(re)-introducing myself.... I think I'm still in shock really...

[hermiracles]

Hello friends... I did something of an intro of myself in the welcome wagon and received some lovely replies.Thank You!

I feel like I'm still in shock really - not expecting this Her2 stuff to happen and still trying to get my head around what it means???

When I had my follow-up mammogram after the birth of my bubs I really was expecting it to come back normal! I mean wasn't I pronounced 98% cured after my lumpectomy + rads in 2003? And all the latest research I'd read at the time said there was not a problem with getting pregnant after breast cancer treatment (although I'd had a fight with my original surgeon about that - but maybe more on that another time!)

So how come every mammogram, u/s, biopsy I had after the birth of the bubs the diagnosis kept getting worse and worse...? suspicious for 'extensive' DCIS, then invasive component, large tumour, repeatedly high grade... and then finally after the bilateral mastectomy - HER2+++ Some how I just knew it was going to say that! How come I knew that? I dunno..??


The only good news was that the nodes were clear! - oh and the other breast was also clear of any malignancy. And I guess I should be grateful for that - and I am - its just that I felt sad that - that right breast - had signs of lactation in the tissue :-(( where I had valiantly tried to feed 2 bubbas with 1 boob! And I guess we didn't do too bad - made it to 3 months! but by that time I had discovered the bc in the other breast and my breastfeeding days were numbered! :-(( Hope I'm not being too melodramatic but I guess that is one of the sadnesses for me.

But if I get stuck in that place I can find it hard to shift gear into being grateful for my life, that it seems to have been caught in the early stages and the treatment available today is a lot better than it was even a couple of years ago. I'm not sure what the situation is in other places but in Australia - Herceptin was just placed on the Pharmaceutical Benefits list in October last year so it is basically free - amazing eh?

Its funny though the questions that play on my mind.....
- of course number 1 is am I gonna be around to see my bubbas grow up!??
- when people say HER2 is a more aggressive form of breast cancer - what does that actually mean?? What - if some other form of breast cancer would likely spread over 1 year it spreads over a few months?? I guess Ill get to ask my oncologist these questions but I haven't really got to know him yet.
- I have had so much stress in my life over the last few years - (well most of my life really! lol! :-)) - the last few years have been incredible... many deaths, including the loss of my mum to Korsakoff's.... I could go on but I wont! Is there any evidence that HER2+ is particularly related to stress?
- And one last thing.. if my DCIS was so 'high-grade' back in 2003 - 'comedo' - which is also supposed to be aggressive (??) - why didn't they test it then for HER2 (Onc says they dont test 'supposedly' non-invasive for HER2 - well why not??)

Oh-oh I betta stop eh? or my head is really gonna be spinning! Meanwhile in a few hours I have to turn up at the hospital to have my portacath inserted - actually I feel a bit scared about that - not sure why - maybe it will be a sign of all these 'heavy' drugs they are going to pump into my system.... oh dear... then its time to pray and trust and talk with my Higher Power..... sit with my bubs and have a good laugh! they've really discovered the power of the belly chuckle!! very entertaining! It certainly reminds me to be grateful for this moment.

Betta stop eh? Thanks for 'listening' and sharing the journey.
Blessings all
Hermiracles

[Mary Anne in TX]

Her2 is more agressive, which means that it just takes more agressive treatment like herceptin! I spent a year focused on the diagnosis! Don't you even consider that!!!
Focus on the glory of those new drugs that treat the rascal that is Her2. I, like some others, plan to make herceptin like my daily vitamins, part of my routine (every 3 weeks, that is). You have been blessed to have 2 incredible "reasons" to fight and to stay focused on life and all it's blessings! Take whatever time you need to ask tons of questions of the "Mighty Warriors" on this site and get your mind set for the good fight! Then let those adorable dolls make you smile and laugh! WOW! Are they just the cutest in the world??? I have been raising my granddaughter (8) for the last 7 months and it has been my purpose and my reason to fight, to stay happy, and to live in the moment! God blessed us both with something very precious. She reminds me every day to live today!
Keep asking and keep believing in all you many tomorrows! Much love,
ma

[BonnieR]

Hello again! I only have a minute but want to suggest that as you think of questions you write them down in some sort of journal you can keep with you. So you can ask them of the various doctors you will encounter and write their replies. It is so hard to keep it all straight otherwise. And it helps alot to have someone with you to hear the replies. Sometimes I was so full of fear that I could not hear straignt!!!
I recently had a port inserted. I had a few days of swelling and discomfort afterwards but that was unusual I think. It seems most everyone on this board have had very good resuts and are happy to have had the port installed. I wish I had done it at the beginning of treatment the way you are. Makes the process easier.
Keep the faith.

[kristen]

I think you are so brave and courageous. You have such beautiful 'bubs". Your asking the right questions and keep asking them until you get an answer that you understand.
Her2, is more aggressive, but with Herceptin, well lets' just say it's been a miracle for us. I don't know about stress and Her2 correlation or even if there is one, but as the others have pointed out, try and breathe and just take one day at a time. I know easier said then done. But I think that is one of the gifts this illness gives us, time to ponder and rejoice in the little things that we so often take for granted.
You might want to post, because I am not up on the latest news on the BRICG or HERA trial, but I don't remember FEC combo being one that was used? It might very well be just as good as AC-TH or TC-H. It might be worth asking about. That is what came to my mind when I read your post. My sincere best to you.

[caya]

Hello Hermiracles,

I live in Canada, and I had the FEC - Taxotere chemo regime. It is a very commonly used chemo combo used here and in other commonwealth countries. I had 3 rounds of FEC, then 3 of Taxotere. I had a one month break, and then started Herceptin. I am on the 3 week infusion cycle of Herceptin - had # 8 of 17 today.
My onc. told me that Herceptin is rewriting the books on Her2 neu - so don't look at any articles etc. that are more than 1 year or 2 years old - basically ancient history. Turning a "poorer prognosis" into a much better one. He told me my chemo regime was the most potent out there for me - and I welcomed it.
We also have universal health care in Canada, and Herceptin was actually approved for early stagers here about a year before it was in the U.S. Don't worry about your port - it will be your best friend. If you like, you can put some EMLA cream (lidocaine in the US), a numbing agent, on your skin where your port is, before each infusion. I do this every time, then there is no pain with the IV needle.
Sorry you have to go through this, especially with your adorable little ones, but you will get through it.

all the best
caya

[Andrea Barnett Budin]

HERMIRACLES--

Your babes are too precious! Enjoy them! You were given them to help you through this trying time. Reasons to stay connected to Life! The best of reasons. Love and laughter are enormously healing. And may being needed so not be too burdensome as you navigate through chemo, but rather serve as a boost to your SPIRIT.

I believe stress is the root of all illness. It strikes at our genetically weakest points. Her2 is aggressive, and therefore must be treated w/the most aggressive weapons in medicine's arsenal. You can read my signature and learn my tale of woe. But, I swear, it impelled me to grow and evolve in ways I otherwise would not have, and in so many ways cancer has blessed my life! I say that in all seriousness, though surely I would not wish cancer on any one, ever.

You have been led to the perfect site for support, information, shared experiences with people just like you, who've felt all the emotions you're feeling and can best validate what you're going through and help to guide you through it. SURVIVING ONE DAY AT A TIME is the wisest course. If you look too far down the line, you will begin to feel overwhelmed. I have been at the business of surviving since 1995, and I have learned that the ONE DAY AT A TIME rule is the most joyful route to take. Happiness is in the moment, in The Now. And you have 2 fabulous reminders of the bliss that can be found in the moment. What are their names?? A boy and a girl. How perfect!! You and your husband must be in heaven over your good fortune. And in shock over the latest turn of events. Crappy comes to mind! Sorry also occurs. So very sorry. But so delighted to welcome you to our family! With open arms. And my open heart... Sending you loving, healing energy... Please keep on posting and asking questions. We are all here to help one another. We each have messages for one another. The old guard and the newbies too! We ALL have messages to offer, to buoy us up and keep us afloat. You with HERMIRACLES from Downunder, can I convince you to let us call you by name? As you can see I am all out there. Andrea Barnett Budin. My friends call me Andi. As an afterthought, I could have signed on as LIVING IN THE LAND OF YES, where all things are possible. May you become a miracle too, You-with-HERMIRACLES...

LOVE,
Andi

[PinkGirl]

Hi Herm
I was just like you at the beginning. I was shocked, I was mad, I was over-
whelmed with everything, had tons of questions, tons of fears......this is
exactly how it was for most of us here. But then you settle in to the battle
plan. I decided to not dwell on the what if's of the past. There was nothing
I could do about me not finding the lump sooner, or going for a mammogram a year earlier. That was done and over with. I started concentrating on the
"now" and I did it with lots of lists. I wrote out Doctor's names, addresses and phone numbers, fax numbers, receptionist's names. I took notes at all of
my appointments, and I brought in note pads of questions for my docs.
I got information sheets on all the chemo drugs I would be getting and read
about all the possible side effects. I didn't find this Her2 support site until
after I was finished all my treatments....wish I had known about it in 2005.
I received FAC followed by Taxol and Herceptin.

You can do this. Ask for help when you need it. People want to help, they
just don't always know what you need. Take care of yourself, get lots of
rest. You will get through this................Good luck, and keep asking questions of this board - there are a lot of very wise women and men who
are here to help.

[Christine MH-UK]

and was diagnosed in Oct 2003 about six months after having a baby, so I know your concerns.

I had the FEC before surgery and was really scared because even though FEC has worked really well for many women, I still had 8/19 nodes involved afterwards. Then I had taxotere, which was highly unusual back then, but my oncologist had been to a conference and was convinced it would help. I had to wait until after herceptin had been proven to be effective to get it, so there was quite a delay after I had finished my chemo, so my treatment wasn't quite a good as yours will be. I know that many women now in the UK seem to be getting their taxotere and their herceptin at the same time. I found FEC tough, taxotere easy at first and harder later and herceptin to be pretty easy. If you have any problems the people on this board provide a wealth of knowledge.

I am four years on from diagnosis and my cancer has shown no sign of return. Best wishes for your during your treatment.