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mhutch1366

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Posts posted by mhutch1366

    Hair Loss

    in NSCLC GROUP

    Posted

    Sally,

    Your brother might profit from a mediport put in, since even good veins get difficult under chemo. It saves a lot of time and discomfort.

    I hope the chemo is working for your brother, and that things start to go more his way.

    He's lucky to have sisters who love him so very much.

    Know that you are in our prayers....

    XOXOX

    MaryAnn

    Why I haven't been "here".

    in GENERAL

    Posted

    My Dear and Beloved Friends DeanCarl and Fay,

    Becky said it best, but I'll reiterate.

    I love you both, for your empathy,

    and the guts it takes to not crawl whimpering under the bed -- The last part is for all of us who get hit with CANCER and empower ourselves to deal with it, however we come to terms with that.

    We all hit lows in the roller coaster where the emotional end of everyone's disease becomes too much, and we lie low for a bit, until we recover our strength.

    I too feel like an outsider at times, because I have a "clean bill" to date. Maybe because I had extra medical attention, being an NIH employee.

    I do admire strength of character, and the ability to share and uplift others, which I see as part of the deal when one has cancer -- to support fellow cancer ites. You both are heroes to me in that regard.

    I am sorry the outside world is so lousy sometimes, I wish I could fix it for you. I wish I could fix it for me, and for all of us.

    As long as we don't bow down and let the disease become empowered over us, we win, no matter how long our tenure here is, or under what terms it is. I truly believe that.

    The main reason I will chose to fight if my remission fails this time is I have children to raise, and I'm not finished yet. I have a duty to them to try and hang around, so I'll do that. I have no fear of death, or of dying, but I do know there is a finite amount of times I can fight that big fight and keep going. But, I am empowered with CHOICE.

    If there is anyone on this board who is pressuring or criticizing either of you for the decisions you have made, I'd like to see them go through me first rather than hurt either one of you. I'd fight to the last bit of my being to defend your right to live in peace in your own fashion.

    Again, louder, incase you didn't hear me the first time,

    I love you both, and you are my heroes

    Screw the rest of em, they don't rate anyway.

    God bless and keep us all,

    XOXOX

    MaryAnn

    What do you think of this enclosure?

    in CAREGIVER RESOURCE CENTER

    Posted

    I think the insert is a good idea.

    It wouldn't hurt to have purell hand sanitizer extras kind of around....

    If your mom wants to do the receiving line, she could wear gloves and a surgical mask against infection -- at least she would be there, and her eyes could shine out....

    Lots of purell hand sanitzer around..... and a couple pair of nice gloves for your mom. The surgical mask for the receiving line may be too visual, but it would work. It would also serve to remind those who hadn't paid attention that your mom is at risk for infection.

    ENjoy your wedding, and I hope your mom has a wonderful time!!

    XOXOX

    MaryAnn

    Brain met symptom question

    in NSCLC GROUP

    Posted

    Hey T-Bone,

    The things you are describing describe my initial response to cisplatin pretty well. To this day I hear things that aren't there, like running water, and when fatigued I hear a metallic clink. Initially, I was hearing everything very LOUD and it hurt! Strange strange phenomenon. I can attribute mine to the chemo, and the damage to the ear.

    Perhaps the radiation may have temporarily affected your ears in a similar fashion. In any case, consult your oncologist about it.

    Good luck.

    and no, you're not hearing things... lol..

    XOXOX

    MaryAnn

    Rant Number Two

    in GENERAL

    Posted

    Sounds like in the last few days you've managed to run into all of them.... all by yourself... got to be a record.

    Seriously, I think we've all had days where that's how it seems, where

    "Enough is enough."

    You rant very nicely.

    You can be on my team any time, kiddo. Love your attitude.

    Take a bubblebath, read a good book. Have a nice dinner. Do something for YOU.

    Love ya, kiddo.

    MaryAnn

    Some new Symptoms have arrived

    in GENERAL

    Posted

    Oh, Carleen,

    My heart goes out to you....

    I had the hot and cold stuff with the tumor, continued for a while after the tumor was removed even...

    Fatigue, that I remember well also. I turned out to be anemic, which was a large part of it.

    The loss of function/numbness I had also, but for different reasons. Remember, for carpal tunnel, even fluid backing up can be enough to set it off (ever heard of pregnancy related carpal tunnel?).

    You could work yourself into quite a state, OR...

    you could take it as it comes and try not to borrow trouble.

    It's not absolutely necessary to assign everything a meaning...

    Hang tough and try not to make yourself too crazy until the appointment. Take it easy, and take a page from Keith's book -- take a nap.

    Try to have a nice weekend,

    XOXOX

    MaryAnn

    My Reality Check Rant ......

    in GENERAL

    Posted

    Hooray, Fay!!!!!

    I am standing up and cheering, tears running down my face, because you are SO RIGHT!!

    I lost my friend Fran last spring to lung cancer, she and I had been diagnosed and had surgery at about the same time. She did not go quietly. She is the one who wrote me "Ain't it grand to be alive to witch!!"

    Unfortunately, she was uninsured and changing jobs, and was unable to have radiation or chemo post-surgery. The doctors waited until the cancer came back ( and her insurance kicked in...).

    But Fran had HEART!!. I saw her the week before she died, and she was laughing and talking about celebrating Next YEAR's anniversary survivorship. Hats off to you Fran. You're missed.

    Fay, I believe in being proactive. Thank you for the reminder.

    I believe I will always have "one more good fight" left in me. I too will not go quietly into the night. I am fortunate enough to have an oncologist who thinks theres always one more thing to try. Love that man for his attitude.

    I am going to applaud Fay again, and tell you all:

    She is my hero.

    Love and prayers to all of you,

    MaryAnn

    My Dad's 1st oncology appt................

    in NSCLC GROUP

    Posted

    Angie,

    I agree with Fay, look for a radiation oncologist who is aggressive enough to want to fight with you, and thinks he can help with irradiation of the spinal mets.

    There are aggressive doctors who don't know the word quit, just as there are survivors who don't know the word either.

    If that's what your Dad wants to do, then go for it. Shake the bushes. If you look hard enough, you will find one.

    But, like Fay, I am also very aggressive about treatment.

    IT aint over til it's over..... AND IT AINT OVER.

    Prayers for you and your dad,

    MaryAnn

    New Drug approved by FDA for Mesothelioma

    in NSCLC GROUP

    Posted

    From Washington Post:

    I thought this was encouraging...

    FDA Approves Drug for Asbestos-Related Cancer

    Thursday, February 5, 2004; 10:15 AM

    The Food and Drug Administration announced Thursday it has approved the first drug for treatment of a rare type of cancer known as malignant pleural mesothelioma. The drug, pemetraxed disodium, is used in combination with cisplatin, the agency said.

    Sold under the trade name Alimta, the newly approved drug received priority review as an orphan drug, FDA said.

    Only about 2,000 new cases are diagnosed annually of this cancer, which occurs in the mesothelium, a membrane that covers and protects most of the internal organs of the body. This form of cancer is usually associated with a history of asbestos exposure.

    MaryAnn

    FDA approval for mesothelioma drug

    in CLINICAL TRIALS

    Posted

    Saw this in the Post today online:

    From the Wash Post 2/5/04:

    FDA Approves Drug for Asbestos-Related Cancer

    Thursday, February 5, 2004; 10:15 AM

    The Food and Drug Administration announced Thursday it has approved the first drug for treatment of a rare type of cancer known as malignant pleural mesothelioma. The drug, pemetraxed disodium, is used in combination with cisplatin, the agency said.

    Sold under the trade name Alimta, the newly approved drug received priority review as an orphan drug, FDA said.

    Only about 2,000 new cases are diagnosed annually of this cancer, which occurs in the mesothelium, a membrane that covers and protects most of the internal organs of the body. This form of cancer is usually associated with a history of asbestos exposure.

    Mfg by Eli Lilly Inc.

    MaryAnn

    PET results.............

    in GENERAL

    Posted

    Angie,

    The pulmonary doctor is smart enough to know he isn't an oncologist.

    I understand your frustration, but don't read too much into it.

    It's a very good doctor who knows when to consult a doctor who knows more about a specialty.

    From my understanding, there's something about the hilar node involvement that changes the staging... I think.

    Wait to hear it from the onc.

    And don't borrow trouble.

    Prayers for your dad, and for your peace of mind...

    XOXOX

    MaryAnn

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