Starting Chemo Aug 09

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  • jennsdogs
    jennsdogs Member Posts: 56
    edited May 2013

    I have not been on this thread for a long time, but just read every once in awhile.  Buccaneers: My markers stay at around 35-45 - only once did they drop below 30.  I know it is frustrating worrying about everything - every number, every bump! I hope all is well with the PET scan - Good luck, I hope you are like me and just stay at the "low end of high" - my thoughts are with you.

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  • Lilah
    Lilah Member Posts: 4,898
    edited May 2013

    Buccaneers -- I had a variation once (I think it was 10 points higher from like 5 points below the line (which I think is 35) to five above... my onc had me repeat the test a few weeks later and it was back down, so it was a blip (I'm surprised your doctor went straight for the pet-scan and not for a repeat of the blood work).  This happened to me a year ago, I want to say, so a few tests ago (I still see my onc around 3 times a year). so I assume I've had normal markers of 35 or less since then.  My understanding of this test is that it can vary and it may not mean anything.  So I would not get too worried.  If your insurance allows another pet-scan, go for it -- it will give you peace of mind if it shows nothing and if, god forbid, there IS something to worry about... it will catch it early.  My hope, prayer and bet is that you will be OK.  Please let us know what happens!

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  • msmpatty
    msmpatty Member Posts: 818
    edited May 2013

    Buccaneers - My mom had breast cancer that went to her liver 15 years after her original treatment. She's NED now and has been for over 10 years but her markers are always around 48. When they found the liver mets her markers were over 300! I think you are most likely to be just fine...but the PET will confirm that. Try not to worry and I'll be sending good vibes your way.



    My ONC, who I see every 6 months, doesn't test the markers. So for me I guess ignorance is bliss.



    Patty

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited May 2013

    *Update* On Monday I had the PET scan on which they did a 'wet read', so that I could see the Dr. the same day. Nothing abnormal, although I did have some uptake in my ovaries in particular the left one. I am being sent for an pelvic ultrasound. I also was tested for the BRCA, since I have a daughter. My onc. seemed to think we should just do a hysterectomy, my question was since I was TN what would my ovaries have to do with a recurrence, since my cancer was not hormone driven? Has anyone else had this topic come up, about the hysterectomy. I will let you know when I get the ultrasound results...by the way also doing labs monthly to see if my tumor markers keep going up... {{{HUGS}}} Donna

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  • Lilah
    Lilah Member Posts: 4,898
    edited May 2013

    I had the BRCA test when I was first diagnosed, because I was in my 40s and Jewish (the other reason they do it is if you've had family members with BC).  I was negative or, as my onc put it, "it isn't genetic as far as we know" because the BRCA test (they test for two genes) is limited.  Still it's worth finding out.

    I think you should search this site with your question about why ovaries would be connected to triple-neg BC (also you should press your doctor to explain more). 

    I'm SO glad that the PET scan was normal.  What does "uptake" mean?


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  • NavyMom
    NavyMom Member Posts: 1,099
    edited May 2013

    Donna, I had uptake in an axillary node after chemo.  Scared the crap out of me.  Had to watch it closely for about 12 months.  it eventually resolved itself.  I have read somewhere that there is a connection of TN to ovarian CA on a cellular level. but I have absolutely no facts to back it up.  (sorry that I am not helpful here)  Also your tumor markers are barely above normal and that is a good thing.  Please know that I am thinking about you and hoping that this is just a blip on the radar.  

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  • msmpatty
    msmpatty Member Posts: 818
    edited May 2013

    Donna - I'm glad the pet was good for the breasts and that they are being thorough in checking out the uptake on the ovary. I had unusual uptake on a breast MRI a year or so ago but a biopsy showed everything was fine. I believe that the BRCA gene runs in families with a lot of breast and ovarian cancer, so like Navy Mom says...there is some connection. I'm keeping the faith that everything is good with you!

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited April 2014

    Hi everyone, we're nearing year 5 so I thought I would check in. Other than the stress of having to find a new Oncologist because Humana has decided to drop Florida Cancer Specialist...grrr; I'm doing well. Getting ready for my mammo next month and 5 year check-up. Feeling cautiously positive, truth be told, I like to act like this never happened! Would love to hear how you girls are doing! {{{HUGS}}} Donna

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2014

    Hi Donna.  It is so good to hear from you.  Yes, I too am thinking about the big 5 year anniversary coming up.  I will be seeing my MO for one final time in May and then if all is well she will release me to my PCP.  My BS suddenly retired in November so I am without my very favorite Dr.   And I see my PS once a year.  So having to see MDs will slowly diminish from here on out.  I am having to decide if I want a PET scan.  My MO wants me to have it, but I am feeling good (older and a bit fatter) but I really do not want the radiation exposure if I am not having symtoms to warrant it.

    Is anyone planning any type of celebration?  I think my DH has something up his sleeve...He has asked me a few times for the exact date for my 5 years.  And he always questions me about how long I'm gonna be gone when I leave the house....So I am wondering if he is working on something fun.  No matter tho....I am just glad to be alive.

    The one thing I know I will be doing is getting a newer car.  My current one is 10 years old and almost 100,000 miles.  Its looking and acting tired and I am ready for a little "upgrade"  I let ya know what I end up with.....

    Well ladies, hope we hear from you soon.  We all have so many memories of our experiences together.  gotta go get a tissue now! snifflesniffle

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  • Lilah
    Lilah Member Posts: 4,898
    edited April 2014

    Hey ladies!  Good to hear from you! 

    Yes my 5 year is soon too.  My Onc said she counts it as 5 years from day I finished chemo (which for me was in October 2009 - guess we all finished around then).   It seems that different doctors count from different days though?  Anyway whatever... it will be good to pass that milestone! 

    It's funny, I haven't seen my PS in a few years.  Still see my BS (she sees me after my mammo on my remaining breast)... I'll see her in June.  I wonder if she will continue to see me?  Same with Onc.  Not sure how long it continues.  I think I see her again in May or June as well.

    I have no plans to celebrate specifically (not yet anyway) except maybe to live life with gusto and be thankful I have it!

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited May 2014

    Well, here is my 5 year update.....As I posted last month, I thought my DH had a little something planned to celebrate...WRONG!!!

    He totally forgot!  Yes, ladies, HE FORGOT!  On the evening of the 27th he asked my what was wrong because I was acting weird.  So I told him that it was an important day for me.  Well poor guy felt pretty bad and even had tears in his eyes as he apologized for forgetting.  I am over it now.  The day is over, water under the bridge

    And as for my car.  Well DH kept wanting me to look at several cars that  I was not interested in.  I stayed my course and finally said today is the day I am getting MY new car.....I bought a red CADILLAC!  My first really nice "big girl" car.  I am very happy with it and more than happy that I stuck to my guns and got the car that I WANTED.  So there.  Yep, a bit of a rant going on here.

    I am going for an overnight with 3 gal pals tomorrow night.  Going to have our own celebration. Shopping, dinner and drinks These gals even had flowers delivered to my house inn remembrance of my big milestone.

    Hope everyone is living life to the fullest.

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited May 2014

    Navy, I totally get the disappointment. ..I told my DH (about 6 months ago) that I would love to have a celebration for my 5 year mark, which is June 2nd. Yep, pretty sure that's NOT happening! I also feel a sulking coming on...maybe I will go shopping to lift my spirits too....maybe some new clothes, not a new car...CONGRATS ON THE CADI NAVY! At least you have a fun girls weekend to look forward to, enjoy yourself...you've earned it ;-)  (((HUGS))) Donna

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited May 2014

    Think of you all the time Jenn3...

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  • Lilah
    Lilah Member Posts: 4,898
    edited May 2014

    Awww buccaneers... me too.

    Navy!  OMG sorry he forgot but YAY for getting your dream car :)  And glad you will celebrate with your girlfriends.  I personally feel that being alive and having a normal life is celebration enough for me.  I am grateful every day.  My official 5 year mark, according to my oncologist, is the day I finished chemo... so I have to wait till October.  I guess everyone counts differently.

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited May 2014

    I think of Jenn, too.  I found a hand written note from her in my snail mail address book several weeks ago....sigh...sniffle.

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  • msmpatty
    msmpatty Member Posts: 818
    edited June 2014

    Hi ladies!   Congrats to all of us on our 5-year DX anniversary.  Mine passed without my even noticing (May 13th), so I guess like Lilah, being well and living life are good enough for me.   Frankly, I have almost forgotten I ever had cancer.  But then I remember Jenn.  So sad.

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited June 2014

    Aw Patty -  how lovely that you've almost forgotten!  I am mindful of it... though it doesn't weigh on me like it used to.  For a her2+ gal like me the 5 year mark is supposed to be an important milestone of survival. I hope that's true!

    Missing and remembering Jenn too!

    Sending you all big hugs.

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  • Loveshermother
    Loveshermother Member Posts: 101
    edited June 2014

    Hi all,

     Mom is also doing well. She just had her scans and all clear. She will be 79 on tue 6/24. I can remember in June 2009 when she was told she has BC, I thought this day would never come. She of course is deal with a few other health issues but at least NOT BC. Glad to hear everyone is doing well. I too miss Jenn. I think about her often.

    Penny

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited March 2016

    Just checking in...how is everyone?

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  • Loveshermother
    Loveshermother Member Posts: 101
    edited March 2016

    Hi buccaneersdj,

    I often come on the boards still but do not post. Mom is still cancer free and will be celebrating her 81st birthday 6/24/16!. Hope all is well with you all!

    Penny

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2016

    I'm here, too. Seems I log in for a few days in a row and then slack off for several days.

    I am doing fine..... numerous medical adventures since cancer diagnosis...Diabetes, high cholesterol, hypothyroid, vertigo, heart muscle thickening, low vitamin B12 and plantar faciaitis. My Medication list is crazy! BUT...I am NED and believe I will stay that way. I am still going to the gym 3 to 4 days a week and continue to couples dance with DH.Yet, I am fatter than ever....enjoying life and trying to smell the roses.

    Hope every checks in soon.....

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  • Lilah
    Lilah Member Posts: 4,898
    edited March 2016

    Glad you're all doing well! Me too! Busy with work, life, etc. Still NED - woohoo!


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  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2016

    Just wanted to take a minute to say hello and get a little roll call going. Hard to believe that it has been seven years since we met here on this thread. what great friendships we made.... And sweet memories for those friends we lost.

    Hoping to see many of you ladies check in!

    As for me, I am still NED. Grandma of 2 boys and still a Navymom.

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited August 2016

    Hi Navymom! I'm still here!!!! Current struggle is getting my b12 level up and my iron levels other than that still Ned! My doctor won't release me until my 10 year mark since I'm TN, so still going in 2 times a year. Grandma to one gorgeous little girl and another one on the way next week! Oldest son is getting married in October and my daughter is getting married next March...busy busy busy! Glad to see your doing good! (((HUGS))) Donna

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2016

    Glad to hear from you, Donna! I've been doing the B12 injections once a month since December. Levels are back to normal now. Also was complaining about low energy and PCP bumped up my thyroid med and I am feeling better. Latest boatload of crap I've been dealt is Menieres Disease. Been following a low sodium diet as recommended, since May. Has not helped my ear problem but I have lost 15 lbs! But life is going forward...and so am I!

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  • Lilah
    Lilah Member Posts: 4,898
    edited August 2016

    hi I'm here too! Still going strong :).

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited April 2019

    Hi everyone...coming up on 10 years so I just wanted to check in. I hope you all are doing well!

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited May 2019

    Hi!! I only visit the boards every month or so. What a nice surprise to see a post on our good ole thread! Anyone planning anything to celebrate the big 10 year milestone? At my five year I went out and got a new car....always wanted a red cadillac, so that's what I bought and I still have that car. Nothing going to happen like that this time around. Maybe a massage or a pedicure, hopefully good weather.....and simple dinner on the deck.

    I hope others chime in soon...I would love to hear how everybody is doing.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2019

    Hi buccaneersdj and NavyMom, so nice to see this thread. I don't think I've seen it in years. I'm excited for the 10 year anniversary.

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  • Lilah
    Lilah Member Posts: 4,898
    edited May 2019

    Can't believe it's been 10 years! Go US!

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