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mhutch1366

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Posts posted by mhutch1366

    I'm going insane

    in CAREGIVER RESOURCE CENTER

    Posted

    Carleen,

    Throw away the idea that you're sinning by wanting to keep Keith with you a long time.

    We would ALL like to wake up in the morning and find out this has all been a really bad dream... cancer, finances, job stresses.

    but.... pinch me.... I am awake. It's still here.

    You are a strong woman, Carleen, and you'll do what you have to do.

    You are also loved dearly by the folks on this board, and we are here for you.

    "Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness".

    Don't let your imagination carry you away, dear heart. Don't anticipate what hasn't happened yet. Leave tomorrow's worries for tomorrow, for there are plenty of worries for today.

    And please, hang on to your faith. Believe. Keith is here today, and so are you. That's what's important.

    Be gentle with yourself, and be kind to yourself. You, too, are going through your own caretaker's/lover's he((.

    Remember you are both always in my prayers,

    XOXOXOX

    MaryAnn

    [b]Is there anything else?[/b]

    in CAREGIVER RESOURCE CENTER

    Posted

    Dear Dollfan,

    I am so sorry you and your husband were hit with this horrible disease after being married for such a short time.

    You found the best website for support and warm friendship, which you will need to help you through this rollercoaster of disease, treatment, and emotion. We all need each other here.

    There is no reason why your husband should n't be a miracle.

    Miracles happen every day.

    Get the second opinion. Be proactive, Research, Research, Research.

    Never give up. Never lose hope.

    The advice to take care of yourself was good. Eat well, stay strong, don't be afraid to seek either counseling or antidepression/antianxiety medications or both. Talk to the doctors, ask questions, write down the answers.

    Know that you and your dear husband will be in my prayers too.

    No one deserves this wretched disease.

    God bless and keep you both,

    XOXOX

    MaryAnn

    Jack Had a Heart Attack!

    in GENERAL

    Posted

    (((((((((((Cheryl))))))))))))))

    Hope Jack feels better real soon, and surgery Monday goes well.

    Sounds like a good thing you caught it early.

    I am glad you pushed him to the hospital.

    I bet he is now, too. :)

    You remember to take care of yourself too, hon.

    Wish I could help with the animals too.

    You are both in my prayers...

    XOXOXOXOX

    MaryAnn

    Update

    in NSCLC GROUP

    Posted

    To clarify:

    I first heard of the compassionatte use exceptions when I worked with the doctors who did the first human gene therapy trials in the US, at NIH. I had heard the doctors discussing going "off protocol" for compassionate use for another protocol. I believe you would have to appeal directly to the head honcho for clearance, whether it is the doctors running the clinical trail at NIH or the director of clinical trials at the instittue/facility running the clinical trial. It would have to go through a board for approval or clearance, since it is not yet cleared by FDA. I know they will invoke it when it is a last chance thing, my doctors worked in pediatrics for the most part. They do communicate with the directors implementing the clinical ltrials in various research centers. Don't start with the people who can only say no, go straight for the top, and ask there. They'll know the route you have to go and the approvals you have to get. I only know it is possible. I hope this helps.

    XOXOXOX

    MaryAnn

    Update

    in NSCLC GROUP

    Posted

    Becky,

    From working at NCI, I understand a little bit, I think, of what they need.

    They say they would like to pull a lymph node, which would be full of tumor cells and not a lot of other stuff, ie a "rich source of clean cells" since they need to isolate proteins, a certain kind, from your tumor cells, and then 'make' the vaccine from that. The vaccine can only be as good as the cell sample they can get.

    I hope the protocol allows for cells other than lymph node and that one of the other centers will be able to take you.

    The other thing to remember about trials is they try to keep everything as similar as possible. You could ask the company if they can get clearance for compassionate use outside the trial, that has been done to get around the ineligibility thing.

    Wishing you the best.

    XOXOX

    MaryAnn

    A LITTLE OFF TOPIC

    in GENERAL

    Posted

    Ray,

    Certainly.

    Prayers for Guido, that surgery will be the end of the cancer. I love dogs better than I like most people, so these are potent prayers.

    Prayers for you and your family, too, I know you're worried about the furriest member of the family. Try to take it easy, I think it will be okay.

    XOXOXOX

    MaryAnn

    Follow up scans

    in INTRODUCE YOURSELF!

    Posted

    Mayos,

    I had it made clear to me from both my surgeon and my oncologist that there is a standard time frame for followups. Every 3 months for the first year, every 4 months for the second year ( I think), and every six months for the 3 and 4th years. At some point the scans and the oncologist visits diverged, the scans being more frequent, and being timed post surgery not post diagnosis.I get an MRI of the head and neck, and CT of the chest, abdomen, and pelvis, plus a chest Xray. I asked my surgeon about PET scans the last time I was in there, and he essentially said since we have no baseline pet scans, why start now? I suspect if I begin to have problems with mets, the pet would be essential in tracking those.

    Yes, please let me know about your oncologists wife. I am not sure who subscribes to the "standard" on followups, but I was under the impression it was widely accepted frequency over 5 years.

    Thanks.

    MaryAnn

    Totally off subject - but need you

    in GENERAL

    Posted

    What can I say after that eloquent response?

    Sharon, of course we'll pray real hard for Michael and your family. All you need to do is ask, dear.

    XOXOXOX

    MaryAnn

    PS. Dear God, please make certain Michael's guardian angels do a good job, okay? His mom is very very worried....

    Nursing homes

    in CAREGIVER RESOURCE CENTER

    Posted

    I too know someone who was checked into hospice for the last few days, when family could no longer deal with the medical or pain control issues.

    Please see if that is an option, and bless you for caring about your grandma's dignity at this time.

    Your grandma and your family are in my prayers,

    XOXOX

    MaryAnn

    Follow up scans

    in INTRODUCE YOURSELF!

    Posted

    Rich has the right of it. Without good scans to keep track of any micromets, you won't know, and either will your doctor. The key here is early diagnosis. That's what we're fighting for, since that equates with better survival.

    Ask your doctor why he is so nonchalant about scans...and if that's how he'd take care of his wife.

    Be your own best advocate, and be proactive. Please.

    You are in our prayers,

    XOXOXOX

    MaryAnn

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