Stage iv

dawn · 12-31-2009, 06:29 AM

I've been her2nu+ from the beginning in 2006. But now have just be dx with a small lesion on my breast bone in Dec 2009. So stage iv. Im scared to death. Ive been switched to Aromasin and 1x month on Aredia. My onc couldn't tell me how big the lesion was because there was no measurement from the bone scan. Very small and probably 1-2 cm in his best guess. I have my good days dealing with it but then today being New Years Eve, the start of a new year, I don't know how to deal with it. My little boy is on the couch wanting me to cuddle and telling me my hugs are the best thing in the whole world. My fear, is how could I ever look at him and tell him he may never get my hugs again. My little girl wants to do nothing be a big girlie like mommy and will I miss that too. Every ache and pain is driving me into a frenzy. I have an ache in my back this morning, is it more mets? is it my mind? Or maybe I just need to have a good stretch.

Im hoping and praying for a fantastic new year for me and everyone else fighting this disease and if not a cure and way to deal with this as a chronic disease.

Any suggestions.
Dawn

Ellie F · 12-31-2009, 06:45 AM

Hi Dawn
I so know how you feel.Dealing with this terrible uncertainty is so hard and frightening.New year seems to bring up feelings and anxiety about the future often tinged with bad news from around the world about suffering.
I also hope that 2010 will bring a cure for us all. There seems to be so many advances that we must be near to a breakthrough in managing this disease. I just want you to know that you are not alone and that there are many of us that are walking this rocky road with you
Best wishes from England
Ellie

jml · 12-31-2009, 10:19 AM

Hi Dawn~
I'm so sorry that you have to deal with this.
News of a recurrence, whether your first or 50th, is always earth shattering, disappointing and scary.
You've come to the right place, as many of your Her2 family will offer comfort, wisdom & a soft place to fall.
That 1-2cm spot on your sternum doesnt have a chance, not when there's a whole glorious person & spirit in YOU!

I have been Stage IV since my primary dx - liver mets from the very start. I, along with many long term Stage IV'ers, have had a bumpy, winding journey with this disease. So much chemo, so many surgeries, much of our bodies sacrificed for the greater good of survival. But surviving nontheless.
Surviving WITH this disease.
It's been the 71/2 yrs since my dx & I'veendured 9 recurrences (currently chasing disease in lymph nodes -supraclav, sternum, abdomen), and each time the news rattles me to the bone. It takes me a little bit of time, but eventually, I pick myself up, dust myself off, and with the encouragement & care of my amazing team, family & friends, I climb back in the ring & start swinging. We are successfully treating this disease like a chronic one.
And you will too.You can do it.
Don't be scared of it. It should be scared of YOU!

Keep the Faith~
and CHEERS to a new decade!

Jessica

Jackie07 · 12-31-2009, 11:26 AM

Dawn,

I've been diagnosed since 2003, found the recurrence in 2007, and am waiting to have a hysterectomy/oophorectomy done soon. It is scary to find anything anywhere after we've already had a cancer diagnosis.

If I remembered correctly, I've seen (read about) bone mets being treated successfully. I think the best bet is to check into some of the clinical trials. Seems someone on the board has participated in the vaccine trial in Seattle and is now cancer free. Please look into clinical trials and perhaps check with Dr. Slamon, the fahter of Herceptin. I've read a couple of our members consulting with him about treatment.

There are many 'scary' statements about recurrence and being stage IV. But cancer is now very much like a chronical illness. We are all born to die ("We are all terminal." - our late paster's words when he was diagnosed with skin cancer.) And we all feel like there's something unfinished here. I appreciated your being honest about your feelings and help bring up a discussion on the subject.

There's a short story entitled 'love' written by Leo Tolstoy that I never tired of reading. An angel was condemned to live in the 'world' after he had refused to take the life of a woman giving birth to a child. The angel was worried about how the woman's new born would be taken care of. The angel went back to Heaven after he had spent 3 years living with a carpenter name Simon. The angel learned that men do not 'live' on their own. Our fate is not to be revealed. But 'love' will take care of whatever that's broken or missing.

I 'hope' you have the 'faith' to know that 'love never fails'...

Sheila · 12-31-2009, 01:13 PM

Dawn
No one wants to get the word of a recurrence, and nothing softens the blow but time....from another Stage IV woman since 2003, and in constant treatment ever since, I know your fears and the uncertainty. Take each day and be thankful....there is always some new treatment...and so many new and wondrous ways to control and manage this beast.....we are here for you, remain positive, 2010 may find the perfect treatment for you and many of us. Stage IV used to be a death sentence so to speak, but now a days, many of us are living and surviving and leading amazing lives as stage IV patients...you will be one of us!!!!

Lien · 12-31-2009, 03:28 PM

Hi Dawn,

Yep, it sucks! Especially when you have kids. You want to see them grow up and reach milestones. But who says you can't or won't? I know several women who never expected to live more than 2 years, but 10, 11, 12 years later they are still alive and doing well. Who is to say that won't be you?

Please try to take things one day at the time. The lesion is small, it may well respond to treatment for years and years. Bone mets have a relatively good prognosis.

So hug your kids, feel the joy of touching their lives, because every moment you are with them, you are making memories.

I don't mean to say you can't be sad or afraid or depressed. Ofcourse you will have those feelings. Having cancer sucks. There's no nice way to say it. But there will also be good times. I promise.

And we will be here to walk this road with you, one step at the time. You are not alone. And we are allways here. 24/7.

May there be lots of happiness for you in 2010, lots of laughter, and may you continue making wonderful memories!

Hugs

Jacqueline

Faith in Him · 01-01-2010, 01:44 PM

Dawn,

I can relate to your feelings. I have young children too. I had a recurrence as IBC very shortly after my original dx. It was earth shattering for me. It is under control now but I am in no way out of the woods.

I found that cancer was consuming me especially thoughts of my children losing me. I had to find a way to deal with it. I don't aways deal well but I try not to let cancer rob me of the time I have with my kids now. Sometimes it takes tremendous effort to push these thoughts out of my mind so I can enjoy my kids. But with time I have learned to do it. You will too. It takes time.

I find that if I am left alone with my thoughts and nothing to do it is worse. I try to keep myself very distracted. It works for me.

Your spread is very small and very manageable. People can live with bone mets for years and years.

I will be praying for you to have longer moments of peace.

Tonya

MJo · 01-01-2010, 03:40 PM

May you live to be driven crazy by your grandchildren.

I believe that the next decade will bring either a cure or giant advances that will make Stage IV a manageable disease.

If you need anti-anxiety or anti-depression meds, I hope you will take them. Early in my diagnosis, I asked a survivor "How do I get through this." She said one word: Drugs. Now that's not right for everyone, but for those of us who need them, let's not try to tough it out.

Kim in DC · 01-01-2010, 05:53 PM

Dawn,
Take a deep breath and develop a plan of action. Mine included clinical trials and cyberknife. I have a stubborn sternum met also. Even though its stage IV,
its still local/regional recurrence.

I was lucky to get into the TDM1 trial. My scans show I'm stable but I believe its scar tissue. Like you I experienced pain in my back. It would hurt real bad a week after treatment. Then it stopped hurting. Thats why I think its necrosis.

I also noticed that my sternum met was outside my radiation field. If I was not in a clinical trial, I would also get cyberknife or novellus (sp). The University of Rochester is conducting a study on the use of novellus for mets. They will zap up to 5 at a time and you can come back as often as you want. Hopefully TDM1 will be approved soon and I can zap that sucker on top of chemo.

In addition, this might also be a time to talk to a number 2 (or 3 onc). I've seen a lot of oncs become less than supportive after stage IV.

I credit this site for being alive today!!!!!! I would have never heard of TDM1 if it wasn't for this site. My onc never heard of it either. Now she has 3 patients in my arm. Stay connected. There is a lot of support here!

Kim

Sherryg683 · 01-01-2010, 07:52 PM

Hey Dawn, your post bring back the exact feeling I had 4 years ago when I was told I had lung mets. My little girl was 7 and my son in high school. My little girl use to sing "You are my Sunshine"to me. Whenever she would reach the part of "please don't take my mommy (she always subsituted mommy) away". I would just about lose it. I would look at her playing and cry. I remember totally losing it in the mall one day when I saw the young teenage girls shopping with their mothers for prom dresses...I ran out with tears down my face. It is hard for us mothers of young children. I have been NED for almost 4 years now, but the fear is still there. I begged God to let me get my daughter to age 18 and that I still beg of him. All I can tell you is that it's not a death sentence. I have learned to try and live in the "now". When those bad thoughts come in, I try to tell myself it does no good to think this way, just ruins the day. Just take deep breaths, cry when you need to and realize that you are not alone here. This board is great for support and for information, which is always your best weapon in this fight. I pray that 2010 is a good year for you and for us all..sherry

dawn · 01-02-2010, 05:36 AM

Thank you so much Sherry and Kim, Your replys came just when I needed them. My son just got out of bed and tomorrow is his 9th birthday. Hugs and Kisses and cuddle time are our thing. So this morning he gets up and says"mommy tomorrow Im 9 and Im going to be such a big boy" Making the not so smart comment I say "I guess you're getting too big for our Hugs and Kisses". You know what he says " Mommy, even if we both were dead I'd still be giving you hugs and kisses" MELTDOWN. My husband, God love him, steps right in so I could get to the bathroom and get a grip without Kyle knowing whats happening. Wow! It's times like this, I so hate this, I so wonder about life and why and if. Feeling better now with reading your posts and Ativan, which pulls me through the hard times.

Wishing everyone a healthy, happy and NED New Year

Dawn