of cholangiocarcinoma. This will allow you to make informed decisions. Are other family members involved other then you and your sister? If so, you might want to reach out and ask for some help. I am hoping for your Mom to feel well and your day at school to be productive. Please, stay in touch.
    Hugs to you and your family,
    Marion

    #24527
    vincently22
    Member

    Hello Barbara,
    It’s good to hear that you’re still doing good. I’m just curious, when you first diagnosed with that back in 04, what stage was it at? Did they also say it was “inoperable” and that you had 6 months to live? Anyway, now i’m in the middle of everything. Now that you’re telling me Dr. Lenz is so good. So how often do you see him now? I mean I dont know whether if I should leave my mom to go with City of Hope or should I go with Dr. Lenz? Since you’re one of his patients, I wonder if you can bring up my mom’s case and ask him for advice? Thanks alot Barbara and I’ll keep everyone updated. Today i’m in school and my sis is with mom at the hospital. Hopefully mom will be discharge today. I’ve been waiting for this for a long time :( Hopefully it’ll happen.

    #24526
    barb
    Member

    hi vincent,
    great advice from everyone. just wanted to let you know that i’ve been a patient of dr. lenz’s since jan 04. i went to him around oct 03 for a consult. i paid out of pocket at that time as i had kaiser insurance.

    lenz is an excellent oncologist. he is very busy and in high demand. having said that, he is one of the best in treating cholangiocarcinoma.

    i’m on a chemo “holiday” at the moment but have been on numerous treatments. all chemo and/or biological therapy …..avastin. i have had to fight blue cross to pay for my treatments.

    while the chemo can be challenging, and i do have some lingering issues from those treatments, lenz always listens to my complaints and adjusts the chemo amounts accordingly while still ensuring the amount would affect the cancer.

    treatments are certainly an adjustment in life, but i am convinced that i would have died in 04 without treatment.

    what a great son you are to fight for you mom.

    wishing you the best,
    barbara h

    #24525
    marions
    Moderator

    vincent…you have reason to feel relieved. Everything is falling in to place. I assume that your Mom will be discharged tomorrow and hopefully, the transfer to the City of Hope will be uneventful. Definitely, I would have Dr. Giap review the medical records of your Mom as I am a strong believer in 2nd, 3rd or even more opinions. This cancer does not occur enough for any one physician to be the absolute authority in re: to the treatment protocol. You have taken on so much and you are admirable in the way that you are advocating for your Mom. Sending all my best wishes your way.
    Marion

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