MD Anderson visit

Viewing 15 posts - 16 through 30 (of 33 total)
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  • #74864
    lainy
    Participant

    Hey, PFOX, LOVE your AVATAR/Picture! I hope others will follow your lead.

    #74863
    kris00j
    Participant

    Renee, boo to him for telling you 12-18 months. I think any oncologist who gives us an expiration date should be given huge demerits!

    #74862
    rvb
    Member

    Hello Dorien/thebompie4, please let us know if you are able to get a telephone consult from Dr. Javle.

    I live in NJ and don’t have any connections in Texas that would make it practical for me to travel that distance for a consult that would offer no change in the current treatment plan. For some reason, the East Coast does not look favorably on transplant as does Pittsburgh, Mayo, or MDA. I wish I knew why? I showed my onc a report on a successful transplant in U of Maryland and he brushed it aside stating one success does not mean anything. I get the feeling that they don’t believe in giving good livers to bad outcomes?

    We don’t have any children – by choice – but I do want to live my life as long and healthy as possible. Not only for myself, but mainly for my husband John who loves me dearly and means the world to me. To that end, I would be willing to go to Texas if it meant a chance to extend the 12-18 month initial prognosis given in May 2012.

    So far, my oncologist is following the straight and narrow treatment lines, but I have been looking for alternatives. I have been researching this site for successful clinical trials, liver transplants and the constructive information to back up my suggestions. But I am not willing to spend what little money we have to no avail so I really have to weigh my choices.

    So back to my request, please let us know if you have any success with a phone consult. I did get one with a specialist in NYC once and it saved me a long trip to get the same answers I had already received. That was back in May 2012 and a lot has changed since then, so who knows.

    Thank you and Take Care, Renée

    #74861
    thebompie4
    Member

    Thanks Marion!

    #74860
    gavin
    Moderator

    Great news Danna that Dr Javle is seeing you now and I am sure that he will take real good care of you! I hope that the testing goes well and that you get some good news there as well.

    Best wishes,

    Gavin

    #74859
    marions
    Moderator

    Bompie….I prefer to view this cancer as a chronic disease. I think that much lays in the wording and how we like to perceive it. Kyle’s physicians are not wrong with their statements however; the goal of his treatments is to allow him to live with this disease. And, for me this is the crux of the matter. One can live with this cancer; how we live and for how long we live is determined by the individual’s response to treatments. Unlike a few years ago when very few options were available, today we see multidisciplinary approaches for keeping this cancer at bay. Having said that, dear Doreen, obtaining several, professional opinions allows for all feasible treatment options to be explored and acted on. BTW: I read your blog and love the pictures and your honest approach to life.
    Hugs to you and your lovely family,
    Marion

    #74858
    danna0325
    Participant

    Bompie,

    I’m sure they just don’t really know what to do where your at. The oncologist I originally had in ft worth couldn’t even properly diagnose me. (She diagnosed me as cancer of an unknown primary) She put me through a colonoscopy, endoscopy, endoscopic ultrasound, mammogram that led to a breast biopsi, and a brain MRI and PET of course. She kept saying a CT wouldn’t show anything and that’s what MDA diagnosed me off of. I don’t see why your local oncologist wouldn’t work together with Javle. Best of luck, can’t wait to hear an update!

    #74857
    lainy
    Participant

    Bompie, if they keep telling Kyle they are just buying him time then perhaps they are not doing enough or do not know what to do next! In 5 1/2 years not one DOC used that phrase on Teddy. I now know they always knew what was going to happen but they still were terrific with him. I prefer a phrase we use around here and that is, we try to remain realistically optimistic. That’s like giving you an empty pot of gold! I do hope you get in touch with Dr. Javle or any one of our great ONCs and at least then you can get verification that Kyle’s ONC is on the right track. You know I am always hoping for the best for you.

    #74856
    thebompie4
    Member

    Thanks Danna for the info– My husband is here in SLC, Utah at
    the Huntsman Cancer Institute.

    Not many CC patients here though.

    He’s responded well so far, but I feel like everyone always tells us
    “we’re just buying you time Kyle” (which they’ve said 1000X)

    Which they may be.

    But i’d rather have someone who’s FIGHTING for us, with us.

    If someone can buy Kyle 5 yrs as opposed to 12 months–obviously
    that’s FABULOUS.

    He also has FOUR kids that need a dad (and me!)–time is
    a really really really great thing right now. :)

    We will see what we can do to at least maybe have a phone
    consult with this dr.

    #74855
    danna0325
    Participant

    Thebompie4,

    The number on Dr. Javles card is (713) 792-2828. But I think you have to call patient affairs for an appt. Also, if you google him somewhere I know his email comes up. So long as there are mets outside the liver transplant is not an option but later on down the road if the chemo kills it all and it stays that way for a while then it may be a possibility to see if I would qualify. He really gave us so much more hope than the previous Dr. He even went over different things to prolong my life if the transplant ends up never being an option. My previous doc just sad we’d keep doing different chemos till the no longer work. I have a son to raise, that was not good enough for me. Where is your husband being treated at? You may talk to your local oncologist about working with Dr. Javle. I do know that several docs do that. Good luck to y’all and remember that God is the ultimate physician!

    #74854
    thebompie4
    Member

    whoa! that’s amazing news.

    First like it i’ve heard (transplant possibility) with mets outside the liver.
    maybe we need to call Dr J at MD Anderson as my husband
    is stage 4 with 2-3 lymph nodes involved and 2 small spots in the lungs.

    I LIKE LIKE to hear good things with Stage 4 of this cancer!
    It fills me with hope!

    He’s been responding well to chemo so far as well.
    (However a trip to Houston is not possible…but maybe a phone consult?!)

    :)

    #74853
    kris00j
    Participant

    What great news! I also wonder what “good” vs. “bad” cells mean? It must be different cell structures, but it would be interesting to know.
    Good luck, and I hope you have the “good” cells, too!

    #74852
    danna0325
    Participant

    Thank you Porter!

    #74851
    danna0325
    Participant

    The reason they gave me about switching docs is if they did it whenever people wanted then they would be doing it all the time every day and it messes with your treatment. Good cells vs Bad cells, I have no idea what they are that was just his way of wording it in English I guess. He did tell me he thinks I probably have the good cells because if I had the bad ones then I would probably just be getting worse and not responding to treatment. The testing isn’t something that will be done right now unless I have enough tissue left which I don’t think I do.

    #74850
    pfox2100
    Member

    Wow that’s wonderful positive and inspiring new. Congrats to you and continue fighting your battle. Good luck.

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