D#$% so close to NEDS...

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FloridaLady
FloridaLady Member Posts: 2,155
edited June 2014 in Triple-Negative Breast Cancer
D#$% so close to NEDS...
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2007

    For ladies who don't my history...I was diagnosed two years ago with a large triple neg tumor that moved over the last sixteen months to skin and than my other breast and than a recurrence on one side and than the other.  I had two mast. and also a third surgery on my chest wall.  Total of 54 nodes positive for bc. Yes I did write 54. I have taken 7 different chemos with a total of 25 treatments in sixteen months.  I have been to three different clinic's including MD Anderson Houston.  To say the least I have been around the block. (I was given 3 to 6 mths to live at the beginning) I chose to stop treatment after really bad side effects to my trial at MD Anderson. (Very bad neuropathy) My only bad side effect too all the chemo I have taken.  I feel great and have continued to use natural medicine to help restore my body.  I have no fatigue and I'm not taking any meds for any condition at this time.  I have worked through out my treatment.

    Well...Today I went back to get my PET results after 6 months without chemo.  I had one lymph node deep in my chest wall that has been there for 6 months and will not go away.  (But it not growing either!)

    My wonderful local doctor said let's just wait and see for another three months before we jump.  I can't believe I have gotten to the point I willing to live with knowing I have bc and not rushing to get more treatment.  Thankfully my bc stays local and I have time to catch my breath.

    My local doctor as been cutting edge from the beginning.  We had a talk while at this appt about the flak he got for mixing my chemo's differently other than standard protocol.  A year later I see other ladies trying to get into trials for drug combo I used over a year ago outside of trials.  He did say this time he had new drugs available that wasn't even around 3 months ago.  My problem is with advance neuropathy you just accumulate more toxicity and I don't know if I will do that again.  It's been six months and I still can't drive or button my shirt or wear my sandals and this is a big problem in Florida.

    I have learned the art of waiting.  One of the many things cancers teaches us.

    I'm going to take these three months of no treatment and continue to hit it hard naturally and hope for the best.  And just be glad that my aggressive bc likes to stay locally... at least for now.  With new drugs for triple negs in Phase I only, I'm willing to wait and let them find out more info on what works and what doesn't.  I'm done being a large rat for the medical community.

    Merry Christmas to all and a blessed New Year.

    Living in hope.

    Flalady

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

    Dear Flalady,

    Wow....what a story. You have been around the block. I met a lady in my gyno/onc office that was dx 6 months ago with Stage III ovarian cancer. She decided to go the all natural route. She was there for the results of her 6 month scan. She looked really good. I'll probably never see her again but, she sure was confident.

    I am very curious to see how you do. When I decided to take chemo, an ex-relative thought I was crazy. When I had a double mastectomy, she thought I was a freak. When I decided on the hysterectomy (trip neg, brca 1+) she called me stupid in addition to a 100 other things, in a mile long email that just went on and on.

    She said, I could cure myself naturally. She truly believes it. She's into all the oils and herbs and all of it. I however, am on a strict budget and am doing what has kept my sister alive for 10 years. If I had the means to do all the natural stuff, you can bet your you no what, I would.

    I hope with all of my heart and soul that it works for you girl and, if I may be so bold, I would like to give you my regular email address just in case we lose track of each other on this forum. traci@oceanliferealty.com

    Sincerely,

    Traci (also a Fla lady....Palm Harbor here)

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



    FlaLady,



    Well you know I'm one of your great admirers! I've followed your posts with fervor and zest, as I truly believe you went for it with great courage and will continue to do so. So phooey to that one node: maybe it's just not quite burnt out yet, or in quiescence and hence showed on your PET. But think how your last surgery took down the cancer!



    I must compliment too your local oncologist. Please tell him I compliment him, for being foresightful in his choice for you given your rather particular localized presentation of a triple negative cancer. It's good he has more knowledge on his mind, but better yet if it always can be held in reserve.



    Thank you for always sharing your story with us. You are a true mentor, a true hero to me. And you are at peace with yourself in a hailstorm of disease which upsets my apple cart.



    Traci Walters,

    I see you and Flalady as a tandem. Your courage to walk your medical path was great: the unnerving and hurtful comments from an ex-relative added only pain. I am always amazed at those who do not have breast cancer (or cancer) judge so harshly those of us who do. Unless you are a member of the club, imo, few can truly understand the hardship posed. It hurts us mightily to be labeled, ridiculed and dismissed as crazy. Trust me, I've been on the receiving end too for my aggressive posture, but at night when I lay my head down I can sleep with myself and for my children and spouse with a clear mind.



    Two Wonderful Florida Sisters! May you both enjoy your holiday merriness, may the sun shine bright, and may you feel my arm reach down from the north to give you a hug for being heroes!



    Tender

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  • badboob67
    badboob67 Member Posts: 2,780
    edited December 2007

    Flalady,

    WOW! 54 nodes positive....you are the first person I have read about that had more positive nodes than I (24). You've been through the wringer, haven't you? How wonderful that you are feeling well (with the exception of the neuropathy) and are so hopeful. It sounds like your onc is going above and beyond; we should all be so blessed!

    I hope that your chemo break will allow you to "bounce back" and lessen the neuropathy. I am wondering if you might find benefit with "Lorenzo's Oil" as it seemed to prove effective with rebuilding myelin around nerves. (My nephew has a condition that effects the myelin on his nerves; I did research for that many years ago and was intrigued with the story of "Lorenzo's Oil"). I have absolutely no information as to how it might impact someone with cancer, but it might be something for you to research and ask your onc about. It was my understanding that there are very few negative effects, but it would certainly be important to be sure that you don't do more harm than good.

    I will keep you in my prayers!

    (((HUGS)))
    Diane

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  • Sofie
    Sofie Member Posts: 23
    edited December 2007

    Hi Flalady,

    Hope these 3 months will see an improvement in your neuropathy problems. Our bodies take time to detox even from the onslaught of normal accumalation of pollutants, what more 16 months of chemo. So yes, give it time and stay positive as always Smile 

    Counting the days,

    Sofie

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2007

    Thanks everyone for your support.  Tender you're the best. Wishing you a great holiday season.

    Traci-I to got a lot of negative feed back for doing chemo from my friends and relatives.  We new up front I had very aggressive bc when it triple in size while on ACT before first surgery.  It was amazing how many people thought I had time to waste while trying to learn natural medicine.  I new I wanted to do both.  I started chemo and continued to read very thing I could for natural meds hoping I would have a chance to use it.  Even though I did not get a lot of the normal side effects to chemo, I though they would change their mines that chemo was not all bad.  Nope!  They forgot it all after they watched me barely able to walk and feed myself after the Phase I trial and the neuropathy.  (How could the top cancer center do this to their love one who as been OK up to this point? And of course it did not work.)

    I have learned that if your chemo resistance for standard chemo's you more than likely will not have a lot of response to new drugs.  Well...I got to do something.  There are some inexpensive things you can do for natural rehab if you like?  I see your single too...Thank God I don't have to have a roommate.  But I have a great dog.  I actually had to refi my mortgage to do natural stuff and pay for MD Anderson trips.  But I thought my health was more important than having a house (That I Love!).  Hopefully I will not loose it.

    Badboob- I will research the oil.  Thank you. I just had someone recommend a lotion that does a good job.  My nodes were 27 right, 24 left and 3 chest wall 3rd surgery.

    Living in hope,

    FlaLady

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2008

    Update

    I asked for copy of my last (12/28/7) blood work and Pet scan last week for my file.  I keep a notebook on my treatment to reference back too.  It's came in handy so far.  Anyway...I my blood was perfect in all areas.  And my tumor marker fell from 19 to 17.  Not much but I WAS NOT TAKING ANY CHEMO for the past six months. 

    I fined it amazing doctor can share every bit of bad news and not rejoice in our small victory's.

    Living in hope,

    Flalady

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited January 2008

    That's great news Flalady. Your persistence and your positive attitude is an inspiration to all of us. May the tumor markers keep going down for you. Warmly, Christina.

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    Well here's hoping you don't get D#$% close, but get all the way there. An incredible story.

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



    Dear FlaLady,



    What wonderful news! I'm sure you're just dancing a jig.



    All the hard work on your part seems to have paid off.



    You are one admirable lady (as are ALL of our ladies and men here with this dastard disease)!



    Thanks for updating us. Maybe you can celebrate by taking a day in the Florida sun.



    Tender

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2008

    Oops...one more update.

    I'm driving again!  Just be glad you don't live near me.Laughing

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  • Watson
    Watson Member Posts: 1,490
    edited January 2008

    Woo Hoo!

    Just keep your  hazard flashers on and have your own personal parade when you go out for a drive!

    Watson

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    You're in Florida? How will they be able to tell you from all the other weird drivers on the road? Put on a gray wig & nobody will look twice ...

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    That is great news! Cheers to celebrating ALL our victories large and small!

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