Annual Update - Still NED!

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LindaLou53
LindaLou53 Member Posts: 929
edited June 2014 in Stage III Breast Cancer

Just wanted to post the news that I had my annual CT scan and visit with my onc last week.  CT came back NED, labwork and tumor markers are all good!  

Had my last Zometa IV infusion so that makes 11 doses total over the past 5 years. Will continue on Aromasin indefinitely, I hit my 5 year mark on it this past April.  My onc decided not to bother taking me off for a month and then doing estradiol levels because she feels so strongly that Aromasin offers such ongoing protection she really wants me to continue on it.  Other than the hair thinning I tolerate the Aromasin well and have no problems staying on it.

My repeat Vit D level dropped slightly to 29 after being a 34 in January following the high dose prescription Vit D3 last year. My original level was 18.  Normal range is 30-100 so I will be taking another round of prescription Vit D3 for 3 months and recheck levels again.

My onc (who I LOVE because she is always PROACTIVE instead of REACTIVE to my care) has suggested I consider starting on Metformin oral dose next year if the the current study data continues to hold up.  I am not diabetic and have no problems with my glucose levels, but the study data is very encouraging that Metformin may well have anti-tumor properties for many different types of cancer including breast, lung and colon.

Here is the current study trial info:  http://www.cancer.gov/clinicaltrials/search/view?version=healthprofessional&cdrid=669788

Here is a BCO thread on the subject also:  http://community.breastcancer.org/forum/79/topic/757520   (you may have to copy/paste this into your browser's URL window)

As always I ask my onc how long I need to be NED before she and I can both breathe easy.  She says I am already at a good spot being almost 6 years out, but with the slower growth rate of grade 1 ILC and my nodal involvement she feels making the 10 year mark will be most significant.

I am feeling good about where I am now and have every hope to be celebrating that 10 year mark in 2015!

I hope this is an encouragement to those just starting out with their dx and treatments.  There IS life after BC!  Don't get bogged down in the statistics.....statistics would have had me down for the count years ago!  

I do realize that life changes in an instant so try to be prepared for whatever is waiting around the corner....but that doesn't mean I have to give up my TODAY worrying about what might be!  As my loving grandfather always used to say...."you have to make hay while the sun shines!"  I am very thankful for today!  Smile

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Comments

  • diana50
    diana50 Member Posts: 2,134
    edited July 2011

    good for you** so happy you posted and you are doing well*

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited July 2011

    LindaLou!!!!

    Thank you, God bless,and keep on dancing with NED,  He's such a great dancer!!!!!!!!!!!!!!!!!!!

    Steph

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  • sushanna1
    sushanna1 Member Posts: 764
    edited July 2011

    Congratulations.  And thanks for all of your helpful posts over the years.  I really appreciate all of your efforts to document things for newcomers to the Lymphedema thread.

    Sue (Stage IIb)  

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited July 2011

    Thank you for posting this!!! Celebrate Life!!

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011
    Hi LindaLou,  I want to thank you so much for this post.  Congratulations on your 6 year anniversary!  I will be going to see my oncologist in a few weeks for my 6 year check up.  My oncologist also has decided I need 5 years of Zometa, and he started me on Metformin and continued me past 5 years on Femara at my last 6 month check up, although I am not diabetic either.  Most of all I feel your optimism, hope, and courage.  It is contageous. Hugs,  G. Laughing
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  • SharonMH
    SharonMH Member Posts: 353
    edited July 2011

    Hi LindalLou, Congratulations on your 6 year anniversary. I love hearing good news like that. SharonH.

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited July 2011

    Hi Lindalou,

    Congrats to you! My onc won't put me on zometa because she says my bones are good. I have a dexscan in Sept, and we will see then. I am considering changing oncs if she will not put me on it. 

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  • elmcity69
    elmcity69 Member Posts: 998
    edited July 2011

    congratulations, Lindalou! awesome news! so happy for you.

    hope you do something special to CELEBRATE!

    hugs

    j

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited July 2011

    Congratulations....what an inspiration you are to us newbies, thanks and I hope you have many clean scans and clean years!

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  • amlg1
    amlg1 Member Posts: 596
    edited July 2011

    That is such awsome news!

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  • NancyD
    NancyD Member Posts: 3,562
    edited July 2011

    LindaLou, this is such great news! Congratulations and hoping the next few years (to the 10th) are as NED as these have been.

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  • Karina121293
    Karina121293 Member Posts: 370
    edited July 2011

    Linda, so happy for you and what an inspiration you are !!! I love you assuring, that there IS life after BC. Wishing you NED forever.

    Hugs,

    Karina 

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited July 2011

    Linda,  Wonderful news!  You're fortunate to have a proactive onc....go for the Metformin!  I have asked for it since 2009 and will continue to ask for it at every visit. Congratulations and thanks for the inspiration.

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  • oandtolivo
    oandtolivo Member Posts: 83
    edited July 2011

    Thank you so much for posting.  You help so many of us who have just started on this road.  You make the future look so much brighter.  Congrats on 6 years.

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited July 2011

    That is fantastic!  Congrats and thanks so much for sharing.

    V

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    Linda, I so happy for your results!  The 10 year mark is such an important one for ILC and it is definitely in your sights!

    Thanks for sharing the information on Metformin.  That is new news for me.  Since I'm still recovering from the slamming I got with my year of Aromasin it's not the time for me to be talking to my onc about it.  But maybe in 3 months when my body is back on an even keel I'm going to bring it up.  Thanks!

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  • lkc
    lkc Member Posts: 1,203
    edited July 2011

    Linda,

    Congrstulations You are in a really good sport.  Are you continuing the Z? I've had the same as you and not clear about going off.

    I am in total agreement regarding Metformin. There has always been a strong link with glucose metabolism and I think its the way to go! 

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  • orlandpark65
    orlandpark65 Member Posts: 106
    edited July 2011

    Thank you so much.  I'm so....happy for you.    Hopefully someday (soon) I will be mentally strong like you. 

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  • karen1956
    karen1956 Member Posts: 6,503
    edited July 2011

    LindaLou....congrats on the good news.....Here's to growing old together dancing with NED!!!  Karen

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  • Annie62
    Annie62 Member Posts: 1,081
    edited July 2011

    Congrats Linda Lou! Many happy returns. :)

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited July 2011

    Congrats on being NED!

    I just had my check-up & I'm NED too!!! NJ 

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  • MaxineO
    MaxineO Member Posts: 555
    edited July 2011

    Congratulations, Linda! We love to hear such good reports.

    And congrats to you, NJ!

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  • chrishat
    chrishat Member Posts: 89
    edited July 2011

    it is so great to hear good news like this....thank you for sharing! i am curious, does anyone know if the recommended protocol for zometa is now 5 years, instead of three? it has been my understanding that i would do 6 treatments over 3 years. getting ready to do number 4. but i am seeing references to 5 years. also for those of you whose oncs are prescribing metformin even though you are not diabetic, which parts of the country are you from? i think sometimes there are regional differences in standards of care and onc willingness to try new things. i am on the west coast and seeing mine next week....i want to go in with lots of info onboard! thank you sisters!

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  • jdootoo
    jdootoo Member Posts: 253
    edited July 2011

    Congratulations LindaLou!! So happy for you!

    One love, Jackie

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  • kimber3006
    kimber3006 Member Posts: 586
    edited July 2011

    What a wonderful post - thanks for sharing!  Big congrats to you!

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  • riley08
    riley08 Member Posts: 11
    edited July 2011

    Thank you so much for your encouraging post. I am just finished my 4th A/C dose dense, and will be starting Taxol X4 next week. Reading posts like this give me so much hope just when it is needed the most.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited July 2011

    This is GOOD stuff! Keep on keeping on.....

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  • lexi4
    lexi4 Member Posts: 1,074
    edited July 2011

    Yay LindaLou,

    I am so happy that you continue to do well! It is always encouraging to read! I wish you many many more happy and healthy years ahead! 

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    chrishat,  

    I'm in California, too.  I don't know why 5 years of Zometa.  That is my oncologist's recommendation.  I asked for Metformin and the oncologist felt it "couldn't hurt" and may help, so I'm taking it.  As to what is standard,  I don't know and I don't know if it's different by region.  I'm learning about that some by reading on this site.  G.

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