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mhutch1366

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Posts posted by mhutch1366

    pancoast tumor

    in NSCLC GROUP

    Posted

    Lisa,

    Pancoast tumors are very different. Mine had subsumed 5 ribs and was up into my neck and encroaching on my vertebrae and I still was staged a IIIA.

    Talk to the specialist first, and see what the radiation can do.

    They told Kasey she was inoperable also.

    XOXOX

    MaryAnn

    Alimta & cisplatin + radiation as first line treatment..

    in NSCLC GROUP

    Posted

    Hi,

    I had a similar protocol for my pancoast tumor, I had cisplatin and etoposide (VP-16) for two rounds with two weeks in between; I had radiation 25 days = 5 weeks. I had a Pancoast tumor, a form of NSCLC in the upper lung, that had crept out and under my shoulder blade, into my ribs, and up my neck.

    The tumor, upon surgical removal, was dead.

    This was 7 years ago.

    The tumor was 13 lbs.

    I think the radiation/chemo is a powerful synergy, and I would certainly be hopeful, especially if your mother was having her hip met irradiated simultaneously with the chemo also (in that period of time).

    There are other survivors here as well.

    I think you have every reason to be optimistic.

    I don't know what the Alitma will add to the cocktail, but that's why it's a clinical trial.

    Good luck!

    XOXOX

    MaryAnn

    Mom Is Back In The Hospital

    in CAREGIVER RESOURCE CENTER

    Posted

    Hi Vespa,

    Sounds like the doctors don't want to be bothered trying to give your mother some quality time by managing her disease.

    One CAN live with cancer, even if everyone can't be cured.

    I find that attitude is contagious. I think those doctors' attitudes are toxic and will likely kill your mother faster than cancer.

    I would look for a second opinion or a third, even, until you find a doctor that is willing to try as hard as your mother wants him/her to try.

    I had excellent doctors who said, I think I can help instead of oh, well, no sense trying even if you do want to be aggressively treated.

    I suspect others will chime in with a similar message.

    Attitude is EVERYTHING!

    Good luck,

    XOXOX

    MaryAnn

    Headaches & Balance problems

    in GENERAL

    Posted

    Deb,

    Is the 'nerve pain'med your mom is taking neurontin? That can be rough to get used to at first, and I found the maximum tolerable dose for me: if I go over it, I do have balance problems. Also, I had cisplatin, which affects the inner ear and hearing, and I think balance to some extent as well.

    Hope she finds relief from the headaches.

    XOXOX

    MaryAnn

    RETURN TO WORK WITH STAGE IIIB NSCLC, ADENOCARCINOMA

    in GENERAL

    Posted

    Mary,

    Whatever works for you, hon.

    Try to ramp it up slowly, you'll be fighting fatigue.

    It took me a while to go back, but my boss had told me either full time or nothing, I worked at that time in a research lab where there is no such thing as part time. I was off from my first surgery through chemos/rad and lung surgery, then more chemos, then colonoscopy repair, and then 7 weeks after that I went back. Wiped me out, but I did okay, it took some getting used to.

    Now I have a desk job and I know things would have been different -- but there you go.

    Whatever works for you. Just remember to be kind to yourself. It may take a while for your immune system to be full strength.

    XOXOX

    MaryAnn

    Etoposide and Cisplatin

    in GENERAL

    Posted

    That is also what I had, with 5 weeks radiation.

    I had the same kind of tumor Donna G had, but it was huge.

    I did have surgery to remove the tumor, which extended up under my left ear, my left shoulder, and subsumed 5 ribs.

    The tumor on removal, all 13 lbs was dead.

    I had some trouble with my ears with the first dose of cisplatin/etoposide, after that the doctor coadministered ethyol to help protect my ears.

    I did get shots for low red cell count; the tumor had already made me anemic. I had some neuropathy also.

    This Aug I was 7 years NED after surgery and two rounds of followup chemo.

    It is 'big guns' chemo, but very effective.

    XOXOXOX

    MaryAnn

    Soon Ready!!!!

    in JUST FOR FUN

    Posted

    I agree, the absolutely best proprietors!!

    Can't wait, I'll be happy just to find a low bench by the wall and feed dogs treats all day.... I really miss having dogs. So I'll just spoil yours!

    XOXOXOX

    MaryAnn

    Next lifetime I want to live backwards.....

    in JUST FOR FUN

    Posted

    Someone who has serious troubles right now sent this too me. May be risque.

    I want to live my next life backwards:

    You start out dead and get that out of the way.

    Then you wake up in an old age home feeling better every day.

    Then you get kicked out for being too healthy.

    You enjoy your retirement and collect your pension.

    Then when you start work, you get a gold watch on your first day.

    You work 40 years until you're too young to work.

    You get ready for High School: drink alcohol, party, and you're generally promiscuous.

    Then you go to primary school, you become a kid, you play, and you have no responsibilities.

    Then you become a baby, and then...

    You spend your last 9 months floating peacefully in luxury, in spa-like conditions: central heating, room service on tap, and then...

    You finish off as an orgasm.

    I rest my case

    Here wo go again or ? About seizures

    in NSCLC GROUP

    Posted

    Cisplatin I know from experience is rough on hearing.

    If anything related to seizures is a concern, she should consult a doctor. I have had spots and stuff, but nothing I would term a seizure.

    My mother has glaucoma, and she has blank spots peripherally. That's another story.

    Good luck,

    MaryAnn

    Whole brain radiation/recovery - please help if you can

    in GENERAL

    Posted

    The federal government has a beautiful phrase for this.

    Under doctor's orders....

    able to return....

    under LIMITED CAPACITY ...

    Have the Doctor spell out the maximum hours you think you can work for a week at a time.

    eg, not to exceed 3-5 hours a day 2-3 days this week.

    And you can make them progressive. 4-6 hours,

    2-4 days;

    5-8 hours,3-5 days....The last gives you leave to work from between 15 to 40 hours a week, depending on how you feel.

    Play it by ear, with as much or as little play in the time as you think you need.

    They can't legally let you go if you are trying... ( unless it is a very small company, in which case I think they make up their own rules).

    Good luck,

    MaryAnn

    No excuse

    in MEMBER UPDATES

    Posted

    Been busy at work. Fine me, I'm wishing I wasn't so darned tied up during the day.

    Graduated one daughter, trying to keep tabs on the 12 year old.

    Use of left arm/hand still poor, still numb, still stiff. Beats the pants off not being here to complain.

    Enjoy your summer, all.

    XOXOX

    MaryAnn

    CB4000

    in GENERAL

    Posted

    Randy took the WooHoo!!!! right outta my mouth!

    Congratulations, Connie, and thanks for being such a good friend.

    XOXOX

    MaryAnn

    bck on the hole

    in NSCLC GROUP

    Posted

    Bucky,

    I feel for you, I do.

    Just keep putting one foot in front of the other, and remember the little engine that could -- a children's book that is a legend here, for the little engine's mantra in the face of overwhelming odds was.... I think I can, I think I can, I think I can, I think I can.....

    Go Bucky!!

    XOXOXOX

    MaryAnn

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