Forum Discussion

Yoga_nut's avatar
Yoga_nut
Member
12 years ago

New TNBC

Hello ladies...I am now 6 weeks post double mastectomy and 14 days since my first TC chemo ...hair falling outso the big shave today to start the New Year! I am 49 and have had lumpy breast with cysts forever and a benign tumour 2 years ago...I asked the surgeon then to test me for BRCA but he wouldn't do it. I had a normal mammogram and ultrasound 11 months ago but found the lump myself ...6mm , no nodes and so there was no talk of chemo until it was discovered to be TNBc which threw me a bit . Now it's looking like I may well have the BRCA gene so once the chemo is finished ill have to have a hysterectomy and oophorectomy. The chemo side of it I have found much much scarier than the surgery but aside from dreadful bone pain from the neulasta it hasn't been too bad. As it turned out it was a good job I had the other breast off prophylactic ally because there were hypoplastic atypical changes so it was a ticking time bomb. Ironically I have worked for many years as a Lymphoedema Physio and I don't recall anyone having TNBC ....everyone pretty much was either ER or PR or her2 positive and on herceptin or tamoxifen or arimidex. So we are a special group! And it gets tiring explaining to people why there's no point taking those things ... The hardest part for me has been the effect on my 3 boys especially my 15 year old. Even though I have been upbeat and positive ( my moments of terror I have shielded from him!) he is still very frightened but I guess it's only 6 weeks and I'm hoping as time passes he will relax and feel more confident about the future. Someone told me on TC chemo you don't always lose your eyebrows/ eyelashes ... Is that any of your experience ? In a weird way losing my eyelashes concerns me more than my hair !! Happy New Year everyone :)

27 Replies

Show More
  • Janey235's avatar
    Janey235
    Member
    12 years ago
    I'm loving your 'yoga nut' username. Sounds like something you can eat LOL. I must say I didn't like the 'journey' word either but this past year has been a journey for me. A sort of discovery journey about what's important in my life and what isn't. Although I do like the suitcase and passport type as well. I've learnt to appreciate the little things and not worry about what I can't control. I had two lumps in my left breast. One was TNBC and the other was the positive stuff and my oncologist said I was 'extra' special. I didn't want that kind of special thank you very much. At the beginning of my 'speed hump' like you the hardest part was telling my children, although they are 25 and 23 but both still live at home. My daughter took it very hard and it was quite a few months before she could 'deal' with her feelings. But now both my son and daughter have come through fine and things are getting back to normal. I know your 15 year old will rally in time. I'm glad you had a laugh with your family when you did the buzz cut. My look wasn't so much the Sinead O'Connor, it was more like Uncle Fester but my family had a laugh too. Best medicine sometimes. I also had a reaction to the Docetaxel on the first round but I was fine for the second and subsequent doses. The chemo nurses work things out pretty well. Good luck with whats to come for you Karen. I'm sending you good vibes for a healing 2014. Love Janey xxx
  • Janey235's avatar
    Janey235
    Member
    12 years ago
    I'm loving your 'yoga nut' username. Sounds like something you can eat LOL. I must say I didn't like the 'journey' word either but this past year has been a journey for me. A sort of discovery journey about what's important in my life and what isn't. Although I do like the suitcase and passport type as well. I've learnt to appreciate the little things and not worry about what I can't control. I had two lumps in my left breast. One was TNBC and the other was the positive stuff and my oncologist said I was 'extra' special. I didn't want that kind of special thank you very much. At the beginning of my 'speed hump' like you the hardest part was telling my children, although they are 25 and 23 but both still live at home. My daughter took it very hard and it was quite a few months before she could 'deal' with her feelings. But now both my son and daughter have come through fine and things are getting back to normal. I know your 15 year old will rally in time. I'm glad you had a laugh with your family when you did the buzz cut. My look wasn't so much the Sinead O'Connor, it was more like Uncle Fester but my family had a laugh too. Best medicine sometimes. I also had a reaction to the Docetaxel on the first round but I was fine for the second and subsequent doses. The chemo nurses work things out pretty well. Good luck with whats to come for you Karen. I'm sending you good vibes for a healing 2014. Love Janey xxx
  • Yoga_nut's avatar
    Yoga_nut
    Member
    12 years ago
    Hi Theresa ... Well it's pretty weird being part of a club that no-one really wants to be a member of..... and we TNBC girls are an even more select group ! Sorry you had all of that over Christmas ,; I think the waiting is the worst bit . .... Once you have a plan you can get on with it but I found this Christmas a bit tricky having had my first chemo the week before and everyone's very Ho Ho Ho and Festive ; can be a bit isolating . But I have been overwhelmed by the kindness and love shown to me . I'm a bit funny ; not overly keen on this "journey " word ....the only journey I'm interested in is one involving a suitcase and a passport ! I like to think of it as more of a speed hump ;) When do you see the oncologist ? I hope you don't have to wait too long . X Karen
  • Yoga_nut's avatar
    Yoga_nut
    Member
    12 years ago
    Well we've just had the family buzz cut ...not before time because this morning when I combed my hair it fell out really easily. I'm much happier with the Sinead O"Connor look and we had a lot of fun with a before and after family shot....we actually look like we are from some freaky sect ! Or off to enlist as a family in the Army ( not sure I'd pass the medical at the moment ....) Guess will just have to wait and see about the eyelashes/eyebrows. It was Day 6 post chemo that was my dreadful day...constant blood noses so they did my bloods...platelets were hanging in there but neutrophils were .5. The neulasta must have worked even though it caused me worse pain that day than all my 3 labours with no analgesia :( ..."thank-you narcotics "is all I can say !! But the severity of it caught me a bit off guard... Good news is I'll be prepared with plenty of endone next time ( next round 7 th Jan). I also had a reaction to the docetaxol when they first put it in so had to have a heap of prednisolone and phenergan. They said it often only happens the first time. Has anyone had it happen twice ? I'm actually so pleased to start this New Year with a focus to get on with it and be ready for my 50 Th in August !
  • Mich_x's avatar
    Mich_x
    Member
    12 years ago

    Hey Yoga Nut (I am luving my yoga :-)  I am new at it still but luv it)

    Welcome.  I am not TNBC but I am one of your pink sisters.  I am so glad you are doing okay except for as you say that  @#$%&* Neulasta.  Why do things that are good for you also have to cause you dramas.  Luckily the pain goes eventually just keep up your pain medication (which I am hoping you have lots of to get you through the worst days).

    I am also glad to hear you had prophylatic mastectomy so you won't have those extra issues to deal with.

    Your poor son will come around I am sure as time helps him along and if he sees how strong his mum is.  I think you are better to be honest with him though as best you can.  It is a tough age for a boy to be dealing with this.

    I lost all my body hair including eyelashes and eyebrows.  You do cope, it is hard.  Just wear flashy earrings or scarves.  Or go to Look Good Feel Better and they will teach you how to deal with the loss and how to draw them on.  I found that fantastic.

    I am wishing you well hun and you know we are here for you every step of the way.

    Lots of luv always, Mich xxooxoxoxox

  • neenstar's avatar
    neenstar
    Member
    12 years ago

    Hi love,

    Regarding your question about losing eyelashes...I have just finished my 4th cycle of the ghastly AC (with Taxol) and although my hair went pretty quickly, I still have a number of eyelashes, hahaha, enough to warrant putting some mascara on anyway! My eyebrows are so fair anyway its a job to even find them to do the eyebrow pencil...but they seem to have only thinned too, like the eyelashes. I also had some bone pain from the neulasta, but only after the 3rd cycle, the pain after the 4th cycle was hardly noticeable....good news there!!

    Stay strong my friend, your attitude will help you enormously. Laugh even when you dont feel like it, and treat youtself as kindly as you would a dear friend.

    Happiest of new years to us all!!!

    Nina

  • neenstar's avatar
    neenstar
    Member
    12 years ago

    Hi love,

    Regarding your question about losing eyelashes...I have just finished my 4th cycle of the ghastly AC (with Taxol) and although my hair went pretty quickly, I still have a number of eyelashes, hahaha, enough to warrant putting some mascara on anyway! My eyebrows are so fair anyway its a job to even find them to do the eyebrow pencil...but they seem to have only thinned too, like the eyelashes. I also had some bone pain from the neulasta, but only after the 3rd cycle, the pain after the 4th cycle was hardly noticeable....good news there!!

    Stay strong my friend, your attitude will help you enormously. Laugh even when you dont feel like it, and treat youtself as kindly as you would a dear friend.

    Happiest of new years to us all!!!

    Nina