Calling all TNs

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2014

    Fighter- will be thinking about you today. I hope the biopsy is pain free and you get good results...quickly!

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    Hi!  I have been reading but not posting.  I am curious, has anyone lost their eyelashes a second time after they grew back?  I was finished with chemo in August at which time I had no eyelashes, eyebrows or any hair whatsoever, and by last month I had pretty nice looking eyelashes again.  Now they are falling out again!  Sure hope they come back.  

  • KSteve
    KSteve Member Posts: 486
    edited January 2014

    Yes, Zenful, that happens.  I had the same treatment and I lost mine 2-3 times.  I didn't lose them all after the first time, but they really thinned out.  It was depressing because I was so excited to get them back.  They WILL come back, but it takes some time before things stabilize with lashes and brows.  You look beautiful in your picture!

    Kathy

  • encyclias
    encyclias Member Posts: 302
    edited January 2014

    Just as KSteve described, I lost my eye lashes twice although they weren't totally gone either time, just very sparse and stubby.  The first time was a few weeks after my last A/C chemo, and while I can't remember exactly (hell getting old), my impression is that it was a month or two later when they fell out again and then grew back permanently.

    Good luck!

    Carol

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2014

    BAK  I hope you are able to put the photo up.  I just love the picture of Romi. A big cuddly bear.  I can just see it now, sitting in the lap and the little kiss.    

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    Thanks KSteve and encyclicals.  I had a full set of eyelashes in that picture taken three weeks ago.  I swear I missed my eyelashes more than my hair when I lost them.  I will patiently wait for their return.

  • candycandy
    candycandy Member Posts: 18
    edited January 2014

    Hello! Ladies! I am new here and I am TNBC, dx on 11/27/13. I am going to Chemo (ddAC x4 and taxol x12) from next week (Jan 9th). Do you ladies have any advice during Chemo? Also I will go rad after chemo. I am a bit nervous! I already got hats and wig so am ready to lose my hair, and I already prescribed anti-nausia! So, I am getting ready to go Chemo. Recommendation for anything to eat, excise/activities, and anything to be aware of? Do I miss anything??? 

  • adagio
    adagio Member Posts: 982
    edited January 2014

    candy - you will find all you need to know on this website. I joined a group of ladies on the forum who were going through chemo the same time period as me, so we were able to support one another and compare side effects etc. So, for example, you might want to look up a "starting chemo January 2014  " group. Good luck and remember you are not alone - most of the women on here have been there and some are stillin the process - it is not easy, but it is manageable. Rest when you need to, exercise each day, eat small meals often and drink lots of fluids!

  • Gramof2boys
    Gramof2boys Member Posts: 194
    edited January 2014

    I don't post much in this group, usually in my chemo group but  I am TnBc and want to know if I should test for BRCA gene. I'm 57 and am adopted so I don't know much about my family history. I have a daughter and 2 sons so I wondering if I should be tested for their sake. I need to see if my insurance will pay for it. Ironically my adoptive mother and her sister both had breast cancer but I am not blood related to them. I guess I need to make another decision, lol.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    BAK, glad to hear your MRI was clear.

    Fighter, we are pulling for you that it is nothing.

    AC chemo really has me sleeping a lot.  I think I slept about 18 hours yesterday.  January is a great month for hibernation!  I don't feel bad...  just extremely fatigued.  I figure my body is working very hard right now.

  • PeggySull
    PeggySull Member Posts: 686
    edited January 2014

    Gramo--I was 61 when diagnosed and my insurance wouldn't pay for BRAC genetic testing because they said I had no first degree relatives who had breast cancer AND if I had the BRAC gene I would have gotten BC earlier in my life.  Hogwash but I wasn't able to pay for testing myself.

    My 42 year old daughter's insurance wouldn't pay for her to get tested because my BRAC status was unknown.

    At the time I was too tired of fighting insurance to get treatment things I needed so I let that one go.  I hope you have the energy to keep fighting even if insurance first denies you.

    Hugs,

    Peggy

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2014

    I would recommend having the test done if you are able to and/or willing to pay for it.  My insurance didn't pay for it either. It is powerful information for your children.  I am BRCA1+ but I was happy to know for my kids...mostly my daughter.  My husband was so upset I was positive but I was more pissed about being TN.

    Fighter - hugging you and thinking about you!  How dd the biopsy go?  xo

  • slv58
    slv58 Member Posts: 1,216
    edited January 2014

    Fighter, thinking of you, hoping things went well.

    Gram, I'm adopted as well. My adopted mother and grandmother also had BC and died early from it, but like you, no blood relation. I got tnbc at 54 and because I live in Ontario, they won't test me. I practically begged the genetic councelor but she said that without knowing blood relations-they assume I have none. If I had been under 50, they may have been able to bend the rules. It's very frustrating as I have a son and daughter and worry for them. Hopefully in the States, you will have more luck. I can't help thinking that if BC is about 20% hereditary, does that mean that about 80% is environmental? Well I lived 15 years of my life in the same "environment" as my Mom and Grandmother (adopted) and ate the same diet as them. Sometimes I feel being adopted your treated as a second class citizen. 

    Sorry, didn't mean to dump my frustrations, but I feel better doing it- lol! I thought that if you were under 60 with tnbc that they automatically tested you for genes in the States? Good luck- really hoping you can get the testing and insurance will pay.

  • MaryFox
    MaryFox Member Posts: 121
    edited January 2014

    Hi, everyone.  Another TNBC here.  Diagnosed in August. 2013 at age 70. (I've had a birthday since then.)

    Had 4 cycles of A/C and have had 3 of the 12 scheduled Taxol infusions.  SEs have been mild so far. No nausea with the A/C thanks to Emend, and no significant pain from the Neulasta.  I have virtually no taste buds which is a real downer. Shaved my head when my hair started coming out because I hated waking up with it in my mouth and nose.  I have two lovely wigs but I go commando and have never worn them.  Onc nurse told me that my hair might start coming back on the Taxol but instead, I'm losing eyebrows & lashes and even less stubble on my scalp.  I was concerned about pain and neuropathy with Taxol but neither has happened yet. I do have on fingernail that starting to separate so I suppose I'll have chemo nails before all this is over.

    Had cervical cancer in 1992 but it was caught early. Had a hysterectomy but required no additional treatment.

    I'm truly grateful for all of you and your contributions to these boards.

    Mary

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    Mary, my nurses also told me my hair might start to come back during Taxol, but that's when I lost eyebrows and eyelashes and became shiny bald.  I was so glad when it all returned.  Just part of the process.  This too shall pass, right?

  • MaryFox
    MaryFox Member Posts: 121
    edited January 2014

    Funny thing is that I don't mind being bald. I'm in Florida so winter is just sometimes chilly.  I do miss my eyebrows.


  • BanR
    BanR Member Posts: 289
    edited January 2014

    Logging in after many days and catching up with the discussions again..

    Oh yes, Mary and Zenful..losing eyelashes is a terrible part. My Acs are over, taxol will begin in a few days and I am sure by the second taxol I would have lost it completely..

    fighter: do post your biopsy results

    simplelife: have your taxols begun? AC is making you sleep..its good. Ac kept me awake whole night..I got palpitations and anxiety attacks, nightmares and all.. I hope taxol is easy on me.

    Gramof2: I guess since you got cancer at 57, u are not brca positive, since brca positive women tend to get cancer much earliar. 

    Cocker: hows ur treatment going on now.. have your chemos begun?

    bak: so his name is Romi!! thanks for sharing titbits like this :)

    TifJ: how was holidays.. 2014, u will be completing 4 years post diagnosis!

    I am getting ready for the next round..4 taxols lined up! with ACs over, I feel the worst is over...but who knows taxols might surprise me.

  • TifJ
    TifJ Member Posts: 1,568
    edited January 2014

    BanR- Yes, 2014 will be 4 years for me (not until August though!). The fear is still with me, but does not rule me any longer. I do feel the whole experience had aged me. Lots more general aches and pains than I had pre-BC. I'm sure actual age has something to do with it, but at 44, almost 45 (when diagnosed) and now just turned 48 seems like I should still "feel" young!  Thanks for thinking about me! Hope Taxol treats you well!

  • DorMac
    DorMac Member Posts: 155
    edited January 2014

    Candycandy,

    It's been 1 1/2 years since I finished chemo, so my memory isn't the greatest (yes, chemo brain is real!).

    But one thing that happened to me is when my hair started to come out, I was waiting as long as possible to get it cut off. I was outside and the wind caught my hair and blew it the opposite way from how it lay and it hurt like hell - actually made me cry! That MAY not happen to you but be prepared just in case.

    Another thing is that one of the the chemo treatments I received (Cytoxan, Taxotere) can cause finger and toe nails to separate and fall off so my hospital provided ice mitts and ice socks while getting that particular infusion. If you are getting either of those, ask before your infusion.

    I didn't get radiation but my Mom did when she had bc - remember to moisturize, moisturize, moisturize. The ladies on here who had rads can recommend the best stuff to use. My Mom didn't and, although we thought she had sailed through with no bad effects, after the radiation ended she got terrible radiation burns on her chest.

    The best advice I can give you is to remember that you can get through this but take care of yourself:

    - take your meds when needed, don't wait until the pain and nausea are unbearable

    - eat what you can when you can

    - rest when your body tells you to

    - don't read too much on the internet as there is way too much negative stuff out there

    - try to think positive and avoid negative people

    - feel free to come on this site and ask ANY questions you have (no question is wrong or silly)

    - vent on this site whenever you have to (most of us have at one time or another)

    We have been through what you are going through and we are here for you at every stage - to laugh, to cry and to hold your hand! Good Luck and {{{HUGS}}} as you start this journey.

    Doreen

  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2014

    ditto what Doreen said and drink water water water and more water!  Flushes the meds back out.  We will all be here to help and support you in any way.  Be sure to join the current chemo thread too so you can compare what is going on with others that are in it now.  Soon it will all be a memory

    Maggie

  • slv58
    slv58 Member Posts: 1,216
    edited January 2014

    ditto to what Doreen and Maggie have said. Can't tell you enough to drink lots of fluids, but don't over do it. I remember someone in my chemo month drank too much water and threw her electrolytes off. I wasn't able to stomach water, but soda water seemed much more agreeable and helped settle my queezieness. Be kind to yourself and listen to your body when it needs a rest. If you can manage, a 10 minute walk is good for the body and spirit! Buy yourself some new makeup and have fun with your changing look! I never wore eyeliner in my life as I always had thick eyelashes, so in preparation, I went eye makeup shopping and picked up a gorgeous eyeliner and  a good eyebrow pencil. Then some new lipstick! 

    Will be thinking positive thoughts for you! 

  • candycandy
    candycandy Member Posts: 18
    edited January 2014

    Thank you for advise! Alright! I will hydrate myself during Chemo, but not  "too much". 

    Did  you ladies kept hat or turban when you sleep? I am curious because it may be easy when I lose hair and don't have to clean up much. 

    slv58, did you use normal make up or changed to natural product? Does make up hurt skin during Chemo? I don't wear make up a lot in my normal life so it won't be problem if I better stay away from make up. But, since you mention about new make up, I am curious. 

  • BanR
    BanR Member Posts: 289
    edited January 2014

    hi candy..i have begun chemo from november and i am midway 

    expect your hair to start falling from the 18th day after the first chemo.

    get a buzz cut done beforehand and suddenly on the 18th day you will find your hair coming off in chunks. i remember , one such chunk falling off and getting stuck in my eyes! and then i shaved it off completely. I would advise you to just shave it off..since its very inconvinient..

    regarding turban use..yes..the hair all fallen off is inside the turban and not on your pillow, but its a big job cleaning off the mess from your turban. so better shave it off..it doesnt fall few at a time, its like big chunks..u can almost pull a bunch out with your hands

    now that my days are moving from one chemo to the next, i find myself quite comfortable without hair...i am more busy handling the other side effects of chemo and eating lots of protein etc and drinking fluids...around 3 to 3.5 litres daily.

    all the best for your chemo..which kind of chemo drugs have been prescribed for you?

  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    I had 4 inches cut off of my  hair a few weeks ago and it is shoulder length now.  will it be a waste of money to get a cut at this point?  I had first chemo last Thursday. I was thinking maybe I should just get the scissors and just give it a go. I have had an awful head ache ever since is there anything that can help with that?

  • PeggySull
    PeggySull Member Posts: 686
    edited January 2014

    candy candy,

    I switched to Bare Minerals, using only their powder products and moisturized with Neutrogenia cream.  I felt as if the makeup wasn't penetrating my skin (I was phobic about chemicals after BC dx).  Don't know if it is true but it was fun treating myself to a new "look" --I really love how the last step, Mineral Veil, made my skin so smooth.  The brushes are expensive but I didn't care--I needed some retail therapy!

    In any case, it's good to get rid of any makeup you have had for more than a couple of months and buy new (no matter what the brand), as germs can build up quickly in old makeup and you don't want to risk anything that could negatively effect your immune system.

    Hugs,

    Peggy

  • slv58
    slv58 Member Posts: 1,216
    edited January 2014

    candy, I didn't change brands as I really like my powder foundation. I did have to get eyebrow makeup as my brows fell out after last taxotere, but had thinned considerably prior to that. Unfortunately they did not return to their former glory, but small price to pay!

    I had my friend shave my hair down to about an inch prior to the great shed-and like others my scalp began to ache-as if each follicle was screaming-before I started to loose handfuls of hair. Don't laugh, but I decided to vacuum my head! Hehe. Worked like a charm and I think it was about 2-3 days before I was 90% bald with a bit of peach fuzz that I kept through my whole tx. I did wear a night cap as I found my head was always cold!

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    I chose to buzz cut my hair before it fell out.  My son cut it, and I invited a girlfriend over.  She showed up with a camera and we had fun with it, shaving it in stages.  Below is the Mohawk stage before we completely buzzed it.  It was a huge hit with my son's friends when he posted it on Facebook.  

    image

  • MaryFox
    MaryFox Member Posts: 121
    edited January 2014

    Check out the "Look Good Feel Better" sessions at your nearest American Cancer Society.  They're very good.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    Hi All, 

    I did neoadjuvant taxol (x12) first and am doing AC now.  I just have one more infusion to go on Jan. 14th.  My hair thinned considerably on taxol, but I was always able to "pass" as someone who just had fine hair.  With my 3rd AC, I have very little hair left.  It never came out in clumps....just some every day.  I wear a cap indoors and out because it's chilly here.  The AC is wearing me down.....I think because I was tired from the Taxol before I started AC.  I take a lot of anti-nausea meds, Emend IV, zophran, phenergan, scopaline patch, ativan.....I still have frequent feelling of nausea.  I only threw up once on day5 post AC #1 when the Emend wore off.   

    I just feel very weak and tired right now.  I'm just glad it's the middle of the winter while I'm going through this.  I don't feel like I'm missing so much by not being able to go outside like I normally do.

    I was 60 when I was diagnosed with TNBC.  That was the exact cut-off for my insurance covering the cost of the BRCA test for women with TNBC.  I just got the results back New Years Eve.  I'm negative.

    I meet with the breast surgeon on Jan. 15th (the day after my last AC infusion).  I believe I will be having a lumpectomy and lymph node disection.  If I don't get a pCR, my oncologist may give me a platium-based chemo after surgery.  My tumor has shrunk a lot with AC so it's possible I might get a pCR.   I'm keeping my fingers crossed.

  • Gwenie56
    Gwenie56 Member Posts: 24
    edited January 2014

    Simplelife4real ~ I had the A/C first. It was worse for me than the taxol. My hair fell out during A/C and started growing back during the 3 months of taxol. My tumor also shrunk during the A/C completely. I also slept a lot during the A/C and was very thankful when it ended. 

    My daughter was 25 so I had the BRCA test and it was negative. We were both thankful.

    What does pCR mean? path? 

    gwen

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