Has anyone here been given a Time Frame? or is it only the ladies with triple negs that are given time frames?

I know my onc has never given me one, but  I did ask a Rads Onc when I was 1st dx with mets and he said to take it 3mths by 3mths....

I was told by one Onc that ppl like me can live for yrs and he had patients who were alive 14yrs down the track...

who knows...and who wants to know?

hugs

oz

I have never been given a time frame.  And I try not to look at that information, but sometimes it presents itself. We all know that there are those people that can live a long time with mets.  I try to focus on that, but I only try to look a few years out.  

My kids are so young that I am trying to look for shorter term accomplishments.  My 5 yr old is in catholic school for kindergarten, because they offer full day.  But for first grade I am switching her to public school, because I think she will get a better education there.  My 3 yr old will go to the catholic school next year for pre-K because they offer 3 full days and it will be easier for my chemo schedule, treatment, tired days, etc.  but I look forward to when she is in 1st grade, they are together, and it will be easier for me, and others helping me.

That is my current short term goal. But wouldn't it be great to see them graduate high school, college, get married and have kids.  I would love to be there to support them.

sorry for such a long post, Oz.  But the good news...I had a good conversation with my onc last week. She had been to some kind of conference/meeting the previous weekend and she said she walked away even more encouraged.  She mentioned different doctors/researchers at different universities and what they were studying.  (I was glad to hear that they are working together. I had no idea how that worked.) She said it took a long time to try to prove that there are breast cancer stem cells.  She spoke a lot about "daughter cells" and how current treatments only attack the daughter cells, not the stem cells.  She feels confident that they will have a drug in clincal trials within the next 2-3 years to go after the stem cells.  This is very encouraging to me!

I have heard of several people on chemo for 3-4 years and of course my goal is to be hear to see it!!!

Keep fighting and stay encouraged! By the way, I love reading your posts Oz!

Hugs,

Linda   (sorry so long)

Ozzie,

You have watched one too many Lifetime Movies of the Week.  No one knows when another will expire excet when they are in the active dying process.

I am triple negative and have NEVER been given a 'time frame'.  

So don't feel sorry for us please.  Good Lord,

Watson

Ozzie,

I've never asked and have never been given a time frame.  This disease is so unpredictable, it would be impossible for anyone to say how long ...keep the hope alive.

Katie xx

I didn't ask but dh did after I left the onc's office for chemo.  Onc told him it could be 1 yr, 2 yrs, 5 yrs - he doesn't know nor does he guess.  All he can do is monitor me closely with tumor markers and scans, respond with tx as needed and the rest is up to God.

My mom is triple neg and she has NEVER been given a "time frame" - only God knows when and how.

Hi ozzie,

It is remarkable how your circumstances are so like my mother's (my brave mom has long history thread)! Most drs with refrain from speculating on how long one might live unless it is clear that they are at the very end of their journey.  No one (including doctors) can possibly know how you will respond to treatment. If you don't respond to one treatment another one might do the trick.  You also need to keep into account that new treatments could be availble soon.  My mother's onc has NEVER attempted to predict what course this disease will take.  Had he taken statistics into account in order to guess on her prognosis he would have been wrong, because she has defied the statistics over the course of the last 11 years.

Just continue to take it one day at a time and enjoy life!  All of us will die someday, but NONE of us know what we will die from.  You are truly an inspiration!

Take care, and hugs to you too!

Amy

Im triple neg and have never ever been told how long I have. Er pos or Er negative it's all a  frickin crap shoot.Who knows?Do we want to know?Some days yes and others no.Hugs to you...............Dawn

Dear Oz, This maybe unrelated, First a little Breif history,

1998/99 thought i had Lupas then finally DX scleroderma.

Jan 99 Put into hospital at 88lbs  (my original wt 157lbs?? give or take a few) At that time my husband I were told by my lung Dr. I was dying. and to get my affairs in order.

bedridden for about 4 years in that time jan 2002 was Dx with BC (went to disneyland) had mastectomy.8 months of chemo(oct 2002)

1 year later got a scooter chair (new independence) stop taking all pain pills.

I was told that the Drs were surprised the chemo didnt kill me. they wondered why i didnt DIE. 

oct 2006 went to floral design school, volunteered at all school and kids events, started a floral business, and now work part time at safeway floral.

jan 2008 dx with mets to spine and two little spots on the liver. spent my 20th wedding anniversery at the coast and went hiking. i was tired but i did it.

all I can say if i had listen to the Drs I would have been a goner 2x and  look at what  i would have missed. Im not niave to thing of what could be. We have definately seen alot of sadness lately. So i take everyday as it comes, hope for the best and try to think as postively as I can. sorry for the book. Hugs Heather

Wow Heather!  You are a true example of defying the statistics.  Reading  your story gives me a more hopeful outlook.  Thanks!

I am not triple neg (ER/PR+) but I did have one onc I consulted with tell me I would not live past five years...  well four years and almost four months later... I am completely asymptomatic and was NED for 3 years with femara.  I am now on Taxol and Avastin which is working and easy for me to tolerate.  I think this onc shall be proved wrong... don't you?  By the way, I am going to Vail for some spring skiing in a week and a half... not bad for someone who is supposedly kicking the bucket in 8 months!!!  While on one hand it seems as though so many of our BC sisters are losing their battles lately, on the other hand, research is moving very quickly in the BC arena and the old statistics are too outdated to listen to.  I know how hard it is to live in 3 month increments, I've been doing it so long now.  But, with each passing increment, I and others are blowing the statistics out of the water. So, Oz, forget time frames and enjoy your life NOW... (but of course, allow yourself your pity parties and meltdowns when necessary.... I sure do)

Robin

Hi,

Does anybody in this world know how much time they have??

I have a daughter who is just 2 and a half. It would be great to see her all grown up, see her graduate....married.... I live for that. That's what motivates me.

All the stats that are quoted are old when the newer stuff wasn't there. So even if they tell you the time frame, is it really true.....

I think this is the opportunity to reach for the stars. Aim high and aim big. 

Love and luck

Bubble 

Waterlily, Thanks for the comment, Its kinda funny as i Reread my comment It reminded me of the visa commercial, PRICELESS, LOL. All I can say is Our Drs. and medical staff are not our Gods,  just our angels guiding us through this medical journey. Heather

Robin and to the rest of you Gals, all of you are very strong and a true inspiration to all and especially me, (excuse my language) but lets give this disease  all we got!! And  give  it HELL!! If there are stats . Lets blow them out of the water!!! Oh yes Robin I do agree with you about the pity party, it took me watching "Tuesdays With Mory and Oprah" to figure that one out. it was about that same time when my Rheumatoligist wanted to put me on a antidepressent. I took one look at him and said "honey I really don't want one more pill and said considering what I have been going through dont I have a right to be depressed. Ill figure it out"  and I sure did. as I say this I dont want anyone to think that drugs are not useful. i just chose not to take them. and  I watched alot of cooking shows. Heather

My Onc said they don't look beyond two years. She explained that she meant for making long term plans, not necessarily for life expectancy. She said many of her patients, just like me, are 5, 10, and 15 years out. She told me that this type of cancer is just so unpredictable that it would be unfair to put a timeframe on it.

Cheers, Jodi

Good morning Jodi, I have been meaning to ask you is this your baby? What a little cutie. just got on your bio. answered my own question. wow you must have your hands full, my girls are 18 and 15, children are a true blessing. My two girls are into soccer and track, I love that they are in sports, Im one of those parents that are very involved, I love to cheer all the kids on. its one way to let your self release any frustrations out,  in a postive way without letting anyone know whats going on. its kind of fun.  Heather

watson hon if only if only...I dont watch TV at all... I feel bloody sorry for all of us wastson all of us...this BC sucks...simple really..

Jodi  your little girl is lovely and growing so fast...

Linda thanks for your comment..glad u like what I write ...tar hon...

Just to clear up a few things I dont believe in stats...

also its funny to read how ppl read these post , we all read them in different ways...

I was just asking opinions ...not stating them ...and I thought the replies to this thread were really interesting so thanks for them...

hugs to all

oz

and hang tough

Hi Oz

When I started seeing a new oncologist last year March (because my previous doc said that we all die and he doesn't know what else to do.

I have had lympectomy,mastectomy,lots of chemo and then RFA, when I saw my new doctor he gave me 22 months with or without treatment when I saw him in January he was quiet suprised that I was doing so well so they don't know my 22months was up in Feb and I feel great, going for CT scan on 14 April then they will decide what to do next I feel that when they give you that time frame you live your life according to that I have out lived there time frame but was very nervous leading up to that, now I take it one day at a time.

LOL

Minette

HI Minette, All i can say is you go girl and way to show your drs your a survivor, Keep up the good work take it one day at a time and lets see your post for many more years. Hugs Heather

Wow!  I don't know what drew me to this post.  I normally spend the majority of my time in humor and games...boy did I make a detour! lol

As another triple neg gal dx at 43 and now 2 years out, I am relieved to hear so many of you say "chuck the stats".  I try to steer clear of them.  I even cringe when I'm calling to make an appointment for one scan or another and hear the recording stating this particular hospital takes great pride in their 5 year survival stats. 

Instead I look at the senior discount rate on restraunt menus and say, "Gee, it'll be nice when I get there". 

In my heart I believe that our time is in God's hands, so I try to live my life not looking back, not predicting the future, but enjoying every moment...today.

Hugs and Blessings to you all,

Michelle

p.s.   I'm saving time frames for soccer schedules  

My Mom was given a very short time frame, but that was in Romania, where they discharged her from the hospital without any tx. The doctors told me but not her, this very short prognosis.

I am waiting for Mom to come to the US for better dx and tx. Out of the 3-6 mo prognosis, one is already gone (I was sooooo slow in figuring out the administrative/financial aspects), but I don't believe my Mom would be gone so soon.

I believe my time not only in God's hands, it is in my hands too. If I start my every day positive, try to smile, I feel better

I'm triple neg. Few weeks back when I found out that I had lung mets. my onc said I had three years. I told her right away that's it in Gods hands. Now I have a new onc. and start my treatment for mets on Monday.