Calling all TNs
Comments
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hello all.
Bak94. I can't take the contrast with my MRI's. Allergic to it. But it still showed my cancer quite well according to my BS. Hope that helps you.
Those of you trying to decide on expanders/implants, I decided no. I have knowledge of too many friends & friends of friends that had to have repeated surgeries to fix/replace. I was unable to think of going for that many surgeries.
I am 67 & do yoga. I do not wear my fakes to class but do everywhere else. This is the new me. My husband is a gem as he doesn't care if they are gone. He is just grateful I am still here. It is one year ago today that I had my surgery. Feeling pretty good & according to PET scan end of November....no cancer!!
Thank you all for listening....to my good & bad days. Waiting for a shoe to fall is now the hardest part. So we just keep on. Doing our best.
Marsha
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bak94 sending good, positive vibes!!!!
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congrats stupidboob, Good news was a great Christmas gift.
I'm still learning how to NOT freak over every new ache or pain.
I'm hoping we all have a great 2014#
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I was also wondering if any of you were told triple neg but at the end was told slightly ER + (2%) so now they want me on aromasin. what a blow for me. still not sure what to do.
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Bak- Hoping it's just a goat injury!!
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Brenda, Hoping all is well with the MRI result. My low back issues worsened after a fall a few years ago, so hoping it is nothing major, just irritation caused by the fall caused by your friend the goat!
Nettie, I tested 100% triple negative on biopsy and then when the mastectomy was done, the remaining tumor was found to be 5-10% ER positive, so I am on tamoxifen. I've been on it 2 years. I have gained weight from it and have hot flashes but it is bearable, just not comfortable.
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Gwenie, I hope they are not skin mets. I have a weird thing on my back that sprouted during my Taxol treatments. I'm going to get my MO to look at it on Tuesday when I see her. I looked on-line at skin mets just to see what they look like. It seems like they can look different, so probably the way to tell is with a biopsy. This thing on my back has got to go no matter what because it is in a wierd spot and hurts if I lean back in a hard-back wooden chair. I was surprised to see you had 5 AC treatments instead of the usual 4. Do you know why that was? The reason that I ask, is that the AC really seems to be working for me. If there is any residual tumor left on ultrasound after the 4th infusion, I wanted to ask my MO if she would give me a 5th one. I know there is a life-time limit on the Adriamycin due to it's cardiotoxcity, but if it's working so well, I'd really like to try to get to pCR with it.
Kbuntain, everyone reacts differently to chemo, so what didn't work for me, might work for you. It's also all cumulative, so maybe the AC weakened it and the Taxol will knock it out. The good thing about neoadjuvant treatment is that if it is not working, they can make adjustments. Without the primary tumor to measure, there is no way to tell. Of course the down-side for people like us getting neoadjuvant therapy is that we have the tumor in there longer than if we had surgery first. There are pros and cons to each form of treatment.
Bak, I hope it was the goat too! I can't see my test results from MRI's and stuff on Vanderbilt's website until the doc releases them. I'm guessing your system might be the same, but it sure doesn't hurt to look.
Marsha, congratulations on passing your one year surgery date. I know that getting through those first 3 years are the most important. You have one down, two to go! Wishing you a 2014 complete with NED on all your tests.
Nettie, I would do everything possible to stay NED.
Cristina, are you anywhere near Crossville, TN? That's where I live.
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Kbuntain ~ I agree with simplelife4real about what works for some doesn't work for others. My MO told me right from the start that she wanted the tumor to stay in my breast (if I could handle the anxiety) because that way she could tell if the chemo was working (A/C). She said some chemo can do nothing and some could even feed it. So my decision was to leave the tumor in. After 3 treatments I had an MRI and it showed the tumor had started shrinking. I'm not sure when she would have changed the meds if tumor had not shrunk some. Ask your Oncologist what the plan is so you won't be anxious. By the time my treatment was over and I had my double MX they didn't find ANY cancer in the breast tissue. The doc's in my case took me to the Hospital Board and asked for me to have the whole "shabang" with A/C, taxol, DMX and radiation. I heard that some thought it was overdone but I am thankful we threw the book at it!!
Simplelife4real ~ I don't know why 5 was used but my MO had just gotten back from NY where she was learning more about TNBC and that was her recommendation. I LOVE 💕 her and trust her completely. Today I went in for her to check my bumps on the chest area where my cancer was first felt and she assured me they were NOT mets and went through my aches and pains of post chemo bone aches, gave me some anxiety meds and heartburn meds then told me to go live life! She also gave me a big hug and told the front office to refund my copay because I didn't really need to see her!
Lookingforward66 ~ you inspire me with your picture (is that really you?) and I want to do that someday!! Guess I better get my hiney up and about doing something besides walking.
I have a heart echo next week just to make sure I am okay to start back on my adderall and going to the gym. I'm just so confused with my chemo brain and slow as all get out. I need 2014 to be more focused and active.
Thanks for listening, gwenie
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Kbuntain,
For me, taxol shrunk the tumor more than the AC. I still had some residual tumor at the very end, but it shrunk abou 77 percent.
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Yes Gwenie56 that picture is me. It was taken this summer. I had to stop chemo because of allergies. I am one of the few that can't take it. In just the two DD AC treatments I had, after the second I bottomed out. WBC below 400, almost no platelets & VERY low blood pressure. Admitted via emergency to hospital in critical condition. Put in isolation.
After that & many discussions with my doctors --- I stopped.
I am still recuperating very slowly. My B12 levels are low & take pills for that. Otherwise blood good so far. Exhaustion is my biggest problem.
I returned to my yoga class in July & that picture was taken I think in August. I had, previous to being diagnosed, been doing yoga for over two years. I love it. I go slow. Some days better than others. Getting stronger & according to BS it is really helping my arm/shoulder range of movement.
In yoga at the end of a session we say
Namaste
Marsha
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Our beloved Karen passed away at 2am. Safe in the arms of Jesus and free from pain. Always in my heart my beloved friend.
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Our deepest sympathies to Karen's family, friends, and all who loved her.
Cocker, thank you for letting everyone
know.The Mods
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I am so sorry to hear about Karen. I'm new to the boards and didn't know her, but it's so heartbreaking to hear of any one of us passing from the horrible disease.
Gwenie, I'm glad it wasn't skin mets! Your MO sounds great. I like mine a lot too. It's so important to feel comfortable with our MO's and their advice.
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Karen was so amazing...always so full of wit as well. I shall miss her wicked sense of humor and her fantastic way of making us all feel better. Love hugs and kisses to her family
Mags
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Will miss Karen... deepest sympathies to her family. She was a very positive person... will remember her always.
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Really hate waking up and hearing this new. Karen got me through some very dark days/nights. She will be deeply missed.
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I am so very, very sad to hear this news. Cancer has taken another fine woman from her family and friends. I hate this disease with all my might. F U Cancer.I hope that her family knows how much she meant to us on this board.
Cocker, Thank you for posting.
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Ah...Karen..will miss you so much....
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I am new here but so sorry to hear this news. My heart goes out to her family and will be praying.
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Thank you Cocker for letting us all know.
This f....ing disease take too many good ladies from their family & friends.
My sincere condolences to her family. May she be at peace with Jesus.
Marsha
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Cocker..could you let us know, how it happened so suddenly. I remember Karen posting even 3 months ago....
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I am so sorry to hear of Karen's passing. My deepest condolences go out to her family and friends. She was such an inspiring and brave lady and her insight and advice will be missed here.
Thank you for letting us know, Cocker.
Doreen
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I too will miss Karen. I loved seeing her picture and hearing what she had to say. She was encouraging to me and showed me how to live with TNBC with courage and humor.
Thanks Cocker for letting us know, I had been checking her status for updates.
I hope Karens family knows what a blessing she was to us. Mine doesn't know I'm even on this blog.
Hugs to all, gwen
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I'm heart-broken for Karen's family. I'm going hide somewhere and have a cry.
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I too am new hear, but hate hearing this. prayers going out to her family.
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I am so sorry to hear of Karen's passing. She was a great lady and there for many of us,she will be missed. My sympathies to her family and friends...
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My deepest sympathies to Karen and her family, and I don't think we can say we hate C*&** enough!!!
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I will miss Karen so much. My thoughts are with her family. She was much too young and had dealt with cancer for far too long.
Kay, I am in Chattanooga - very close to Crossville. I've only been there a couple of times, but know it is in the mountains. I remember reading that you are new to Tennessee?
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so sorry to hear about Karen. May she rest in peace free from pain. This is very hard for all of us to deal with - each day is a gift.
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BanR many months ago Karen felt unusually tired with vague pains and couldn't work out why. Insurance wouldn't come to the party re an MRI at the time but eventually she did have one which showed progression to her liver. She started on chemo again but a CT scan later showed it had spread to her liver, spleen, spine, chest and abdominal muscles. The only chemo left that was available was thought to be too toxic for her and maybe end her life quicker. Jaundice finally set in and she was given 2-3 weeks in November so she admitted herself to hospice to see if she could get some pain relief that didn't have to pass through her liver and stop her from eating. She had great spirits right to the end though and accepted her diagnosis philosophically even going so far as going to the store to buy some new pink shoes a week before she passed. She would email me most days so that I could hear from her when I got home from work and she sent me lovely little gifts with cards with words that had great meaning. She was a marvellous friend to me and will be in my heart forever.
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