TRIPLE POSITIVE GROUP

199499599799910001334

Comments

  • Heathet
    Heathet Member Posts: 257
    edited December 2016

    congrats ang7894! That's great news and gives us all hope !

    Sportsmom16 - Definitely talk to your MO about the treatment plan. Have them explain why they want to do surgery and then return to chemo. Iknow some women that have gone through a similar situation and it's emotionally very difficult because we all just want the chemo part done and over! Get a second opinion to see what your other options thereare. It is your body, listen to your intuition and keep us posted. I'm sorry you are going through such a rough time.

  • sportsmom16
    sportsmom16 Member Posts: 25
    edited December 2016

    Am so happy for you! Please say it gets better, I am so tired of being afraid all the time- I am fighting but maybe its just too new-- diagnosed in September- mornings are the worst- how did you get through it -- I really want to be positive but things keep happening and each thing seems scary

  • Sunnyvolvo
    Sunnyvolvo Member Posts: 4
    edited January 2017

    It is soooo  encourage to read all your stories here. My wife was diagnosed to be triple+ BC early this year. After the chemo, the treatment seems to be continue for the rest of life. I have studied BC for a long time and look for solution everywhere. Now we strongly believe it is just a CHRONIC disease. We may need to deal with it all the time..... just like Diabetes, etc. But it can not stop you enjoy happy life (no one can, except yourself). Now, we just follow my oncologist treatment, and take some TCM (Traditional Chinese Medicine, after consult with my oncologist). Do exercise everyday. We will be strong for next decades.

    Good luck to you all......keep up.....

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited December 2016

    when I picked up my tamoxifen this week, it was in a regular prescription bottle, not the white light blocking bottle that ithe usually come in. Has anyone had that happen? I had one of my old bottles lying around so I poured them in there. But doesn't the light affect the pills?

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited December 2016

    just celebrated my 5 year anniversary of my BMX. Still on Arimidex. Wasnt able to complete Herceptin, but still here!

    Happy Holidays everyone!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Moonflwr!

    Well, that's an awesome Christmas/holiday present! Five years post-BMX! Congrats!!!!

  • Kattis894
    Kattis894 Member Posts: 218
    edited December 2016

    Sportsmom,

    I hear you. But you will get threw it one way or another. Asking for help is a good start, being on here is another.

    There are days that are worse than others. Days I have been more scared, certain times I felt very alone, some days have been better. It goes up and down, not in a straight line. I did not know much about cancer before I got diagnosed, mostly the scary things. The awful chemo etc. I have discovered it is more the unknown that is scary. I did not find my chemo to be too bad so far. The operation went well, the shoots, the needles, the poking all is not too bad, but the anxiety to go threw all of it before; pure panic.

    The chock realising this is a marathon not a sprint has not sunk in just yet. I still can not really comprehend I am in this hopefully for a very very long time...I am sure it gets better once the chemo, radiation etc is over but then you are scared for reaccurance so it is just something I have to learn to live with and accept somehow. I am waiting for the pathology report to determine my future treatment at the moment, more chemo or radiation...I am taking calming pills to get threw the wait...it is very real and very scary.

    One thing is certain, life will never go back to what is was before the diagnosis this summer..hopefully I will live for a very long time and I do think that a lot of good things can come out of this experience for your own self and progress. That is my full belief, you might cut some people out of your life your might find some new ones that are better for you. Life is a progress as long as it is going and we all have great chances considering the advances in keeping us alive medically.

    Lots of of love to you sportsmom, it will get better, and maybe one day you will dipp, it is hard to be strong all the time..we all need some extra love and care now and then...


  • sportsmom16
    sportsmom16 Member Posts: 25
    edited December 2016

    Katis-thank you. I am calming down and starting to understand it is the unknown and not much different than another health challange like heart disease or something else - today was a good day but I know there will be bad ones. Talked to a new doc and he explained that if you have to have cancer this one can be handled- gave me back some control-- and calmed my fears- everyones scared of something- your post makes me feel better too. Will get through this. Thank you for your help and compassion- we will both post in 5 years with good news💕
  • ang7894
    ang7894 Member Posts: 540
    edited December 2016

    Congrats Moonflwr912 !!!

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited December 2016

    Kattis, it is great to see you here again. I've wondered how you've been. Totally agree on the unknown being the hardest part of all this hell. "Fear is the worst side-effect of breast cancer treatment" i tell people.

    My surgeons gave me an astonishingly gorgeous lumpectomy + lift on December 1st, then the pathology report declared my nodes were clear, thank dog. But not clean margins, so i was back for more surgery Dec 22nd, seem to have lost some of the buoyant youthful fullness my PS had created (just my BS this time).

    If the next pathology report shows we still didn't get clean margins, i'll be having a mastectomy with immediate reconstruction (and no rads, nodes being clear). Do not want.

    Another surprise twist has been i apparently had three tumours and we only knew of two. First surgery day removed the IDC and a DCIS, but it was not the DCIS we were looking for. The original DCIS is now hiding from mammograms and and MRI. Surgeon's plan for now is to follow me closely and redo the MRI in six months. If the oncologists have a cow, i will be having that mastectomy. 40% chance i estimate, but i'm oddly numb about it right now.

    First pathology report day was a scary/sad one, but since then i've been calmer. As a friend said, it is great that i'm now worried about my breast, because not long ago i was afraid for my life.

    I am trying not to be greedy, i have been very lucky in the ways that matter most.

    Best of luck to everyone.

  • Kattis894
    Kattis894 Member Posts: 218
    edited December 2016

    Wishing everyone a good start on the new year. I am a bit of a mess...waiting for this pathology report on the 3rd of Jan..can not really concentrate on other things at the moment...feeling happy new years eve..no thank you I am in bed.

    Perhaps I am experiencing a depression. In any case I am very worried about my report. I read happy posts about PCR (pathological complete response) an so forth but my tumor did not shrink at all during treatment, guess it did not grow but for some reason I have a hard time trusting what the doctors are telling me at this point. Due to holidays the medical team changes and I am meeting new people at the clinic. One doctor I find ignorant and would like to say something but worried he is part of this medical team and if I critize something he might do something etc.

    I know one of the most important things in all of this is to feel that you can trust your doctors a 100%. I am asking myself if I can at this point. It might be in my head just because I am anxious for the report. It might be anger on why this has happened to me. It might be a lot of things but one thing is certain I am drained after 5 months of treatment, surgery and so forth. Just drained.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi Tunegrrl!

    Congrats on your clear nodes; sorry, you needed a second surgery. Hopefully, you won't need a third.

    I thought that doctors kept track of things with surgical markers (?). But, maybe yours were more focused on tracking the IDC. Best wishes!


    Hi Kattis!

    I know it's depressing to think that your chemo was for naught. But, I've been looking at the rates of PCR lately, depending on cancer type. I just read that "estrogen receptor–positive cancers are the least responsive to neoadjuvant chemotherapy." (Google Caroline Helwick, "Pathologic Complete Response: Understanding the Subtleties.") Since you're 100% ER+, maybe a subdued response was to be expected. Let us know what your report says.

    And yes, stay in bed if you like! Take your time recuperating from your mastectomy. I wish I had been more sedentary after my lumpectomy; I would have gotten rid of my drain faster.

    Best wishes!

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited December 2016

    Thanks, ElaineTherese :) my clip migrated, apparently, and we knew that going in. It happens sometimes, apparently. Blood flow pushes it out along the biopsy track surgeon said.

    Now i'm sad and scared about lymphedema, and having some symptoms. I was doing well until i fell on some ice two days ago. Landed on my surgery-side arm. Didn't hurt at the time, but has been heavy, weak and feeling a bit swollen today and yesterday. Effing sucks, i don't want a chronic lymphedema problem. Will see a doctor asap next week.

    Kattis, for what it's worth, slower-growing tumours respond less to chemo than faster-growing ones. My IDC turned out to be grade 1 (slow-growing) according to pathology, and my surgeon confirmed that is probably why i didn't have a big response to chemo. He also said grade is more important than stage, so really what you want is a slow-growing tumour. Your apparently small response (on imagery) may well be a sign that's what you have. I have my fingers crossed for you.

    I hope we all find comfort and peace in the new year

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Ugh, Tunegrrl. Did a lymphedema specialist measure your arm before surgery? That would allow you to make some comparisons now.

    Also, the swelling could just be from the fall. One of my autistic sons can get aggressive. After my surgery, he attacked me, and inflicted some injuries on my "bad arm." It didn't look too good for a week or so, but eventually it resumed its usual shape.

    Best wishes!

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited January 2017

    Thank you, ElaineTherese. I looked up lymphedema treatments on youtube and found this series of self-massages

    An hour after folowing along with the video, my arm was two-thirds better than it had been. Such a relief to find something i can do to manage it. The exercise are wierd but seem to work. I didn't even do all the things in the video, because i was at a friends house watching him make pizza from scratch at the same time, and got distracted before the end.

    I didn't get measured in advance, in part because my surgeon said my risk of lymphedema would be less than 5%, having only five nodes removed.

    I'm sorry to hear one of your sons is sometimes aggressive. My son isn't autistic but does occasionally get violent with me. I need to get that to stop while he is still small. I use consequences but don't get very angry and scare him. That is not the way i was raised. But clearly i need some new strategies. Might see a behavioural psychologist this year for help. My son is sweet and loving most of the time.


    Happy new year everyone. 2017 has got to be better.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2017

    Tunegrrl -- Thanks for sharing the video! Glad your arm is feeling better. My son was actually a sweet kid until puberty struck. We're currently trying a mood stabilizer (Depakote) on him, hoping it reduces his aggression. I don't have any great advice to give anyone about disciplining kids, but best of luck with your son.

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    Elaine Therese, that is what my onc has told me, my cancer might be more sensitive to hormon treatment than chemo...the problem is that the tumor is now gone so we will never know for sure who works and what does´t, I guess that is the beauty with neo.adjuvent treatment, you will kind of know what works and if it does´t work it is pretty devastating. The hormons we will know if there is no recurrences that is all.

    My tumor is fast growing tunegrll, KI65 30%, the fact that it has remained the same size since this summer still means it has not grown, so something is absolutely working..:) hopefully I will find out tomorrow.

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    So no Complete response for me...my tumor was 2,5 cm x 2 cm at removal, instead of the 6,5 cm x 4,5 cm so it has shrunk some.

    I am off the radiation tomorrow and have started Femara today. My Ki65 went down from 35% to 6% so I guess that is good. Not sure what it means. My onc is on holiday so I have to wait a whole week for the entire picture, but talking to another general doctor he said it will take about 6 months before knowing more for certain how things will go.

    The nightmare continues....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2017

    Happy New Year!

    To all of you newbies...yes it is a happy new year because the disease we have has many treatments and reason for optimism. For the long term folks, it is especially a happy new year....because we are still here and kicking!

    Tresjolie...you asked about an antidepressant...when first diagnosed, I threw myself into a panic disorder. My nurse practitioner friend prescribed Cymbalta because not only is it an anti depressant, but has joint pain relief effects and taxol can cause joint pain. It really helped immensely. I had to stop when starting Tamoxifen because there was an interaction. When I was switched over to Arimidex, I developed a lot of joint pain. Because there was no interaction, and because they are doing studies about using Cymbalta for treatment for breast cancer patients on an AI, my onc put me back on it again. And...it helped a lot for the joint pain. I figured the anti-depressant part couldn't hurt lol.

    Special K and Lago...so I asked my MO about the Breast Cancer Index test. He said no as he didn't trust their reliability. Really annoyed me. I'm trying to figure out how i can get one. He does somewhat believe I should stick with it another five years as he said there is some benefit both for contralateral and distant recurrence. But also said that the side effects need to be taken into consideration.

    He agreed to let me take a 3 month break from Arimidex. Pros...feels like a fog is lifted from my brain. Much clearer...less tired...more energy...few hotflashes and joint pain is better. Cons...haven't lost weight, but my fault, just starting to work out again...still don't fall asleep easily...and some mental worry from wondering if I should continue. I'll decide soon, but wish I could have that test.

    Kattis...glad you are doing well. I chose to do a BMX because I didn't want the worry of the other breast. From a swx standpoint (and sorry if it is tmi), I miss the nipple sensation for getting things going. But I love being smaller. I was always small until after my second child, then ballooned to d's. Never got used to it.

    Ang...great news...I am not saying anything for fear of jinxing until I see my PS and he orders an mri. He does one to check the implants every two years. So I am going to get that scheduled and done and then I will update my NED status.

    I'm so glad to log on and not see anyone with drastic changes.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2017

    I should add that there is a doc on the northside of INdianapolis that is doing the 3d tattoos now. It was on the news a couple months ago. I am all fired up about that!!!

  • e12345e
    e12345e Member Posts: 17
    edited January 2017

    Hi everyone,

    I just got diagnosed with triple pos today and have a lumpectomy scheduled for next week. The surgeon mentioned it really depends on whether or not the cancer has spread to my lymph nodes to determine what course of treatment I'll get.

    What makes this more difficult is the fact that I'm currently ~22 weeks pregnant. I'm hoping that I won't be forced to get a chemo before my baby is born. If there's anyone who has went through a similar experience, I would love to hear your story or connect with you.

    Thank you.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2017

    Hi e12345e!

    I'm sorry that you had to join us here. There was a woman on my July 2014 chemo board who got chemo while pregnant. Her baby boy turned out just fine! Her board name is boxofrockstar. If you use the "Search" function, you can find her and send her a personal message.

    ((Hugs))

  • e12345e
    e12345e Member Posts: 17
    edited January 2017

    Hi ElaineTherese, thank you so much.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2017

    e - she was not triple pos, but another from September 2013 - a thread I participated in to help those ladies, pregnant through chemo, delivered a perfectly happy and healthy baby. If you use the search function on the left hand bar and put in "chemo" and "pregnant" you will find more.

  • e12345e
    e12345e Member Posts: 17
    edited January 2017

    Thank you SpecialK. I'll look for it. So much information to digest.

    I wish everyone here all the best.

  • Marlene18
    Marlene18 Member Posts: 91
    edited January 2017

    e12345e, I was triple positive and 18 weeks pregnant at diagnosis in August 2012. I started chemo (AC) in my third trimester and it wasn't so bad - pregnant women tolerate chemo better because of the increased blood volume. My daughter was born at a healthy 6 lbs 10 oz at 39 weeks. She is part of the cancer & pregnancy registry which monitors her development and she's doing just fine. (I had a lumpectomy at 22 weeks and then continued on Taxol and Herceptin after my daughter was born.)

    I'm actually on maternity leave now after having my second child and honestly, the experience of pregnancy and having a newborn seems just as exhausting as the chemo was during and after my first baby. Moms are tough cookies, you can do this! Feel free to message me if you'd like to chat.

    image

  • e12345e
    e12345e Member Posts: 17
    edited January 2017

    Marlene18, thank you! I'll PM you shortly. Your story inspires me!

  • Musosgirl
    Musosgirl Member Posts: 387
    edited January 2017

    This is a bit random, but speaking of having babies and cancer, if we have had lumpectomies, reductions, and radiation can we breastfeec

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    Hi again ladys,

    I read somewhere on here that if you do not have a complete respons as tripple positive the prognosis looks worse for recurrences.

    So there was no Complete response for me...my tumor was 2,5 cm x 2 cm at removal, instead of the 6,5 cm x 4,5 cm so it has shrunk some but I am still concerned about this.

    I will start the radiation and have started Femara. My Ki65 went down from 35% to 6% so I guess that is good. Not sure what it means. My onc is on holiday so I still have to wait for the entire picture and explanation. If anyone here has some advice I would be so happy.

    Is it true that the prognosis looks worse and why?

    The nightmare continues....

  • sportsmom16
    sportsmom16 Member Posts: 25
    edited January 2017

    Kattis. I am behind you in treatment so don't know all that you know but I know you are scared. I am scared too but everything I read said this is manageable and treatable-- talked to a wonderful oncologist and we are going to be ok.

    Just a lot to take in. Please know that so many of us are on this journey - we are with you. It's scary but you can do it. The numbers are on our side. I am interested in your questions too- hang in there - sending you hope and care.

Categories