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Calling all TNs

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Comments

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    aterry...I think Adjuvant is not on line any longer. I'm not familiar with the other site. I've gone on Cancer Math and Predict UK. They are all pretty much the same. And, again we are not statistics. We can only do the treatment and hope for the best. I met a Breast Cancer Oncologist at the beauty salon the other day. She travels the world investigating new protocols. She said every day there is another breakthrough...another lifesaving phone call for a patient. We are in a good time when TN is a hot research topic. Hopefully, there will be a breakthrough soon like there was for ER+ and HER2.

  • Momy4ever
    Momy4ever Member Posts: 21
    edited February 2017


    Suprsurvivr, may be you want to check the Xeloda and TNBC thread, it's for us who didn't achieve PCR after neoadjuvant chemo.

    https://community.breastcancer.org/forum/72/topics...

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2017


    Hi all,

    I have been having unexplained bone pain in one of my elbows over a few weeks with no signs of bruising. It has beeen over 4 years since my treatment. I have moved geographically since then and I'm not very impressed with my new MO but being asymptomatic I have just gone along with his follow up. I saw him a few months ago and he said "come back in a year.

    I'm scared. Has anyone else had unexplained bone pain; if so, what was (were) the follow-up tests to rule out bone metastasis.

    I find myself holding my breath as I consider next steps...

    Hugs,

    Peggy

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
    edited February 2017

    Thank you so much Momy4ever - that's the perfect thread for the Xeloda!!Does any one know if there is a thread for platinum based chemo - cisplatin or carboplatin?

  • amw5
    amw5 Member Posts: 74
    edited February 2017

    Hi ladies.

    I hope everyone is doing ok.

    (((hugs)))

    ~Marie


  • Valstim52
    Valstim52 Member Posts: 833
    edited February 2017

    Hello Marie, hugs back at ya. Thinking of everyone here.

    val

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    PeggySull....a few months ago I had unrelenting pain in my right shoulder. My MO had told me that any pain lasting more than three weeks needed to be scanned. I went to a physical therapist the second for an evaluation. After several exercises and range of motion measurements he said that he felt certain the pain was muscular. I began a treatment plan with him, going three times weekly. After two weeks there was a big improvement. Bottom line is that even though the pain lasted a few weeks more, it did continue to improve over time. Of course, it's natural to worry and think the worse once you'be had breast cancer. But, often the pain is just wear and tear in our body not cancer mets. I wish you well. Try not to worry...and see your MO if the pain persists.

  • aterry
    aterry Member Posts: 142
    edited February 2017

    CathyToo, I found the Adjuvant! site but I didn't try to do a calculator--I'm a chicken, which I know is odd considering what we're all going through. I'll wait until chemo is over and the surgery decisions need to be made and then I'll discuss it with my MO and surgeon. I agree that it's a better time to have the TNBC diagnosis than, say, 5 years ago. There are a lot of avenues of study. A friend sent me a link to a study being done in South Korea that is investigating using Salmonella as a delivery mechanism for immuno therapy. It seems nothing is too "out there" to be studied.

    Nan812, congratulations of the news you received that the tumors are "dead". I've seen one other post that mentioned that a tumor was "dead". Did they explain to you what they see in the MRI and scans that shows that?

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    DiV,

    Congrats on finishing your chemo today. Hope you get a little time off from treatment. Keep us informed about the results of your mri and petscan next month.

    I have two more Taxols, tomorrow and next Tuesday, then I'm done until surgery. Whoo hoo!!

    Trish

  • meadow
    meadow Member Posts: 998
    edited February 2017

    jc, hello back at you!

    Nan, grinning from ear to ear!

    Adapt, congrats!

  • DiV
    DiV Member Posts: 148
    edited February 2017

    Trishyla, thank you so much. I am so happy to be done with treatment. My sore throat has gotten worse from the treatments. Feels like i'm swallowing glass and it's cutting my throat. Can only eat creamed soups. Radiologist and oncologist put me on liquid morphine for the pain. Radiologist said the side effects will peek in 7-10 days then will start to get better. I know you will be happy when treatment is done too. Your in my thoughts and prayers! Hug


  • Angtee15
    Angtee15 Member Posts: 72
    edited February 2017

    Hi everyone! Occasional lurker here😁 I noticed there was some posts about options for us non pCR gals. My onc said no to Xeloda, but happily I found my way into a vaccine trial. I am three injections in with the Tapimmune folate receptor vaccine trial which *hopefully* can prevent recurrence of TNBC. Just a little redness and swelling at the injection site, otherwise zero side effects so far!

    Here's is a link to the study:

    https://clinicaltrials.gov/ct2/show/NCT02593227?te...

    (edited to include link)

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    So sorry to hear about your side effects from radiation, DiV. Sending gentle hugs.

    Thanks for the info, angtee15. Im having my surgery sometime in March, and I worry about not getting a PCR, especially in my triple negative side. It's nice to see more options than just xeloda.

    Trish

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited February 2017

    Angtee, they let you in even though you are stage IIA?

    I have my next follow up on Thursday. Bone density scan, hormone level check, usually blood tests, right side mammo. I've been having pain in and raond my breast since the week before Christmas. RO says it is due to swelling, but it feels like swollen lymph nodes in my axillary area. I'm betting MO agrees with RO, but I'm slightly worried because my original lumps didn't show up on a mammo.

    Congrats to those finishing treatment!

  • KSteve
    KSteve Member Posts: 190
    edited February 2017

    Looking for update from Cocker or her DD. Thinking of you often, Annie.

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2017

    Cathytoo,

    Thanks for the feedback! I saw PT yesterday and she examined me and said that she thinks it's the ulna nerve from work we've been doing as I am transitioning from PT to Live Well program they have so she has been pushing me harde

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2017

    continued...harder. I am going to go lighter on arm exercises for next week and if pain doesn't improve I will see MO asap. Thanks again.

    Hugs,

    Peggy

  • Valstim52
    Valstim52 Member Posts: 833
    edited February 2017

    DIV sorry about your rad side effects. I ended my rads in august, and as some here know i had a horrific time, but it didn't start until they were almost over. (sorry for the run on sentence). I had the very bad sore throat as well. My RO prescribed Magic mouthwash. Though it's for your mouth and sores it really soothed my throat.

    DIV: The cream and pain relievers helped. Then one day about 2 weeks after the worst of the open sores, they started healing. I mean it was sudden. The "My Girls" radiation cream helped a lot. PM me and depending on where you are located I can send the tiny samples they gave me.

    Angtee15, welcome. We were on other threads together. I qualified for that trial due to being a stage 3B, but I declined. No more treatment for me unless I progress. I made that choice due to this is my 2nd rodeo with this beast, and come what may, I'm done for now.

    I'm happy you got in, like lovemyvisla said I am surprised due to your stage.

    Lovemyvisla, hoping for clean mammo, and clean scans. Always something to worry about.

    I had put a worry on here that I had some random spotting. 4 years ago, prior to this bc dx, I had 8 days of bleeding, post menopause. Did all the tests and it was nothing. This time it was very scant and short. Having ultrasound later today. I then went back in my journals. During an intense does of taxol, they gave me not only injections of steroids during the infusion, and massive amounts the day before, and guess what? I had spotting. So 3 weeks ago i had a double steroid shot for my knees. I think that's where the bleeding came from. OB agrees, but doing the ultrasound and then I'm done .

    Trishla, lots of folks don't get a pcr. Those who had surgery first have no way of knowing either. It sucks, but is common. The idea is for chemo to shrink, surgery to cut out and rads if needed do the mop up work.

    Thanks for letting me vent. i"m tired of tests and treatments. Done for now



  • aterry
    aterry Member Posts: 142
    edited February 2017

    Angtee, good luck with the clinical trial. I'm in a research study but not a trial. I also worry about pcr especially since it seems to be mysterious who gets a good response and who doesn't. I guess that's why there is so much research going on; they are trying to sort it out.

    Val, vent all you want. It's a frustrating situation no matter how you look at it. The first day of chemo a PA asked me what my worst fear was and I gave a pretty inarticulate response. Truly my worst fear is getting caught up in a cycle of treatment and recurrence that will keep me from living anything resembling a normal life.


  • DiV
    DiV Member Posts: 148
    edited February 2017

    Thanks so much for all your replies about my sore throat and radiation treatment. Saw my radiologist and oncologist yesterday. They prescribed liquid morphine for the sore throat. It helps but still can only eat creamed soup.

    Valstim52 I'm with you on the treatment. If after all this and the surgery i'm due to have if my cancer comes back i'm not doing any more treatment. Like you this is my second go round. Treatment drains you so much.

    Praying my surgery puts cancer in remission.

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    Hope everyone feels loved today.image

  • 6feetover
    6feetover Member Posts: 97
    edited February 2017

    Cathytoo - right back atcha! *BIG, GENTLE HUGS* to everyone in treatment/suffering right now. HugHeart

  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Hello friends!

    I have not posted for a while as i have been busy lately and this greeting may be late but better late than never!

    Happy Valentine's Day my Friends!

    image

  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Annie, Cocker Spaniel & DD Mandy,

    Just a little poke from a friend. Hi and How are you?

    image


  • cassylou
    cassylou Member Posts: 40
    edited February 2017

    Good afternoon all, just checking in to see how everyone is going. Sending love to Annie. Meadow - how are things going for you? Mike - I sent through a PM regarding my HD treatment. I hope you received it, as i had a few problems sending it. Love Cass x

  • meadow
    meadow Member Posts: 998
    edited February 2017

    Thanks for checking on me, CassieLou, I am hanging in there. I still have an open wound for drainage, and will for 3 more weeks. Yesterday my PS told me he would not attempt another implant there, my options are to be flat, or a latissimus dorsi flap...AnotherNY, I think you had this recon? I am a bit down, so thanks again

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    Meadow...thinking of you. ❤️❤️

  • meadow
    meadow Member Posts: 998
    edited February 2017

    Thanks Cathy, hugs!

  • Valstim52
    Valstim52 Member Posts: 833
    edited February 2017

    Hugs Meadow...

    Val

  • aterry
    aterry Member Posts: 142
    edited February 2017

    I got a good report back for the genetic testing. All tests in the 20 panel test were negative. (most of the genes tested relate to breast cancer but some relate to ovarian cancer). It is especially good news that it was all negative since the geneticist had warned that 3 or 4 would probably come back as variants (variants are basically inconclusive).

    Here are the tests: ATM, BARD1, BRCA1, BRCA2, BRIP1, CHEK2, EPCAM, FANCC, MLH1, MLH1, MSH2, MSH6, NBN, PALB2, PTEN, RAD51C, RAD51D, TP53, XRCC2

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