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mhutch1366

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Posts posted by mhutch1366

    If Tarceva doesn't work - what then?

    in GENERAL

    Posted

    There are a lot of options yet to try.

    Your wife's age and otherwise relative good health all count heavily in her favor.

    I'm sorry to hear she developed resistance to carbo/tax.

    Where you don't know if she's getting placebo in the trial, maybe it's time to rethink that.

    You'll feel better if you talk to your onc. about plan b and plan c.

    My onc had in mind already what he'd do if this therapy failed (which it didn't).

    There's an organization in California called KidsKonnected which, in addition to local stuff for kids, will also send a book about cancer suitable for kids, a card from another child, and a teddy bear - at least that's what my kids got from them, and you can keep posted on what else they're up to.

    Chin up, there's a lot of options to try yet.

    We're here, too.

    XOXOX

    MaryAnn

    Pain -----after thorocotomy

    in GENERAL

    Posted

    God bless your memory, dear lady.

    Bless all those folks, and every one else on here.

    Pancoast tumors are a strange kind of lung cancer defined mostly by location and growth mode, made up of NSCLC tumor.

    I remember how much they hurt, and that they can make you a little ditzy because of the calcium level changes.

    I'm still here after that turkey sized tumor. Go figger.

    XOXOXOX

    MaryAnn

    It's normal to worry

    in GENERAL

    Posted

    I have my scan on a Monday and see the surgeon in clinic on Wed am. Tues is work as usual, hope it's busy, try to stay distracted with my 11 year old to pass the evening.

    I still get the jitters, so I try really hard to not think about it.

    Stay distracted!

    XOXOX

    MaryAnn

    I really need to talk and hear others stories

    in INTRODUCE YOURSELF!

    Posted

    Peg,

    Tell your mom they all wrote me off too.

    I found a doctor who said, I think I can help you.

    To make it short, the thirteen pound tumor they pulled out of me was dead after the chemo and radiation.

    I bet she's feeling pain /self medicating for depression because she feels it's a done deal. See if the doctors at the hosp can arrange for her to see a doctor about antidepressants. I would not have gotten through all this without some help...

    Let her know that statistics are all based on OLD OLD information. Besides, I don't know any of us that are 45% or 74% here -- if you are here it's 100%, and only God knows when you're going home...

    I hope by now your mom is starting to get her fight back, and get over the initial blow that diagnosis can be.

    Prayers and strength to you all...

    XOXOX

    MaryAnn

    90-yr-old Papa , trouble getting consult from doctors

    in INTRODUCE YOURSELF!

    Posted

    Hi Moogy,

    Sorry to hear about Papa. A PET scan would indicate, I think, whether or not the spots were metabolically active. I think that's much less invasive than a biopsy, and less stressful. At this point, I believe they would consider any tumor to be a new primary rather than the old one come back.

    I agree about a specialty facility. If that's what Papa wants to do.

    Regarding his lung capacity -- I am running about 45% lung power now, and they had no problem putting me down for bronchoscopies. This was after my cancer surgery,and I have COPD, but I am years younger than your dad.

    I think it's terrific that you're willing to go all out to help your dad get the best treatment possible ( I think you're going to have to travel from the sound of it).

    You haven't said much about what he thinks of all this, and what he wants to do.

    Glad you found us, and welcome...

    XOXOXX

    MaryAnn

    Paraneoplastic Limbic Encephalitis (PLE)

    in SCLC GROUP

    Posted

    Jim,

    I pm'd you a weblink and info to a clinical trial at Rockefeller University, where they are treating this disorder(s) by immunosuppression using tacrilomis. I THINK it reads that there should be no additional cancer locations, other than dermal melanoma.

    They are also building a sample bank for research use as is another Clnical trial.

    I hope this at least gives you the name of a doctor at RU that the oncologist could call for more information.

    Glad you found us,

    MaryAnn

    Choices

    in GRIEF

    Posted

    Thank you all for your wisdom.

    I "won" this fight; today I am still here.

    But that doesn't mean much in the greater cycle of things -- Life.

    It -- all of it -- is about attitude.

    Thank you all again for the reminder.

    XOXOXOX

    MaryAnn

    My MIL has nsclc and we are so out of the loop!

    in CAREGIVER RESOURCE CENTER

    Posted

    My two cents' worth:

    If they have a trip as a goal, fine.

    You can have a super party when they travel to you.

    For yourselves, esp your husband and son:

    Make the trip and stay somewhere nearby, taking an extra adult/sitter, so you and/or your husband could see her for

    brief periods of time with one or two of the kids. I do mean brief. That should not put her out or fatigue her, and that way you and your husband and your children would not be sitting on burning regrets of not seeing her one more time...

    I by good fortune and happenstance did get to see my grandpa a few days before he passed, and I am so relieved even now, 34 years later, that I got a chance to see him.... no regrets, by God's grace.

    Prayers for your whole family.

    XOXOX

    MaryAnn

    What next?

    in CAREGIVER RESOURCE CENTER

    Posted

    Melinda,

    Please tell your husband from me that one can fight better when constant pain isn't wearing one down into the dirt constantly... I'm in a great deal of pain every day of my life, and with the help of medication I am able to raise my kids and hold down a full time job and shop for food and cook and drive the kids everywhere etc.

    It's easier to think positively, and see clearly, when you're not exhausted from chronic pain.

    That said, I'm sorry this dam-ed disease has moved so fast. Definitely sucks.

    Whatever your husband is most comfortable doing is what you should do, regarding hospice.

    Cancer cannot:

    Cripple love.

    Shatter hope.

    Corrode faith

    Destroy peace.

    Kill friendship.

    Suppress memories.

    Silence courage.

    Invade the soul.

    Steal eternal Life.

    Or conquer the spirit.

    (anonymous)

    My prayers are with you and your husband as he continues to fight this beast.

    Keep your chin up.

    XOXOX

    MaryAnn

    Pet vs CT-late stage

    in NSCLC GROUP

    Posted

    Wendy,

    You are getting the best type with the PET. I was diagnosed in '00, and have been tracked with CT and MRI, as there is no original PET for comparison. Most recent scans were dropped to just CT and xray, once a year, from pelvis to neck.

    The PET is the more comprehensive, from what I understand. So it looks like you're being screened most thoroughly.

    Since I was diagnosed, I feel as though I'll always be "looking over my shoulder and waiting for the other shoe to drop".

    I think this is a pretty common thing among surivors. So.... my advice is, chin up and think positive.

    XOXOX

    MaryAnn

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