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Viewing 15 posts - 31 through 45 (of 61 total)
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  • in reply to: newly diagnosed with cc #24658
    barb
    Member

    dear vincent,

    so very sorry for the loss of your dear mom. your family sounds like a wonderful, loving family and i’m glad that you have each other to lean on.

    when your love is so great the pain is great as well. i hope that somehow you are able to express your pain as you deal with everyday demands….then there is school. you have a lot on your shoulders and my heart goes out to you and your family.

    with love,
    barb h

    in reply to: newly diagnosed with cc #24616
    barb
    Member

    marions….thank you for your comments. yes, after one round of antibiotics the infection was almost gone when i had the groshong removed. due to the lingering infection i was prescribed another round of antibiotics. finally, that wound appears to be ok. the clots are still an issue, but i’m getting daily injections of lovenox.

    vincent, thank you for your concern and my heart goes out to your mom with all she is going through. good luck with your classes.

    love to you,
    barb h

    in reply to: newly diagnosed with cc #24613
    barb
    Member

    vincent, sorry about your mom. when i suffered from mouth sores i was prescribed Daniel’s Solution. it is “compounded” by a pharmacist and is therefore not available at some pharmacies. i got mine through Norris. it worked great. i also use Biotene mouthwash.

    good luck to you.

    i’ve been hiding away as our youngest grandson (7 years old) has been living with us since december. he is 100% disrespectful, been in the principal’s office more than once….so much more to tell….:-(. add in a few health problems of my own….central line infection and now battling blood clots in my arm………..

    take care…you are a wonderful son. your mom is so fortunate to have you caring for her.

    with love,
    barb h

    in reply to: Can I not catch a break? #24782
    barb
    Member

    hey kris,

    sounds like it may be related to your change in diet??????? you said it’s been around 2 months and that’s about when you arrived in the states.

    perhaps it has to do with processed food, or just different food. is there any way that you could get your hands on some enzymes? i take a prescription drug called creon 10. although, i have to say i still suffer from gas issues.

    i agree with marions, try bland food and see if that helps.

    you poor thing. i admire you for traveling a great distance to spend time with your family.

    wishing you comfort,
    barb h

    in reply to: newly diagnosed with cc #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

    in reply to: newly diagnosed with cc #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

    in reply to: newly diagnosed with cc #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

    in reply to: newly diagnosed with cc #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

    in reply to: Husband newly diagnosed #22396
    barb
    Member

    jan,

    back in 2003, i paid a “firm” to research for information and treatments for intrahepatic cholangiocarcinoma. the booklet i received was very informative and Dr. Gores was very prominent in the credits.

    i think, from what i’ve read, that he is one of best doctors in treating this nasty disease.

    i think you are off to a good start, certainly much better than how i started.

    barb

    in reply to: fatigue #19893
    barb
    Member

    jeffg,

    thanks jeff, mr. clean was the name i was searching for. oh wellllllll, i don’t have much memory left.

    barb h

    in reply to: Hope on the Horizon #14164
    barb
    Member

    stacie,

    thanks for your reply. i have a ton of admiration for lenz, as he (and the USC surgeons) have been able to prolong my life.

    i hope this question is not out-of-line, but would a small $$ donation help to ease your financial burden for the trip? if so i would like to send one.

    thank you,
    barb h

    in reply to: fatigue #19891
    barb
    Member

    debrah,

    about that treadmill, mine starts off really slow, around .6 mph. it’s so slow that i have to boost it up right away or i would get more exercise just walking walking through our home. perhaps there is some way to decrease the speed on yours. were you able to get any literature about it? if not, perhaps you can find some info on line or by calling the manufacture. it’s amazing that someone gave away a treadmill and hopefully you will be able to use it without getting injured. be careful.

    also, with having young children i would think you are almost on a constant run. anyone battling this disease with young children to bring up should be wearing a diamond crown.

    take care,
    barb h

    in reply to: fatigue #19890
    barb
    Member

    maryanne80,

    thank you for posting about joe’s walking progress. you gave me the kick start i needed. i finally got myself back onto my treadmill today. although, i did have an excuse for sometime as i had vertigo for weeks and high blood pressure. now, i am better and actually taking a 6 week vacation from chemo. it scares me, but it may be the chemo that’s causing some of the problems.

    good luck to you and joe. he’s fortunate to have a trained nurse and loving wife to help him. from your postings, it sounds like he knows how fortunate he is.

    barb h

    in reply to: fatigue #19889
    barb
    Member

    hey jeff,

    you remind me of that old commercial ………geez, i can’t remember his name…but, he went through a house like a white tornado.

    it’s great you are feeling so energetic, especially with all you’ve been through and continue to endure.

    i’m thrilled that i can actually read and post now that my head has stopped spinning.

    thanks for all your contributions.

    barb h

    in reply to: Hope on the Horizon #14162
    barb
    Member

    thank you Stacie for the post/link.

    i browsed through the conference schedule and was in the process of telling my husband that i would have to print it out and give it to dr. lenz at my next appointment. welllllllllll, he’s one of the speakers. WOW!

    i probably would not have found out if you had not posted the link.

    barb h

Viewing 15 posts - 31 through 45 (of 61 total)
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