Calling all TNs

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  • aterry
    aterry Member Posts: 290
    edited April 2018

    lakewoman This site has helped me navigate the treatments for TN but I don't feel educated on the topic. There are many people on the forums who understand the research. I mostly know about TN from my own experience. One of the first things I learned after my diagnosis is that the world of breast cancer is much larger than I'd thought. I didn't know there were so many variations and so many differences from individual patient to individual patient. Reading the pathology report was when I started learning the vocabulary.

    DIV I think of you every morning when I put on my bra. I remember your post about techniques you figured out for getting yours on, after your surgery. You are my inspiration.

    Regards to everyone as you travel your ups and downs.

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  • DiV
    DiV Member Posts: 231
    edited April 2018

    To all with good test results congratulations. For all awaiting results you came to the right place. You will find encouragement and knowledge from others here. This site has helped me alot over the past year. I see oncologist today. Dreading hearing what he has to say. I've been experiencing elbow and knee pain. My elbow hurts so bad I have difficulties picking up coffee cup. My knees hurt so bad if I bend down I moan getting back up. Praying it's not symptoms of bone cancer.

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    DIV - Thinking of you.


    Rebekah

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  • DiV
    DiV Member Posts: 231
    edited April 2018

    Saw oncologist today. Biopsy was positive for breast cancer mets (metaplastic spindle cell) to lung. Get pet scan 25th and see my radiologist 26th. Oncologist isn't sure if surgery is an option. I had part of my left lung removed during amputation. Oncologist is waiting on my thoracic surgeon to get back to him. So for now the plan is to have radiation then chemo. I just got me hair back now I'm going to lose it again.

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  • ScotBird
    ScotBird Member Posts: 650
    edited April 2018

    DiV I’m so sorry to hear your news. I hate stupid cancer. I hope that you get a good plan in place so that you can be free of pain and getting the best treatment to stop those mets in their tracks. Sending love, light and hope to you that you will feel better soon. X

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  • A4ggy
    A4ggy Member Posts: 54
    edited April 2018

    DIV, I don't post often, but tend to check in from time to time. I am sending you love and peace and wishing you only the best.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2018

    Oh DiV, - that is SO UNFAIR!! I HATE HATE HATE CANCER!

    Stay strong and positive, - and make sure they give you something to relieve the pain! Add me to your list of well wishers and friends offering our support in any way that we can.

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Div,

    I hate this stupid cancer. So sorry to hear the news. Sending virtual hugs.

    R

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  • Flynn
    Flynn Member Posts: 307
    edited April 2018

    Div, I’m so sorry about your news. Sending you positive thoughts. I hope your docs come up with a good plan.


    Paula, thanks for your note. I had my first consult yesterday and this doc also does not think that I need xeloda. She says when the residual left behind is very small and nodes not impacted, she doesn’t foresee a benefit. She also thinks my residual amount will notqualify for ongoing keytruda trials. I guess it’s good news that it’s so small. We’ll see what my other consult says.

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  • Batesburg
    Batesburg Member Posts: 199
    edited April 2018

    DiV

    I am so sorry about your news. WE have GOT to figure this shit out- science and medicine are making huge strides but not fast enough. I bet you are feeling this more than most. Was there any discussion about immunotherapy?

    Your strength and resilience are no match to this damn disease.

    We all stand with you.

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  • VL22
    VL22 Member Posts: 851
    edited April 2018

    Well said Batesburg. Once you're in this you get so angry and not just on behalf of yourself.

    DiV - stay strong-we're in your corner.

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  • mike3121
    mike3121 Member Posts: 410
    edited April 2018

    My wife once had metaplastic BC in her lymph nodes (She also had 2 different types of ER+ at the same time; different story). Radiation killed off the metaplastic in her lymph nodes. Just for info, her ER/PR+ turned regular triple negative about a year ago. Last PET scan 2 weeks ago showed most cancers gone and what was left showed increased activity. Her oncologist believes this is tumor flare because you don't get heightened activity without progression. Xeloda seems to be working for now.

    Here is a link to a treatment for metaplastic BC. Also, there's a forum on Facebook just for that subject.

    https://www.nature.com/articles/s41523-017-0011-0

    MikeW.

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  • SoniaL
    SoniaL Member Posts: 131
    edited April 2018

    Div, so sorry to hear this news - praying your doctors will come up with a good plan to fight this. Stay strong!

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  • DiV
    DiV Member Posts: 231
    edited April 2018

    Thank you everyone for the well wishes, hugs and positive words. Cancer sucks! After losing my arm to this damn disease I really thought I beat it, but here we go again. My oncologist says probably a week of radiation then chemo taxotere. I worry so much about the bills. The Clinic has been paying my Cobra and medical Bill's for which I'm very grateful. My Cobra runs out Dec 1st then I have to get my own medical until Medicare kicks in May 1st. I know it will be high due to pre-existing conditions. I just can't win.

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Flynn, good news that you don't need Xeloda! I know that in a way continuing tx gives you some sense of security, but it really is good news that your oncologist is so optimistic! Mine is always the face of gloom and doom. It makes me mad sometimes.

    Div, I wonder if you can't get financial aid from a cancer organization? Just wondering.... I am meeting with someone today that heads up a cancer support group here. I will ask her if she knows any organizations that give financial help.

    Rebekah

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  • aterry
    aterry Member Posts: 290
    edited April 2018

    Mike3121, thanks for your post about what your wife has experienced with metaplastic BC. I hadn't heard the term although I've read many posts about patients who have experienced different types of BC sometimes simultaneous. The BC topic is huge and confusing.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited April 2018

    DiV, did you hear that expletive I just uttered on your behalf? 😉 Stupid cancer!! 🤬🤬🤬😡. We are all here for you. I’m surprised your radiation isn’t more than a week.

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Just had a consult with a clinical research physician and he wants me to get in a clinical trial for Keytruda after I am done with Xeloda. I will have to drive an hour for treatment, but I think I will do it


    Rebekah

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  • aterry
    aterry Member Posts: 290
    edited April 2018

    rdeesides,

    I think the treatment is worth the drive.

    To everyone, Happy Earth Day.

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  • A4ggy
    A4ggy Member Posts: 54
    edited April 2018

    rdeesides..that is great about the clinical trial. An hour isn't that bad. I drive into Boston for appointments and it's often over an hour with traffic, but worth it! Do you mind me asking what the criteria is to be a candidate for the trial? I did bloodwork for an immunotherapy trial that I was barely eligible for but didn't have the biomarker. :( Thanks!

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    A4ggy,

    The trial is for Keytruda. I can send you the NCT# if you are interested. There are something like 550 locations across the US and it is a phase 3 trial. I do not have the PD1/PDL1 biomarker but the doctor I met with on Friday said I should still consider it, so I will call on Monday and enroll. I don't remember the reasoning, but he gave me a cd of our conversation so I will have to go back and listen. Basically he said there was still a chance it could work for me and that I should do everything I can. He is a very well respected doctor at a research institution and only focuses on breast for the past 30 years so I trust his opinion.

    As for driving an hour for appointments... how do you and others handle it? I have a small child that needs school pick up and I don't have any family nearby. I am also working full time. So, If I got a doctor's appointment in the late afternoon in order to accommodate my child's schedule, I have to take her with me. If I get an appointment during the day, I have to miss work for a minimum of three hours since it is an hour each way and then an hour for the appointment. If I get in this trial I may need to be seen every three weeks for a year. I am going t have to figure something out....

    Rebekah

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  • llupp
    llupp Member Posts: 31
    edited April 2018

    I am 59 newly diagnosed triple neg. IDC Grade 3 . This week I have a MRI, Bone Scan, EKG, Echo and nutritionist . Next week meet with the chemo oncologolist and get port to start chemo. Meet with the surgical oncologist the plan of attack is chem 4-6 weeks then surgery depending on the the brca test and all the other testing what kind then 4-6 weeks radiation.

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  • KSteve
    KSteve Member Posts: 486
    edited April 2018

    llup - Welcome! The beginning is such a whirlwind, but it sounds like you're heading the right direction. Wishing you nothing but the best through this journey and you've reached a great spot for help (or just understanding). I am 7-1/2 years out and doing great. You can do this!

    Hugs,

    Kathy

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  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    llup,

    Let us know if you have any questions! Sounds like you are on the right track. Hang in there... Once you get started it gets easier.

    Rebekah

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited April 2018

    llup, welcome, fellow Washingtonian! Sorry you had need to join us, but everyone here is very helpful.

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  • VL22
    VL22 Member Posts: 851
    edited April 2018

    Rebekah- great news on the trial!

    llup- greetings - this is a great place. Sometimes this nonsense can be very lonely - I find much solace here.


    Hugs

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2018

    I had a pelvis xray and just had an abdominal CT scan. I should have results EOW. I'm feeling hopefully since its been less painful this week.

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  • ALHusband
    ALHusband Member Posts: 344
    edited April 2018

    Best wishes for a rather "uneventful" result jenjenl

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  • VL22
    VL22 Member Posts: 851
    edited April 2018

    jenjenl - thanks for the update. Glad you’re feeling better.

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  • Flynn
    Flynn Member Posts: 307
    edited April 2018

    Welcome to the group llupp! I’m sorry that you have to join us but there’s lots of good info here. Keep us posted.

    Jenjenl- sending you best wishes for good results.

    Rebekah- Childcare is tricky, especially when you’re far from family. During the worst of chemo, I used a sitter who picked up the kids. She was a college student who had free time after class. I’ve also used friends. My sons have soccer once a week and one of my friends picks up my kids and brings them to soccer with her son if I’m tied up. Anybody who could help along those lines? Good luck! I also hope your dr remembersto be more positive. Being upfront is one thing but constant negativity is another.

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