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mhutch1366

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Posts posted by mhutch1366

    Too much pain

    in GRIEF

    Posted

    Carleen,

    I know you hurt, hon, very deeply.

    Put one foot in front of the other, and again.... and try to remember to be kind to yourself. Be your own best friend; be gentle with yourself.

    We love you so much here, and we feel the pain through your words... and feel for you. I wish I could take some of the pain on myself, to spare you. But I can't.

    So give yourself a big gentle hug from me, and remember to keep putting one foot in front of the other, no matter how slowly you go. And be your own best friend, your own loyal advocate. Take the time to think about yourself, and do for yourself a bit now. You could use a little spoiling.

    And never ever forget -- we love you, Carleen. Let us help lighten your load however we can.

    XOXOXOXOXOXOX

    MaryAnn

    Question about antioxidants

    in GENERAL

    Posted

    Lori,

    I too was advised to take a break from antioxidants while on chemo, from beginning first to 3 weeks after last.

    Antioxidants are good things to have in your cells, but they have the opposite effect -- they essentially are working against the chemo.

    I wouldn't worry that you've done any great harm or bollixed the first chemo. Just quit taking the antioxidants until after you're done with chemo for a while, as chemo continues to work for a while.

    Remember these are over the counter "food supplements" and they do not have the potency of a drug, never mind chemo. Just why bother fighting yourself? When comes time to heal up, take the antioxidants and all the supplements your doctor okays.

    And relax. It's okay.

    MaryAnn

    Question for thoracotomy vets...

    in GENERAL

    Posted

    I had a full year of PT through NIH, and after two years I kind of stopped doing the exercises. The last couple of months I am really noticing the restrictions from the radiation induced fibrosis. I've been told that never stops: radiation is the gift that keeps on giving and giving.

    I need to start mine again. Additionally, I had a pulley that attached to the door to do passive range of motion on my arms.

    Now I have to have it on my back.

    Useful. Stick to it , it works.

    MaryAnn

    lasering for dysphagia

    in GENERAL

    Posted

    Check with Kasey, she had her esophagus "stretched" and I have heard of stents being put in too.

    There is a way, beside a feeding tube, to keep your dad in good nutritional shape.

    MaryAnn

    Carleen's Dear Keith

    in GRIEF

    Posted

    Awww. ((((((((((Carleen))))))))))))))

    I am so sorry, so very very sorry.

    May God hold you close and give you strength to get through this time of deep sorrow.

    XOXOXOX

    MaryAnn :cry:

    Diagnosis NSCLC Stage IIIA

    in NSCLC GROUP

    Posted

    Hi Lillian,

    I was diagnosed as IIIa, Pancoast Tumor.

    Three days before surgery they changed the entire protocol to implement somethng new, reported as an abstract presented in a conference, reporting on phase II clinical trials which were stopped at 12 months for immediate implementation. The journal article came out in Jan so the conference must have been in the late fall; I was diagnosed end of March/ beg of April 2000.

    If I had been diagnosed sooner I might not have had such a good outcome.

    Your dad is a wise man.

    I have been NED for almost 6 years (August).

    Good luck to you. and remember to keep putting one foot in front of the other.

    XOXOX

    MaryAnn

    cant find an answer

    in INTRODUCE YOURSELF!

    Posted

    Tom,

    I am 6 years out from removal of my Pancoast tumor, which leaves behind the Horner's syndrome (sweating on half the head and upper body, slight droop and inset to the eye, sluggish dialation of one eye) and I STILL SWEAT BY HALF only.

    No, I think it means that the damage the tumor in situ did is done, and you are going to sweat like that for a while at least. Some of my post surgical-rad-chemo symptoms have gone completely, and some have not, like the sweating.

    Don't get all in an uproar before you have your facts -- talk to the doctor.

    And remember -- it's wierd, but it's the new you!

    XOXOX

    MaryAnn

    Porta Cath.

    in NSCLC GROUP

    Posted

    I kept mine for 5 years.

    I used to have good veins, but now I still have trouble with the iv catheter for lines, as for CT contrast. Not fun.

    The 'port really spoiled me.

    I'd get another one in a New York minute if I needed chemo again.

    XOXOXOX

    MaryAnn

    very nervous today

    in NSCLC GROUP

    Posted

    I feel the premeds saved me from real discomfort. I know I had zofran for nausea in addition to the pills, plus lorazepam for anxiety and I think benadryl (?). Once after the first dose I told the oncologist about terrible pain in the ears, he prescribed ethyol, which made it much easier on my ears. I believe they also gave me 2L fluid IV before starting the cisplatin, that's why those days were so long. I was on a monday-monday sched. Monday I got cisplatin and VP16/etoposide, tues-fri VP 16 alone, Mon I got half dose cisplatin plus etoposide/VP 16. That was end of week1/beg week 2. I got next round on day 29 -- Monday. I only had a rough time at all in the morning after the first whammy -- I had to not gag brushing my teeth, then I was okay.

    Good luck to you.

    XOXOX

    MaryAnn

    radiation burn

    in NSCLC GROUP

    Posted

    The radiation oncology nurse gave me some sterile gel pads, like jello bandaids, that were to be stored in the refrigerator, and these cool moist gel pads laid over the burns brought tremendous relief.

    My burns (25 days) got pretty bad since I had been sleeping on a heating pad (a big no no) which caused the skin to break down some. That made it easier for the skin to burn. So I had to do the domesboro salt (sterile) soaks with sterile gauze after it became open, and then follow with the gel, leaving those on as long as they would stay.

    This too, passed.

    XOXOXOX

    MaryAnn

    Head garments

    in GENERAL

    Posted

    They ARE seamless, made from either terry or velour stretchy like material. I loved mine for keeping my head warm in winter, and to wear at night to sleep, and since half my scalp sweated profusely (only half) I liked them in the summer.

    Good stuff. They have cute hats and scarves with bangs even, for those that are specially detail conscious.

    The TLC catalog I believe is the name of the catalog, and you can request one by calling the ACS 800 number.

    I passed mine on to someone else, after I was finished.

    I had my hair cut very short knowing it was going to come out, and then got a buzz cut when it did start coming out. Somehow I managed to avoid itchy scalp problems altogether.

    The softer the material, the better it feels on your head.

    After I got somewhat shaggy and disreputable I went with plain old bandanas. That worked for post-chemo.

    XOXOX

    MaryAnn

    NSCLC Stage IV - Age 38

    in INTRODUCE YOURSELF!

    Posted

    Hi Anna,

    Welcome. I'm glad you found us, makes one feel so much less alone.

    I was diagnosed IIIB at age 43 with a 4 year old and a 10 year old, and newly divorced. Yes, learning to live after, "the new normal", can be quite a feat. I have been NED for 6 years now after having a 13# tumor and one lobe of left lung removed, along with most of my chest wall on left side -- the tumor ate it. Now I have goretex.

    Where are you in MD? I am in Montgomery county, near I270/I370 and 495. PM me if you want to talk.

    Have faith -- you've made it through your treatments so far, looking good, so take baby steps... one at a time.

    XOXOXOX

    MaryAnn

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