lulu07

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Viewing 15 posts - 1 through 15 (of 158 total)
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  • in reply to: Loving son looking for something other than chemo #89042
    lulu07
    Participant

    Hi Michael
    First of all i”am so sorry for the diagnosis of your Mom…..I’am a 6 year survivor of CC who knows what that means I’m still on maintenance chemo I have had 2 liver resections by Myron Schwartz …I understand she was not a candidate for surgery…we just lost someone who we went to high school with in a month and a half of diagnosis…he lived his life in the Keys and played his drums Im happy he lived his life the way he wanted too..but 58 years old is to young..I would like to give you the names of my Oncologists its not you’re usual chemo place your in a room with everyone else you share your story and every one talks we are all one! maybe I will see you and your Mom there my Dr. is Azriel Hirschfeld..he works with Dr Howard Bruckner and if you google him you will be impressed their address is 2330 Eastchester Road Bronx NY phone# is (718)732-4050 If you would like more info I will happily give you my e-mail or phone # I connected with my life saver on this website…long story..but I’m blessed he saw my intro…please reach out if I can help!

    in reply to: 5 Years Cancer Free this Month #85185
    lulu07
    Participant

    Lainey
    Wonderful news so happy for you!
    Nancy

    in reply to: FOLFOX pump #84615
    lulu07
    Participant

    Duke
    You are so right I never thought about the nibbling…LOL I disconnect my pump and the only medical waste that needs to be taken care of is the needle which goes into the port. I have a medical waste container that my RX plan Express scripts gave to me because I was injecting myself with neupogen. When its full I take it to my oncologist and they dispose of it for me…I have seen other patients bring in needles in tupperware containers though. The pump I bring back to my oncologist on my next visit so I have it at home for about a month but they are very good that way….We have a friend who lives in Lebanon about 3 miles off of 22 close to Railroad
    Ave. very nice town. I don’t know how long its been since you have been back but I would think things have changed but not that much there has been no major developments or construction really. Its a very nice area. Now Bridgewater on the other hand I don’t think there is room for anything else…
    Nancy

    in reply to: FOLFOX pump #84613
    lulu07
    Participant

    Duke
    I have been coming home with a pump for 5-fu on and off for the last 5 years. It really has not affected my sleep in fact the hushed noise the pump makes when it is counting down is a little comforting….I guess I’m just used to it. I have had no trouble with my port however, I will tell you to keep track of the tubing at all times as it can get caught on door knobs and just about anything which can lead to pulling of the tubing but it has never come out of my port. I do disconnect myself on the second day it is a very easy process. Oh yes if you have cats watch out for them! That tube hanging down and swinging is to much for them…my cat did slit my tubing which forced me to shut down my pump. Hope some of this was helpful good luck!
    Nancy

    in reply to: CC.org/vs/ FB pages #84405
    lulu07
    Participant

    Bing a patient with CC for almost 5 years…there is no place I would ever go and have not gone….
    Quite happy being here with all of the knowledge, compassionate and incredible people willing to share, who really get it…this website saved my life if it had no been here I would not have found my angel Marc who read my introduction and immediately got back to me with the name of a surgeon who might give me a chance for surgery as he had done for his mother and he did operate! That would not have happened had it not been for this website! My main point is that people really understand this disease here!
    Nancy

    in reply to: 5-year scan #84340
    lulu07
    Participant

    Randi….This is just the best news ever! I’m so happy for you and to almost be done with your oncologist must feel well almost normal..like we know what that feels like ha! Praying for you always…

    Nancy

    in reply to: Round 5 Chemo: Chemo 1 Julie 0 #83886
    lulu07
    Participant

    Iowa girl….I have been on both cistplatin and oxaliplatin….has your oncologist ever recommended Emend for nausea? My second round of oxaliplatin I did have some side effects red rash itching skin so they switched me to cistplatin…also I receive my chemo slower than usual…I have no idea if that works but I have never had nausea from either of the platins and I only receive the platins alone not along with any other chemo agents. Hope you can get this nausea out of the way sending best wishes.
    Nancy

    in reply to: My Husband My Hero #83122
    lulu07
    Participant

    Gramos…..So glad you posted on this website…it literally saved my life…deemed inoperable by a very reputable NYC hospital almost 5 years ago…I sought out a 2nd opinion and low and behold had not 1 but 2 resections! by Dr. Myron Schwartz at Mt. Sinai. (my hero) Had just a little bump March 2013 where I had a laparoscopy and the CC had traveled to my ovary so that and the fallopian tube were removed. I had a clear PET scan in January 2014 and a clear CT in May…I do receive chemotherapy once every 3 weeks I consider it maintenance…just not comfortable not doing anything…..My oncologists are Dr. Howard Bruckner and Dr. Azriel Hirschfeld….Bronx NY…they do things a little different and I’ve at least had great success with their treatments. They do work with several oncologists in FL although they are on the west coast and of course I can’t find their name and number right now! So I will leave you with Dr. Bruckners # and if you were interested Jackie at the front desk would be more than happy to give you their # Dr. Bruckners # is 718-732-4050…Lots of smart cookies on this website so I know you will be getting lots of good suggestions….That your husband was is good health prior to his diagnosis is a really good thing….keep fighting, keep hoping, things are changing all the time! Keeping you and your husband in my thoughts and prayers!
    Nancy

    lulu07
    Participant

    Makua

    Very happy to hear your son is feeling better….I had 2 liver resections with Dr. Myron Schwartz
    at Mt Sinai Hospital in NYC …I have e-mailed him and he has answered me in a very timely
    manner. I believe there are others who have e-mailed him with their questions and he has answered them back without making an appointment. His e-mail is myron.schwartz@mountsinai.org As is always said on here as many opinions you can get is good. You and your DIL are doing a wonderful job of advocating for your son. God Bless all of you and good luck.
    Nancy

    in reply to: Newbie here #82544
    lulu07
    Participant

    Wow this is awesome news,,,i to had 2 ok maybe 3 surgeries in the last 4 years…hope springs eternal definitely believe that….was told in 2009 I had 6 months to 1 year to live…. I don’t want to say live,,,find another option and i did
    looks like you were vey aggressive also…have to be..Prayers to you and your family because I also believe in miracles…they have happened…
    Nancy

    in reply to: Introduction #81221
    lulu07
    Participant

    Yes Iowa girl the best decision you did make was finding this website. I was like you and I’am not going to say I have been cancer free…I was diagnosed in Oct 09 with intrahepatic cc…met a wonderful man on this website who’s mother had the same type of CC and he very unselfiously recommended a Dr to me who was able to operate on me…God willing I’am fast forwarding 4 and a half years and yes i have had 3 surgeries but I’m here loving my family and life …You need to do what is right for you and you will know what it is…trust in yourself you know what is best for you!
    Nancy

    in reply to: Lainy – Cancer Free #80578
    lulu07
    Participant

    Absolutely terrific news!
    Nancy

    in reply to: Father “Diagnosed”- Don’t know where to start #78832
    lulu07
    Participant

    Hi Danielle…Welcome to the site…I joined here in 2009 after I was diagnosed at 51 I received an e mail from my initial introduction post from a beautiful young man whose mother had been diagnosed with the same cancer as mine…he gave me the name of a surgeon and Mt Sinai who deemed me operative when another well revered cancer center said no hope for surgery and yet here I’m 4 years later…just had a clean pet scan. I receive chemo from Dr. Howard Bruckner and Dr. Azriel Hirschfeld truly incredible oncologists…the number for their office is 718-732-4050..they are in the Bronx by the botanical gardens…they also have much experience with CC and pancreatic cancer…Have you had a 2nd opinion with a surgeon? Sometimes it can make all the difference…Best of luck to you and your Dad he is blessed to have you as a daughter and believe me we all need the support that our loved ones give. If you have any questions please don’t hesitate to
    e-mail me I believe my e-mail is under my profile.
    Nancy

    in reply to: im speechless #78426
    lulu07
    Participant

    Terrific news….here’s to surgery ( who every thought that would be a fantastic word) and a very speedy recovery!
    Nancy

    in reply to: Survival…Please tell us your latest milestone #64687
    lulu07
    Participant

    Betsy

    5 years! Congratulations and thanks so much for posting..it really gives so many hope…
    Nancy

Viewing 15 posts - 1 through 15 (of 158 total)