Where are the tri-negs!

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  • MarlyD
    MarlyD Member Posts: 41
    edited August 2008

    Hi everyone, I was diagnosed with TNBC on July 16, 2008 (3.0cm, grade 3, one subpectoral node positive).  Since then I have had a bone scan, CT scan, breast MRI, MUGA scan, EKG, pelvic ultra-sound because the CT scan found a 5.9 cm complex septated cyst on my right ovary which turned out to be just a cyst, a brain scan, and a hearing exam.  I am fortunate to be going to Massachusetts General Hospital in Boston for treatment, because my oncologist is leading a clinical research which I am participating in.  I started on Cisplatin and Avastin on Wednesday, August 6.  I will have 4 cycles of Cisplatin and 3 cycles of Avastin before they do the lumpectomy and axillary lymph node removal sometime early November I think.  The Cisplatin can cause ringing in the ears and loss of hearing for high pitch sounds as well as neuropathy.  It can also cause kidney damage, so I had 2 hours of IV fluids before they started the chemo and have to drink lots of water.  Was also taking potassium and magnesium pills for 7 days until my bloodwork showed it was OK to be off of them.  I had some ringing in my ears and tingling of fingers/toes, but that seems to be better now.  After surgery I start on Adriamycin, Cyclophosphamide and Avastin for 8 weeks. Then either just the Avastin or Avastin and Paclitaxel for another 8 weeks.  If necessary I will have radiation when the chemo is done. 

    The nausea meds they gave me for the first few days after chemo worked well, but day 5 when I was getting ready to go to work, I felt nauseous and took the Compazine that was prescribed for me and that worked.  I was really tired the first couple of days back to work and still am, but not too bad.  I get my second treatment on August 27 . . . not looking forward to it.  Still have an appetite for anything and everything I can eat, so I do, which probably isn't good given that fast foods and sweets are my weaknesses Embarassed I am considering a bilateral mastectomy just to be rid of these things, although I know it's no guarantee of stopping a recurrence.  I don't know if that would eliminate the 6 weeks of radiation . . .  

     It's great to have a place like this to go to talk to others in the same situation and share experiences/knowledge.  My best wishes for all of you.

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  • janinvan
    janinvan Member Posts: 83
    edited August 2008

    florida lady...if chest wall is very difficult area to treat with or without rads? ( radiation?)...should there be regular CT scans for post masectomy patients?

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  • Maryiz
    Maryiz Member Posts: 975
    edited August 2008

    Flalady, let us know how you are doing.  You are going to make it to NED.  We are praying.  You have been so helpful to all of us.Maryiz

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

    Janinvan...I'm not sure of your question?  Are you concerned about the radiation from the CT Scan?  If so...the is not shooting radiation through the skin and causing tissue damage like normal rads for bc treatment, this kind of radiation would take a lot of them to damage an area like the chest wall.

    Maryiz,

    Thank you for asking about me and thank you for your prayers. I doing great on this chemo physically. I can't even tell I'm doing chemo except a little more numbness in my hands/feet.  Still working full time!  I just had #5 and sometime I would like a afternoon nappy:)

    The possible down side...we did a PET scan and few weeks ago and all my tumor/nodes were smaller. (as usually for me good news/bad news thing get's me very time..) I had a new place under my arm around where the bottom on your bra line.  The place that came through my skin is trying to heal, but not there completely. Did ask my doctor about a cream that is made in Germany that is put on places that come through the skin.  He read up on it, and remember it from years ago (1997 there was a trial) and FDA did not approve it here, but Europe uses it a lot for other kind of cancers.  He said he can get it for me if we need it later by special request.  Told me...be where it burns really bad when you put it on.  But is has something like 30% increase chance of healing this area. This only goes through a few layers of skin, so this can not completely treat the area. Hey! I just don't want to see the sore anymore.  I'm a little afraid to ask what we will do for the next protocol...these hands/feets is really controlling my treatment options. He did mention he would like me to see a doctor a Mayo here in Florida for a possible consult.  I'm still taking my vitamins and supplements starting three days after treatment.  So far no blood shots, or liver and kidneys issues. So all in all I'm doing pretty darn good. Just make this stuff go away...

    I hope all of there other TN negs sister are doing well this summer.  Please continue to keep in touch. 

    Flalady

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  • peachwater
    peachwater Member Posts: 16
    edited August 2008

    Hi Florida Lady,

         I too have spent hours reading your posts since diagnosed.  Some for encouragement and some to see what the side effects will be.  I have a concern I wish to ask about.  I have the numbness but also I have some pain behind my shoulder like in the scapula area and pain on the side of my back where the drains were.  Is this normal and will it ever go away?  I still do not sleep on my right side because of this.  I am active work in the yard and do everything I did before surgery, but when I settle down at night I am aware of this twinging pain in my back and of course I wonder.  Thankyou for all of your posts a little bit of everywhere they are encouraging to me.

                                                                                                             Barby

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

    Hi Barby,

    I know the pain that you are talking about.  I think you will find it is just muscle strain from surgery, holding and moving your body differently. Also the stress from this past year.  I still can not sleep on my right side. (3 yrs) This was my first mast. sight. Some weird reason I can sleep on my left...Thank God I hate sleeping on my back all the time.  I still continue to have pain on and off in my back area. I suffer lymphedema of the chest wall...but it's really not in my chest wall...it's all the fluid that runs around too my back to the area you described.  So you may want your surgeon to look to see if you have fluid building up in these areas.  It's best if you catch this early.

    I see where you must have had surgery this year.  Your body could be trying too still heal. The best thing you can do is ask for some physical therapy.  I was having a lot of pain early this year because they also did heavy rads under my breast bone and between that and surgery, I had started holding my boding at a funny angle and sleep differently and this cause all my muscles too freeze up even with exercises.  You need a program that will help with range of motion. 

    Here is something you might want to try while waiting to see your surgeon. Go online at Lebedmethod.com.  This lady is a bc survivor who has designed a exercise CD that is made up of slow range of motion exercises, that also move the lymphatics system.  So you can address two possible problems.  She kinda gets on my nervesLaughing but they do work.

    If this persist...I would talk to your surgeon and ask them to check for truncal lymphedema. (sad to say most don't know what this is...) also ask her/him for physical therapy even if you had it before.  You will be surprised how much this may help you. If you had a mast. they actually cut the muscle that controls the scapula.  My surgery was so sever that my scapula was loose and hung off my back for three months, before I could get the muscles moving again. This area moves upto the base of your neck and over to the front of your shoulder.  If I remember right the pain was worst a few months out from surgery, because you have a lot of nerve damage and when the nerves come back to life...so to speak...you feel my pain in these areas.

    Barby, You have been blessed with finding your bc early, I am glad to read you are moving forward and doing the things you enjoy.  I'm a gardener also and had to cut way back because of the lymphedema.  Please be careful of your arm. Don't over do it. Take breaks often and always work near your body.  I'm sure your problems are just that your body has had a ruff year. Please follow through on checking this out if you still have concerns.  You don't need anymore stress. I really do believe it is muscle strain deep under the scapula from surgery.

    Best wishes you find relief soon.

    Flalady

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  • peachwater
    peachwater Member Posts: 16
    edited August 2008

    Thank-you so much for responding.  Yes, it was caught early. If people had listened I don't think I'd had chemo---but then again since it was triple negative I think my doctor would have been aggressive in the treatment. People love my doctor but he doesn't talk much.  But he seems to know what you are thinking which is fine with me.He wanted me to join a clinical trial to do avastin for those who are triple negative and have not metted yet.  But, all I could think of was making it through the year and still working so that I could retire affter this year teaching if I had to. I did have a modified mastectomy.  Just thought---get rid of it all ---and I kept myself from having radiation. I don't know whether you are married or not but I have been a single mom for 17 years. Drove my daughter to Washington for her station in the Army and Married off my son within the same month and was diagnosed with cancer a month later. I could not move my right arm after surgery---now I have full range of motion---just pains in the funniest places.....under the arm, my side, my back, my shoulder. My incision site looks kinda funny, but ask me if I care right now. I do realize how fortunate I am to have found it so early.  Cancer is so unpredictable, though.  I have read many of your posts and you have such a reassuring voice even though you are staged later than many and have been through so much.  I really hope that your treatment allows you to be around for many more years. Thank-you for your encouraging words. I will check out the web site. If you are still in Florida---I hope you guys weather the storms.  I know we are getting rain even in Oklahoma.  Take care,

                                                    Barby

                   Barby

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

    Thanks Barby for your kind words.  And I still have hope I can beat this thing! Other may not think I can....but I still do. God still does miracles and I'm in line for one:) Yes! I'm also single, but I live alone.  You really have had a hard year.  I don't know why, but we all seem to have our life's go to hell in a hand basket about the time we get diagnosed.

    The Florida weather....you know the storms don't normally bother me....but when they are lining up back to back...this is starting to get on my nerves and we still have two more months of this.

    Flalady

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited August 2008

    FlaLady,

    Just want you to know I always read your posts. You are an incredible inspiration to all of us. I also believe you're going to beat the beast!

    Love,

    Annie

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  • peachwater
    peachwater Member Posts: 16
    edited September 2008

    Hey there,

            Hope you are surviving in Florida--- smiles to you.

                                                               Barby

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  • Maryiz
    Maryiz Member Posts: 975
    edited September 2008

    Florida Lady, I believe you will beat this thing.  Your attitude seems great to me.  Your disease seems like it is stable.  It also seems logical that they have kept it from spreading to major organs.  I don't see why you can't remain that way until we get a better treatment to clean up the rest.  I believe we will. Maryiz

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  • peachwater
    peachwater Member Posts: 16
    edited September 2008

    I meant the weather in Florida---I tend to believe we are all survivors.

                                                                             barby

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

    bump bump

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

    bump bump

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  • peachwater
    peachwater Member Posts: 16
    edited October 2008

    Hey there wonderful woman!

          I see that this bump is a little higher than your others.  I am praying that you will get around this bump and what the doctors have told you is not totally the case.  Keep fighting.  It is our fighting spirit that keeps us here.

                                         Thinking of you,

                                                        Barby

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  • tweetypie
    tweetypie Member Posts: 3
    edited October 2008

    Can someone tell me what NED means?  I'm new to BC.org, and I've never heard the term.  Have triple-neg myself, but it helps if I understand the acronyms being used.  Thanks.

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited October 2008

    NED means "No Evidence of Disease."  You will frequently hear ladies refer to dancing with NED ....!

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  • 2z54
    2z54 Member Posts: 261
    edited October 2008

    Florida Lady -

    You've been an inspiration to me since DX on July 23, 08.  Just thought you needed to know that. And, you're going to be fine!!!  We all are!

    sue

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

    Thank you ladies for your support.  I need it right now...I having trouble looking at my chest wall right now...I just looked at it in the bathroom mirror the first time in days...It total freaked me out. Yikes! Where do I go from here?

    I meet a lady lady last week in chemo who had just started treatment.  She started asking me questions about getting through treatment.  I never miss a opportunity to share what I have learned.  We a lovely talk while we did chemo. She was so surprised that I have been in tx for three years.  (the big thing is I still have hair) She said seeing me let her know that she can have a life in the middle of cancer. I gave her hope that she too can do this. This has always been my goal.  Down let this disease take over your life. Cancer for many is a test to show how strong, and deep we can dig deep into ourselves, to show ourselves and others we can do anything.  Everything after cancer will seem pretty small. You have looked all your fear's in the eye and live to tell it. Don't waste your life my not taking chances or fighting for your dreams.  As I went to leave, she gave me a big hug, and said you need to write a book about this...So again I'm trying to get this book started.

    I also met a lady for lunch this week that is one of us TN ladies online here.  I love finely meeting some of you in person.  We must have our own convention one day where we can all get together and have a big hug festival.

    Flalady

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

    A big hug festival, that sounds just right, FlaLady. I wish I was with you tonight to at least share a few, as I do continue to think of you. 
     
    I'm sorry you are carrying such a weight, and yet you mentor to fellow women with sincerity of purpose. Please do try to write your sage words for us.
     
    Thinking of you, praying for you,
    Tender 
     
     
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    ER-negative, PR-negative and HER2-low, is it triple-negative. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    ER negative, PR negative, HER2 low, is it Triple Negative? 

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

    dandelionou,

    Yes this is a triple Neg.  Anything Her2++ and below.  True Her2 is Her2+++.

    Flalady

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Floridalady:

    Thanks.  I am ten years BC survivor, ten years of worried and fight.  Beside follow the standard treatment processdure,  maintain our health diet and exercise, it seems there is not much helpful information for TN.  I am glad that I found this website laterly.  Lots of TN sisters tell their experience.  We are not alone.  I have to share my experience too.

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  • bourscheid
    bourscheid Member Posts: 718
    edited October 2008

    Hello ladies!  Found out today that I get to join the triple-neg group!  I was diagnosed on Aug. 18 when I went in for either an open biopsy or mastectomy.  Came out with one less boob!  Cancer was agressive when I went for pre-chemo tests found to have spread to many nodes in the chest area/subclavical? and have lesions on the liver.  I started abraxane/avastin on Oct. 2 and began my second round today (3 weeks on one week off).  So far the SE's have been okay...no nausea, feel pretty good, just get tired the third day and after a long day at work.  So...I know the technical terms for triple neg but what does it really mean for us?  I am usually an overly optimistic person but this set me on my rear! 

    Lori

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  • wetcoast
    wetcoast Member Posts: 193
    edited October 2008

    Hi floridalady,

    Just wanted to send many thanks for the info on massage therapy for neuropathy and lymphedma. I have had 3 treatments and it has made a world of difference. I also went to a naturopathic doctor and have received two injections (yuck) with b3, b5, b12, magnesium, co enzyme q 10 and a little folic acid. The neuropathy is still there but no where near what it was. Also my fragile emotional stability is a whole lot better.

    hugs to you

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

    Great New wetcoast...I'm so glad this has helped you.  Every little bit we can control is a wonderful thing. Keep up the good work and let me know how you do with on going treatment.

    Big hug to you also,

    Flalady

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  • KPolasek
    KPolasek Member Posts: 184
    edited November 2008

    FloridayLady ... and Wetcoast

    How did you find out about these doctors?  It seems that I have to dig to find out about these kinds of things.  My docs never suggest anything but lose weight Yell

    Kay

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  • ebann
    ebann Member Posts: 3,026
    edited November 2008

    I had surgery and they removed a 12.5cm tumor and ran test to find out I am a triple neg sister as well. I am not sure this is a good thing or a bad. I am doing another cocktail and radiation at the same time right now. When they removed the  tumor they found out that I have cancer along the chest wall and have 3 positive lymph nodes. I just started treatment yesterday. My 2nd day in rads and I am already red. I have a burning sensation. I ordered some Jean's Cream I have heard good things about it for your burns during radiation. I do hope it helps cause I can not imagine what it is going to be like in 6 weeks. I am doing Taxol and Carboplatin. I woke up this morning with an upset stomach, and I am constipated that quickly. A little tired today. I can not believe all the steroids they are giving me. It just seems like so much. I had been on Jenny Craig and lost 50 lbs. I tried to stay on it while on treatment but me and the food did not do well. So I am planning when I am in readmission that I can go back on. I have been able to maintain my weight so far. I am just afriad now with all those steroids that I will gain what I lost. I do hope that is not the case.

    Blessing; Elizabeth

    bears

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

    KPolasek,

    Try search by naturopathic and homeopathic doctors registries online. Also some school have search by states. Homeopathic doctor is one that has a four year degree.  You can look in the yellow pages under alternative doctors.  Some time it is best to walk in a very good "Natural food and vitamin" store  (not chain stores)  They usually know these guys because you will need to I visit there stores for supplements. But the best is start asking anyone you see in these stores. I had to do alot of search to find one and one I liked.  It's no easy but it's worth it.  Any one who is acupuncturist does this or knows these doctors in their areas.  In many states they can only list the acupuncturist licenses and not on homeopathic because of restrictions.

    Welcome new ladies...sorry you join are group but we a happy to help you any way we can.

    Bourscheid - Triple negs means after standard treatment we do not have any "maintaince drugs" to keep cancer cells returning.  Hormone positive you Tamoxifen or drug in this family for anywhere from 5 to 10 years I think is the limit now.  Her2 positive take Hercepton for one year after completing treatment.  We rely on chemo as first line and only line of treatment.  The key is TN ladies to response well to chemo.  And we are treated more aggressive upfront.

    ebann -  Welcome also.  Your rads doctor should also prescribe you a cream for your skin.  You may also want to try the supplement curcumin that you hear discussed on this site.  It is suppose to help with inflammation from rads.  It also has great cancer fighting ability.  Google this first. Bad news is your will probably gain some weight.  The d%*@ steriods.  But you stomach will also swell some because the chemo gets into your stomach lining.  This does go away after treatment...and some work.  Try SenkotS for your constipated a day or two before your next treatment.  And than take up to three times a day on the day of your treatment and the next day or so... This really helps.  You are the first I heard of that is doing rads and chemo at the same time.  I'm on my second recurrence to chestwall and we never did both.  Hang in the girl you can do this.

    Flalady

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