Starting at the Beginning

chicagoetc · 09-23-2007, 05:30 PM

I posted this on the newcomers board. Joe suggested I put it here as well:

I am 50, was diagnosed 7/13/07, had surgery (right side modified radical with lymph node dissection) on 8/15/07, had a portacath inserted 9/7/07, started Chemo on 9/14/07 (AC -> T + Herceptin with radiation somewhere after the T). I am ER/PR-, HER2+, Grade 3, Stage IIIa, 3.2mm tumor with 4/19 lymph nodes involved. From what I can tell my medical providers know what they are doing (Evanston Northwestern Healthcare Kellogg Cancer Center).

It took me quite a while to start to understand the diagnosis (even to name it) and the recommended treatment. I still have hundreds of questions though am plenty challenged just getting from one step to the next. This is not fun (you already know that or you wouldn't be reading this). This is not how I planned to spend my holiday vacation. On the other hand I am thankful to have insurance, a job that is willing to work with me even if I am going half speed, a husband who is willing to go above and beyond the call of duty.

I don't know what else to say. [Maybe you know something I need to hear.]

Melanie

Mary Jo · 09-23-2007, 06:03 PM

Welcome Melanie.............I'm happy you found us and can say with all sincerity that this site and it's members are a very caring, knowledgeable and compassionate group.

As you can see from my signature at the bottom, I was diagnosed with her2 positive breast cancer in 2005. I had 1 node of involvement and a large tumor, 4 cm. I, too, did 4 dose dense A/C and 4 dose dense Taxol along with herceptin given every 3 weeks. Also, I had 28 radiation treatments after chemo was finished.

Here I am..........................2 years and 2 months out and I am NED (no evidence of disease). Herceptin is a wonderful drug that we all hope and pray gives us many many many many years with no recurrence or should I say NO RECURRENCE EVER. We have good odds (that sounds so cold but wasn't sure how else to say it) and those odds are WAYYYYYYYYYYYYYY better than they were for us her2 people a few years ago.

I'm glad you can find blessings already in your journey. Continue to look for them as they are there. We learn much on this journey and the journey can be a wonderful blessing if we let it be.

Hugs and God's Peace I send you.

Mary Jo

Sheila · 09-23-2007, 06:06 PM

Melanie
Even though we would rather no one else needed our "club", we welcome you. Feel free to ask anything...there always seems to be someone here that has been there, done that. The beginning is a scary time with many questions, feelings of hopelessness and fear...but reading your post, it appears you are in good hands with your treatments, and are reaching out for information...and that is good. Most of us astonish our oncologists because of the information that is passed along on this board....we know what to ask for, or sometimes demand. We know when to worry, or when to realize that we worry too much. I go to Rush in Chicago for treatments...and everytime something changes with my treatments, this is the first place I come to get answers...from chemo to hair loss, sexuality, types of reconstruction, or just happy birthdays, this is the place to ask and get your answers. I am hoping that the AC chemo is going good so far. Again, sorry you have to join us, but welcome to the most knowledgeable Her2 group on the earth.Feel free to chime in on any discussion.

Becky · 09-23-2007, 06:11 PM

Dear Melanie

Welcome to the club you never wanted to join but we are here for you 24/7 for answers to your questions or emotional support. I too had AC follow by Taxol all dense dose. Rads and herceptin too. I am 3 years out and doing well.

It is a scary time but you are probably starting to do better since starting chemo which kicks cancer butt. It is always better to be doing something that helps your situation. If you need to know anything, just ask - someone here has seen and and together, we've seen it all.

Hug to you

chicagoetc · 09-23-2007, 06:25 PM

Thanks. I know people with cancer (or who had it) but none who were/are HER2 positive. From reading I understand that Herceptin is a huge move forward for HER2 diagnosed.

I am about to fall over from exhaustion but look forward to getting to know people here.

caya · 09-23-2007, 06:37 PM

Hi Melanie,

Welcome to the board. I wish you did not have to join our "club", but I can tell you the women (and men) here are the most supportive informed group you will ever know.

One bit of advice I can give you as you weed your way through alot of internet information - Herceptin is being proven as a wonder drug for newly diagnosed Her 2 patients. Be careful what articles you read - old statistics are REALLY old when it comes to Her 2 - just a few years ago we were told we had a "poorer prognosis". Herceptin has changed that - new trial results are showing much higher DFS (disease free survival) rates for longer periods of time, and even then the stats are so fresh - we are rewriting them every day, week, month and year that goes by.

You will get through chemo - drink alot of water, rest, and you will be fine. Take all the meds they give you. This is not the time to be a hero. Your friends will ask what they can do - Let them help you - grocery shopping, make a meal, whatever.

We are here for you.

all the best
caya

Ceesun · 09-23-2007, 06:38 PM

Welcome to You! This board is so informative, it will be a great source of help, guidance, and yes, comfort,too. I agree with Becky, this is a club that no woman or man wants to join, but here we all are and life goes on. In friendship, Ceesun aka cathy

chrisy · 09-23-2007, 08:15 PM

Hi Melanie,
Welcome to the right place! It sounds like you are in very good hands and getting exactly the treatment you need. It can seem very overwhelming, as I'm sure you have noticed! It is like having another full time job. My advice is to make sure you are gentle with yourself, give yourself permission to accept help from those who care about you. It's hard, we are so used to "doing" everything for everyone else. For me, rotisserie chicken 3x a week was much more palatable once I realized that it wasn't about people bringing me FOOD, it was about bringing me LOVE.

You're right, HER2 pos is not the most common flavor of breast cancer - only about 25-30% are. As you work to learn more about this, be aware that "old news" will talk about it as a poor prognosis cancer. This was before the advent of targeted therapies such as Herceptin...and now it is considered a favorable thing! Ignore any statistics that are more than a few years old.

We're all here to help you as you need, you can feel comfortable asking ANYTHING.

BTW, I'm originally from Chicago area, too, and frequently am back to visit my sister and niece in Glenview. Small world.

Take care
Chris

Patricia · 09-23-2007, 08:44 PM

Hi Melanie,

Welcome! We are all here to support each other, just let us know how we can help you. I know for me that I have learned more on this site than anywhere else and I have often been ahead of my docs and bringing them info from here. Luckily I have a great team who appreciates the extra set of eyes doing research and they are always willing to listen.

When you move on to the Taxol, you might want to research taking Glutamine daily to prevent neuropathy. I took it religiously and did not have any long term problems.

Hugs,
Patricia

PinkGirl · 09-24-2007, 06:20 AM

Hi Melanie
I've read all the posts and see that you have been warmly welcomed and given a lot of very good advice. Throughout my cancer adventure, I have never met another person who is Her2+. I found that very isolating and was very happy and grateful to find this Board. Sometimes I post, sometimes I am a lurker, but it is extremely informative. It's a double whammy - it helps to learn from others, and it feels good to help someone else. I totally agree with Caya (it must be the Canadian in us)....This is not a time to be a hero, or to prove anything to anyone. If friends ask how they can help, tell them. Lots of people want to help but don't know what you need. Good luck, you will get through this..

Believe51 · 09-24-2007, 06:42 AM

Hello Melanie, welcome to the best place you can be when we have to go on this journey. I am hoping that you feel free to ask whatever you must and can be comfortable doing so. We are rather a funny, loving, supportive family and the support is astonomical. I wish you luck on this journey and am so happy that you will be sharing that with us. Hopefully we can provide you with all that you seek and if not that we may guide you to find it. You have just taken one of the most important steps in the journey of breast cancer.

Sending Warm Welcoming Prayers and Telling You That You Should Always BELIEVE!! Love and Positive Healing Energy>>Believe51

tousled1 · 09-24-2007, 07:31 AM

Welcome but sorry you had to find us here. You will find the women here extremely knowledgeable and supportive. Any question or concern you have just post and I'm sure you'll get respones. Sounds like you're doing well with your treatment. Also, this is the one place where everyone is HER2+.

Emelie · 09-24-2007, 08:01 AM

As the other ladies have said, Welcome but sorry you have to be here too. This is an awsome place to come when no place else feels right. You can see my history at the bottom of the post. Since I have not updated it, I will tell you that I stopped Herceptin at the 8 month mark due to chronic joint pain and fatigue. I had Herceptin before surgery and it is a miracle drug. We felt the tumor shrinking, and sure enough, the pathology report after the surgery reported 99.9% regression of the cancer.
My only piece of advice would be to use the Search tab when you want to find something specifc. Just type in the first word or so and you are bound to find useful information on it. These generous ladies are so knowledgeable and sharing. Knowledge for me is power, and this site has helped me feel like a human who can and did beat this disease with their help.
Good luck with your treaments, and remember to be very, very kind to yourself.
Emelie

Hazel Joyce · 09-24-2007, 11:50 AM

Welcome to the board, Melanie! Our tumors are similar. I started treatment 9 months ago.

I hope you check in frequently!

DonnaD · 09-24-2007, 12:00 PM

Hi Melanie,
First, welcome to the board. I am sorry we had to meet this way. As you can see from my info, I started treatment about the same time you did but a year ago. I have heard good things about where you are getting treatment. I am at Rush like Sheila.

NW is having a Town Hall meeting this Sunday, Promises and Myths of Breast Cancer. You can find out more about it on line on their website. I am planning to go. Would you like to meet me there? My husband is also going. I don't know much about what they will cover but the Dr who is the moderator was the Dr. I used for a second opinion.

You have come to the right place. This board has been so helpful to me. The knowledge, concern and support is fantastic!

Where are you in the Chicago land area. I am always up for lunch or dinner! We are in SD now but will be home for the meeting on Sunday.

I wish you the best. Remember no question is to small or to silly on this site. Ask away!

Donna

chicagoetc · 09-24-2007, 05:11 PM

Everyone is being so nice. It really feels good. I guess this is a good place to be. It's reassuring that almost everyone here is going through a similar treatment to what's slightly behind and much in front of me. There are even folk who live in my part of the country.

A question: I had surgery (modified radical with lymph node dissection - two layers of three removed) and since then my arm is only slowing coming back. Because I am working fulltime, it's hard to find time to do stretching but also when I do, it's often painful. Lately there's some relief in going back to keeping my arm elevated. It works almost better than trying light massage where it hurts. Does anyone know why this is or what I ought to be doing differently?

[Probably I should look somewhere else for a post that already covers this but I think I have to print this thread out to find the instructions of how to do so...!]

Andrea Barnett Budin · 09-24-2007, 05:26 PM

Just wanted to say HI and WELCOME, MELANIE! My *story* is in my signature. I was initially dx 7/14/95 and here I am... Been on Herceptin since '98 (when I recurred/metastasized). You sound pretty savvy for a newbie and this is a great place to have stumbled upon. The women are wise and wonderful. They are Warriors and know more than many docs, I swear. When we put our heads together, we can usually figure something out that'll help. And docs don't know canser

(I'm spelling it that way cause I'm *dissing* the crummy disease) from the inside out. We've all experienced canser in a very real way, and faced our potential mortality, he uncertainty and fears and come out feeling more in love with love and those closest to us than ever before. We can truly appreciate the beauty of a new day in a most unique way. Priorities quickly rearrange themselves and we don't mess with the small stuff any more. In the scheme of things, we have a whole new and wondrous perspective. Good things can come from rotten breaks. So, welcome Melanie. I wish, like all of us, that you didn't have to meet us this way. You're in a club none of us wanted to join in the first place. But here we are, together, standing by one another's side. We've got your back, Sister.

Wishing you an easy time. It does happen. And if you have any questions or observations you want to share, by all means -- feel free, any time! We can take the hard balls and the dark thoughts, and we can put a positive spin on almost anything. The thing is to be proactive, totally involved in your own well being and care. YOU must help heal yourself, along w/the docs and nurses and meds and tx. That's how it works best. You're off to a great start, Melanie. I see you're counting your blessings. That's wonderful. I can see already, you're quite special.

Sending loving, healing energy over to Chicago...
Andi