Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Podcast: Hope After a Triple-Negative Diagnosis

1…5681011…21

Comments

  • journey4life
    journey4life Member Posts: 223
    edited December 2012

    Cheryl - great news!

    Lauren - how did your appt go? Are you a little less apprehensive? What can we do to help?

    Debbie - I'm so sorry about your lung mets. I hope it'll help you to know that my neighbor was Stage IV, TWELVE YEARS AGO! So there is hope. It's stories like hers that we all cling to as our inspiration to keep fighting.

    I hate cancer!

  • Lauren15
    Lauren15 Member Posts: 52
    edited December 2012
    • That is GREAT news!  From what I can tell, I'm going to start Chemo shortly before any surgery to see if it shrinks or possibly goes away.  I'm having a PET scan on Wednesday and am praying it has not spread!  I really want to keep working when I start chemo butI also want to get rid of the cancer asap.  Any recommendations?
  • FernMF
    FernMF Member Posts: 274
    edited December 2012

    I worked the two weeks in between chemist treatments. Chemo' on Tuesdays, off the rest of the week, work the in between weeks. That worked out o.k.

  • Lauren15
    Lauren15 Member Posts: 52
    edited December 2012

    Hi FernMF - Would you have been able to work the Wed-Fri after treatment if you were working from home?  How did you feel?

  • FernMF
    FernMF Member Posts: 274
    edited December 2012

    Lauren. Probably. I did not nap, I didn't really feel sick. I was weak and was not able to drive the half hour to work, work 8 hours, and drive home. But if I had a work from home job I would have been able to do that. Good luck.

  • Lauren15
    Lauren15 Member Posts: 52
    edited December 2012

    Thanks Fern - good to know.

  • Lauren15
    Lauren15 Member Posts: 52
    edited January 2013

    Happy New Year to everyone!!!!

    I'm going to start chemo in the next week or so and will find out more after my PET scan, MRI, and BRCA test.  Surgery will be done one month after the treatments are done. 

    My question to all of you is - do most triple neg dx individuals have double mastectomies?  If there is such a high chance of recurrences, wouldn't it just be better to raise the stats by having both removed?  What did you all do and the reasoning behind it?  i know it's premature for me; however, I want my plan mapped out in my head . . . THANKS!!!

  • FernMF
    FernMF Member Posts: 274
    edited January 2013

    Lauren.. I didn't realize the seriousness of the TN ... surgeon did not talk about it. Took a long while after surgery to get to the oncologist. So, my reasoning for BMX was very simple. I had very small breasts. A lumphectomy would have mangled my breast, leaving very little breast tissue. So I chose to have MX. And since I did not want reconstruction, I chose BMX. Least amount of recovery, down time, pain, hospital time, etc. Look on flat rant, a thread in this forum, to get an idea of the questions you should ask your surgeon, so that the surgical site looks as close to what you expect. I am nearly 8 months since surgery. Still happy with my decision for BMX.

  • Lauren15
    Lauren15 Member Posts: 52
    edited January 2013

    Hi Fern,

    Thanks for letting me know about you.  I am definitely going to get reconstruction with whatever I do.  I already had implants and a lift 5 years ago for asthetic reasons and have been happy.  Personally for me, I need to get back to as normal as I can.  Of course getting the cancer out is PRIORITY ONE!!!!! 

    For all of you out there in this group, please let me know what you did and your thoughts/reasons.

    THANKS!!!!!  Lauren

  • dayzoo
    dayzoo Member Posts: 15
    edited January 2013

    Hi all.... I've been lurking for a while.  I figure it's time to start posting.

    I was diagnosed with TN in Feb 2009, when I was 37.  I had a lumpectomy, chemo (TAC x6) followed by 28x radiation.

    November 2012 (almost 4 years, dammit) found another lump in the same breast.  Had simple mastectomy Dec 2012. Start TC x4 chemo next week.

    I'm freaking out.  I see lots of long time survivors on here, but like me, often when you're done all the treatments, you just want to go on with your life and not think about cancer anymore, so don't come back and post, unless there's a problem.

    Once my chemo is all done, I plan to start reconstruction, and possibly prophylatic mastectomy on my left side.

    One step at a time.

    I sailed through chemo my first time, and I'm hoping I will this time too.

    BTW, I had genetic testing done after my first diagnosis, and my results were 'inconclusive'.  Hoping to get retested, and get some answers.  I have two daughters, ages 11 and 13, and a son, 9.

    Anyways, congrats to all the survivors, and all the best to everyone going through this...

    Angie

  • FernMF
    FernMF Member Posts: 274
    edited January 2013

    So sorry for the horror of recurrence dayzoo. I have no wisdom to offer. Here's a hug. Check out the TN discussion board from the UK. Sylvia on that board has MUCH information that is helpful, hopeful and supportive. Good luck. Post anything and I'll try to answer...

  • sheropesem
    sheropesem Member Posts: 3
    edited January 2013

    I am 38 also, triple negative with 2 kiddos. Very scary stuff, but we can DO THIS. will be praying for all of you.....

    Robyn

  • dayzoo
    dayzoo Member Posts: 15
    edited January 2013

    Thanks everyone...this is such a great place for encouragement, and wisdom...

    I'm getting nervous about the Neupogen shots...is it common to get them during TC?  It seems to me like there's lots of SE's from that as well.

    Time to do more research.  My oncologist is going to be getting a big list of questions from me on Thursday!  Laughing

    Angie

  • FernMF
    FernMF Member Posts: 274
    edited January 2013

    Dayzoo, is neupogen a white blood cell booster? Or a chemotherapy? I had neulasta the day after chemotherapy each round. It helped my blood counts keeping them up so that I didn't catch any viruses. I worked throughout my chemotherapy.

  • placid44
    placid44 Member Posts: 179
    edited January 2013

    Aggressive Breast Cancer's Metastasis Molecular Switch Identified



    Scientists at Weill Cornell Medical College have discovered the molecular switch that allows aggressive triple negative breast cancer cells to grow the amoeba-like protrusions they need to crawl away from a primary tumor and metastasize throughout the body. Their findings, published in Cancer Cell, suggest a novel approach for developing agents to treat cancer once it has spread.



    "Metastasis can be lethal, and our findings point to potential targeted treatments to stop the spread of this aggressive breast cancer," says the study's senior investigator, Dr. Vivek Mittal, an associate professor of cell and developmental biology and director of the Lehman Brothers Lung Cancer Laboratory at Weill Cornell Medical College.



    According to researchers, if such agents were developed, they would perhaps be the first to specifically treat cancer metastasis, importantly in patients whose tumors have already spread. They would also be among the first designed to restore the function of a microRNA (miRNA), a small, non-coding RNA that regulates gene expression, which is crucial to cancer spread. While distinct miRNA "signatures" have been found for many tumor types, including different breast cancers, their specific roles in later steps of cancer metastasis has been unclear, Dr. Mittal says.



    In the study, researchers set out to identify a miRNA that impacts metastasis without affecting primary tumor growth, as well as address its underlying molecular mechanisms and therapeutic potential against metastatic breast cancer. They discovered that a miRNA known as miR-708 is inhibited in metastatic triple negative breast cancer. They found that miR-708 acts as a metastatic tumor inhibitor, and when its function is restored, the tumors do not spread or form lethal macrometastases.



    Silenced miRNA Inhibitor Molecule Can Be Switched Back On



    Triple negative breast cancer has the worst outcome of all breast cancer subtypes because of its high recurrence rate and metastatic spread. This is why the research team chose to examine the role of miRNAs in the spread of triple negative breast cancer, which accounts for 15-25 percent of all breast tumors. The cancer is named "triple negative" because its tumor cells do not display two hormone receptors (estrogen and progesterone) or HER2/neu growth factor, which each form the basis of current targeted breast cancer treatments.



    Using genome wide miRNA sequencing, Dr. Mittal and his research team found in human samples of triple negative breast cancer that miR-708 was significantly down-regulated with its normal expression curtailed. In both laboratory cells and in animal studies, the researchers identified that the normal role of miR-708 is to suppress the protein neuronatin, which is located on the membrane of a cell's endoplasmic reticulum -- an organelle that stores calcium. Neuronatin helps control how much calcium leaves that organelle.



    "It is calcium that provides legs to cancer cells to help them escape a tumor. So miR-708 acts as a suppressor of metastasis by keeping neuronatin in check," Dr. Mittal says. "If miR-708 is itself suppressed, there is an increase in production of neuronatin proteins, which then allows more calcium to leave the endoplasmic reticulum and activate a cascade of genes that turn on migratory pathways leading to metastasis."



    Researchers found that delivering synthetic miR-708, carried by bubbles of fat, blocked metastatic outgrowth of triple negative breast cancer cells in the lung of mice. This makes miR-708 a promising therapeutic against metastatic breast cancer. The researchers also discovered that polycomb repressor complex proteins are responsible for silencing miR-708. These proteins remodel the way DNA is packaged in order to epigenetically silence genes.



    Dr. Mittal adds that the findings suggest that pharmacological agents now being tested in lymphoma cancer cells may also help to restore miR-708 in triple negative breast cancer. These drugs are designed to inhibit histone-lysine N-methyltransferase EZH2, the member of the polycomb group that directly silences miR-708.



    "It is exciting that there are now drugs that can turn off the silencing of these critical genes. They could very well work for this aggressive breast cancer," says Dr. Mittal. "Finding that there may be a way to shut down the spread of an aggressive breast cancer -- which is the only way that triple negative breast cancer can be controlled and lives spared -- is very promising."



    These study results are terrific," says co-author Dr. Linda Vahdat, director of the Breast Cancer Research Program, chief of the Solid Tumor Service and professor of medicine at Weill Cornell Medical College and medical oncologist at the Iris Cantor Women's Health Center at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "It not only offers us an avenue to treat metastatic triple negative breast cancer in the short-term, but also gives us the roadmap to prevent metastases in the long-run. We are anxious to get this into the clinic and are working as quickly as possible towards that end."



    The study was funded by the Neuberger Berman Lung Cancer Laboratory, the Robert I. Goldman Foundation and the Cornell Center on the Microenvironment and Metastasis through an award from the National Cancer Institute.



    Other study co-authors include Dr. Seongho Ryu, Kevin McDonnell, Dr. Hyejin Choi, Dingcheng Gao, Mary Hahn, Natasha Joshi, Dr. Sun Mi Park, Dr. Raul Catena, Jacqueline Brazin and Dr. Randi B. Silver from Weill Cornell Medical College, and Dr. Yoonkyung Do from Ulsan National Institute of Science and Technology (UNIST), School of Nano-Bioscience and Chemical Engineering in Ulsan, Korea.



    Weill Cornell Medical College

    Weill Cornell Medical College, Cornell University's medical school located in New York City, is committed to excellence in research, teaching, patient care and the advancement of the art and science of medicine, locally, nationally and globally. Physicians and scientists of Weill Cornell Medical College are engaged in cutting-edge research from bench to bedside, aimed at unlocking mysteries of the human body in health and sickness and toward developing new treatments and prevention strategies. In its commitment to global health and education, Weill Cornell has a strong presence in places such as Qatar, Tanzania, Haiti, Brazil, Austria and Turkey. Through the historic Weill Cornell Medical College in Qatar, the Medical College is the first in the U.S. to offer its M.D. degree overseas. Weill Cornell is the birthplace of many medical advances -- including the development of the Pap test for cervical cancer, the synthesis of penicillin, the first successful embryo-biopsy pregnancy and birth in the U.S., the first clinical trial of gene therapy for Parkinson's disease, and most recently, the world's first successful use of deep brain stimulation to treat a minimally conscious brain-injured patient. Weill Cornell Medical College is affiliated with NewYork-Presbyterian Hospital, where its faculty provides comprehensive patient care at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. The Medical College is also affiliated with the Methodist Hospital in Houston. For more information, visit weill.cornell.edu.



  • Lauren15
    Lauren15 Member Posts: 52
    edited January 2013

    WOW!!!! Thanks for posting that. Sounds promising :-)

  • Nikkev11
    Nikkev11 Member Posts: 1
    edited January 2013

    I initially had a lumpectomy with positive lymph nodes. I then had a left breast mastectomy with 8/14 positive lymph nodes. I then had 6 cycles of chemo. During my second administration of chemo, I had an allergic reaction and my veins were burnt. I completed my chemo and started radiation. I was scheduled for 33 and ended with 38. During radiation treatment, 2 nodules appeared on the left chest wall. They were biopsied and both are cancerous. I am TN and was informed that I will have to take another round of chemo. Yippee just what I want. I will meet with my oncologist tomorrow and breast surgeon on Tuesday. I am a firm believer that God has my situation under control. Just doing a little releasing.

  • FernMF
    FernMF Member Posts: 274
    edited January 2013

    Nikkev11:  OMG, so sorry to hear of your struggle.  My "story" is slight, as compared to you.  I feel sorrow, AND HOPE for you . . . because I believe God IS in control of my life - and it sounds as if you are of similar faith.  7 1/2 months since surgery I am NED . . . and I have done "all that I can do" medically.  I am attempting to alter my life style choices to augment the health that I have.  I truly believe that after doing "all that I can do", God is in control.  He either wants me here or doesn't, and I can rest in that.  I remind myself frequently "I am here for a reason - what might that be 'today'."  May God and family wrap their arms around you with reassuring peace today, Nikkev11.  (((HUGS)))

  • Missy123
    Missy123 Member Posts: 10
    edited February 2013

    Hi Angie,

    Don't worry too much about the Neupogen shots.  I've had to do them twice.  The first time was three years ago when getting chemo for ovarian cancer, the second time was last year while undergoing treatment for breast cancer.  They now come in pre-filled syringes so all you have to do is take the cap off the syringe and administer the shot, no more filling the syringe from the vial yourself.  The oncology nurses will teach you how to do it.  I have not had any negative side effects from the Neupogen injections. Smile

  • FernMF
    FernMF Member Posts: 274
    edited February 2013

    I did NOT have negative side effects from the Neulasta shot either.  They were administered by the oncology nurse, the day after each round of chemotherapy.  Those shots WERE expensive - - pre-insurance cost was $4,800/shot. . . . 

  • shadytrake
    shadytrake Member Posts: 69
    edited February 2013

    Holy cow, Fern!  I am so glad my insurance covers 90% of everything. 

  • FernMF
    FernMF Member Posts: 274
    edited February 2013

    I know. Each round cost $11,000.....that's right folks...pre-insurance ...four rounds = more than my yearly salary!!!!! My insurance was/is great and my out of pocket Max is $6,500/year....which we met in 2012. :):):)

  • Meggy
    Meggy Member Posts: 74
    edited February 2013

    I'm just a few days over 5 years!!!!!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited February 2013

    MEGGY - Congrats! You look amazing, and so healthy!  I'm so proud of you, and so happy to hear your news.  Thank you as well for helping me in my PMs with all the questions I have ever asked you.  You have a great gift of helping others, and thank you for showing us that we can get through this together.  

  • journey4life
    journey4life Member Posts: 223
    edited February 2013

    Congrats, Meggy! You are an inspiration to all of us, giving us hope that we too will get there. Thanks for sharing and please come back often!

  • teresa008
    teresa008 Member Posts: 47
    edited March 2013

    Hi all,

    I saw my oncologist today and she has told me about a study that she wants me to think about. It's a two-drug versus three-drug study. The two drugs would be Taxotene (sp?) and Cytoxan and the three drugs would be Adriamycin, Taxol and Cytoxan. I won't know which option I will end up with until I am accepted into the study. Any opinions on one or the other being better? If I don't want to do the study she wants to do the three drug option. I need to have an answer by Monday so any opinions would be appreciated.

    Thanks so much.

  • FernMF
    FernMF Member Posts: 274
    edited March 2013

    I saw two oncologists before beginning chemotherapy - both had the same options for my Stage I, TN BC.  The three drugs you mention are what were offered, 4 rounds, three weeks apart.  I did NOT do the Adriamycin - that particular medication is known to affect heart muscle, and is not prescribed for persons (like myself) with an underlying heart condition (I have an ascending aortic aneurysm and associated aoritc valve problems).  The oncologist said that the efficacy is nearly the same, so the two drugs would be sufficient to halve the potential recurrence of TN BC.  His numbers were taking the recurrence rate from 18-20% down to 8-10%.  So, I am nearly 10 months "NED" (no-evidence of disease) - as I count it, because 5/7 was my BMX date.  The chemotherapy regimen was not fun, wouldn't volunteer for it, BUT all-in-all was not even 20% as awful as many posts that I've read on these message boards.  I am grateful.  Living healthy now.  Hair is growing at a good rate, eyebrows and eyelashes are mostly back . . . and except for a flat chest, I feel like my "old self."  GOOD LUCK TO YOU IN YOUR VENTURE.  These drugs are "tried and true," been around for a long while, many have NED for many many years . . . so rest assured you are in good hands.  Kiss

  • journey4life
    journey4life Member Posts: 223
    edited March 2013

    I had DD Adriamycin/Cytoxan every two weeks for 4 courses and then DD Taxol every two for 4 courses. I haven't had any heart problems with Adriamycin and my SEs for all tx were manageable. Be sure to let us know what you decide.  

  • teresa008
    teresa008 Member Posts: 47
    edited March 2013

    Hi again,

    I have decided to just do the three that my oncologist is suggesting. I'm not a kid and I can be patient and give myself the best shot I can at still living a long life, enjoying my grandkids. It was a very hard decision, though. I got my port in yesterday and will start my chemo next Tuesday.

    Take care all and the best of luck to you.

  • nicoleaustralia2012
    nicoleaustralia2012 Member Posts: 1
    edited March 2013

    Hi everyone,

    i have been reading your blogs and thought i would give the aussie version of treatment for TNBC. Its the same here as well. I was 42 when this lump the size of an olive arrived overnight and i  had a lumpectomy in the left breast Sept 2012 and then started chemo 6 weeks later which finished a week ago having changed from fortnightly to weekly as Paclataxol was a bit savage, so that extended things a bit. Tomorrow i go for my radiation scan with my concerns being my heart and the issues it can bring on 10 years down the track (anyone else have those concerns?) They have informed me that i will have 6 weeks of radiation ( if i go ahead) and will live away from family for that amount of time as it is not available in my town ( a country girl). I am extremley shocked to read how much it has cost some of you to have your treatment !! That seems to be the only difference in treatment, our cost is nearly zero, just nausea medication $70 per fortnight. I have not met any Aussie's with TNBC, so its nice to read blogs from others in exactly the same boat as i am. Anyway, about to start the dreaded weight loss as i have put on a LOT of weight during chemo and need to move it on and away :) I actually got on this site as i was googling the facial hair issue ( i feel like the beared lady at the circus) and its comforting to read i am not the only one with this issue :) Well, good luck to you all and may good health surround you and chemo brain be gone very soon. Nicole xx

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.