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  • jessmarieberman
    jessmarieberman Member Posts: 10
    edited December 2013

    I am 37, first Dx at 34. I have two kids 3 and 5. First meds after Dx was Xeloda, for 9 months then progression in bone mets even though liver mets were shrinking...now on A/A combo but tumor markers are still rising.... I really hate cancer. 

  • jessmarieberman
    jessmarieberman Member Posts: 10
    edited December 2013

    I haven't found the young survival org that helpful, but mostly it is because the nearest chapter is in San Diego and I am in LA...

  • texasrose361
    texasrose361 Member Posts: 895
    edited December 2013

    hey all new comers- i have been so busy with drama in my life lol! My teenager turned 18 in sept and it was the worst thing EVER! Well she moved out and is still causing me crap- hmmmm thats life i guess :) 

    I never did ivf but did do birth control in high school- 

    My last scans in october were NED so thats good, but my onco whats to keep me on the tykerb/xeloda cocktail :)

  • nbnotes
    nbnotes Member Posts: 338
    edited December 2013

    Texasrose - You've got to "dance with the one that brought you" to NED from what I've been told.  Glad that things are looking good for you, but sorry to hear that you've been dealing with drama. 

    JessMarieberman - Sorry that you fit the criteria for this thread, but glad that you made your way here.  It is nice to have somewhere that people will cry or cheer with you.   Have they done any more scans to see what is going on ? Or are they primarily looking at tumor markers for now?

  • texasrose361
    texasrose361 Member Posts: 895
    edited December 2013

    yeah i've been doin some dancin lol

  • MsTee
    MsTee Member Posts: 18
    edited December 2013

    Thanks for the warm welcome NB notes! 

    I'm so overjoyed to say that the CT scan didn't show any additional metastases, just the bone mets. Such a relief! 

    It's so interesting how quickly no new bad news becomes AMAZING good news. lol My husband and I were literally dancing around the house with relief. :)

  • jessmarieberman
    jessmarieberman Member Posts: 10
    edited December 2013

    Thank you nbnotes! I'm going in for scans mid January to find out how things are looking. I just can't tell. I'm feeling fine on the 5mg but I keep thinking I should bump up to 7.5mg even though I know it is more miserable. It's finding that delicate balance between quality of life and killing the cancer. I'm so happy to have found all you women and seeing those who are NED. It gives me so much hope!! Happy new year to everyone. 

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    evening ladies!!! I was wondering how many of you have had a hysterectomy to force menopause? My cancer is now mets 6 years after origional dx at 32! Now 39. Dr says hysterectomy then radiation and HT. how is recovery and the emotional part??? Anyone with similar treatment plan??? Thank you and happy New Years!!! Kate!

  • nbnotes
    nbnotes Member Posts: 338
    edited January 2014

    Kate - 

    My situation is different because I had mets from the start, but my treatment started with BMX/ discovered mets already there before 1st chemo/ 6 rounds of AC/ expanders out in the middle of that b/c my body had a reaction to them.  I had a hysterectomy 3 weeks after my chemo ended, and then started on Arimidex.  Honestly, the hysterectomy was the easiest of everything that I had been through in that year. I was already in chemopause, though.  I have been lucky to have very few side effects (primarily arthritic types of things not hot flashes or night sweats)

    I am single with no kids; so, yes, there have definitely been some emotions about that, but at the same time, I know that the only chance to save my life being 90 ER+ was to not ever let there be much estrogen in my system.  I won't lie and say that I don't still struggle sometimes with that (both brothers & 2 cousins have had babies in the last year), but I wouldn't reverse my decision for anything either.  Who knows if I would have ever become NED or stayed NED for 8 months without it? And I really want NED to stay around.  Even if I hadn't done that, it isn't like it is/was safe for me to ever get pregnant, anyway.  That is how I rationalize and cope with it, if that makes sense. 

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    nbnotes; thank you for sharing your story with me. I am ready for the hysterectomy, no more periods. I just hope the meds work after.. That is my biggest worry. PET scan Monday but doc doesn't think they will find much because of prelim scan. Where is your mets at?? I do have a hubby and had my son at 19! Kinda glad now.  You will live a long life (as will I), find love and adoption is amazing!!! Happy New Years to you! (((HUGS)))

  • Priscilla0929
    Priscilla0929 Member Posts: 24
    edited January 2014

    I am 35 and have a 3 and 5 year old. Anyone on Kadcyla here? I had progression with Herceptine and started it in May. Great response just wondering how long I can be on it. Any info is appreciated.

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    were any if you ladies put out on perm ssi after your diagnosis or do u all still work? Just curious as I am new to the stage 4 thing! :)

  • MsTee
    MsTee Member Posts: 18
    edited January 2014

    I am newly diagnosed at 37, married, no kids. The real kick in the teeth was that I had just gone off the pill and started taking folic acid because my husband and I decided that now was the time for kids. I'm ER/PR+ and my one says it is off the table because it would be too dangerous for me to have eggs removed with the hormone stimulation, so even working with a surrogate is off the table. It's very likely I'll have a preventative hysterectomy. 

    I'm trying to be okay about this, because I really want to live, but I am in grieving. I just wish that I hadn't put career before kids for so many years, but I thought I had so much time to get around to it.

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    Mstee; u came to the right place for support and venting!!  I already have a child (age 20) so I cannot relate on that level but  just know that there are lots of us ladies who feel just as you do.  No one plans on this so young and we should shouldn't. There are great meds and something new is always coming out, strides in medicine are amazing! Hang in there honey! Adoption is amazing as well!! :))

  • brandall
    brandall Member Posts: 97
    edited January 2014

    Hello, Ms. Tee, JessmarieBerman, KATE1974 and Pricilla0929!  I'm so sorry you have to be here, but I'm glad you found us and hope you can find support here!

    I think it was Kate who asked about the hysterectomy.  I had a full hysterectomy in March of last year.  It was much more tolerable than I was expecting.  I have had some hot flashes, but to be honest, I started tamoxifen the same time as the hysterectomy and it causes hot flashes too :)  I have gained some weight, but then again, I've eaten like crap....so who knows!  But overall, much better than I was expecting!

    Texasrose - nice to see you on here again!  I missed you!!

  • brandall
    brandall Member Posts: 97
    edited January 2014

    Singleton80 - I'm sorry to hear that you have had progression.  How are you doing?

    Asly, I think I missed you!  Welcome!

  • Amanda796
    Amanda796 Member Posts: 2
    edited January 2014

    I read these posts quite often, so I may as well chime in.  My wife was diagnosed in October with extensive mets to the liver and bone.  We have two daughters, 4.5 years old and 4 month old.  My wife was diagnosed following her 6 month postpartum appointment.  It was a real kick in the pants....as I'm sure all of you are well aware.  She is doing pretty well on the taxotere/herceptin/perjeta cocktail.  The primary tumor shrank to nothing with 3 treatments and the liver mets have decreased drastically as well (over 50%).  The side effects have been manageable. 

    KATE1974, we applied for SSDI and were approved pretty quickly.  I have left it up to my wife if she wants to work or not.  I think she is going to see if the hospital will let her work one day a week after chemo.  She wants and needs to get out of the house and get back into the normal swing of things.  As long as you don't make over $1,040 per month, you can still work part-time and collect SSDI benefits.  It's definitely worth looking into.

    I glean the info from these threads and relay them to the wife.  Sooner or later she will be the one that types out the messages once she understands how helpful y'all are to one another.

  • candycandy
    candycandy Member Posts: 7
    edited January 2014

    Hello Ladies! A Happy New Year to all.

    I am 33 yrs old and dx as TNBC on Nov 27 2013. I am originally from Japan. I grown up there until 21. I moved to the US all by myself for better future. 

    I got phone call from my doc on the day before the Thanksgiving weekend and it was the worst thanksgiving ever! Anyhow, I am totally over with crying and blaming myself. Now, I am moving forward and got my lumpectomy on Dec 16th, and will go to my first Chemo on Jan 9th! I am nervous!!! My lumpectomy was successful with all negative margins and no lymph involved! My mother visited me from Japan for a week, so I gave her the good news to go back home. This good news also encourage me to be positive and look better future for myself. Still, I am sometimes anxious about recurrence because of TNBC has higher possibility of that compare with other BC. Also I am young as 33.... I am trying not to think about it but can't help sometimes. 

    It is new year and I wish for better year. 2013 was quite a bad year for me that I started with laparoscopic myomectomy for my uterine fibroid got worsened. I got 4 units of blood transfusion on May 2013 and the surgery followed next day. Now, because of my BC, I am thinking about possible hysterectomy that I tried so hard to avoid last year.....

    My emotions are very easy to up and down.

    I had to leave my job (FMLA) for all treatment because my job is nursing assistant (CNA) and too physical to keep. After surgery, my recovery has been wonderful and amazing but in the other side, I have financial concern since my husband is just student and we will have no income during my treatment. I have to deal with financial assistance besides of what I am dealing with my own treatment. Talking to my support group and this discussion board is the best treatment for my heart and feeling. 

    Thank you ladies/sisters! 

  • BethCon1
    BethCon1 Member Posts: 77
    edited January 2014

    KATE, I'm currently on disability (I;m 34) and I honestly don't see myself coming off of it anytime soon even though it's kind of making me crazy.

  • CJRT
    CJRT Member Posts: 221
    edited January 2014

    Priscilla - I was told that you can stay on Kadcyla as long as it is well-tolerated.

  • texasrose361
    texasrose361 Member Posts: 895
    edited January 2014

    candy- what a small world! I grew up in olympia and ALL my family still lives there!  (as youre driving from downtown to the west side you'll see a tudor brown/white color house CANT MISS IT ITS BEEN A LANDMARK FOR LONGER THAN WEVE BEEN  HERE- i nannied there for 3 years! Wave to "my boys" as you drive by!)

    Amanda(& husband)- welcome, it is nice that you're on here for her. Sounds like she is doing well. 

    Brandall- missed you too girl! Life has been a roller coaster this summer! (And not the good kind at the ammusemegnt park!

    Kate- i was on ssdi which was helpful. We cant stay under the income limits b/c our house payment is nearly that much (never mind clothing and feeding 4 growing children!). The $300+ a mo, which eventually eroded into only $1 a mo then morphed into "even though you reported a change in Jan we didnt apply it til June so here is a bill for a few thousand dollars"- not helpful to us personally, but if you qualify and need the help more power to ya girl. Correction- amanda those income limits vary by house hold size and who is working, very tricky web they weave :) i am notvsurecof kates particular houshold situation, but some times the limit can be lower or higher ( our limit is $1200 something)

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    thanks ladies!! Texasrose! And Amanda796! I appreciate the information. I am just trying to pland for furure. I did look into ssi. I live in CA so living is higher. I would receive 1700.00 a month which is not bad. Sad that the 19 years that I have been at my job I wouldn't get any of my pension. No more dis retirement benefits. Sad!!!!! But if I pass away my husband would get half! Makes no sense...... Going out I would loose about 1300 a month! Ouch. SDI pays good so I will use that up then decide. I never thought in a million years I would be thinking about this at 39! Makes he sad..... :( have a great evening everyone! 

  • texasrose361
    texasrose361 Member Posts: 895
    edited January 2014

    what! Iwas at their max for where i live and it was not even $400! Thats a family of 6 mind you!

    Let me clarify you are applying so social security disablity and NOT supplemental security income- there is actually a HUGE differnece!

    How much time do you need to stay at the job to get it? No way to work like an hr a week til you can????? That would be frustrating!

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    Texasrose, I have to be 50 to get any of my retirement. As far as disability, I am not sure how Texas works but in CA you pay into social security each week and based of my contributions since I started working (age 15) I would get 1700 a month. Right now I am receiving SDI which u also pay into, I can collect that fir one year. It's based of prior years earnings. So I get 2200 a month right now. I don't know much about supplemental ssi. Do you all pay into ss each month in Texas on your pay checks??

  • singletona80
    singletona80 Member Posts: 44
    edited January 2014

    Thanks Brandall, I'm okay .

    I have just completed one cycle of Xeloda.  I did Xeloda and taxtotere combo in the past and then switched to Arimindex and Zoladex injections when I got pneumonia . So my ONC decided to go back to Xeloda but without taxtotere and see how that goes (said Xeloda should be gentler on me).  I'm taking 1500mg twice a day for 14/7 .I have some SOB but it's getting better

  • nbnotes
    nbnotes Member Posts: 338
    edited January 2014

    Kate - my mets were in my liver. I am an adjunct professor & primarily teach online; so, I chose not to pursue ssdi since that is easier to do than many other things.

    Welcome MsTee, Amanda, & candycandy!

  • KATE1974
    KATE1974 Member Posts: 62
    edited January 2014

    nbnotes, great way to look at it. I do have a desk job so I would think I am ok but I have the worst pain after sitting for long period of time!! And an employer who is not very forgiving of special needs.  I have a lot to think about! Thank you! :)))

  • kjones13
    kjones13 Member Posts: 662
    edited January 2014

    sorry if this sad news has already been shared, but I just saw it today...spamgirl passed on 11/12/13. Ebru shared a message from her husband. I am just in shock and so sad for her family.

  • stagefree
    stagefree Member Posts: 360
    edited January 2014

    😔 Kjones, it was a hard loss for many of us, Spam was so dear.. But again who isn't here? 

    Singletona80, İ definitely suggest the incentive spirometer for breathing exercise, it took me off the oxygen tank, reminding my lungs İ am not dead yet so they'd better get up to work!

    Btw hi to all newbies, İ am sure we will be quite acquainted in a short while.. Just a bit of time to digest the news and the new normal mode is switched on.. 

    Speaking about that, Kate, it's been exactly a year since İ shut down my biz İ felt the accomplishment of my life till the moment of dx. Well now each breath is as valuable an accomplishment as anything else ever has been.. Totally a personal decision, no right or wrong at this point.. But İ would seriously consider this a wake up call to decide how you prefer to spend the remainder of your life? İt was an easy decision for me.. İ thought for a sec about how my funeral would be, who would attend, really mourn after me etc.. 

    Voted for family & friends and to look after myself the best possible way as long as İ would be allowed.. Chose having brunch everyday, go for a walk by the seaside instead of an airconditioned building, gave away most of the fancy stilettos İ always hated cos they always hurt my feet! And bought new pairs of sketchers in each color! Yep to complete the costume İ switched to P!nk mode firing that career b@&"ch boss that haunted my soul for so long.. The only thing İ resent has been the amounts İ had spent to all that top notch suits which İ gave away without even thinking a second. My wardrobe is healthier even if İ am sicker ha ha ha :)))

    Never once in my life thought İ'd go punk as an executive business consultant 😳

    Now after nearly 2 years after dx, İ believe  anything is possible any minute and enjoy any suprise each new day brings along, try not to hang around in the dark places of my mind no matter whatever news İ receive any moment.. Can't change the bad moments but have the hope of them to be over soon to welcome a more tolerable one or even a great one. Quite striking, one even starts to laugh outloud at times in joy in this actual state.. Tried and true 😉. 

    As Jonnie Walker ads say KEEP WALKİNG.

    Hugs

    Ebru

  • texasrose361
    texasrose361 Member Posts: 895
    edited January 2014

    well said ebru! Having the mets in my brain/eye this week was a MUCH NEEDED wake up call. I have done a 180 this week, i even said "thank you cancer" 

    I was going through the motions really and sadly my kids were suffering. Its hard to admit- i have done some much needed soul searching and have humbled myself greatly!

    Funny i have been weeding through our belongings too girl! I am passing them on to those who WILL enjoy them here and now! 

    YOU ROCK!

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