Calling all TNs

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Shopgal - I'm so sorry that you have to deal with such anxiety and fear again. I know life isn't fair, but come on! It's good to know that you are in an area with great choices as far as medical care is concerned - living in the Philly area gives me a bit more confidence I believe and I hope it does for you also

    You are in my thoughts and my heart.

    V

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    MakeupLover- happy to see you're moving quickly along. Best of luck!


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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited August 2017

    placid 44 thanks so much for the links.

    vL22 I am sorry if I gave you or anyone else the impression that I was meant life was not fair. I didn't mean to offend you or anyone else on this forum. Please do not take my words as anything more than my personal experience. Everyone's experiences are different and my post was me venting and not meant to bring anyone down.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2017

    Shopgal, I'm sure you haven't offended anyone. We all come here to share and vent and reassure each other.

    I had my first annual MRI post treatment today. I'm hoping this is just a question that they ask everyone, but as I was leaving, the guy asked me if I was still menstruating and when I said I had a partial hysterectomy, he asked if I was on hormones. I told him no, I was TN. I'm really hoping this didn't mean that he saw something that will need to be biopsied. MRI biopsies suck...not that ultrasound biopsies don't, they both do. I see my MO on Thursday after bloodwork and an mammogram.

    Shopgal, I have bloodwork every three months, but I can't remember if they ran cancer antigen tests or not. Mostly it's to check my CBC, etc. if you don't like that guy, absolutely get a second opinion. Even if it means slightly postponing your surgery. You need to have the utmost confidence in your team.

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Oh Shopgal! Please don't misunderstand! You have offended no one! I just get angry when it seems wonderful people get an unfair burden is all. It just gets me so upset when women on here have to deal with such news

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    I am sorry to have been gone so long, I have missed you all, and just read through the thread to get caught up.

    Val, so very sorry about your dear friend. I know you are hurting and I am so sorry for your loss. She soundes like a wonderful lady and I know she will be so missed. Hugs to you.

    Shopgal, gee whiz, just so sorry and sad and mad! You know statistics can be scary, but I want to share with you that my diagnosis of Triple Neg Inflammatory Breast Cancer has a bad survivor rate..(right Val!) and today is my 4 year Cancerversary, 4 years since diagnosis. I share this with you to give you hope, that you can beat the odds, and to try to be strong, be calm. I am just so sorry you are going through this.

    Warrior, I too lean on my dog for support, and I am sorry your is struggling with health issues. We need these furry family members.

    I have not heard from Annie, I am facebook friends with Allydp, she said sometimes Annie will click "like" on her posts, as she is fb friends with her. I nope this means she is out there being Annie, and getting joy from facebook.

    Welcome to all the newbies, we are so very glad you found this wonderful place, a soft spot to land.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited August 2017

    Val, - My reading has been sporadic, and I see that I didnt respond to your sad post about your friend. I am so sorry for your loss. Try to find comfort in good memories. She was fortunate to have been so loved.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited August 2017

    Meadow, - good to 'see' you. Hope the summer has been comfortable and happy for you!

    I have been thinking about Allydp and wondering how all is going with her!

    Hope we hear from Cocker soon, too!

    Hugs to all here

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    Good to see you too Another! I am feeling really good, thank God. The Lat Flap surgery was a success. I have shared many times how much your encouragement meant and means to me, thank you. Ally is doing great! Not long ago she said she will pop in, she is feeling good, happy, thankful


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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2017

    Great news about your surgery, Meadow!

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited August 2017

    meadow I was thinking about you and wondering how you were. So good to hear from you.

    I do want to update that I have 2 appts for treatment consults on Tuesday. The first is in the morning with the gyn oncologist who did my surgical biopsy/d&c at Jefferson in philly The second is in the afternoon with a gyn oncologist at penn in philly who was highly recommended.

    It was just 2 years ago this time that I had my reexcision 8/3, port surgery 8/31, and started chemo 9/2. Déjà vu

    Plus I had to explain to my travel agent about canceling my big trip to Europe in oct. She forgot to add in the trip insurance that I requested 2 months ago. Thankfully I had an email that I sent her. She put thru the insurance request today. She thinks I can get back some of the prepaid costs, but the air fare will be tough. She said I have a year to use it and had to say I most likely won't get to. So she is going to have to submit a medical hardship form for me to the airline and see what happens.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited August 2017

    Meadow, thank you, you are very sweet. I am so glad that you are feeling good! Looking forward to update from Ally, too!

    Shopgal, It's so helpful that you are in an area with many choices re drs, and that you have recommendations. Those days of one appt after another are extremely difficult, but as we all know, once you have a plan in place it does settle down a bit and you will feel better. As for your trip, - if you have those e mails requesting the insurance, then your agent is liable for what ever it would cover! She is the professional that you worked with, - she is responsible! I know that is not what you want to be dealing with right now, - but dont let her off the hook and take a financial loss because of her oversight!

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  • ALHusband
    ALHusband Member Posts: 344
    edited August 2017

    Just hearing that Annie is occasionally clicking like on fb is good to know. Glad to hear it.

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  • VLH
    VLH Member Posts: 1,258
    edited August 2017

    Shopgal, what a relief that no mets showed up, but this second cancer stuff still sucks big time.

    Lyn

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  • cassylou
    cassylou Member Posts: 52
    edited August 2017

    Shogal, Sending you love and hope. You don't need me to tell you that it's so unfair, but it is! I'm sorry that's you're going through this.

    Meadow, lovely to see you and hear that the surgery and recovery has gone well this time. 4 years hey? That 4 year mark must have felt like it was so far away in the beginning, yet here you are. Awesome stuff.

    I'm sending oodles of love and support to everyone on these boards, both in active treatment and post treatment. So long as we have these boards, there will always be someone that has at least a little understanding of what we're eachgoing through.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2017

    HI Meadow....I've missed you. ❤️ So good to hear from you

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2017

    Hello to all

    Shopgal, so sorry about your news. As Meadow stated, statistics suck. We both have TN IBC, horrid results, yet Meadow is 4 years and i"m just shy of 2 years. I so agree with you to press on to have the best team for treatment.

    thanks so much to all about my friend. Such a loss. To refresh she was 8 years NED from stage 3TN, I didn't know exactly how many years had passed or that she was stage 3. Then an anerysem killed her instantly. Concentrating on the good times we shared and her loving support for me and my dx. She used to joke with me in chemo, that since I had dodged chemo 26 years ago for bc, that my body was just catching up. She had that sense of humor.

    Meadow so glad you are good, have missed you dearly. Same with you AnotherNYCGIRL. You have been such a great source of encouragement. All of you.

    Hey Cathytoo, can you believe we are approaching 2 years?

    Newbies there is no better place for support. Welcome.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2017

    Valstim52...Hey back to you‼️ No, I cannot believe we are almost at 2 years. Hope we are saying someday "Hey, can you believe it's been 5 years‼️"

    I wish you and all our other "sisters" comfort, support, love and good health.

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  • purplestargazer
    purplestargazer Member Posts: 77
    edited August 2017

    I'm using Omniprazole for heartburn. I helps a lot. One day I had heartburn so badly even on top of that so I used Tums to take the edge off. You can ask your onc to prescribe something for heartburn as well. The Rx is way cheaper than purchasing OTC. I just got my Rx called in yesterday.

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    Val and Cathy, I have missed you too! How was the Eclipse experience for everyone? I was able to watch it with my 85 year old parents and one of my sons, as he was off work that day. It was fun to share the experience with these loved ones. How about some of the rest of you?

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2017

    Photography is my hobby, so I went downtown to shoot the eclipse, even though my area only got 88% coverage. Lots of people wanted to look at my screen and took pictures of it. This phase collage made my local newspaper!

    image

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    LoveMyVizsla,

    Beautiful! You are talented!

    R

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    LMV, oh wow! That is amazing! Very good job, you must have been thrilled. image

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    Above is a pic of my 85 year old parents watching the eclipse. My dad still farms, and my mom has more energy than I do. They really enjoyed the eclipse, and I enjoyed it, and watching them.

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    85??! Wow- they look great! I love to see older people looking so happy enjoying life.

    Thanks for sharing

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Meadow,

    I love that a) your parents are in their 80s and doing so well and b) that they are still together and c) that you get to spend time with them. Very precious

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  • ALHusband
    ALHusband Member Posts: 344
    edited August 2017

    I am in a 97% coverage area. That said, I must say that the eclipse was about as exciting for me as when Geraldo Rivera opened Al Capone's vault. It left me saying, "Is that it?" Oh well...glad others enjoyed it.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Is anyone familiar with the subtypes of TNBC? And if so, have you tailored your treatment to it? Apparently it requires genomic testing

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5053306/

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2017

    Al, I remember that so well! I was so hoping there was treasure in that vault.

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  • Stre
    Stre Member Posts: 2
    edited August 2017

    Hello everyone.

    I have been reading a lot about TNBC and preparing for whats coming.

    Im 32, married,no kids.Got diagnosed on Aug 9, a day after biopsy. I was shaking when I got a phone call from the surgeon. I cried everyday for the whole week.My head hurts after crying and every time I talk I just bursts out crying..I just answered yes and No when asked by doctors and nurses coz I cant help it.I'm doing better than the past few weeks.I keep myself busy by reading forums online..It really helps.

    Did, Bone scan, Cat Scan, MRI.. and Ill have my last test Pet scan this wednesday, then after that, I'm starting therapy.My oncologist didn't mention anything about port and veins though..They didn't ask whats the best option and what would they recommend.Upon reading the previous conversations here, surgery is being done to attach the port. Guess ill be doing vein infusion coz i don't have surgery schedule.

    I just moved here last year, got married, planning to start a family, and this happen..I still consider myself lucky, fate brought me in this country with all the best available doctors..God is looking out for all of us..Have faith..

    I'm praying for everyone..We Will beat this!



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