Scared Out Of My Mind!! Please HELP!!!

LuvJesus4Ever

Scared Out Of My Mind!! Please HELP!!!

LuvJesus4Ever

I was diagnosed with infiltrating ductual insitu in June 2009 and I am 30 years old.  I had a lumpectomy and sentinenal node biopsy that all came back negative.  I opted not to do chemo or radiation, BAD CHOICE!  Its now come back in the same breast and at PET scan revealed that it is present in my right lung.  I am starting chemo this friday that is called taxofere.  I am so scared I can barely see straight.  What I want to know is this..... anybody had a similar case of it spreading to their lungs and after their treatment had no reoccurances or had it go into remission?  My onco tells me that I will undergo 8 to 15 treatments of the taxofere depending on how the lung responds.  Also she has talked to me about a new drug called PARP????  Anybody been on that?  Is there ANY hope at all that chemo will work for me and not have a recurrence?  I understand mestastic breast cancer has no cure but is there any hope at all that this won't happen again?  I've heard of some survivors that have had cancer go into remission but I'm confused if they had mestastic cancer??  Anybody that could help encourage me through this time would be very appreciated.  I am so scared, all i do is cry and yell.  I'm so angry, hurt and confused.  I just wish I had some hope that I will survive this and live to have children one day and not have to be on chemotherapy for the rest of my life, however long that is.  I'm so lost!  Somebody please help me.  Some people say it is a chronic illness, what does that mean?  Will I have to spend the rest of my life doing chemo treatments on and off?  I'm hoping somebody has a similar experience that could share with me what to expect.  I have such an aggressive cancer that I'm terrified that this life of cancer will never come to end except to put me in an early grave.

Monty

Hi There,

 DON'T PANIC, easier said than done I guess.  I have not had a recurrence yet, thankfully but I realize that it's a possibility.  I had treatment that included taxotere for a very aggressive breast cancer that had also metastized before diagnosis and almost 2 years out from diagnosis I am doing great.  The drugs they use these days are amazing and although they come with their own set of Side Effects they can keep cancer at bay!!!!  If this round of chemo works then you may have to take aramose inhibitors to reduce the chance of recurrence and these drugs have helped millions of US keep the disease at bay.  I was recently told by my onc that if I didn't take these drugs I have at least a 50% chance of recurrence, with them the chance is reduced considerably. 

Don't be afraid of the treatment, taxotere has it's pitfalls with side effects but they are not that bad and if you have a positive approach to your treatment and outcome all this will go much more easily.  Also after each chemo I returned to the hospital the next for a shot that helped rebuild my blood counts much faster, sorry I can't remember the name right now, but it sure helped me deal with the treatment and made my chemo time much easier to handle. If this treatment works then you don't need to worry about spending the rest of your life on chemo, chemo treatments come in cycles and you do not take it forever.

I do send you my thoughts and prayers as I know what is going through your mind.  It's a place no-one would choose to be in but in some ways it makes you view your life and those around you in a completely different and nicer way. I also wonder if this disease will bring my life to an end much sooner than I want but it's worth the fight to keep going. Have you spoken to your oncologist about having a social worker or councillor to work with you?  Here in Ontario it's standard and it really helps.  What about checking out local cancer support groups as the people who attend have all been through this experience and it really helps to talk to someone who's been through this enormously scary time?

 I will check in with you tomorrow and everyday if it helps to know someone is there for you.  Sometimes it's easier to talk to someone you don't know then bother about burdening or worrying the people around you.  This website has been a life saver for me.

Love, prayers and thoughts

Gaynor

Cathy-CA

I'm sorry you are going through this.  You might want to check out the Stage IV board since there are several women there that are doing well with lung mets.  The PARP inhibitors that your onc mentioned are currently in clinical trial for triple negatives and getting very good results.  I am, also, triple negative and my onc looked into enrolling me for a clinical trial but I didn't meet the criteria.  She's hoping that FDA approval comes in the next year or so and that they will be an option when/if I need more treatment.

Is there hope, yes!  They don't use the term remission any more, but the more accurate NED (no evidence of disease).  There are many, many people who after treatment experience periods of NED. 

Nanalinda

I am so sorry you are having to deal with this and at such a young age too!  I am triple negative also, but I don't have mets to my lungs; my mets are to my spine and to the lymph nodes in my chest, near my clavicle and neck.  They thought at one time I had two nodules in my lung, but now they are saying it is lymph nodes near my lung that are affected.  Triple negative is a very aggressive bc, and your only option is chemo for treatment.  You can reach NED, and PARP has shown great promise for TNBC.  I wish you the best of luck with your treatment, and if you want to talk; feel free to PM me.  Linda

Tonya36

I cannot give any advice on what you are going through but I do understand the fear that is going on in your mind right now.  You will be in my prayers. 

Tonya

dawn16

I too was just recently dx with stage iv.  I have two small children and couldn't deal with it at all when I found out.  I did use Ativan for a few weeks to get me over the hardest part and learn to deal with this dx.  I don't use Ativan now, but do keep them on hard for difficult days.  But for the most part I have learned to deal with it on a daily basis.  These boards helped me tremendously, there is a lot of support, If I were to give you some advice,  don't "google".  What I was reading was really throwing me for a loop.  If you have questions or concerns,  the ladies here will always have some helpful advice or the correct answer.  There's a lot of information here, and a lot of people going through it with you.  Hang on, there's a lot out there that will and who knows maybe this is the decade for a CURE.

All the Best

Dawn

TriciaK

Hi, I'm so sorry about your recurrance but please don't second guess the decisions you made as we all make them based on what is right for us at the time and even if you had done chemo, there's no guarantee you would'nt have recurred anyway:)

I can tell you that as a triple negative you benefit the most from chemo in general, and more than us triple positives so the studies say!    Up until now, there was only chemo available from triple negs but no ongoing treatment.  Thankfully the PARP trials have shown good results so this is well worth doing in the hope it helps you more.

Chronic does mean it can't be cured completly, but if you get back into remission you could go years before you need more chemo...who knows??  We can only take one day at a time and hope for the best response.

Hang in there, there's a good chance you'll do well and I can tell you that taxotere is very tolerable of all the chemo's and should'nt be too rough on you at all.  I had taxol which is a sister drug and my hair began to grow back on it (after a/c) and I did'nt need any anti nausea meds and did well.

Good luck and please keep us posted and stay positive:)

Tricia xx

thenewme

Oh ugh - so sorry you're going through this!  I see that you're triple negative, and like Tricia said, TN usually do respond well to chemo.  Have you checked out the triple negative section of this message forum?  Some aspects of TN are unique, so it's helpful to get a narrow focus, but also check out the other forums around here - lots of info about chemo, dealing with side effects, humor, etc. 

The PARP inhibitors are the "new big thing" for triple negs, so maybe one of them will be right for you - check out www.clinicaltrials.gov  and/or www.breastcancertrials.org to do a search for triple negative metastatic breast cancer trials that may work for you.  Does your oncologist's office have "patient navigators" or counselors who can help with finding appropriate resources?

Another place that may be helpful for you is the Triple Negative Foundation:  www.tnbcfoundation.org  (again specific for triple negative, and has tons of great research links and information). 

Since you're also BRCA+, have you been to www.facingourrisk.org ?  They may have good information there too, for your situation.

Hugs to you!  This just really, really stinks!

JeninMichigan

I am so sorry you are facing this battle.   You are so young!   I would be mad as hell too.   I am not triple neg but Her2+ and have mets to my liver, bones and chest nodes right from the start.  I did Taxotere as part of my chemo in 2008.   After three cycles I was cancer free so and far have stayed that way.   Taxotere is a hard drug but it very well might clean up your cancer.  The side effects are pretty managable.   I am a single mom with two young daughters.   I only missed a handful of days from work from the chemo.  Taxotere does a number on your blood counts so getting the Neulasta shot the day after chemo helps.   I had a friend come over and give it to me instead of going back to the hospital.  You need to just take this one day at a time.   Don't beat yourself up for what you did or didn't do.  It might not have changed anything.   Lots of us women with mets live good and normal lives.  It is chronic disease but so many treatment options are in the works and not all of them are hard.  Stay away from internet cancer statistics and horror stories.    The Stage IV forum is a good place to hear experiences.

 Again, I am very sorry.   Stay in touch with us and let us know how it goes.  Good luck with your treatment on Friday. 

((((hugs)))

Jennifer

debbie6122

Hi lovejesus. Im sorry that you have had to join this site, i can tell you that there are so many woman here that had recurrances and are in remission or handling it pretty well and are very young aslo, you will get better answers in the stage 1V thread, but im sure a lot more will come along here to answer you questions, i wish i could help you more, once you start treatment we can answer all your questions and help you thru it, like what to expect, what you need to do befoe.during and after your tx (treatments) i had lung cancer in 03 then got bc, i think that is differnet than lung mets?? but i tolerated the chemo later for bc which dr;s didnt think i would because of breathing problems etc... but i have done very well, but of course you situation is completly different than mine was, i wish i could help you more, i will keep you in my prayers and be thinking of you tomorrow please let us know how dr visit went and we will be able to help you get thru this. i noticed one of your post last year to some one saying we can all get thru this together, and you will, its the not knowing that can be scary, but we will be here for you-sending you (((((((((hugs)))))))))))

debbie

LuvJesus4Ever

Thanks Ladies!  I just can't believe all the literature that I've read that my doctors have given read as you only have a certain amount of time before you have to do all these treatments all over again.  I just want something to fight for.  We go through SO much just to have someone tell us that it could be in vain because this demon might come back.  I'm trying to remain positive but sometimes that word doesn't make any sense when your in the midst of this struggle.  Your words are encouraging though.  I love to hear that others have survived and are living with no other occurances.  I am looking into "The Wellness House" which is cancer support here in one of the local towns by my house.  I do agree that I need to give the internent a rest and stop looking up stuff.  It's so damn scary.  However the other day I met with the nurses that will be giving me the chemo and went over all the side effects.  To be honest, it didn't sound that bad.  The taxotere has low nausea but will make my blood counts low but that can be helped with a shot.  The part that I found to be most disheartening is losing every single hair on my body, the possiblity that I will go through menapause (my husband and I currently have no children and really wanted to have at least 2), and the long term effects of the tingling in the hands and feet that may be irreversable.  I guess I'm just hoping and praying that my cancer responds to this medicine and that I don't need to go through 15 treatments.  I will be undergoing a bilateral masectomy with reconstruction afterward but I'm trying to stay focused on what is currently going on not in the next few months.  It's hard though.  Thanks my sisters for all your help and any encouraging words that you send my way.  I really appreciate everyone!

debbie6122

I jsut wanted to mention since you brought up about losing your hair, that a friend of mine here used the cold caps and didnt lose any hair at all, it was somthing new to me and didnt know if it would really work at the time, so i didnt do it and lost my hair, but if i knew then what i know now i would of done it, it really does work, and when the time comes and if you are interested i will give you the info on the friend here to get in tough with, she didnt lose any hair on her head at all

dawn16

I was 40 when I went through my treatment.  Lost all my hair, but my skin looked fantastic.  I didn't wear a wig only a skull cap or ball hat. A little eyeliner and lipstick, everyone would tell me I looked fantastic.  The nicest time my hair ever was is when it started to grow out and my stylist did a pixie cut.  Sounds vain, but it's something positive to look at while you are going through this.  Hey now Shaving!!!!!Yipee!!!  I got a little tingling of my hands but that subsided afterwards. 

Good luck on your treatment today.  You can do it!!!

Dawn

Monty

Hi Again to everyone,

Just a quickie re tingling hands and feet, I did get this.  I had to have my chemo at 2 different hospitals and when I explained to my local chemo nurse about my hands and feet she explained that she woudl have put both my hands & feet in ice water during the administering of the drug if she had been involved at that part.  You should mention this to your chemo nurse as it does apparently help to stop these problems.  The shot I mentioned the day after chemo was the Neulasta soemone else here mentioned and that too really helped.

Although loosing your hair is scary there are advantages, like someone else mentioned no shavign legs etc.  I too opted not to wear a wig, instead I made my own caps which were comfortable and I made them in different fabrics to match outfits or weather conditions.

 You said you are having surgery.  I had a mastectomy on my right side only, the internet pictures made it look scary but the scare isn't that bad, really!!!!  I was advised to rub Vitamin E oil on it as it helps the healing process and now you can't even see it unless you look real close.  I decided not to go with reconstruction as I figured at 44 my remaining boob would not match up to a new perky one, it's an individual choice.  It doesn't seem to bother my husband either so why more surgery after the ones I've already been through.

I do feel so sorry for you as this has happened at such a young age, I was told I was young when I was diagnosed at 43 but .....  right now you are total shock and turmoil but as the months go by and the treatment proceeds you will start to see light at the end of the tunnel.  You need to build up your strength mentally and physically right, get your head and your body in the right place to fight this thing.  You can do it, just like all your sisters here!!!!  We are all going to be there to help, advise and encourage.

Love Gaynor

Anonymous

LuvJesus4Ever, I just wanted to chime and and wish you the best.  I think you'll be surprised how fast chemo goes by.  Being positive is wonderful, but don't be hard on yourself if you get a bit down. 

Like everyone has said...do not google anything about cancer.  The answers are right here...you'll read how many women are doing so well.  You're young (yes that sucks big time..not fair), but you're strong.  You can do this!

Big hugs,

Shirley

Monty

Hi LoveJesus4Ever,

 Just checking in on you to see how you are feeling?  My thoughts and everyone elses are constantly with you, you are never on your own, remember that.  As everyone else has told you please do not search the internet for answers, all the answers and help you need is right here. You can do this!!

Love and Best Wishes

Gaynor

RobinWendy

LJ4E,

Please come to the Stage IV forum and read the good, the bad and the ugly.  I HAD chemo and radiation after my initial diagnosis and STILL got DCIS on the other breast 1 1/2 years later and then it spread to my lungs within months after finally healing from my double mastectomy.

I have been living with Stage IV in my lungs for six years and three years ago, it spread to my liver. I was NED (no evidence of disease) for three years but despite slow progression, remain completely asymptomatic and feel as fit as a fiddle.

I'm not saying it's been a cakewalk, but it's doable.  I know how scared you are.  I was a basket case for almost six weeks until I put my plan in place.  You will get past this initial horror.  And it's true what was said above, at this point, I would not do too much surfing on the internet about BC because there is soooo much nonsense out there, you may stumble upon a bad site with bad info.  Once you are a bit more seasoned, you will learn which sites are valid and which are crap.

Hang in there, girl.  We are here for you.

Robin 

(edited for typos) 

Anonymous

Hey, sweetie, just wanted to check in and give you a hug.

Kodapants

I am so sorry, but I know you can get through this. Losing my hair, brows and lashes was so very hard for me. At work I have to look nice so I wore colored bandanna's with matching girls ball caps. I would coordinate them with my outfit. Wigs, I bought one, but how does it stay on bald head. I knew my luck I would bend over and it would fall off. The brows I learned to use a brow brush. And I wore fake lashes. I would get them at Walmart, trim them down and glue them on, no mascara, little eye shadow, They stayed on all day.

The other thing, I play and listen to positive life radio, everyday. This stationed has helped me more than anything. Check, PLR.org. Please take care. Hugs

Monty

Hi there,

 How are you?  Sorry I have been so busy at work I haven't had a chance to check in with you all week almost.  Hope you are hanging in there. 

I lost ALL my hair 10 days after starting chemo.  Even though they tell you it still comes as shock as it seems to happen so fast, with very little warning that it is beginning BUT I found it  didn't take too long to get used to it.  I bought a wig but I only wore it 3 times, instead I made caps//scarves/bandanas in materials to match my outfits.  They were so comfy.  When my hair first started growing back I had my husband shave it off as it came through patchy, then it was curly for a little while.  I find now it is finer than before, but that's ok as I had really thick, coarse hair before.  My hair isn't as full as it used to be but that is due to the meds I take now to help prevent recurrence. 

You can get through all this, you really can.  Try be positive when you can, if you want to cry then cry, tell those around you you're having a bad chemo day if you can't be bothered with them, they'll learn to understand.  Being diagnosed and treated for cancer is an emotional rollercoaster, and just like a fairground ride it has it's up and downs, but eventually it stops and you wonder what all the fuss and stress was about.

Sending big hugs, hope you are having a good day

Gaynor

dreamwriter

Hi - I can see your panic.  Take a deep breath.  I was on taxotere for 18 rounds and it brought my cancer to stable.... for me the best that I can hope for as I have bone mets.  For you though.... if it shrinks/kills the tumors.... you could achieve NED (no evidence of disease) which is another way of saying remission.  Taxotere can wear you down over the long run... watch your nails and toenails, keep them clean and trimmed.  Anything unusual - tell your onco right away.  I have a beautiful wig which my insurance paid $600 for.  I love it and refused to let a bald head prevent me from wearing it.  So I put a bandana under it.  No one knew and it kept it securely in place.  If you want to fool people - go to the dollar store and get the "fake hair" and sew it inside a baseball cap.... ponytail hanging out, a little curl around the ears and... people will think its your own hair.

Monty

Hi There,

 How are you doing?  Just thought I'd drop up and ask how you are feeling.  I hope all the encouragement and support you are getting is helping to lift your spirits to be able to deal with this.

Sending big hugs and hoping you are having a good day.

Gaynor

ibcmets

So sorry for you to be going through this so young.  I have metastatic inflammatory bc with bone metastasis.  There is a great site for young women under 40 even with metastatic cancer you might want to check.  Youngsurvival.org.  Being young, your body will be able to handle the treatments and we all pray for many years of NED for you.

Terri

getwell

So sorry you are going through all this scary sh#@!!!Most of us have been through a  lot and are here to help you as much as we can so you will feel that you can get accutate information  and emotional support on these boards. I find it comforting to talk to people who "get it. Please PM me if you want a private conversation.

Hugz,

Pat

MsBliss

I am triple negative, dx in March 09.  Just wanted to tell you I know two women who are ten years out with stage 4, and both of them, in their early 40's are having their first babies! 

From what you posted, it looks like you had DCIS (insitu) or am I wrong?  What was your original tumor?  IDC or DCIS and what size, any medullary or favorable characteristics?  Have you had your vitamin D levels checked?

Jennyi1

Hang in there. Do RESEARCH. EDUCATE yourself. There are A LOT of different options. Stay strong. My prayers are with you.

Jenny. 

Micheleann

stage IV board? where do i find that?

Micheleann

what do u mean by triple neg im new to the site

VBK1944

Hi, I am sorry about your dx so young. Talk to your onc about harvesting some of your eggs before the chemo. Hopefully somebody will sit down with you before your treatment and discuss all your options re future fertility, incl savingsyour eggs...Good luck to you