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Triple Negative Stage IV

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Comments

  • Adnerb
    Adnerb Member Posts: 727
    edited July 2014

    Thank you, Kelly.

  • surfdreams
    surfdreams Member Posts: 179
    edited July 2014

    Great news, Lostinmo!!!

    Sorry to hear your not so great news, Brenda! Here's hoping that Abraxane will be your magic bullet! 

    My gemzar/carboplatin combo may soon be at an end as well. I've been getting these infusions since March 2013 - then suddenly, midstream through my carbo last Friday, I started having an allergic reaction - breathing got very tight. Hands and feet were burning. Face flushed - my BP and Pulse went way up, and oxygen went down to 88. I've seen the nurses in there rush around for a patient before, but this time, it was my turn. They quickly stopped the carbo and started fluids and benadryl. That got it back under control, but apparently, that often happens - suddenly you become allergic to the carboplatin. My onc. is going to try it again in 3 weeks with benadryl as a pre-med, but I'm already very nervous about it repeating. From what I've read on dr. google - once you have that reaction (which can quickly go into anaphylactic shock or respiratory arrest), you'll remain allergic to it. I've also read though,  that a person can go through a desensitization regimen and then continue on the carboplatin. It involves getting it very slowly over a 24 hour period in a hospital, and then after that - you're desensitized and can have normal infusions again. I'll be talking to her about that prior to the next chemo.  Has anyone else ever had this experience? I don't want to give up on it as it has kept me stable and has been an easy chemo for me thus far - plus, I don't want to blow through a short list of chemos too quickly!

  • Adnerb
    Adnerb Member Posts: 727
    edited July 2014

    Thanks, surf.

  • Bosco19
    Bosco19 Member Posts: 177
    edited July 2014

    hello, I'm new to this thread.  Glad to find other TNs who will understand the fear.

    Background - I was diagnosed with TNBC in Jan 2013.  Tumour grew through neoadjuvant chemo and so I had a lumpectomy in April 2913.  Radiation followed by lots of chemo seemed to work well and a PET / CT scan  and CTC blood test at end Apr 2014 were all clear.  But I was diagnosed with brain mets 6 weeks later in June 2014.  Still clear from neck down.   Had the dominant brain lesion removed 2 weeks ago and just coming to end of 5 days WBRT tomorrow.  Starting Xeloda and Avastin next week.

    I have a 17 year old son who I need to see grow up.  Lost my own mother to cancer when I was 11.

  • Adnerb
    Adnerb Member Posts: 727
    edited July 2014

    Bosco, 

    So sorry you have to join this group, but welcome!!!

    My younger son just turned 18 when he learned of my mets.  It was a very heartbreaking moment, explaining to him that this was different, but I would fight the fight anyway.  It was then that he decided that he would try and get into cell biology because he wants to help me in my fight.

    I hope the xeloda and avastin wipe out what's left of your brain mets!

    Brenda

  • Bosco19
    Bosco19 Member Posts: 177
    edited July 2014

    thank you Brenda.   

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited August 2014

    Surf - I haven't had a reaction to chemo so not much help but sounds like you have a good plan and ask the right questions.

    Bosco - yes we know your fears.     I had a CT scan this week and found the taxol isn't working completely as my nodules have started to increase, but at least there was no new spots or spread.    I am at a standstill until we see if I can get into a trial.    I was so ready for a chemo break but now worried about what's next.   

    Lost - glad to see you back and with some good news.

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hello Everyone,

    You may remember that I was getting my tumour tested with Foundation One.  Obviously this is specific to me but I thought it might be of interest to some of you.   My oncologist was very supportive of getting this test done as he feels mets to the Thyroid are very rare.  The test found that I have 11 genomic alterations:

    FLT3 (found in 2% BC tumors but not understood.  Common in Acute Myeliod Luekemia)
    CCND2 (found in 2-3% of BC )
    CCDN3 (found in up to 50% of BC)
    IGF1R (insulin-like growth factor, found in 4% of BC)
    MYC (found in 15-22% of BC)
    TP53 C135W (found in 23-35% of BC and carries a 18-60 fold increase in early onset BC)
    CDK8 (1.5% of BC)
    ETV6 truncation intron 5 ( <1% of BC)
    FGF23
    FGF6
    KDM5A

    The report gives a detailed description of what each alteration means, I have just given the "highlights" here as it relates to BC.

    It also identified 9 variants of unknown significance including the BRCA2.  I am having a separate BRCA1/2 test done (bloodwork) as there is pancreatic and breast cancer on my mother's side of the family.

    The report identifies 3 drugs that are approved for use in other cancers that have alterations in the FLT3 gene (Ponatinib, Sorafenib and Sunitnib).  The report also identifies 10 clinical trials, 2 of which my oncologist thinks are potentially worth considering - both are Phase 1 trials that include an Antibody/Inhibitor for IGF1R called AMG479.  However given my success so far with carboplatin/taxol I am thinking that I will wait until I have progression again before thinking to seriously about a clinical trial, especially one that is in such an early phase.  I have another CT scan the first week of September.

    I had a headache yesterday from googling so many things.  I am going to put it away for awhile until I meet with my oncologist again but if anyone has a question about it, I'd be happy to try and help!

    Take care,

    Kelly

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited August 2014

    Kelly - so glad you got some useful information and possible treatments. I didn't get as many alterations in genes found with my Foundation One but found it really helpful too.  Glad your current chemo is working.   I have temporarily stopped chemo as taxol wasn't working anymore.     I am going to Vanderbilt next week to consult about their clinical trials, then decide what to do next. 

  • macska-ma
    macska-ma Member Posts: 8
    edited August 2014

    Kelly, its great that now you know more about possibilities of treatment, i can imagine it can give you a lot!

    I am sorry for silly question, but what is name of the test? 

    Hugs

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hi Cat - good luck at Vanderbilt.  There is sooo much research going on now.  I hope they find you something to help.

    Matska-ma - the test is called a genomic profile.  Here is their website: www.foundationone.com

    K


  • macska-ma
    macska-ma Member Posts: 8
    edited August 2014

    thanks! 

    Your insurance covers it?

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hi macska-ma, I got part of it covered.

  • lethe
    lethe Member Posts: 4
    edited August 2014

    I was diagnosed after bilateral mastectomy surgery Aug 1 as stage IV. Earlier that week  we found out it was triple negative and grade 3.

    I can have chemo, and will be talking to my oncologist about that on Monday.

    Just came from the radiation team, and unfortunately my husband was shocked and surprised that I was actually stage IV.  I tried to let him know, but was probably too vague, I said that it's fast growing, and not a good prognosis, but I hadn't said "stage 4" to him because I hadn't had anyone say it out loud to me yet. I just thought it was 4 from my understanding of the path report. I wanted a doctor to tell us directly. What did him in was the radiation team talking about possible side effects and he suddenly realized how rotten things have gotten.

    I am so sad I made my husband cry. 

    I just need to say it out loud somewhere.

    We haven't told any family members yet. Keeping it light. "just breast cancer, just surgery, just chemo" 

    Thanks, sorry I'm not usually such a mess,

     I don't really know what I want from the group yet.

    Dolly

  • Adnerb
    Adnerb Member Posts: 727
    edited August 2014

    lethe, where did your breast cancer spread?  Sorry about your latest developments.

    cat and kelly:  good to hear that the foundation one test has the potential to detect mutations and direct treatments.  Do you have to have an actual tissue sample?  I remember asking this question before.  Sorry if it was addressed to you.  I got the liquid biopsy done and my report sounded really good because it indicated that I had no mutations.  But it was wrong because my scan said I had progression.

    Hugs to everyone!

    Brenda

  • moderators
    moderators Posts: 8,637
    edited August 2014

    Welcome lethe to BCO and we are glad you found us, but sorry for the reason.

    Note: Your Dx details can be added in "My Profile", accessed top right of each page in grey area. (only if you want to thoigh)

    A thread that may be of interest is The Husbands Corner(for family, friends, boyfriends, ect.) - wives post there too . Your husband may even wish to post is such areas as there are a number of caring husbands who occasionally post.

    Don't beat yourself up about making your husband teary as it shows that he loves you and is worried for you, that is the important part to focus upon

    All the best,
    The Mods

  • keldel
    keldel Member Posts: 83
    edited August 2014

    lethe - I am so sorry to hear of your diagnosis.  Don't be too hard on yourself, its very difficult to come to grips with this disease.  It is so hard to say it outloud, even to yourself.  My husband is my best friend and I don't really understand how he is working through all of this, but here we are.  We try to take things one day at a time.  I know its sounds trite, but it works for us.  I wish you a good appointment with your oncologist.  Keep us posted.  (( hugs ))

    Brenda - Yes I had an actual tumor for the sample.  In January I had a swollen lymph node removed from my neck, it was about 1 inch in diameter so they were able to send tissue from that to Foundation One.  Its good and bad to have this information - on one hand it gives me hope that maybe there is something, somewhere that will keep this at bay - on the other hand its turned me into more of an internet research junkie - although at least now I have some things to focus my research on!

  • Adnerb
    Adnerb Member Posts: 727
    edited August 2014

    Kelly,

    I had an enlarged lymph node that yielded enough tissue to be biopsied.  It gave us information on ER/PR/Her2Neu status.  Do you think I can send that same sample to Foundation One?  How much does it cost if I have to pay out of pocket?  I don't think my HMO would approve.  

    I'm on my second line of treatment.  Carbo/Gemzar stopped working.  Doing Abraxane at the moment.

    Brenda

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hi Brenda - I just sent you a private message about this.

    Kelly

  • CarpeVinum
    CarpeVinum Member Posts: 10
    edited August 2014


    Adnerb ~ my bill from Foundation One is about $5,000, however, they are working with my insurance to get it covered. They have submitted 3 requests and if all fail, they do have some kind of financial aid/scholarship type of program in place for patients who can't afford it. Very very nice people at Foundation One.

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited August 2014

    Dolly - sorry you are here under these circumstances, but let us know if we can help answer anything, or just vent here.   We all understand.    I am still trying to put my head around the Stage IV diagnoses too.   Just taking each day as a blessing is helping, as I figure no one is guaranteed another day or has an expiration notice.

    My trip to Vanderbilt went great.  They have a new trial starting and I signed to join.   I have tons of tests to do, and have to go through another biopsy of my neck nodes (twice), which is the worst.   The trial involves getting Cisplatin along with a new drug (PI3K inhibitor) if you get picked to get it, but the nurse hinted I would most likely get both.

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hi Cat - Great news - Good luck with the trial!

  • keldel
    keldel Member Posts: 83
    edited August 2014

    Hi Everyone,

    If you could go anywhere for a second opinion on your stage iv triple negative treatment, where would you choose and why?

    Thanks!

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited September 2014

    Hi Keldel - I went looking for a second opinion with a place/doctor that is doing a lot of research specifically on TNBC.    The first place didn't offer much, but the second, was very helpful and I am in a clinical trial which is what I was hoping for.     Are you going for another opinion?

  • keldel
    keldel Member Posts: 83
    edited September 2014

    Hi Cat

    I have my next scan tommorow and meet with my oncologist next week.  I am hoping that it will show me as stable but I haven't had chemo since June and my anxiety is pretty high.  I have a great oncologist,  I don't think I could dream of a better one. 

    My concern is I am in Canada and the number of clinical trials for TNBC stage iv are zero.  There is one for ovarian cancer using a drug I am interested in (amg 479 an IGF1R inhinitor) but I don't know if / how that might work simce its for ovariam

    If I want to get a targeted treament I think I will need to go to the USA.   I would like to get into a treatment centre or with a doctor that specializes in TN. My husband is determined that something is out there.  If not a cure then at least a way to keep me going until there is one.  So we are seriously looking at all options.  I see you went to Vanderbilt and are getting on a trial (I dont have amplification of P13k).  Vanderbilt, Lifespring (Seattle) and Dana Farber have come up on my research.  But I am interested in hearing things from the "horse's" mouth.

    Kelly

  • lethe
    lethe Member Posts: 4
    edited September 2014

    Sorry to be so slow to respond. 

    I was supposed to start dose dense ACT on Fri, but they cancelled chemo last week, and the doctors are regrouping because the pet scan showed another problem in the parotid salivary gland. I go for a biopsy tomorrow on that.

    Talking about possible more surgery. Maybe to get the rest of the lymph nodes, mammary and clavicle both sides, which showed problems on the pet scan also.

    What put me into stage 4 was I had breast cancer in the left breast, (not the right breast) but the all the lymph nodes they sampled from the right side also had breast cancer. So it's contralateral axillary metastasis. Unusual problem.

    Anyway. for the most part I'm good at waiting, generally, and taking one day at a time is second nature by now.

    I had Hodgkin's lymphoma at age 25,  then thyroid cancer, now this breast cancer (both secondary cancers were caused by treatment for hodgkin's all those years ago). I have lots of problems due to hodgkin's.  I'm 62 now and mostly just worn out tired, and want to be out of here as gracefully as possible. I know it sounds wrong but there it is.

    Maybe that will change. I'm willing to listen and take my doctor's advice. That's as far as I can go.

    Dolly

  • flimsical
    flimsical Member Posts: 19
    edited September 2014

    Cat - can you link me to your pik3ca inhibitor trial?! I searched using the terms cisplatin and pik3 but only found a trial in Korea. WTF? Haha. Thanks in advance. 

    -Lindsay

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited September 2014

    Kelly - I don't amplify PI3K either but the MO said that it is a good choice for tumors that are "basal like" which mine are.  So far, I have gotten 2 treatments of cisplatin and am getting the GDC-0941 inhibitor.   The tumors in my neck seem like they have gone down about 50%!!

    Lindsay - here is the link to the trial.  It is only given at Vanderbilt right now, but the doctor said that more sites are supposed to be added soon.

    http://clinicaltrials.gov/show/NCT01918306

    Dolly - I will pray that you find strength to continue the fight.

  • Adnerb
    Adnerb Member Posts: 727
    edited September 2014

    Hi Dolly,

    Please keep sharing your thoughts and concerns.  Writing and talking do help with anxiety and depression.  I am not a doctor, just someone who has been battling BC for 9 years.  The roller-coaster ride could be very tiring.  There must be something that keeps you happy and occupied.  I have never been known for my cooking, but now that my two boys are living with me, I find that cooking gives me a "purpose" to be up and about.  It's nice to be praised for my efforts.

    Hugs,

    Brenda

  • Carolben
    Carolben Member Posts: 265
    edited September 2014

    Dolly, it doesn't sound 'wrong' to say what you feel.  I'm just gone 60, feel much the same about bowing out gracefully.  At times I feel I would be happy to just go - worn out and tired - perfectly put!!  But I haven't been through nearly what you have and are now, and what can anyone say to make it better?  Just that you don't have to worry about expressing exactly what you feel here, you will find empathy - big hugs xx

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