Calling all TNs

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  • aeryno
    aeryno Member Posts: 59
    edited August 2013

    Julie - good luck.  Will be sending good vibes and wishing you the best!Innocent

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  • lizlori
    lizlori Member Posts: 148
    edited August 2013

    Grace-

    How are you doing?  Wow that is cool, I hope with both do well with our journey, and our crazy ride gets easier.   My sister who I am really close to is Grace. She has been my main source of comfort.   My chemo went well, slept most of the afternoon, sooo tired. Going to make a pie here shortly.  

    Debra-

    Thanks for posting the site....we are all affected by Julies news....and Julie, we don't know each other, but please know you are in my heart and thoughts......thanks again for being so kind to us and sharing your news, and allowing us to be a part of your journey.Lori

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  • LNBCA
    LNBCA Member Posts: 49
    edited August 2013

    Lauren, did you ever have BRCA testing done?

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    My awesome friend from middle school and high school set up a blog for me to post updates cause it's getting hard posting texts, emails, Facebook, ...so wanted one central place to leave my updates, please visit and leave me an encouraging or funny message, I need all the laughter I can get right now. www.caringbridge.org/visit/juliekim

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Great news! My tumors in my brain r all so small that 4wks of radiation will kill them all, so no need for more radiation according to my radiation oncologist!

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  • slowloris
    slowloris Member Posts: 128
    edited August 2013

    Julie, I'm so sorry to hear of your mets. Try to stay strong.. It sounds like you are already a strong woman.

    Tomorrow I am scheduled for a PET scan to seee if the Xeloda has stoppped any progression of my recurrence. Anxiety  is starting to set in. Have to eat only protein for the scan, so the family went out for a seafood dinner...I ate 2 lobster tails!!!  I thought  "this is either a celebratory dinner, or my "last supper". If the PET is good, bs wants to do major surgery again, and bc of the amount of tissue I may have removed, implants won't be an option, so a flap surgery may be what I get if I decide to continue with recon.

    Of course, if the news is not so great, I know I can count on my sisters here to help me get through it. You are alll a great group of support, and the humor really makes my day.

    fingers crossed, and prayers for a good scan.

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  • graceforme
    graceforme Member Posts: 70
    edited August 2013

    Lori1020-I'm glad your chemo went well. I started radiation yesterday. Two down, 31 to go.



    Julie-Good news about needing less radiation than originally expected.



    Slowloris-2 lobsters? Yummy! Hoping your anxiety melts away and that your scan results are a reason to celebrate.

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  • slowloris
    slowloris Member Posts: 128
    edited August 2013

    graceforme.... Just the tails, and they weren't that big. but still YUMMY!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited August 2013

    Julie, wonderful to hear that you received some good news!  We will follow your progress and post funny messages for you there!  SlowLoris, you too ... we will try to be funny for you as well, and your meal sounded scrumptious! :o) Sending you great vibes for excellent results tomorrow!

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  • steelerfan
    steelerfan Member Posts: 8
    edited August 2013

    Hey Julie! I was treated as triple negative because HER2 was equivocal. Tomorrow I have brain mri. I've been falling or losing my balance quite often and severe pressure headaches. If you have any words of encouragement or wisdom I'll really appreciate it! Glad to hear about your prognosis! Take Care!

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  • encyclias
    encyclias Member Posts: 302
    edited August 2013

    steelerfan, I am treated as a TN also because my HER2 was equivocal.

    Carol

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Slowloris,  sounds like you ate like a queen.  Don't worry too much, will be praying for you and my other sisters here who are having a hard time.  Hope u get some great news soon.  Like u said at least u have all of us to support u when u need it most, we're all here for u, go Loris go!  I'm having my 2nd brain radiation today, in great spirits cause I know that it will kill all those suckers! 

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Steelerfan, I had headaches, vomiting, vision issues, memory issues (i thought were from chemo brain), but didn't suspect a thing.  My headache i thought was due to my bad cough i had for over a month and also i hit my head on the van door, so..., anyways vision I thought maybe cause i was tired.  All these little things that we don't really think about need to be addressed, don't ignore changes in your body, run and tell your drs ASAP.  Don't end up like me!  I really hope there is nothing going on in your brain, but if there is have hope that it is still early enough to manage the issue at hand, remember the sooner u get tested, treated u have a higher chance for survival and I'm telling u right now, we will all survive and 10, 20, 30, 40, 50, 60, 70yrs from now we'll look back at these moments and say, wow, can't believe we made it, bu we did!  People live to over 100yrs old now a days, who says we can't!  It's all in our minds, stay hopeful and whatever happens, happens, but I'll pray for the best.  God only gives us what we can handle, guess what, we got this!

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Thanks all!  Going in for my second radiation treatment and in high spirits cause it's going to kill all those suckers!

    Thanks all!  Going in for my second radiation treatment and in high spirits cause it's going to kill all those suckers!

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  • lizlori
    lizlori Member Posts: 148
    edited August 2013

    SlowLoris...Im thinking about you  my friend...sending you a strong hug.....

    Julie...doin the happy dance here in wisconsin over the good news about brain tumors being small....you need some ecouraging news....

    boy its hot hot hot here.....picked some beets and cherrie tomatoes... later gators

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  • lizlori
    lizlori Member Posts: 148
    edited August 2013

    Grace....hope radiation goes well....They took all all tissue they could with clean margins, so I didn't need radiation.....seems like it all goes fast doesn't it?  I can't believe six months of chemo is done and over with....

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  • LRM216
    LRM216 Member Posts: 2,115
    edited August 2013

    Julie:

    I don't post often, but I read the posts very often.  Just want you to know that prayers and all good wishes for nothing but the best outcome from you current radiation treatments.  You are in my thoughts.

    Linda

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  • OBXK
    OBXK Member Posts: 791
    edited August 2013

    Slowloris - wishing you all the best.



    Julie - glad you had some good news!



    Tomorrow I have scans - sure hope I don't poop my pants! I hate that barium, and I live 40 minutes away. Depends at the ready!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited August 2013

    Steelerfan, I sent you a PM.  I also read your post, about how 2 weeks before dx, the hand reaching down ... wow, that gave me goose gumps.  That's amazing, and I truly love your doctor's protocol - start with prayer.  Wonderful!

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  • bexH
    bexH Member Posts: 49
    edited August 2013

    Julie: I'm so sorry sweetie. But, way to keep fighting I'm so proud of you. I'll pray for gods healing hand to come to you.



    Lauren15: go get it checked out please. I know it's scary as all get out. But, better now than later. We know how aggressive TN can be in our bodies. I'm facing my fears and so can you. If you really want to know your chance of recurrence you should ask your Onco. They aren't going to volunteer that info if they get the impression you're overwhelmed and can't handle it. My chance of recurrence is 1 in 5. If I hadn't done chemo and rads, it would have been 2 in 5. You need to ask your doc. 1 in 5 sucks as far as I'm concerned but it beats 2 in 5. (((Hugs)))



    Yes, I'm up late cause I'm scared and worried. I get my biopsy tomorrow. I went and saw my onco last Friday and saw the surgeon yesterday. Biopsy is the morning and then waiting until Tuesday for the results. I despise waiting. And, I get to have even more days where I wasn't allowed to pick up my almost three year old during his lifetime. I guess I should be glad he's a daddy's boy. ;)

    By the way sisters , what's the longest anyone's had their periods for? I've set a new personal record. Ugh! I was hoping my chemo pause was permanent. That means I'll have to go through menopause again later. Blech!

    Praying for God's healing for all of us sisters. In the meantime, God has given us the gift of each other.



    Becky

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  • monisch
    monisch Member Posts: 57
    edited August 2013

    Hey Everyone,

    I havent been here in sooooo long. Guess it meant im doing fine.  I have a question to all of you .  Has anyone had the problem of falling down for no reason ??  I've fallen 3x so far, always to the left, for no absolute reason. No dizziness, no numbness in the legs.  I've been to a neurologist who did just the simple everyday check, since she can't see inside of my head, she has referred me to a radiologist to do a MRT on my head.  Im kinda nervous on this..... not only because i've never had an MRT but because i am scared that I may have gotten brain mets.  Can anyone realte to this ???  by the way, I'm in my 3rd year  ( after the Operation ).

    Would appreciate any info  or tips....

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Hello my sisters, wanted to update u on my progress.  Today is my 3rd brain radiation, still in high spirits, got some awesome news yesterday.  Onc and surgeon both feel i should start chemo ASAP since I have tumors in lungs, bones, appendix, just about everywhere. Decided to start next week, so wish me luck.  I will be having both at the same time, I'm sure I can handle it.  I did it once, shoot I could do it again.  As long as I can kill all those suckers and live a happy/healthy rest of life with my girls, family, I don't care how difficult this journey will be.  I'm all up for it.  I could still use words of encouragement, prayers, and your thoughts, so keep them coming!!

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  • Flautalee
    Flautalee Member Posts: 118
    edited August 2013
    Spoiler Alert ~~ long post! Hello friends I guess that I'm back here on the TN board because I am scared. A woman with whom my daughter works now has BC (her dr thinks) in her lungs. Like me, she had a new breast cancer about 2 years ago, after BC about 10 years before. I am not sure if she had a lumpectomy or mastectomy the first time, but the second time, she had a mastectomy with chemo, as I did. Both of my BC's were in the same breast as the first time. That's supposed to be 1/32,000 mastectomies. I also went through radiation my second time ~ I am not sure about her. This whole situation makes me sad and angry that this might happen to me~~that I might develop mets. I feel ditto for my 31 year old daughter and 4 of her cousins (5 girl cousins of 7) who has had 3 close family members with BC, and 2 of them die from mets. After my mastectomy in 2000, I had scans at one year, and every other year after that, and my MO this time is not doing this. But I will be having a Breast MRI in November, ordered by my breast surgeon.

    Dr Elissa Santoro (Livingston, NJ) is an amazing surgeon and person. When I asked her if I possibly be cured in June 2011, she responded, "Lee, I really don't like the word "cure." You were in remission before and we will put you back into remission again."
    PS I never figured out how to put the facts of both BC into my profile. Maybe it's easier this time. LOL!
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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    Lee, it looks like your 2011 bc was also caught early.  Try not to think of the m thing ..... I have heard of women who, after a recurrence or after a 2nd bc, lived a full long life, and never had to deal with it again - sometimes a daughter will tell us of her mom or mom's friend that went on to live her full life.  

    Bex, what is the biopsy for?  A breast lump? We are ALL sending our prayers for you!!!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited August 2013

    Julie, you're amazing with just the way you are able to update us, and post us not only of your status, but also give us tips on how to help ourselves.  You are so selfless.  I also think you are one strong chic!  I know without a doubt, you will be able to do both treatments at the same time and you will be having people shake their heads in bewilderment at you.  I know you will set records and amaze your entire medical team.  You've got this one!  We anxiously await your updates, and enjoy reading all the updates of good news that you get.  You radiate, even in the most trying of times, so that's how I know you will be able to get through this!  Thinking of you so much right now.  Praying for everything that you need! xoxo

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Starting chemo with continued brain radiation next week Thursday. Onc wants to try abraxane and/or carbopratin once a week for 2months, if I can handle it, he wants to up the dose to once/3wks, this works well for mets and other organs where cancer has spread, but still waiting for better path report. They said I just have mets and can't find place of origin, keeps changing too much, so onc sent sample to another lab outside that can stein and hopefully find the true origin so he knows exact cocktail that will kill all those suckers. Can't wait til they're all gone forever and ever!

    Today's radiation went well, but face was starting to swell to the point that my mask was getting too tight and uncomfortable, radiation onc said due to steroids, so he will most likely change it from 3x/day to 2x/day to prevent more swelling. Otherwise little to no SEs.

    I had a yummy lunch after and green tea shaved ice was delish with my mom, oldest bro, and niece. Afterwards came home and am busy posting updates on FB and here.

    I have such an awesome support group this time, since we moved into my parent's house. We have 11 people living under one roof, in a 5 bedroom house with 3 bathrooms. My parents, my oldest bro, his wife, his 4 grown kids, me, and my 3 kids. My oldest bro is 10 yrs older than me so his youngest son is a senior in high school, all grown up compared to my 10 and 7 yr old girls. My nephews and niece have taken on the role of surrogate mom and dad, since I am sick and my husband due to work being so far from here us temporarily living at my cousin's house 1-1&2hrs away. Tonight was Back to School night and my oldest nephew, 22 and my niece 21 took my girls there to meet the teachers and do parent stuff for me. So glad we r staying here and getting all this help. The older ones also drive so they help me with picking up the girls since I can't drive right now, I love my family! They're awesome!

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  • Kayak2
    Kayak2 Member Posts: 8,561
    edited August 2013

    Aw, Julie, so sorry you have to deal with this, but so impressed with your courage and strength.  You sound like a fighter and survivor.  Just wanted to send my support and positive healing thoughts in your direction.   Looking forward to hearing about a positive response to your treatments.  Carol

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  • Wrenwood47
    Wrenwood47 Member Posts: 73
    edited August 2013

    Has anyone tried out the new forum? I have no idea where our posts are. I don't want to have to start over. I have tried different searches i.e. Calling all Tns, Titan, Luvrving but nothing comes up. Will they be shutting this forum down. HELP

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  • gillyone
    gillyone Member Posts: 1,727
    edited August 2013

    Not sure what new forum you are talking about. They changed the format on here a while ago but I have not heard about any new changes.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited August 2013

    My dear friends, If you find I'm not on facebook for a few weeks we have decided to go out to Alberta to visit our son and his family.We leave in the morning and will be back when we get back. Hugs and kisses to you all. xoxoxoxoxo

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