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Dollfinn

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Posts posted by Dollfinn

    New Avastin side-effects?

    in LC SURVIVORS

    Posted

    Hi All~

    I had neuropathy, in my hands and feet last Oct. scary, like walking on hot rocks all the time

    "Ned" shared he wore big fluffy slippers, and that helped. My DR. (PMD) put me on Lyrica, worse then neuropathy!! PS by Jan. , 4 mo. after chemo& radiation the neuropathy went away

    .

    :lol: This "round" my onc @ MSKCC,NYC said he "could" put me on avastin. I researched it a bit and found infact it is not a chemo drug at all. It's action is , it is very effective in cutting off blood supplies to tumors, which makes them less likely to grow. I am on it now, I have only had 2 doses, and my major complaint is laryngitis, but some say that may be the taxol?

    Hoping it's not my "new normal"!!!

    Mary

    mom has cancer

    in INTRODUCE YOURSELF!

    Posted

    Sue~

    I'm glad you found us. Perhaps your Mom does not say much after an appt. because onc tells her less then they tell you? She needs to know she's not alone, there's a gazillion of us out there and fighting and winning!

    The did you, do you smoke question is worse then the spanish inquasition! Ugghhhh I used to hate that question. Were not the sexy pink cancer. Then again 15 yrs ago, breast cancer was a maiming humiliation for all women and "not talked about".

    Were here all the time and were talking about it and were winning! Keep us updated. Your doing a good job. Mary

    im new

    in INTRODUCE YOURSELF!

    Posted

    Mary~

    I can tell you have that fight spirit! Hea, you found this site. In my experience someone here has always experienced a senerio that was new to me, and helped me over the bumps. Please keep us posted . You and your family are in my prayers. Mary

    Thoughts about life in general

    in LC SURVIVORS

    Posted

    Sarah~

    I have had to plan my funeral not once but twice! One plan included a big picture screen outside the funeral home ( like the ones they have at concerts) So people could ogle, say they were there, and not bother my family!

    I am a nurse of 33yrs. so I have the true inside scoop. Most final efforts are made for the caregivers peace of mind. So as a patient I feel I can at least meet them 1/2 way, so they dont feel like crap after I croak. I am the morphine queen when a person gets to the start of "their Journey" that is in keeping with the dignity issue. If you werent a moaner or groaner you whole life long, why pick up a bad habit at this point of your life?

    And the noisy compressor, that forces air into lungs that are sick and can not accept the oxygen. I have made it clear, turn the darn thing off! It's noisy, it gives off heat, and I will be able to hear you better with out the noise.

    Celebration of life, is a memorial that has been around for some time. I thought about a DJ but that might be pushing it. Big tent party to celebrate the times when life was one big party. Celebrate being a part of a great circle of people!

    Yikes ....does that make me nuts?

    Better then being a fruit cake.I'll leave when I'm good and ready, if exhaustion doesn't get me first! Mary

    Kind of an update

    in MEMBER UPDATES

    Posted

    Sandra~

    Pain suks. Bottom line. I am sure I am not alone when I say, the esophageal and bone pain I had last year, was only relieved by Roxanol. P.S I was very reluctant, then again, when the pain left I regained my self and had less fear. I have not , nor do I desire to have a dose of roxanol in ? 6-8 months. My body weened itself. Be good to yourself, I'm sending positive energy your way, and 1st and foremost I hope you can lick the pain. Keep us posted.

    Mary

    Round 2 Stage IIIB

    in MEMBER UPDATES

    Posted

    After 2 great scans, 10/07 and 1/08, I was free to be me! I went back to work and the world was looking a little brighter. Scan 5/08, a disaster! My cancer was back with a vengeance. MSKCC told me I had exhausted all available TX. We cried, I asked my onc "are you going to dump me"? He shot back, "I am a Dr with ethics!!!!" PS much research done by my husband Jerry a week later we were in Cancer Camp ( Cancer Treatment Centers of America, Philly) After 1 (one ) Tx carbo, taxol and avastin my CEA went from 395 to 252!! thats down about 35%, and MSKCC wanted to put me, ME on hospice!

    Next Tx 8/08. I'm bald and my head itches but I'll take it.

    It says my profile is to long, it will take a month of Sundays to revise that but hea, now I know I have the time :). And all of you,

    Mary

    to Find New Cancer Center

    in NSCLC GROUP

    Posted

    Thanks everyone! We got approved for Cancer Center of America ,Philipephlia,PA today! They will make my appt. tomorrow. MSKCC did offer me 3 Avastin infusions, but no preventive care i/e bone scan or brain MRI. I said do I have to hit a small child driving before you check for brain mets? Judy, I will only travel 2 or so hrs. and pack lots of "uniforms"!! and hats!

    I'll keep you posted. Looking for Philly friends, Mary

    to Find New Cancer Center

    in NSCLC GROUP

    Posted

    Hello all. MSKCC in NYC basically blew me off today :? They said there is no cure for me. My scans showed strongly stable for the last 6 mo. now my SUV is 10, I started at 9. I feel great. I have a lot of fight left in me. My insurance will only cover "Centers of Excellence" and I said, Sloan is one of them? I'm in trouble. They approve FOX/CHASE IN PHILY; DANA FARBER IN BOSTON or JOHNS HOPKINS IN BALTIMORE. Any input would be greatly appreciated. Let's kick cancers arse together. Thanks everyone, Mary

    Staying positive

    in LC SURVIVORS

    Posted

    Go Kathy!

    I hear a lot of Dr. switching. I'd like to strike my Onc. with a switch! He said , there is NO CURE! the nerve. I see my PMD today. It looks like avastin will be my next step, 3 rounds? I shut him off at there is no cure, what an arse. I'll post after friday when I get the whole picture. I may just switch Dr's just so he's not my Doc when I'm here next year! Mary

    what happens after chemo & radiation?

    in GENERAL

    Posted

    J~

    I'm pretty much where your Mom is. In fact people will tell you they have not seen me on line. After my 2nd clear CT scan, I needed to get back to me. I took a hall pass from here.My Tx is out of MSKCC they are a protocol hospital, so I step a little to the left and a little to the right i/e wine and barley each day! I am 9 mo. out of chemoradiation and they are just now doing a PET to determine if > consolidation is tumor or Ca. I feel great. I agree last Oct, Nov I would have"sold the ranch" and paid cash for any scan I could get. Bottom line, I went back to work and all is well, but it is tuff to finish Tx. Best to you and your Mom. Mary

    NEWSFLASH

    in HOPE

    Posted

    Kasey~

    Just for fun, I look at my "avatar" and think about the people here that say, "Wow, I never knew you werent a blonde"!! and glad to have hair any color! My son posted my 1st pic and I dont expect him back to town till the summer. I wonder what color my hair will be then? My spirit as always remains strong! Mary

    One kickin' party

    in GRIEF

    Posted

    I love what you were able to do for your Mom! A celebration of life, sounds grand. I seceretly pull out pictures of great days gone by, like Buffett at Jones Beach and smile. What a great tribute to your Mom, Im sure shes smiling down on you. Mary

    Pulmonary Function Tests

    in SCLC GROUP

    Posted

    Crispy~

    I often thought that funny. To date since diagnosis, I have not had a PFT. I'm on spiriva, and my last CT scan said consolidation most probbaly from radiation, but Im doing fine. I cant climb a Mt. then again, I couldnt last year either! Keep us posted. Mary

    Hi, I'm new here

    in GRIEF

    Posted

    I am glad you found us. I'm so sorry for your loss, and I hope you can find some sort of comfort here, during this terrible time. Sending prayers for peace and understanding. Mary

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