Calling all TNs

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  • jenjenl
    jenjenl Member Posts: 409
    edited October 2016

    yesterday was 4 yr anniversary from dx... lots of scares along the way. I have made many changes but there are areas i need to do better in.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited October 2016

    First of all Annie, I want you to know that I am sending big hugs and holding you close. I too come back to these boards sometimes to see how everyone is doing and you are so close to the 5 year mark, it just makes me so angry that this is happening to you. Cocker you are so supportive and loving to us all. You open up your heart and support everyone here. I truly hope you can knock this back with treatment if the suspicions are confirmed. You have a generosity of spirit that always shines through. I wish I had more words of comfort but know I will be thinking of you and praying for you everyday. Giant hugs to you dear Annie.

  • Cathytoo
    Cathytoo Member Posts: 394
    edited October 2016

    jenjeni...Congratulations‼️ Stay strong and keep getting better in every way. ❤️

  • Cathytoo
    Cathytoo Member Posts: 394
    edited October 2016

    breastcancerhusband...Thanks, so much, Tom for the information. It's much appreciated. And, an extra thanks, for being so caring and supportive to all of us.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited October 2016

    Cathytoo I took metformin for about a year as I had heard about possible benefits. My PCP prescribed as my oncologist wouldn't but was not opposed to my PCP prescribing. I am not sure as to whether I had any benefits from it. there just was a point I wasn't sure. I still do a Budwig diet ground flax seed and flax oil in immersion blended in a little yogurt or cottage cheese and then I add blueberries. I think there is no proof on this but I thought it couldn't hurt.

    Amw5 first of all giant hugs to you. I see you are at the start of this journey. I am nearly 5 years out and this board was my lifeline during treatment. You will find everyone so supportive. Treatment is hard but not horrible. You may want to ask the social worker where you get treatment about some services that might be offered in your area. I was able to have my house cleaned 8 times from Cleaning for a Reason and Did the Avon Look Good Feel Good program. I also was able to receive reiki and massage at treatments through the hospital and they offered 4 in home massage treatments for me. I am an individual and couples therapist so I kept pushing asking to speak with a social worker and asked for any help supporting my journey. I was specific: Is there any reiki?and low and behold, there were free services not mentioned. I know this is an aside to the big C and the treatment you will start, but it is tiring and it helps to have support. Love to you and your family.

  • amw5
    amw5 Member Posts: 74
    edited October 2016

    Paintingmywaythrough,

    Thx so much for the very good information. (((hugs))) I do believe this board will also be my lifeline during my treatment.

  • KSteve
    KSteve Member Posts: 190
    edited October 2016

    Welcome to the thread amw5! Glad you found us. I just responded to your PM.


  • allydp
    allydp Member Posts: 361
    edited October 2016

    Cocker...Annie...I think I speak for all of us when I say we're not thinking of ourselves when we hear of your possible recurrence. We're thinking of you and want nothing more than to take it away from you. Thank you for being so open with us. My heart just breaks for you. I'm still going to hold out hope for some odd benign finding, but if you have to face this beast again, we are behind you regardless of the path you choose. My thoughts and love have been constantly with you.

  • allydp
    allydp Member Posts: 361
    edited October 2016

    Jenjen - congrats on your 4 year milestone xo

  • Batesburg
    Batesburg Member Posts: 114
    edited October 2016

    I don't post much on here - mostly I read what you all post and for this, I am appreciative. Ally, you say it beautifully about all our thoughts on recurrence - and, thank you for your sharing.

    We are all together on this journey and I do care and share my deepest concerns and energy for our special group of TN breast cancer survivors and thrivers.....we are all doing the best we can with all that we face- we are strong, resilient and hopeful.

    Thank you for all of you,

    Janet

  • lrm216
    lrm216 Member Posts: 534
    edited November 2016

    Annie:

    I came on the boards today, realizing it's been awhile since I've been here and was devastated to read your post. Please know that I too am holding you up in prayer, and know that my thoughts and love are with you. I will surely be following your posts closely as well as keeping you close to my heart. God bless, Annie.

    Hugs and strength to you,

    Linda

  • goldie1431
    goldie1431 Member Posts: 17
    edited November 2016

    Although I don't post often I have continued to follow this group since I joined. Cocker you have been such a calming force for me and others. I am so so sorry to hear of your update. I will keep you in my thoughts and as others have said will be there for you.

    Someone previously posted about hip and back pain. I have had minor which progressed to horrible right hip pain moving to my back for about 2 months. Saw my internist first who ordered physical therapy. Then saw my oncologist at my regular appointment. He ordered a nuclear medicine full body scan just to "be sure". That's tomorrow. I started PT 2 weeks ago. She said my pelvis was out of alignment. I'm already about 50% better. So I'm hoping the scan will be clear.

    Since finishing treatment I have also had 2 breast biopsies-both clear. It certainly seems like it never ends. Just when it's going great something seems to pop up.

    Warm thoughts to all on this board

  • Shopgal2
    Shopgal2 Member Posts: 594
    edited November 2016

    I just checked these boards after not being on in weeks and am heart sick reading how so many of us are facing tough times.

    Cocker I am praying for you and as many have said holding you tight. You were so kind to me when I joined this board in the spring after finishing treatment and you really helped me with your kind words. Sending you love from the states.

    I had posted the beginning of oct about having costocondroitis. Well it had gotten pretty bad. Two weeks ago I was having some intense pain after finishing a course of steroids to take down the swelling. My ro had me go in for a cat scan a week before my trip to Ireland and England. Needless to say I was scared shitless about them finding something. Thankfully no micro fractures or signs of any masses or tumors. Just this damn costocondroitis that makes it incredibly painful to sleep, and causes me some intense pain. Cancer the gift that keeps giving.

  • Shopgal2
    Shopgal2 Member Posts: 594
    edited November 2016

    I did want to say that I did something amazing in Ireland. I got to stay in an Irish castle and did a cliff walk at the cliffs of moher in doolin Ireland. The cliffs were carved out by glaciers and are beautiful. It was a tough hike up the mountain and thru some very rough terrain thru tiny paths, steep inclines, over rock streams, and rural paths. Basically you walk a tiny path next to the cliff edge overlooking the Atlantic Ocean. Beautiful and scary. I kept thinking I couldn't make it then I said at this time last year I was getting chemo and was pretty sick, not even able to walk and about 60 lbs heavier. When I finished I was crying. At one point I looked over the edge and screamed fu cancer and hoped the sea took my cancer and pain away. Here is a pic of me on the trail and the view from the edge.

    imageimageimageimage

  • Ka-cey
    Ka-cey Member Posts: 15
    edited November 2016

    Dear Annie:

    You are in my thoughts and prayers.

  • Cathytoo
    Cathytoo Member Posts: 394
    edited November 2016

    Shopgal2...What fabulous photos. You look wonderful, full of life and so happy....indeed "FEARLESS AGAIN"‼️

  • scotbird
    scotbird Member Posts: 592
    edited November 2016

    Goldie, I too have been experiencing hip pain for months and had a nuclear bone scan yesterday after what sounds like a similar path of consultations to you. I've found that Pilates and gentle swimming seems to help a bit but still need painkillers every day. I'll be keeping my fingers crossed for your results to be clear too! I might have to wait a week or so for mine and will keep you posted. I also had an ultrasound on my scar area because there seemed to be a lump there, which they said was fat necrosis. I have to massage it daily until it goes away. Lots of love to everyone.

  • Cathytoo
    Cathytoo Member Posts: 394
    edited November 2016

    Goldie & ScotBird...these aches and pains are enough to send you into a panic. I've had shoulder pain for about a month now. Going to physical therapy. They seem to feel it's coming from my neck. I feel better after therapy but the pain isn't totally gone. I have a Rx for a MRI but I'm hoping that the therapy will finally get rid of the pain. Hope you find that everything is fine

  • meadow
    meadow Member Posts: 998
    edited November 2016

    Shopgal , my heart jumped in my chest at your beautiful pictures, beautiful moment . thank you for sharing

  • SA8PG
    SA8PG Member Posts: 280
    edited November 2016

    Shopgal that is amazing!!!! I am so glad you were able to take that trip & for the good health to make that hike. Beautiful pictures thank you for sharing your life with us. :))))

    Goldie & Scotbird I had a bone scan & Ct scan on Friday for all these pains I have been having in my femur, right rib & shins. I had a PCR as well. I am 2 years out from my last chemo. My scans are clear of any metastic disease however my bones took a big beating from chemo. The scans show several areas that are degenerating. Oh the fun of chemo side effects at age 41. Lol

    Cocker you continue to be in my prayers & thoughts. Your such a bright light on here. You are dearly loved.

    Sending my love & prayers to all.


  • georgie61
    georgie61 Member Posts: 48
    edited November 2016

    Shopgal,

    I love your pics. My husband and I were hoping for a trip to Ireland this summer...I would love to know where you stayed, if you don't mind sharing. I haven't begun planning yet. Awesome!!!

  • georgie61
    georgie61 Member Posts: 48
    edited November 2016

    Also, amw - I've been thinking of you a lot, hoping you get your treatment plan going soon so you can get into proper Warrior mode!! it helped me just knowing I was taking action.

    Cocker, still thinking about you and pray, pray, praying for a miracle or better. You can do it - whatever "it" is. xoxo

  • whippetiggy
    whippetiggy Member Posts: 2
    edited November 2016

    Hi. I'm brand new here. Just diagnosed with my third negative hormone receptor this afternoon which makes me part of the triple negative club. I just turned 46.

  • georgie61
    georgie61 Member Posts: 48
    edited November 2016

    I am so sorry whippetiggy - do you mean this is your third diagnosis? I hope not...or Triple Negative?...which is definitely treatable! Just know, we are all here for you and we were all in the same place you are now. I promise it gets better when you start a treatment plan.

  • Shopgal2
    Shopgal2 Member Posts: 594
    edited November 2016

    Georgie I sent you a pm with some info.

  • whippetiggy
    whippetiggy Member Posts: 2
    edited November 2016

    I just edited my post. I knew I was ER-/PR-, was just waiting for HER2 and that's what I found out today. That's negative also so I'm confirmed as triple negative.

  • lilyrose53
    lilyrose53 Member Posts: 120
    edited November 2016

    Shopgal2,

    I must say, your pics are fantastic! That's what I love to see! Getting out there and living life to the fullest! I am also planning a trip next year to Ireland, Scotland and England. I hope I can make as much of it as you did yours. Your post really gave me a boost. Thank you!

    Wishing you all the best, lilyrose

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited November 2016

    Awesome trip, Shopgal! Not sure I would have the courage for sheer cliff walking, but I've been wanting to go to Ireland.

    Sorry you had to join us whippetiggy, but welcome

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited November 2016

    Ladies everyone of your posts brings me to tears. I feel your prayers and hugs dear friends and somehow I will face with renewed courage whatever I have to do. Yes, I'm scared but no more scared that all of you ladies trying to get through the days and years and all what our newbies are going through. I hate the word recurrence more than anything because I don't want any of you to worry about what may not happen and it really is the word that stops us from living after cancer because it's always in the back of our minds. Forget what may happen to me, there is only one who knows, I want all of you to know that your treatments were the best for you all and there is no reason you all cannot go on and live wonderful lives. That is my prayer for you all and I found out today from a friend that prayers do come true.

    My love to you all. xxx

  • gmmiph
    gmmiph Member Posts: 662
    edited November 2016

    Hi Miss Annie,

    I am one of the newbies here and you dont know me. I've been following all the sympathy posts here since you broke out the bad news about your R (i am beginning to hate that word). You are a lucky lady to have many sincere friends and I can see why. You have such a big heart and thru your soothing and comforting words, we seem invigorated.

    Cocker, you know the old saying, "If there's life, there's hope". Please show us what it means, be our hope! No matter what the outcome may be, it doesnt matter, the main thing is you, we tried, together, to the very end!

    We definitely want you to stay.

    In the words of the canine...

    Woof woof, bowow-wow, grrrr, ruff-ruff-ruff!

    Translation: Dear Cocker, we love you. Fight! Go, go, go!

    Let me see that cute smile now.

    Happy thoughts,

    gmmiph