Anyone in their 20's or early 30s with stage 4?

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texasrose361
texasrose361 Member Posts: 1,829

Just wondering....  I also posted this in the stage 4 forum... would love to connect with people in my same situation

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  • janicemarie3
    janicemarie3 Member Posts: 124
    edited October 2010

    I am 32 Stage IV was my original diagnosis.  I have mets to my left rib and rib joints, both hips and spine.  I was diagnosed January 7th 2010.  I have been doing this 10 months now.  i am a mother to 3 children 9,6,and 2.  I was on Taxotere Carbolplatin Herceptin and Zometa.  I finished my chemo 4/23 and now I am getting Herceptin and Zometa every three weeks.  My  tumor was 7cm and after my chemo it no longer showed up on the scans.  So now we are tring to maintain what I have in my bones.  I was on Tamoxifen for a month but it made a lymph node pop up with cancer so they took me off of that.  I ended up having my ovaries removed 5 days ago.  I think that you will find lots of great information on this site. 

  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    GLAD to hear that about your tumor! one of my breast tumors was 11.5 cm that one by touch is indistingishable from normal breast tissue but is barely showing u on my scan... i just had it done 2 weeks ago and i am only 1/2 way done with chemo so i have high hopes for the rest of everything!!!!

    I also am taking herceptin and zometa and taxotere but not the carbolplatin- whats that one target????

    thank you for your response!

  • hydeskate
    hydeskate Member Posts: 297
    edited November 2010

    I am 32 with Stage IV Mets in lungs/liver.  Currently NED. 

  • jessica34
    jessica34 Member Posts: 4
    edited August 2013

    I'm 34 years old and was just diagnosed with stage IV- I think.. it started in my breast and spread to my lung.liver and bone.. But they only found about 2 spots on my liver- which are supposedly gone now after 2 treatments and 1 spot on my lung and 2 on my bone. My doctor never staged the cancer.

    I have a 22 month old and am scared beyond belief. How do I know if/how much time I have with her? I feel so positive that I will beat this, but I also want to be realistic. I feel great! I've had only 3 treatments now and I believe I have 21 more to go. Anyone out there that can relate??

  • Ready2Win
    Ready2Win Member Posts: 175
    edited February 2011

    Hi Everyone

    I am 34 years old.  Diagnosed at 32 with Stage IV.  I have a 5 & 7 year old. For the most part I feel pretty good.  I take it one day at a time and hope for the best. Hope everyone is doing good.

  • hydeskate
    hydeskate Member Posts: 297
    edited February 2011

    I am 32 about to be 33, I was dx at 29 with Stage IV.  I have been NED for 18 months and counting.

  • stitchyphish
    stitchyphish Member Posts: 50
    edited February 2011

    Hi TexasRose, I've seen you in the Stage IV forums.  I'm 30 w/ Stage IV.  My original diagnosis was Stage IIb at 27, then I was diagnosed w/ Stage IV at 29 about 4-5 months ago with mets to the liver.  It looks like we had pretty similar timing.

    Jessica34, my oncologist never talked staging, either.  I had to look it up.  I think doctors don't want patients to start looking up prognosis info and losing hope.

    I've had issues with the whole "how long will I live" inner monologue.  I want to be positive and believe that I can live for a long time, but I want to be realistic and take care of that bucket list.  I don't have children, and I never really planned on it.  I have a BRCA2 mutation, and I don't want to let that gene spread anymore than it already has.  Every time I try to bring up planning and end of life discussions my husband stops talking and thinks I'm being too negative.  I guess we'll know when it's the right time for that, but I wish I could talk to someone about it.

    What treatments are you all on?  I'm at Dana Farber in Bostin in a Phase II trial with temozolomide and a PARP inhibitor.  My liver mets have shrunk by about 55%, and my oncologist is very pleased.

  • petjunkie
    petjunkie Member Posts: 317
    edited February 2011

    Hi All,

    I had DCIS w/microinvasions at 33, then a recurrence of stage IV in bones and liver at age 35 (I'm 36 now). Have done taxol and femara, and right now am doing tykerb, herceptin and zometa. I had my ovaries removed last summer.

    I feel pretty good right now, so I'm taking lots of trips and trying to enjoy everything I can. I'm single, no kids, and though I've met way too many young women with stage IV bc, very few of them are single and understand what that's like.  

    I am hopeful that all of us will do better and better as new treatments come around. But I try to be honest with myself and I recognize that how I'm doing can change on a dime. And after only about 18 months as stage IV, I've seen so much loss just here on the boards and also lost a friend in my real-life support group.  I plan my life in 3-month increments now, knowing that with each scan I could have a treatment change that will be tough or progression that can't be stopped. I believe that I'll make it beyond the 2.5 year average for my diagnosis, but I don't truly believe I'll still be here in 5 years. I don't dwell on that, but am not in denial either. It's a tough line to walk.

    Karen 

  • stitchyphish
    stitchyphish Member Posts: 50
    edited February 2011

    Is everyone still working?  I decided to go part time in March for an indefinite period since I'd like to enjoy my time while I feel good.  I love my job, but it's a little stressful and I work a lot, so if I go part time I feel like I would work that amount of time and not much more.

    So far I'm on a phase II trial that has been going very well.  I take temozolomide for 5 days a month.  It's an oral chemotherapy drug with far fewer and less intense side effects than the A/C I had after my initial diagnosis.  I also take a PARP inhibitor, which has no side effects as far as I can tell.  My liver tumor was previously so large that it hurt just "being" but 2 days after starting treatment I immediately felt better.  My tumor has shrank about 55% since I started treatment 4 months ago.  They've reduced my chemo dose since it was causing low platelet counts and it was delaying the start of treatment.  While I feel better on this lower dose, I hope it still kicks that tumor's ass.

    Petjunkie - you say the things I feel like I'm not allowed to say out loud!  I definitely want to "stay positive", but I want to make sure I take these good days for all that they're worth because we simply don't know how long they will last.

  • petjunkie
    petjunkie Member Posts: 317
    edited February 2011

    I quit work immediately because my job involved 100% travel. There was just no way I could do treatments when I had to fly to CA every week. In the end it's been a blessing, as I've enjoyed having my time to spend as I wish. Of course, my family is helping me-- there is no way I could live on SSDI. It's frustrating sometimes to feel like I've lost my independence.

    Stitchyphish, glad to hear that your treatment is kicking butt!

    Just curious if any of you have a YSC chapter where you live? Or some other kind of support group you have found useful? 

  • hydeskate
    hydeskate Member Posts: 297
    edited February 2011

    I have been working full-time since my dx, I was actually very lucky not to have any side effects from my treatment expcept sinus infections, I did have to decrease my hours normal work day is 10-12 hours, I was lucky to get 8 a day.  My first time around with Abraxane and AC I actually had chemo in the morning and went to work right after and planed treatments around the soccer games.   THe 2nd time I had Abraxane I decided to take the whole day off for treatment just becasue.

    The most time I took off was for my bmx, like 2 weeks and I was going bonkers.  Work for me has been a place to get my mind off the fact that I have Stage IV, that and I LOVE my job (equipment manager in college athletics) its also flexible and I have a very comfortable sofa in my office for naps.

    Support group wise:  We don't have a YSC chapter in NC, I have just started using the boards about 6 months ago, wish I would have found them when I first got diagnosed in 07/08,  Support wise was my work was great, I worked for and knew Coach Kay Yow who fought BC for over two decades, we where both going through treatments at the same time,  plus several other women in the department had or was fighting BC to my surprise.  My supervisor told me I wasn't the first nor the last that would tell her I had cancer.

    I have been NED for the last 18 months, it has been great not to have chemo or radiation just scans.   

  • jessica34
    jessica34 Member Posts: 4
    edited March 2011

    Sorry I haven't responded in so long.I try to stay off the Internet as much as possible. I am working only 4 days a week bc I am in phase 3 of chemo now.

    I was originally diagnosed with stage 1 bc, 4 radiologist reviewed my CTS and said no met, I demanded a PET scan. I feel like if I did not ask for the PET I would not be treated correctly.

    Did any of you ladies get a PET scan or just a CTS? I have heard way too many stories about dr.s mis-diagnosing the initial stage and not being aggressive enough. I go in for treatment once a week. Herceptin and Taxol. No side effects except for hair loss.

    After my first post on dec 5th,12 days later my doctor called me and told me my scan was clear!!! My CA 15-3 went from a 1590 (bfore treatment) down to 64, and my circulating tumor was 541 and after 4 weeks of treatment it was 0!! she said in 20 years she has never seen anything like it! the doctor and nurses were calling me a Christmas miracle.

    well I go in for another PET on March 9th at 8:45am I ask that, if possible, you pray for me. Pray that my scan is clear and that I will only have 8 more weekly treatments to go and that this awful dis-ease never comes back.

    Has anyone seem the movie Food Matters?? I HIGHLY recommend it. I live my life by it and truly feel that by changing my diet to all Organic, raw vegetables, juicing once or twice a day,cutting out dairy, sugar, red meat and pork has helped tremendously! I also bought a great cookbook called "The Cancer Fighting Kitchen"  GREAT recipes!!

    I receive my treatment at Fox Chase Cancer Center here in Phila. Anyone else??

    Thank you for listening,letting me vent, sharing and hopefully for your prayers. Please hit me up if you are in the area! I plan on doing the 3 day walk i Oct with about 12 of my girlfriends.

    http://www.the3day.org/goto/jessicacepegi

    God bless us all!

  • Groovywilma
    Groovywilma Member Posts: 450
    edited March 2011

    This is my first post, although I have been checking out these discussion boards since the end of December.  The information I have gotten from these boards have been so great and helped reduce my "freaking out" over this diagnosis. 

     Just got diagnosed after the new year (was very stressed out over the New Year weekend knowing I would be getting results after the holiday weekend) and found out a week later that the cancer spread to my bones!  Throughout much of last year I was experiencing some moderate pain in my lower back/ hip/ groin area and now I know why!!!  

    I'm 36 years old and have no family members with breast cancer.  I started on Tamoxifen at the end of January and have had two Zometa infusions (doing it monthly).  No weird side effects so far!  I am still working which is good, but still have pain in my hip/ groin area that makes me limp and walk slow.  I'm in San Diego.

    Best of luck to everyone and thanks so much for the information and the support.  

  • LibraryJenn
    LibraryJenn Member Posts: 101
    edited April 2011

    Hey Ladies, I was stage 3 for a year...just found out I'm stage 4 now. Mets to liver, lungs, & far lymph nodes. I'll hopefully find out what my treatment will be before the weekend. I have a little boy who will be three in June. I'm so scared of not being around when he needs me.



    Oh yeah, and I'm in Saskatchewan, Canada.

  • Vanessa32
    Vanessa32 Member Posts: 6
    edited April 2011

    hi im 32 with stage 4 to lungs, bones and lymph nodes. i have a 2yr old and a 9 month old.  currently on a PARP trial and lung mets have disappeard  bones are stables.  im from Australia.

  • kyroheal
    kyroheal Member Posts: 48
    edited May 2011

    Hi Everyone,

    I'm 27 years old and recently been diagnosed with BC. I am still waiting for a pathology report after my lumpectomy last week. i just wanted to know if you experienced any symptoms to know you were stage 4. lung/bone/liver symptoms. I am really paranoid waiting for the results. Thanks

  • stitchyphish
    stitchyphish Member Posts: 50
    edited June 2011

    Hi Kyroheal,

    I did experience symptoms.  I had a strange sensation, like a lump on my ribs when I took a deep breath during yoga.  It turned out to be a tumor in my liver.  Eventually, it got painful to breathe deeply.  I assume you're getting CT scans and bone scans shortly (if you haven't already)?  At this point, that should be the best way to determine if you have mets.  This is a really hard time but once you have a treatment plan in place, I think you'll find that you feel better emotionally.  The waiting is definitely the hardest part.

  • texasrose361
    texasrose361 Member Posts: 1,829
    edited June 2011

    Hi all!!!! For some reason this thread disappeared from my favorites, i hardly roam the boards so i havent been here in a while!!!

    Its good to hear that y'all are doing well with your dx.

    Welcome everyone!

  • kathrin35
    kathrin35 Member Posts: 3
    edited February 2012

    I am 35 and was diagnosed with stage IV. Mets to lung,liver and bone.

  • Silke80
    Silke80 Member Posts: 4
    edited July 2012

    I´m 32 and I was dx 2010 with stg.II

    Stage IV since March 2011

  • Sabine87
    Sabine87 Member Posts: 4
    edited November 2012

    I am 25 with stage IV. Mets to lung ond bone

  • Sabine87
    Sabine87 Member Posts: 4
    edited November 2012

    I am 25 with Stage IV. Mets to lung and bone.

  • hydeskate
    hydeskate Member Posts: 297
    edited November 2012

    Hi all its been a while since I checked this board been busy at work.  Hope everyone's treatment is going good.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    I just found this board and am hoping that it is still active.  I was just diagnosed with brain mets. I am 39 and have 4 children (10, 7, 4, 2).  I also have liver mets.  I am searching for lifelines and people who understand my fear.  Was originally diagnosed December 2010.  I had BMX, chemo, and radiation through 2011.  I threw everything I had at it. I guess its time to strart again, but this time is different.  Looking for others in same predicament.

  • Katja83
    Katja83 Member Posts: 9
    edited June 2013

    Hi I am 30 with mets to liver and bone. I have a girl 5 y and a boy 3 y old.

  • Katja83
    Katja83 Member Posts: 9
    edited June 2013

    Hi I am 30 with mets to liver and bones. I have a girl 5y and a boy 3y.

  • crsp34
    crsp34 Member Posts: 7
    edited July 2013

    Hi Ladies,

    I'm new to this board, and hope that it remains active. I'm 35 w/ mets to the bones. I was 29 when diagnosed w/ mets. Sadly it was all too late for me to have children. I am always grateful to meet young mets fighters.

  • Christel80
    Christel80 Member Posts: 4
    edited August 2013

    I am 33 Mets in brain and liver.

  • crsp34
    crsp34 Member Posts: 7
    edited August 2013

    Hi Ladies,

    I started a program that sends care packages to Young Women with Mets. It has fab goodies from, sephora, etsy, Bloomingdales and other places with items carefully selected for all of you.

    -I make a limited amt every month for those that would like their package right away. No reasons needed just say the word!

    -Otherswise, I have a raffle every other month for those that are able to wait.

    -Once you are in a raffle you are entered in every drawing until you win!

    -Unless you choose to opt out or request to be sent one ASAP.



    -Just PM me add I will add you to my list. Stay up to date by checking out my wordpress:

    whimsandwoesbyc.wordpress.com



    Please sign up, it's totally free and all about spreading good cheer!

    Hugs,

    Christine

  • mygodisavow
    mygodisavow Member Posts: 17
    edited August 2013

    Hello everyone,

    I was 23 ( stage IIIa) when I was diagnosed with breast cancer and last year (at 27) became stage 4 with bone mets.

    I am never giving up!

    Love to all <3

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