Calling all TNs

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Comments

  • VL22
    VL22 Member Posts: 851
    edited April 2018

    helenlouise - I had adjuvant chemo, but from reading on these boards people do feel the tumor get smaller, but some say it may feel softer. Also, others don’t think it has changed but when they get surgery it is dead. It must be hard not to worry. Just remember that so many TN women do not have pcr, but never have a recurrence.

    Hope you are doing well physically with the chemo.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited April 2018

    DiV - I hope your biopsy today wasn't too uncomfortable but more importantly that the pathology comes back benign. I'll be praying for you.

    HelenLouise - My MO told me that even if you could feel something in the area of your lump during chemo, it could be scar tissue from the cancer cells that have died. You won't know for sure until after your surgery. Hope you are doing well with the chemo.

    Hope everyone is having a good week!

  • DiV
    DiV Member Posts: 231
    edited April 2018

    Thank you all for the well wishes. To all awaiting results I pray for all to have positive results. Biopsy wasn't bad they numbed me up good and gave me some fentanyl. The worst part was having to lay on my amputated side which hurts cause all I have is my clavicle. I will probably have results Monday. Urg I hate the wait.

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited April 2018

    DiV - can you please share what you axillary node dissection was like. I'm have that with my mastectomy on 4/27 due to node involvement at diagnosis. Thank you.

    Paula

  • Nifer
    Nifer Member Posts: 31
    edited April 2018

    Hi everyone! Congrats on all of the milestones! Good luck to all of you waiting on results. I am saying prayers for good results.

    I have a question about side effects...I finished chemo in December. I feel pretty good but have major chemo brain. I forget things all of the time. I'm groggy and always second guessing myself. Anyone else get a lot of chemo brain? How long does this last? Will I ever feel sharp again? Also I'm so so tired all of the time and a bit irritable. I know its only been about 4 months since my treatment ended but anyone deal with this?

  • helenlouise
    helenlouise Member Posts: 420
    edited April 2018

    Thank you VL22, I'm a week post infusion 3 of FEC and this last week has been pretty crappy but all up I must say the side effects have been less than I anticipated. Oncologist tells me the Docetaxel can be somewhat more debilitating. Fingers crossed it doesn't kick too hard.

    Wishing everyone well.
  • DiV
    DiV Member Posts: 231
    edited April 2018

    Paula Hi, they only bodes I had removed was during mastectomy and that was sentinel nodes which they took 6. I have this weird feeling when I drink cold products. I can feel cold water etc travel through that side where nodes were removed. I don't know how many nodes you are having removed. There are women ok n hete who could probably guide you better than as as I've only had sentinel mode removal. Praying everything goes well for you.

  • VL22
    VL22 Member Posts: 851
    edited April 2018

    Nifer - my mind is still foggy - I find myself searching for words way too much! Some days I feel great, but some I just want to go back to bed. Our doctors tend to downplay the post chemo experience, but I really think what we are experiencing is very common. Our bodies were depleted of all of our healthy cells (and the bad ones!) - how can’t it take some time to recover?

    I’m listening to the theory that as long as your treatment was, from diagnosis to last day (rads, chemo, surgery whatever) is how long it can take to feel 100%.

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    I have been feeling crampy and having lower back pain for three days. I am about three months post chemo. Did anyone get their periods back and if so did it all come back at once? I “think” this is my ovaries being crampy but I haven’t gotten my period so I am not certain. I’m 49 and was hoping it wouldn’t come back. But I’d rather this be that than something more sinister

  • ALHusband
    ALHusband Member Posts: 344
    edited April 2018

    DiV I know this probably won't help. But I had a CAT scan about 4 years ago and they found a nodule on my lung. 3 different doctors told me it was probably cancer. Pulmonologist said it was too small to do a biopsy so he ordered PET scan. It didn't "light up" as cancer. 4 years later I still go once a year and get a scan to see if it has grown. 4 years later, nobody has told me what that nodule is...but the Pulmonologist says it's not cancer and it hasn't grown even a little bit. Remember, 3 doctors said with certainty that it was cancer. They were wrong.

  • kmajor
    kmajor Member Posts: 86
    edited April 2018

    rdeesides - I finished the IV chemo in Dec and I still haven't gotten my period back either and I'm 41 but I'm also on Xeloda now so I don't know if that has anything to do with it or not. I was having some aches like at the very bottom of my stomach mostly on the right and I asked my oncologist if it could possibly be my ovaries aching and he said it's possible. Well it bugged me so I set up an appointment with my Obgyn and she had me do an internal and external ultrasound and everything looked good. I do have back pain but its not at the bottom of my back it's like midway. The back pain as well as my stomach started bothering me while on Taxol. My Obgyn also said my ovaries could just be aching from being thrown into menopause. Hope this helps.

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    kmajor,

    Thank you this sounds similar to what I’m feeling, except the back pain is lower. That could honestly just be due to the way I’ve been sitting while working. I will follow up with my PCP when I have my yearly appt, which will be soon.

  • DiV
    DiV Member Posts: 231
    edited April 2018

    ALHusband hi, my mass is the size of a walnut. I'm praying it's benign.

  • VLH
    VLH Member Posts: 1,258
    edited April 2018

    Blast, DiV! 😥 It's got to be torturous having to wait over the weekend. I hope that your report is favorable.

    Lyn

  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2018

    DiV: sending lots of good thoughts your way. So sorry that this is happening to you.

    Redeesides: I was 49 when diagnosed and treated. Onc said my period would never come back and it didn't (58 yrs old now)

    Nifer: Chemo Brain is real. I am almost 9 years out and I still think that some of my ongoing forgetfulness, searching for names and other details are due to the effects of chemo.

    Hello to everyone. I am so glad that this thread continues to be such a great support for those in all phases of treatment. I know it was a God send for me and still is!


  • lakewoman
    lakewoman Member Posts: 267
    edited April 2018

    Will try and keep this short..BC right breast..mastectomy Er+ HER -

    Arimidex 5 yrs then five yrs in remission.

    Virus 7 weeks ago had chest xray..lung nodule..now post scans and lung biopsy and then PET..mets to lungs sternum and mediastinal lymph nodes On. ibrance and letrozole bit over a week

    PET also showed nodule on left breast..Biopsied week ago Fri.Saw results on pt portal today triple negative.Dr said if it not ER + and Her 2- Treatment might change ..with this in mind she gave me appt this Mon..any thoughts anyone have this???Ibrance thread sent me here..TY

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    NavyMom- thanks for checking in. Good to hear from people so far out. I’m hoping my period stays away!

    LakeWoman - I think you meant to post on a Stage 4 thread? No one on this thread takes Ibrance I don’t think since we are all Triple Negative

    Rebekah

  • lakewoman
    lakewoman Member Posts: 267
    edited April 2018

    redeesides ty for your post..I am now between rock and hard place..RT breast mets to lungs sternum and mediastinal nodeS but now independent of this they found triple neg in left breast .no mets..Just learned the TN part today via pt portal I was here to learn from you with triple negative diagnosis..even though u dont take ibrance.

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Got it! TN is really treated with chemo so i would think you would get that and they would keep you on the other stuff for the hormone positive part. I’m sure others will have more thoughts. Sounds like you have been through a lot. Hugs.


    Rebekah

  • lakewoman
    lakewoman Member Posts: 267
    edited April 2018

    Awe ty so much.. it was confusing to me..even as old RN so happy you said Got it meant a lot to me..TY..

  • Batesburg
    Batesburg Member Posts: 199
    edited April 2018

    thinking about you today, DiV

  • Flynn
    Flynn Member Posts: 307
    edited April 2018

    Hi fellow TN's! I'm just catching up on the thread as I haven't been around lately. I don't think that I can recall everybody individually but good luck to those of you awaiting results. That's so hard. Happy for those of you with good news! I can say that I still (almost 6 months post chemo) have foggy brain occasionally but it is getting better. I'm 48 and briefly thought my ovaries were starting up again at one point but it never happened. Since feeling subsided after a week or two, I never explored further.

    I took about two months post surgery to fill one tissue expander then started radiation in late Feb. Mentally, I found rads pretty challenging emotionally. Objectively, I know it wasn't as bad as chemo but I think that I'm just tired of treatment and want my life back. I finished rads right before Easter and my skin is finally almost healed. I had very close to pcr but not pcr so my husband and I decided to pursue opinions at my medical center and elsewhere to make a decision about next steps. My MO does not recommend Xeloda and is open to a clinical trial although it turns out that I'm not eligible for the TN immunotherapy trial here. We have one appointment a week for the next 3 weeks. I'm hoping to get some clarity about further treatment and find out about any potential trials that would be a good fit. We shall see.

    Best wishes to all of you dealing with whatever is going on in your life!


  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited April 2018

    Flynn,

    I'm not sure why you wouldn't be eligible for Xeloda, but my MO is running a clinical trial using Keytruda for non-metastasized TNBC to see if it helps us. DM me for more information if you like. Thank you for your info about what you've been through, how long it took, your feelings, etc. My mastectomy with axillary node dissection and TE is Friday, April 27. I got considerable reduction but also not pcr as well.

    Paula

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited April 2018

    lake woman this is a great place for TN information. Many are early in their diagnosis, on treatment etc. there are many of us that are past treatment but share the ZtN diagnosis. I hope others chime in that have contributed to this thread for a few years. TN is very different from ER plus. My first bcc was ERPlus, this most recent was TN.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited April 2018

    DIV thinking of yo

  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2018
  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2018

    PaulaAtlanta: I had A.N.D (17) with my mastectomy,too. Wait a few weeks to shave your armpit post-op. I had horrible burning pain for many, many days after shaving. To this day I've had no problem with lymph edema. I do wear a compression sleeve when I fly. Put it on one hour before and take it off one hour after I land. I still get Zinger pains in my armpit every now and then. Some are bad, others not so much. They last no longer than a minute or so. And Don't allow anyone to take your Blood pressure, start IVs or labsticks on that arm. And I wear gloves when doing yard work. I'm very protective to keep that hand/arm from any infection. So Far so good.

  • VL22
    VL22 Member Posts: 851
    edited April 2018

    jenjenl - hope appt went well.

    Div - hugs.

  • lakewoman
    lakewoman Member Posts: 267
    edited April 2018

    Thanks Valstim52.As you know..

    My right breast Er+ her2-..mastectomy 10 yrs ago..then from that six weeks ago mets to lungs.and am on ibrance and letrozole..Yesterday MO appt.on biopsy of left breast.nodule seen on PET scan.Yes it is TN ..very small 1.1..I am being scheduled for a mastectomy..Not until she gets pathology report of that will she decide if I need chemotherapy. For now staying on pills!!! while I recover from surgery..So I will check in here if I have any questions regarding TN..ty so much..

  • aterry
    aterry Member Posts: 290
    edited April 2018

    Nifer, I'm 13 months past my last chemo treatment and I still have brain problems. I've stopped calling it chemo brain because it is more than just fogginess or forgetting words, names, etc. I had a thorough work up by a neurologist who specializes in chemo induced brain problems and learned that my two weak areas are processing & attention. I scored at the 6th percentile. The doctor suggested doing 6 specific Lumosisty games. I did those daily for 3 months but I didn't find it to be helpful. Many people never experience chemo brain damage and many bounce back quickly, like VL22 who is recovering after 100 days (such good news!) I think I'm just stuck with mental limitations. What's weird is that I get associated sensations in my face--these are not bothersome, just interesting. If I'm in a situation with a lot of visual stimulation and information to process--like in an Ikea store--my brain gets overwhelmed and I can't think through which silly product to buy. But also, my forehead, lips or cheeks go numb. Last week I was in a Container store with DD, helping her get closet items; my whole face went numb and I got so overwhelmed I almost fainted.

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