Calling all TNs

16136146166186191198

Comments

  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2012

    Happy Birthday, Annie!

  • Tazzy
    Tazzy Member Posts: 2,546
    edited October 2012

    LRM216 - thanks for that article.   I am going to share it on another thread... someone was mentioning that she asked that exact question

  • OBXK
    OBXK Member Posts: 791
    edited October 2012

    Lrm - thanks for the link. Why couldn't I have won the lottery instead :)

  • adagio
    adagio Member Posts: 982
    edited October 2012

    Bernie - I know what you mean about scary articles on the internet!! I really have to try and stay away from reading them. Thanks for all the great advice - I have made mental note of them especially the insensitive remarks.

    cocker spaniel - that's a great idea about the shaved head. 

    Did either of you get a wig? I just can't imagine not having a head of hair!!

    Also, getting advise on foods to eat is extremely useful.

    I saw the surgeon today and it is chemo first for me. The good news is that she said no more surgery at this time because she has gone right to the chest wall and there is nowhere else to go. So at least I don't have to go under the knife again at this time!

    Thanks for all the feedback.

  • adagio
    adagio Member Posts: 982
    edited October 2012

    Saw the breast surgeon today - 3 weeks after surgery - and she said that she doesn't need to see me again - I was surprized. It is good in a way, but yet I read about other women having follow ups with their breast surgeon. 

    Thoughts?

  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2012

    Karen:

    You're gonna win - the big cancer lottery - this time around, I feel it for sure! 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited October 2012

    LRM thanks for the article. That gave me more reassurance than anything else I have read.

    Karen I don't know about the cancer lottery but I wouldn't mind winning the other one.  I buy a ticket every week but it never comes my way.  My old feller says you gotta be in to win but all I seem to do is contribute to somebody else winning it. Oh well, guess thats the least of my worries.

    Adagio re the wig. I bought one but hated it.  It wasn't anywhere near my color and I was always afraid it would blow off in the wind.  It looked like a boufant style and although my friend who is a hairdresser trimmed it there is only so much you can cut off.  The actual bandanas made me feel more like a cancer victim than anything so I have found cute hats the best.  I brought so many in the markets and shops and have all the colors now for my outfits.  If you look around there are some really pretty, nice,  inexpensive ones about.

    Re the hair.  I think this is one of the hardest things for us to go through when we have cancer.  My hair started to come out in big wisps about two weeks after chemo started and my head was hot itchy and painful.  One day when getting out of the shower,   on the towel I had all these wispy lumps that looked like a spider web. My electric towel rail is by an open window so after chucking the towel on the floor and stomping all over it (I hate spiders) I found it was my hair. So to take control of the situation I arranged for my hairdresser to come and give me a number one.  We all laughed, there was no teary bits and I didn't look half as bad as I suspected I would.  It was very empowering choosing my own time to take have it cut off.

    Yep steer away from the Internet.  I scared myself silly reading all the things on there. And re food I kept away from all spicy  and strong flavoured food because I got a bit of heartburn and although Losec helped me there I'm not a spicy food eater anyway. 

    You will find what suits you and what doesn't but all in all I had a good appetite right the way through and water melon was a godsend to me.  Just remember to drink at least 2 litres of fluid a day, not an easy task but just keep sipping it often and you soon get through the 2 litres.

    Other ladies will no doubt come on here and let you know what worked for them and what didn't. Every bit of information will help you decide what is working for you and what isn't.

    Sending warm wishes to Hope, Dawn, Tazzy, Jan and anyone else going through treatment.  We will get there in the end.  Annie          

  • Tazzy
    Tazzy Member Posts: 2,546
    edited October 2012

    Be wary of Dr.Google... oh my when I was first dx'd I scared the crap out of myself.  Was actually amazed I was still alive.   Now I email my docs office and let them explain it to me.

    adagio: I saw my BS about 3 weeks after surgery and he said 'see you in a year'.   I do have 3 monthly meets with my MO and now weekly meets with the RO whilst on rads.

    Rads are a royal pain in the arse.  It really is like Groundhog Day.  I thought this would be the easy part and physically it is.  Mentally and emotionally I am done - least for today.   I am just in a funk.  Saturday night we were invited to our neighbours for a surprise birthday party.  Normally I'd be loving it.  I spent 2 hours there and was exhausted and just fed up so came home Frown  Enough of the pity party.. off to make dinner.

    Hugs to you all xxx

  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    Jan - I am thinking of you. Please let us know when you are back.

    Happy Birthday Annie 

    I go for my fourth chemo treatment on Wednesday. My fingers & toenails hurt so much.:(

  • funnygirl75
    funnygirl75 Member Posts: 13
    edited October 2012

    great news today, went for a mammogram and a sonogram and if it wasnt for the markers the doctor couldn't tell where the mass was. He said " even if I wanted to give you a biopsie, I would not know where to start" It's gone ladies! All gone.



    I'm so damm happy! Now I focus on Friday, big day, bmx and ovaries. I'm scared but I can do this.



    Life is good,life is grand and I can do anything, we can do anything.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited October 2012

    funnygirl... woo hoo! 

  • borntosurvive
    borntosurvive Member Posts: 213
    edited October 2012

    HURRAY Funnygirl.  SO happy for you.  Go get em girl in surgery. 

    Thinking of you Jan

  • gillyone
    gillyone Member Posts: 1,727
    edited October 2012

    LRM, so, according to this article, 31% of stages I, II and III in total will have a recurrence. 9I'm assuming we are talking about getting to stage IV and not a local recurrence?) Thirty per cent is a number often quoted on these discussion boards. As TNs, we know that, generally speaking, we are more likely to recur earlier than later. While it is interesting to see the breakdown of percentages by stages, it still adds up to a whopping 31% and that is not taking into consideration the ones who start off at stage IV. So 31% seems to be a somewhat conservative figure. Not to try to put a damper on people, I don't find much that is encouraging from the article. The BEST information was that more aggressive tumors seem to recur less - and as TNs, we mostly have aggressive tumors.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited October 2012

    My MO told me TN tumours are "front loaded," i.e., if they are going to recur, they'll do so sooner than later. 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited October 2012

    Funnygirl wonderful news for you. You will be fine on Friday and you CAN do this.  Go out and buy a lucky lotto ticket and see what happens. Great news. 

  • JazzyJ
    JazzyJ Member Posts: 126
    edited October 2012

    Funnygirl- Yippee!! Wonderful and fantastic news!!!" Woo HOO!!,

  • OBXK
    OBXK Member Posts: 791
    edited October 2012

    Funnygirl - wonderful news! I hope your surgery goes off without a hitch and that you have a speedy recovery. Be gentle with yourself!



    Annie - I can just see you doing the naked spider dance! I think I'll get a pixie cut soon, so that when it starts going, it will be less of a mess. Then I'll buzz it all off myself!



    I ordered myself an adjustable bed with a latex mattress today. When it comes to beds, I am the Princess and the Pea. Just about every bedroom in my house, has a bed I didn't like in it ;)



    Sleep well ...

  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    @Funnygirl, That is good news. Are you having a double mastectomy & your ovaries removed on Friday?

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited October 2012

    I just adore animals and this little pumpkin just popped in to say hallo.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited October 2012

    that is one cute pooch... but please dont dress dogs - IMHO !!

  • funnygirl75
    funnygirl75 Member Posts: 13
    edited October 2012

    queen kong- yes that's what I'm getting, the full package. It's a 3 for 1, I'm also getting reconstruction with TE. The great thing about all this is that, I'm gonna be 5 pounds lighter after the surgery! and no dieting required! lol

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited October 2012

    Taz - I agree. I hate it when people put clothes on dogs or dye then different colors. It does look gorgeous though.  I could take it home but then again Chloe might give it a hard time.   

    Funny - you lucky girl. Go for it.  

  • mags20487
    mags20487 Member Posts: 1,591
    edited October 2012

    adiago..welcome.  Ask anything and these great ladies will step up with answers and experiences they have had.  For me I had BMX then 8 chemos then 35 rads.  Chemo was easier than I had imagined in my head...not without Side effects but definitely made it through.  Worst parts for me were the yucky taste in my mouth.  Could not eat my faves so ate whatever i could palate.  Even my wine tasted aweful.  Hairloss was tough but I bought lots of beautiful scarves and some cute hats to cope.  Wigs were only worn on a special occasion as I hated the feel of them on my bald head.  You can do this too.  Just surround yourself with positive people who are willing to help you with whatever you need.  We are here for you too!

    Diep surgery planned Nov 1st in NOLA and just got cellulitis in my arm.  Really hoping the surgeon will not may me reschedule as I waited 5 months for this appointment.  Crappy timing...should hear from her today..fingers crossed.

    I must say that I actually have times that I do not even think about cancer.  Those are great moments.  Cannot wait til it is completely gone from my mind.

    Love and Hugs..Maggie

  • Luah
    Luah Member Posts: 1,541
    edited October 2012

    Funny: Excellent news.  Studies show that a complete response like that offers an excellent prognosis. 

    Gilly: Math isn't my strong suit, but just adding up the percentages doesn't work, as they would all be weighted according to how many recurred in each group. We would really need to know raw numbers, add those up and then figure out the percentage against the total. I bet it's less than 31%.

  • borntosurvive
    borntosurvive Member Posts: 213
    edited October 2012

    My MO told me that the first 18 months for us TN's after chemo are the "crucial" months.  I chose to count from my surgery date as that's the date that ALL my cancer was out.  At the end of the day, it is what it is.  My MO said that some people will come back in who had a very small mass, stage 1 and level 1 whereas some women whose lumps were bigger and they were stage 3, never have a recurrence.  Who knows!!! 

    The fear of recurrence is what I am deeply routed in right now......walking around just waiting for that other shoe to drop.  I am scared to even feel good because does that mean something will happen?  I am just coming up on my year of diagnosis so it's all those first year milestones that are hard.  I just wish there was a test that they could do to say that you will or you won't ever have cancer again.  The not knowing and waiting to see is so stressful for me. 

  • gillyone
    gillyone Member Posts: 1,727
    edited October 2012

    Born - I promise the fear does become less with time!

    Luah - I understand what you are saying. There are way more stage Is than IIIs for example, so that would bring the overall percentage down. I am surprised there isn't a bigger range between the stages.

  • OBXK
    OBXK Member Posts: 791
    edited October 2012

    The UPS guy, just caught me in my night gown at noon. He asked me how I was doing and I said "I'm dying of cancer, but the upside is that I can wear my jammies all day". Then we both had a great laugh. I have no idea why I told him that - I am warped!

    Yesterday, I licked the paint off a bank teller.  In my defense he did deserve it, but I normally save my razor sharp tongue, for larger offenses. Cancer can make you crazy!

    Annie - that little Terrier is so cute - but I can hear that ankle biter barking from here. We haven't heard anything about Chloe in awhile?  She hasn't gone to live on a large farm has she?

  • txjunebug
    txjunebug Member Posts: 212
    edited October 2012

    Had re-excision yesterday. It was a drive thru and back home in less than 6 hours.  Doing okay don't need pain meds.  Now waiting to go to MO to plan the next steps. 

    Thank you to those Cocker & Bernie for giving me hope that I won't be living in hell during chemo treatments.  Chemo scares the crap out of me.  I don't think I'll like a wig just me personally.  Leaning towards hats.

  • QueenKong
    QueenKong Member Posts: 154
    edited October 2012

    Funnygirl, I like you attitude. I'm going to be thinking of you and looking to hear from you after the surgery. I still haven't decided what to do about mine, still waiting for the BRCA results.

    Born - I hear you though I am not even closeto where you are yet. There needs to be more research so we do know. The recurrence is such an unknown. 

    OBXK - glad to hear I'm not the only one with the crazies. Jammies all day is a fashionable thing these days I hear.

    Why don't these boards spell check? so frustrating. I think chemo brain is ruining my ability to spell.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited October 2012

    Karen you make me giggle so much.  It makes my day. I don't think you are warped I think  you are just beautiful and so funny.   No Chloe is still here (sometimes unfortunately, no most times unfortunately!).  Her latest mishap is she chewed through my headphones that I use for  my dictation.  Even got a clout from the old feller for that one. So she is  still a little shit.  She found an egg carton in the rubbish bin today, god knows how she got in there cause its got a lid on it, but she chewed it up into little pieces all over the garden.  One of these days I'm gonna stop my hand from itching!!!!

    How are you going Jan ok I hope. 

    How are you Taz. Not finding the rads too worrying.

    Still nothing from Kathy. She is beginning to worry me.  

    Have a pain free, peaceful day ladies. I better get back to work.  Annie 

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