Calling all TNs

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    gillyone,

    Thank You!Wink

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited February 2012

    yeah....lovelyface.....some good news is needed here and now.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2012

    Hi Ladies

    Teka - please don't be offended about the pic's or the posts.  I cannot understand why as a nurse you would be shocked at either.  The pic's were so beautful and without those scars Inmate might not be with us. Look at her face as well and see the beauty there.  So what to a few fancy swear words and thats all they are words that maybe at the moment even God would understand.  It represents so many heartfelt feelings.  Most of us wouldn't normally say half the things on here during the normal course of the day but cancer makes you like that,  and you feel like saying (all sorts of things) I know I do and I don't give a stuff it it offends cause it makes me feel better abd gets me through the moment.  

    Gillyone - No I come from New Zealand, a beautiful town called Lake Taupo with all her majestic mountains and beautiful big blue lake. When you look at those everyday you don't want to leave this world. One day last year in Christchurch in the South Island (I live in the North Island) nearly 200 people went to work, shopping or their usual daily happenings and they had a major earthquake.  All those peole died so tragically. You can imagine the devastation there was.  What I am trying to say is nobody knows what the future will bring so live for today and if a little blaspheming is all it takes then go have a bloody good swear and enjoy it,  everyone of the ladies on here would understand that.  On a lighter note I read your post on the contrast CT scan which I am to have next Tuesday.  You only live 10 mins from the hospital and I live at least one hour away so, OMG, perhaps I should get some nappies!!. 

    Did anyone have the flushing of the face and funny taste in the mouth that they say you could get? AND of course I have to get this one in,  did anyone get sick or feel nauseous from the liquid you have to force down before the CT scan.

    Lovelyface - I am so glad your scan was benign.  Good one. What a beautiful day.

    Today I got the results of my bone scan and it was all clear. Yay. Now for a better nights sleep before the next hurdle comes.    

    Annie        

       

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited February 2012

    Hi Annie

    My mom and sister/brother live in Auckland New Zealand. I have been there a few times.  Lovely place.  Nice to meet someone from New Zealand.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2012

    Lovelyface that is so wonderful.  I feel like I know somebody on the forum now. Have you ever been to Lake Taupo on one of your visits to NZ.  We are about 3½ to four hours from Auckland but go there fairly often.  Whereabouts does your family  live in Auckland.  I am just so chuffed. Annie xx  

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2012

    Lovelyface I have just read your post again. This cancer plays with our bodies and our minds. Even when we get marvellous news we still doubt some of the results almost as if we don't believe the doc's.  Will we always be like this I wonder.  Don't be sad that your great news will upset anyone. The ladies on this forum will be absolutely,  genuinly pleased for you.  Sleep well tonight.  Annie   

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  • Gabbi42
    Gabbi42 Member Posts: 16
    edited February 2012

    Hi Annie

     I am from New Plymouth . I have been living in Malaysia for the last three and half years and I coming back home on Monday! I am looking forward to being back with my family again. I start chemo beginning of March

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  • laurajane
    laurajane Member Posts: 321
    edited February 2012

    Good morning ladies!



    Lovelyface- I have this huge smile from ear to ear. I am beyond elated about your good news. What a wonderful way to wake up, make me coffee and read your lovely post you lovely lady. So so very happy!



    Cocker spaniel- what a tragedy. You are correct we never know what each day will bring unless we decide it's going to be a wonderful day. My favorite saying " Life is good unless we decide to make it great!".



    I had a great day yesterday. I went on a 4 hr shopping spree with a dear friend of mine. We had so much fun. Talk about shop till you drop. LOL I then went to dinner with my son and then to a movie with a friend of mine. I sure don't recommend the movie. I didn't realize what it was about I just knew I really enjoy looking at that gorgeous man, George Clooney, so when my friend suggested the "Descendents", I went. Don't see this movie unless you really want to be depressed. Awful! But, it was nice seeing my friend and the popcorn was good.

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited February 2012

    Lovelyface - Congrats on the good news!!!  We always need some good news and in your post you said "I don't think there are any words to describe this anxiety"  The bittersweet beauty of this thread is you don't need to describe your anxiety to anyone of us.  I'm pretty sure every single one of us knows exactly how paralyzing it can be but we're all right there with you.  I'm just so thrilled you got good news and you can relax for a bit.

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2012

    Laurajane:  So sorry I missed you but so happpy you had an amazing day! 

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2012

    UPDATE:  So, Since this (Callling all TN's) has been my home base for 3 three years I don't have the energy to start over nor do I have the desire.  I hope that is okay with you!

    They say the bone cancer is BC but now 80% + Estrogen + (????) so I started tamox last night.

    The concern is that my liver is mostly filled with cancer.

    The surgery helped with back pain but I am in a brace an must relearn to walk. 

    They want me to go home with Hospice, give me 6 months, want me to to have assisted nurse care and PT at home.

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  • TifJ
    TifJ Member Posts: 1,568
    edited February 2012

    MBJ- I am so sorry to hear this. I am curious though, why do they not want to do anything other than Tamoxifen to help you? There is a whole arsenal of chemos out there that might work. If this is your decision though, of course I support you 100%. I guess I am a little selfish and want you to be here for a long, long time.

    Are you home now?

    BIG HUG!!

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited February 2012

    LovelyFace, Great news!

    LauraJane, You need lots of soft pillows all around you.

    Karen,  Welcome.

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited February 2012

    Here is something to ponder the next time you go through airport screening: Many of the full body screening machines in airports use ionizing radiation. http://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/SecuritySystems/ucm227201.htm

    Ionizing radiation is linked with DNA damage, and DNA damage is linked with breast cancer. http://www.medicalnewstoday.com/releases/242039.php " expression of the Abraxas mutation caused hypersensitivity to ionizing radiation - a cause of DNA damage -"

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168783/

    Personally, I opt out of screening and go through the obnoxious pat-down.

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2012

    Tifj:  I'm not strong enough for chemo.  Right now it's about strengthening bones, (hopefully walking again - my plan - and gathering strength to fight).  I feel great but I am in a brace and in bed.

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  • christina1961
    christina1961 Member Posts: 736
    edited February 2012

    Annie, I didn't have flushing and the contrast stuff was not very good, but I didn't get nauseous from it.  I hope you have great, benign results!

    Gabbi, Welcome!

    Lovelyface, I am so glad you had good results!  I have found that my anxiety takes a few days to settle down after getting the results back.  I suffer from terrible anxiety over scans - I believe it was Tif that said you don't have to have words to explain the anxiety here on this board.

    MBJ, I'm so sorry for the news and I hope the tamoxifen knocks everything back to the curb where maybe they can even do chemo later.  80% is really high so hopefully it will have a good effect on it quickly.

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  • lrr4993
    lrr4993 Member Posts: 937
    edited February 2012

    MJB - I rarely post in this thread, but still read.  I am sorry to hear about your recurrance, but glad to hear you say you are feeling good.  I am also glad to see you posting again.  I always thought you had such interesting insight into things and are wealth of information.

    It is interesting about your change in receptors.  When I was diagnosed my onco said something about not knowing when along the line it changed to negative.  I never asked any follow up on this, but have since wondered if TNs usually start as positives but somehow change to negatives.  And if so, why we are not given the drugs given to the positives as a preventative measure.  I am going to have to ask about this when I next see her.

    Did you have a PET scan or anything similar at diagnosis?  If not, I find myself wondering if you might have had spread before it changed to TN in the breast (assuming I am understanding my onco's comment correctly)?

    If you don't want to answer these questions, no problem!  I am just curious about how this works.  Not that this is really going to provide a lot of answers . . . :)

    I hope those meds do wonders for you and that you continue to feel good!

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited February 2012

    Everyone - I have lots to respond to as there are many lovely posts this morning, but I will try to keep it short.  First, thanks so much everyone for your kind messages at my good news.  I am so very relieved and wish that each and everyone of you have happy news like this all the time.

    MBJ - I am so very sorry to hear what you are saying, but I am thrilled that you are starting tamox. One lady in our support group had mets to her spine, once she started taking aridimex, she is really doing very well, very very well, all her lesions have disappeared.  I even feel there may be a chance of a "cure".  The tamox might even take it all out of your liver.  Our Suze chose hospice herself, I think, but I have a feeling she is buying hospice time to get back to health and I do feel she can do it.

    Annie - My family in New Zealand lives in a city called Manukau in Auckland. They moved to New Zealand from Fiji, where I was born and spent my childhood and young adulthood.  I have been to NZ 3 times, once to my dad's funeral. My mom is 81, healthy and lives with my sister. NZ is like my second home. Unfortunately, I haven't been to Lake Taupo, which sounds like a beautiful place. Mostly, when I go there we have so many family reunions that there is no time for sightseeing. My extended families live there as well. Many Indians from Fiji have moved to New Zealand. When I lived in Fiji, many of my teachers, lecturers were New Zealanders and also we took NZ examinations at school, so I always feel that I am part New Zealander.  I am happy we have connected here.

    mitymuffin - Talk about ionizing radiation, I have so much to add here.  Did you know that many of our scans, especially CT scans, xrays, mammograms all produce ionizing radiation?  It is a scientific fact that ionizing radiation does cause "breast" cancer.   Here is a great link:  http://envirocancer.cornell.edu/factsheet/physical/fs52.radiation.cfm.   Then why are they continuing to give us mammos.  Lately and even now, I am very highly concerned about the fact that recently they gave me a total of 8 images of my right breast on the mammo, whereas the recommendation is for only 2.  I will take this up with the Rad dept. and make sure this is emphasized in a report kept in my file.  In case of a future cancer, I will point to this.  The Tech. had made a mistake and took 6 images, 3 of which were the wrong ones.  I am deeply concerned about this.  I suggest to everyone that they make careful decisions about whether a scan is really necessary, depending on their invidual case.  Ask for an MRI - many insurance companies don't like to authorize an MRI, instead they give you CT scans.  I am trying my very best to get away from scans.  In 2008 I had lots of pelvic scans and sometimes I wonder if that might have anything to do with my BC.  I had the Rad dept. print me a page which lists all the various scans I have had one since 1999.  See it at a glance how much radiation you have had over the years.

    LJ - I can see your beautiful smile from here.  I am so glad you are having so much fun, which I hope continues forever.

    Everyone - have a great day filled with beautiful spring-like weather and lots of good news.

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  • tracie23
    tracie23 Member Posts: 598
    edited February 2012

    I have been off this site for some time , I was just reading through the thread and MBJ I am so sorry about what is going on.... My heart sank as I read each post. I knew you were in the hospital but I didn't know the severity of the problems. I will put you in my prayers and hand it to God, I also hope the meds do wonders for you and that you continue to feel good.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited February 2012

    MJB-Love you girl!

    Get stronger and fight. Praying this ER+ gives you the ability to be NED for a long time. If there is anything I can do please let me know. Send me a personal PM if you need to SCREAM. I will call and listen. I am so bent out shape about your situation. I know we can't question GOD but................................................!!!

    TifJ-we are too much alike. We have been in our house 2 years and 2 months. And it is pretty much like the builders made it. I am making it my mission this summer to spruce the inside and outside up this year.

    Take care ladies!! Weather here is nice and I plan on taking advantage of it.

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  • laurajane
    laurajane Member Posts: 321
    edited February 2012

    MBJ- you didn't miss me, I didn't make it down to Louisville.There is absolutely no way I would come all the way down there and not see you. That would be my priority. I still hope to soon. I just stayed around here. I also wanted to remind you that a year ago November, when my BS, onc and rad doc gave me 2-3 months to live, I believe you, sweet women told me not to believe them stay strong and ignore anyone that gave me an expiration date. Now I am telling you the same thing. stay strong and prove them wrong. We are all here fighting with you. I'm so saddened that you are in so much pain and I hope (hope is such a petty word but I'm not sure what to use in its place) you get stronger and beat this once again. We love you!



    I'm looking forward to having my daughter pick me up and take me out to their farm for the day. I'm excited to see all of their new gardens they've installed. They are flower and veggie growers and sell at the farmers market. I am so proud of them. Bonus I get to spend the day with my grandson? Yippee! I just couldn't help myself and bought them lots of surprises yesterday. She is cooking one of my favorite dishes, chicken curry. Yum! By the way, after being on the fence for a couple of weeks,

    I have finally made up my mind to start the Metformin on Monday. I'll be anxious to let all of you hear the good news that it is working!

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2012

    Ihad every single test!

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2012

    Laurajane:  I have NOT given up hope and I am no in pain with a small amount of drugs and the brace.  PT went really well doing LOTS of bed strengthening excercises.  Finanally meds feel balanced which really helps.  Big hugs and good luck with the new drugs.

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited February 2012

    Laurajane - Very happy to hear your starting the Metformin.  Have fun with your grandson! 

    MBJ - I'm so sorry your going thru this crap but I do believe that you will get stronger and the Tamox will do wonders for you.  Very glad to hear your not in pain.   

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2012

    MBJ - so glad to hear from you but sad at the same time you are going through this. I'm sending you healing vibes!!

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  • Babs37
    Babs37 Member Posts: 455
    edited February 2012

    MBJ- So good to here from you! Whishing you all the strenght you need to fight this.

    LJ- Good for you! I don't know if you saw it but luvRVing answered your post this morning on the METFORMIN AND BREAST CANCER thread. Have a great time with your family today.

    Thinking of you Susan...........xx

    Lovelyface- Yeah!!!!!! So happy for B9 results!

    Big Hugs to everyone!

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited February 2012

    Babs - thanks, I had no idea there was a metformin and BC thread.  I plan to talk to my Onc. about metformin.  Somehow I feel I could benefit from it.

    LJ - I can't wait to hear how well you are going to do on Metformin......I have a feeling it will do wonders, as they call it a "wonder" drug.  I am so happy we have this as an option now.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2012

    MBJ: 

    So happy to see you posting and even happier to hear your indomnitable spirit right through your posts. You sound like yourself again, and that is very comforting to us. This progression sucks, bug time, and I truly hate that you are going through this, but I do believe your silver lining in this rotten cloud is that it's switched from negative to positive.  Very rarely do you hear of negative switching to positive (although I know it happens), as you hear more of the positive switching to negative.  This opens so very many other doors to you that would not have been there as a 3N.  Never never think that once you begin with the hospice care that you can't get out.  You will just get tremendously wondrous care while you are treated by them - and they are absolute magicians with meds.   Stay strong, sweet sister - we've missed you dearly.

    LJ:  re the metformin.  I read somewhere, maybe even on this thread (???) that if you start the metformin at half dose for a week or two, it helps eliminate any tummy problems with it.  I have absolutely zilch info re this, but just wanted to pass it on.  Hopefully, that won't be a problem for your tummy.

    LovelyFace -  Wonderful news - I am so very happy that you can be happy!

    Gabbi:  So extremely sad that you have had to join us, and am glad that you are "home."  When you begin your chemo in March, you will not begin it alone, we will all be right there with you - promise.

    Annie:  Yes, I had the flushed face during chemo.  Probably the only time I had color in my face without the need of makeup!

    Sending you all, light, peace and love,

    Linda 

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  • christina1961
    christina1961 Member Posts: 736
    edited February 2012

    Lisa, From what I've learned reading endless journal articles the past year, cancer can mutate in response to treatment.  My onc believes mine mutated  after TAC from 1% ER receptors to the 5-10% ER receptors they found at surgery. 

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  • TifJ
    TifJ Member Posts: 1,568
    edited February 2012

    Lovelyface- Great to hear some good news!!

    MBJ- I am glad you are feeling good and not giving up hope! You are a much needed presence on this board!

    LJ- I am anxious too to see how the Metformin does. My onc gave me an absolute NO. maybe I should discuss it with my gyn when I see him in April

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