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

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. 

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

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.

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.

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.

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.   

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.  

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.

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.

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

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

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

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

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.

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