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  • in reply to: need drug info: growth inhibitor drugs #47037
    kamnbelle
    Member

    Dear Chris:
    Sorry to hear about the insurance dilemma. Did you go through the Genentech Access Solutions? http://www.genentechaccesssolutions.com/portal/site/AS/

    It seemed that they would help you navigate your way through the insurance appeals process. Genentech also has a specific access program for avastin.
    http://www.gene.com/gene/news/kits/corporate/patientacc-factsheet.html#avastinpatient

    You’ve probably gone down those roads, wanted to make sure.

    Could you tell me why your doctor believes Avastin would be beneficial? Where are you being treated (if you don’t mind telling me). My dad has suspected cc, his treatment is being overseen by MD Anderson, but treatment itself is in Alabama.

    Good luck!

    in reply to: Dysphagia / trouble swallowing and keeping food down #50533
    kamnbelle
    Member

    Thanks so much for the responses! I will pass on the information. Right now Dad is at the hospital, got IV fluids and Pepcid, but not Protonix which worked before with the dysphagia. I told my sis to insist on a dose of Protonix b/4 trying anything else. Dad (and sis) are in Mobile, AL, and I am in TX. Wish I could be there with him all the time, this is making me so angry. Who ever heard of such a ridiculous disease? His doctors are not aggressively treating the dysphagia, or even treating it at all. Any ideas for oncologists in the Mobile AL area?
    Thanks again.

    in reply to: HER2 testing and treatment with Herceptin #50542
    kamnbelle
    Member

    Thanks so much. I couldn’t use the links, but I did search this discussion board and got a few hits. Am looking in to getting the HER2 test from a private company. A long shot, but who knows. Dad has increasing dysphagia, and trying to come up with some type of help with that at the moment.
    Again, thank you for your kind response.

    in reply to: Treatment Centers/Physicians #29953
    kamnbelle
    Member

    Does anyone have recommendations about surgeons/oncologists in Chicago?

    in reply to: Treatment Centers/Physicians #29952
    kamnbelle
    Member

    My dad was being treated by Renato Lenzi, at MD Anderson. Excellent ultra-competent and he himself is a cancer survivor (colon cancer 2002). Unfortunately, Dr. Lenzi has been seriously ill, don’t know why. Now treated by Dr. Varadachary at MDA, who also specializes in GI/Cancer Unknown Primary.

    in reply to: Very high CA19-9 numbers? #50434
    kamnbelle
    Member

    I was interested in the fact that your brother was prescribed Taxotere, right after Cisplatin. PubMed had some info on increased side effects from previous Cisplatin. My dad just had his first follow up at MDA after four rounds of Gem/Cis. No change in tumors, no new growths, the CT scans looked eerily the same as the ones in February. (Background: Dad has several retroperitoneal tumors, but no primary although cholangio is suspected). I took that as good news. However, his CA19-9 had increased from 1600 to 2100. They want him to do 5FU and oxaliplatin. Any thoughts?
    Much hope and good thoughts to your brother.

    kamnbelle
    Member

    Thank you, thank you all so much for the warm welcome. I have been reading around and there is so much information and inspiration on this blog! I am thinking second opinion on surgery; maybe we haven’t seen the right doc.
    This site has given me reason to hope and to take everything one day at a time.
    Kam

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