Metastatic Triple Negative

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Bimmer
Bimmer Member Posts: 248
edited June 2014 in Triple-Negative Breast Cancer
The really bad thing about living on borrowed time, is when you learn the expiration date.
Some of you know this story, but for those that don't, I'll recap.
My wife Diane had surgery about 18 months ago for IDC. They removed a lump from her right breast. As we already knew, she was triple negative. They gave her 15 weekly doses of epirubicin, then 12 weekly doses of abraxane and then 35 doses of radiation. She has one positive sentinel lymph node.
Just a few months later the cancer was back in force. Her first Petscan 8/31/06 showed five 2cm mets on her liver, mets on her right hip and femur, and in her chest.
Over the following months she did a regimen of xeloda and another of navelbine.. The next petscan in March 07 showed all the know mets to have grown and there were new ones as well... Then in April she started taking carboplatin.
We saw a response withing the first week, within a short time we saw mets going down in her neck. Within a few weeks she was alot better. By the final weekly dose of 12 she was alot better yet. Three weeks ago+_ they ran a bunch of tests and scans and declared her to be "no detectable disease".
Last week she found a little lump, dead center between her breasts, about the size of a pea. Overnite it doubled in size. The next day she had a needle biopsy of the lump. It was "positive for cancer".
In just 3 short weeks she went from the joy of "no detectable disease" to the extreme sorrow of "positive for cancer".
She will have her third PETCT scan on Monday 8/20. Also on Monday they will start her on what they call a "metronomic" approach to chemotherapy. They will give her a daily dose of cisplatin daily for five days. And see if there is a response.
From what I understand, there is only a 5 to 10% chance of another remission.
The first remission from carboplatin only lasted for about 18 or 19 weeks.
Needless to say, we are both devastated, again!
I expect her to get very sick from five daily doses of cisplatin. And although we hope for a response, we know the odds are not there..
These latest developments are very disheartening!
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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008
    Dear Bimmer,

    Ahhh...I weep for your wife and you from your pain.

    Metronomic chemotherapy, small doses chronically, may work! It's been known to work! Perhaps too, now is the time for a second opinion from a triple negative oncology specialist. I'm sure soon the wonderful ladies on this board will be in touch. But you and she know best... I will add your wife to my prayers. Please keep us informed, and know you both are in my thoughts.

    Tender
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  • PineHouse
    PineHouse Member Posts: 416
    edited August 2007
    Bimmer,

    I'm so sad to hear that Diane's cancer comes back. Life is just sooo not fair!

    I have been following your & Diane's story, and was overjoyed to learn that Diane went into remission with just 12 weeks of Carboplatin. Myself too is on Carboplatin and currently battling lung mets.

    I believe that cisplatin (I believe it's more potent than Carboplatin) has a good chance of erradicating the new tumor. Difficult it may be, let's not give up. I'm also sending prayers your way...
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007
    Bimmer and Diane,

    Your love is fine, tethered, soft like morning showers on a springtime day with feathery clouds and double rainbows.

    Lofty is the sorrow of this disease. Diane and I dx same time, same lump; same treatment...

    The trip neg is a stinker...sneaky, unknown, and criminal.
    If only we could eradicate it via sending it to the sun's spots never to appear again. Alas, I dream of a perfect world, where love like yours reaches perfection and life soars on the silver wings of an eagle.

    Be well, be loved, and life is beautiful.

    Hearts and prayers to the earth, stars, moon, galaxy, and hope recovery will continue.

    Thank you for the news...albeit what it is;
    take it well, and take care of you as you love to love and be loved.

    Indi
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  • tos
    tos Member Posts: 376
    edited August 2007

    Bimmer I am so very sorry you've had a set-back. I hope and pray the cisplatin will work for your wife.

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  • Traci40
    Traci40 Member Posts: 41
    edited August 2007
    Bimmer,
    I couldn't believe it when I read your post.
    I am so sorry. I keep typing and deleting words.
    I HATE THIS DISEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    I am sorry for you and Diane beyond words.
    I am late finding this post because I've been wollering in my own pity chemo crap. Did you get the results of your PET scan on 8/20?
    Please let us know.
    Traci
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  • Gina_IN
    Gina_IN Member Posts: 3
    edited August 2007
    Brimmer, I sm sorry about your wife and can so relate. In July 2006 I was diagnosed with IDC (triple neg, brca neg, stage 2b/3a, grade 3, node positive). Had chemo, surgery (lumpectomy/axilla dissection) and radiation.

    On July 24, 2007 I was declared NED.

    On Aug 15 (my 41st b-day) I had a local recurrence.

    On Aug 24, I was told the cancer has spread to my bones and liver.

    I really can't understand how all this could happen in a month...total elation, to total devastation.

    I will keep you and your wife in my thougts and prayers.

    Gina
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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited August 2007
    Gina,
    My thoughts and prayers go out to you and your family.
    My 41st b-day was July 23rd. I had chemo on the 24th and then spent the rest of the day with my Dad on his Hospice bed. He passed away on July 27th.
    I HATE THIS DISEASE!!!!!!!!!!!!!!!
    Hang in there girl. Like so many girls in here say.....put up your fists and fight it!!!
    Hugs,
    Traci
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007
    Gina,

    So it goes, the grief and pardon of cancer...never knowing what avenue, the taxi goes to....liverland, bonehead, kidneyville, uterinaccity, and whatever town in the body's systems it choses to digest. Sometimes I wonder, what happens to the excrement of cancer...is it the excreting protonic enzyemes that deliver cancer ups to other regions unable to defend these infiltrating, conquerer's ?

    Is it a demon or an angel which for some reason choose you or I, and anyone available to become the prey?

    Indi
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  • Bimmer
    Bimmer Member Posts: 248
    edited September 2007

    UPDATE: The last time that we saw the Onc, he was apparently beaten and without hope. Over the weekend he went to a BC Seminar in California and came back with some ideas. He asked Diane's permission to go back to her pathology slide from the cancer removed from her breast 2 years ago and retest it for her2/neu overexpression. Well, of course she said ok. When they went to the origional slide and report they did not even have to retest. The results were apparent. She apparently falls into a small subgroup of people that are borderline for her2. Instead of +1 or +2 she is somewhere lower than that. She starts HERCEPTIN on Friday. Hopefull it will do the trick..

    If not PLAN B: Diane signed papers requesting them (The FDA?) to grant humanatarian use of a new drug that is not approved for BC. It is called NEXAVAR. Does anyone know anything about NEXAVAR? If so, write it here or email me with what you know..

    Thanks girls...

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  • watergirl
    watergirl Member Posts: 34
    edited September 2007

    My aunt took Nexavar for nasal melanomia (very rare and lousy prognosis) and tolerated it very well.  The tumor was too large to safely operate on, but after the Nexavar, the doctors were surprised and pleased when it shrank down to a size that would allow them to surgically remove it.  Unfortunately, six months later they learned the cancer spread and she passed away this spring.  I think it gave her at least 9 extra months of time.  I hope the Herceptin is effective and you don't need to go the Nexavar route, but if you do it can apparently help when doctors don't think anything else will.

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Bimmer,

    I'm sure that my dad took Nexavar for his renal cel cancer.

    I just emailed my stepmonster. I'll let you know.

    Hugs, Traci

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  • Bimmer
    Bimmer Member Posts: 248
    edited September 2007

    Everyone please tell me what you've heard about NEXAVAR.

    It is now a kidney cancer drug, but (as far as I'm concerned) it starts being a breast cancer drug this week. Nexavar is not approved for breast cancer. We expect FDA approval for Diane to begin taking NEXAVAR for stage IV metastatic breast cancer this week. It is unknown how the cancer will react. Maybe if we surprise the rotten bastard with something new we'll run him off?

    She has mets in her left hip, ribs, lungs, big time in the liver, the lymph node chain in her chest, her neck, and who knows where else.

    Is this just a waste of life? Or will it do some good?

    Opinions?

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008

    I understand Nexavar is considered a small molecule therapy, of the anti-VEGF family. It's also called Sorafenib. These are the next line of biologic therapies, working at the molecular/cell level.



    I ran a PubMed search on Sorafenib along with breast cancer, and came up with nothing specific.



    But I did come across a review of trials for renal cell carcinoma, which I think may help you, Bimmer. Side effects most commonly were diarrhea, rash, fatigue, and hand-foot skin reactions were the most common adverse events associated with sorafenib. Hypertension and cardiac ischemia were rare serious adverse event.



    This article talks about the best maximum tolerated dose, and dosing schedule (400 mg bid, I think in renal), as well as cross reactions with other drugs, it may give you a heads up on what to expect.



    Here's the link: http://theoncologist.alphamedpress.org/cgi/content/full/12/4/426



    Title: Safety, Pharmacokinetics, and Preliminary Antitumor Activity of Sorafenib: A Review of Four Phase I Trials in Patients with Advanced Refractory Solid Tumors



    It's main effect seems to read as disease stabilization, so perhaps that will allow the Herceptin time to work.



    One question, has Diane been found to be Her2+ or neu+ now?



    Hope this helps some, Bimmer. Let me know if I can look around more for you or help in any way.

    Tender

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    I wanted to bring this back up to the top.

    Bimmer, how are you doing?

    Gina, how are you doing?

    I hope you are both o.k.

    Traci

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  • Bimmer
    Bimmer Member Posts: 248
    edited September 2007
    New developments, none really good. But now they say that Diane fits into a small subcategory that has extra copies of the #17 chromosome. This makes her her2/neu overexpressed, at least that's the way our Onc see's it. He admits that 95% of Oncs would not see it that way. So I guess now she's not triple negative anymore, sort of..... Anyway Traci, please see my latest contributions  in the category of "Metastatic Disease".. Email me if you want crsnipes@juno.com...
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007

    Bimmer and Diane,

    #17 chromosome...her2/neu overexpressed, and all of these numerous subcategory specials! Would one not feel "extraordinary" if it was not an illness.  With several rare genetic malfunctions in my familial herditary lineage, many physicians often would begin with, "my, you have to feel "special" since you are only one in billion-trillion people with this genetic profile..."

    What? Are we supposed to feel lucky or something? Why didn't the tests show this #17 chromosome earlier, and I can't remember; was Diane tested for the BRAC 1 and 2? 

    I was reading about some potentially life saving drugs using gemzar and doxil.  If the oncologists can find the mutation, there are many of the new molecular altering bio therapies; I haven't been reading as much about the new meds; trying to stay sane and reading about the everchanging cancer views is truly a balancing act.  Stay well.

    Keep your love and sanity, stay positive, and let us know how it goes. 

    As I always say, the more I know about this disease, the less I know about it...just get to know the linguistics and the science of cell structure in it's most infinite, elegant format.

    Be well, be loved, autumn sings the songs of summer's ocean breezes.

    ((hugs))

    Indi

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  • marytjam
    marytjam Member Posts: 9
    edited September 2007

    HI Bimmer and Diane,  This is your sister in Atlanta. Thanks for sharing this website with me.  I'm glad that you have some support in this way, especially since I am so far away and can't be there to help you both through this awful part of your lives. Everything I know about breast cancer I learned from you. Yet, I still feel totally inadequate when reading these discussions.  I know that Diane is not responding well to the Nexavar and she feels worse day by day.  I'll save this site and check it regularly in addition to our emails.  I love you both very much.   Mary 

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  • twink
    twink Member Posts: 1,574
    edited September 2007
    Thinking about Diane.  A little good news would be nice just now.
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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Mary,

    It makes me very, very happy to know that Bimmer has a sister that loves him.

    I am so sorry about Diane. I, and so many other girls on here, have the same diagnosis as Diane did originally. It is very sad and, very scary to know that her treatment is failing her.

    Please know you are in our thoughts and prayers.

    Sincerely,

    Traci

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