With much gratitude and appreciation...and not a single joke...an update from Flori~

[SoCalGal]

I have been meeting with second and third and fourth opinion doctors over the past few weeks and trying to figure out a treatment plan.

Along the way I realized that since joining this board in April, I have spent about 5-7 hours per week online, on this site, reading;
your posts,
your posted abstracts,
your opinions,
your thoughts and ideas,
your posted studies,
some surveys,
and of course some of that time is spent writing my own stuff.

Basically, I have spent nearly 200 hours here, learning more about breast cancer and treatment than ever before. Considering that I am an 11 year survivor, it is significant to me how much more I have learned from this board than from all the books on my shelf!

AND
In meeting with various doctors, I noticed that I was able to communicate on a better and more efficient level than in the past. I feel that my meetings were more "professional" and that I was treated with more respect than in the past. I was able to better fight Blue Cross (who turned down ALL treatment for me), and prevail this week.

In thinking about these things, I want to say a heartfelt thank you to everyone who contributes here. Especially to Joe and Christine for providing such a wonderful place to connect and learn.

Thursday I will be starting back on Herceptin & Tykerb. I am going with another oncologist - leaving "my guy" of 11 years :( and going with a very aggressive woman oncologist. She's already scheduled me for a Brain MRI, followed by a bone scan when the isotope shortage is over, and thanks to info here, I will have my existing tumor (that is sitting on a shelf doing nothing) re-evaluated for more current information with an IHC from T-Gen. I have an updated supplement plan that includes some mushroom extracts, and some other goodies to bump up my immune system. After all, SOMETHING in my body must be working to allow me to still be here so I am going to do all I can do to support my 50 year old self:) Targeted therapy for a cancer with many targets. And despite the FDA I am going to figure out how to add in AVASTIN and still send my kids to college and put food on everyone's table. Step by step. With Her2support.org as my strongest weapon!
With gratitude and appreciation, ~Flori

[caya]

Flori - You go girl!! Your new onc. sounds like she is really on top of your situation.

Wishing you continued success with your treatments.

all the best
caya

[Mary Jo]

Thanks Flori for the update. What a wonderful post that was. I feel just like you. I'd be lost without this site and wouldn't know nearly what I know (which isn't muchhttp://www.her2support.org/vbulletin/images/icons/icon7.gif) without the knowledge from so many at her2support. And, also like you, thank Joe and Christine from the bottom of my heart for making this site available to each of us. God Bless them both.

And now you dear Flori, I pray that the new onc. and new treatment plan will be good to you. I pray God's Peace, His protection to your body from the effects of the drugs but for the drugs to do what they are suppose to do.

You are an 11 year survivor. Simply - AWESOME!

Love & Peace to you Flori,

Mary Jo

[PinkGirl]

Hi Flori

Thank you to YOU. You are an 11 year survivor with a ton of knowledge about this stupid disease. You put a new "face" on this disease for me - a pretty one with vitality and a good looking boyfriend.

There is a reason you are still here - it is YOU and the choices you have made. You will find a way to add in the Avastin - the FDA is no match for you.

Please, no more posts without any jokes.....:)

[suzan w]

Hi Flori, I have to say that your post was such a powerful tribute to all of us here fighting this fight. I agree with you that the information that I have gleaned from this site and all the amazing women and men, that post here is far more valuable than almost anything else that I have learned about breast cancer. I never go to an oncology appointment without a list of questions and information, much of which I have gathered here. I feel like I am taking an active role in my survival and this Support Group is more important than words can convey. I only wish that I was a gazillion-aire so that I could contribute all my money to Joe and Christine for keeping this going! And a HEARTFELT THANKS to all of you, all of us, for every day...a miracle!!!

[dhealey]

Flori, You are an inspiration to us all 11 year survivor and still fighting! Never give up that fight, as that is why you are still here. (I detect some stuborness in there, which is a good thing) Praying you have the best of luck with this new onc. Sounds like she knows what she is doing. My onc is a woman and I find her more atuned to my feelings and how I feel my treatment should be handled. May god wrap his healing arms around you and give you an early christmas present (NED). God Bless!

[Soccermom]

Flori,
I miss the jokes..
You knock the da*ned cancer on its bottom any way you can...your Doc sounds like a someone willing to fight with and for you and THAT sounds like a powerful combo to me!

Marcia

[lilyecuadorian]

I love how you express your self ....love it w/numbers so clear for me ...you go girl and you have some compromise with us (this site) because you are roll model ..so you need to keep fighting with smart decisions ...with everything ....

[chrisy]

Flori, jokes or not, your post still made me smile! You are such a vibrant and special lady and I always look forward to reading ANYTHING you post. You are awesome and have lifted me up so many times with your attitude, love, and yes, your jokes. I hope getting that lazy old tumor off the shelf and into the lab will help reveal some better solutions for you.

Much love
Chris

[hutchibk]

Flori - you rock. You rock. And you rock. May I also add that you rock. You are my idol (and there are many more on this site whom I feel that way about...But today is Flori day). Need I say more?

[Joe]

Wow...What an endorsement.

Today, members of our group will be arriving in San Antonio to attend the world's formost breast cancer symposium.

The information that we bring back will be added to our growing pool of knowledge to benefit all of those who use these boards.

Flori..I have taken the liberty to print your post and will be showing it to several oncologists and other health care professionals at the meeting.

YOU are the embodiment of Christine's vision when she first decided to create this website. Her mission was to educate a person with bc to the extent that they were no longer a patient but a full partner in their treatment team.

Warmest Regards
Joe

[Joy]

WOW! You said so much in that post and said it so well. Thank you for acknowledging what needed to be acknowledged AND thank you for inspiring us. I'm excited that you have some plans in place and am sending you all the kick a#@ vibes that I can.

Love,
Joy

[hermiracles]

Joe said Christine's "mission was to educate a person with bc to the extent that they were no longer a patient but a full partner in their treatment team"

Well that sure has come true in you Flori! You are amazing.....inspirational!http://her2support.org/vbulletin/images/icons/icon10.gif

I'm so glad I found this place too!!! All the best with your new plan of action Flori!http://her2support.org/vbulletin/images/icons/icon14.gif

Blessings
Hermiracles

[IRENE FROM TAMPA]

and I am sure we all echo your words. Thank you for expressing them so well.

You and your onc HAVE A PLAN and it sounds like a good one. You are doing what needs to be done by taking "control" of your health care. I also have Blue Cross Ins. (Blue Options plan) and "so far" they have not denied any of the chemo's for me. Did yours explain why?? I am not quite sure what my onc. has told them but they approved Avastin for me immediately and I was really thinking they would not. GOOD LUCK to
you with your insurance co. Isn't it a pity that we have to struggle so much with these companies to get something that we need so desparetly.

JOE - BRING US ALL BACK SOME GOOD NEWS ON YOUR RETURN.
I WISH I COULD HAVE JOINED THOSE OF YOU THAT ARE GOING
TO SAN ANTONIO THIS YEAR.

Flori - keep us posted on your scans and have a WONDERFUL HOLIDAY.

YOU ROCK MY FRIEND......

[MJo]

An aggressive oncologist and a knowledgable warrior patient are a wonderful combination. May your next 11 years be great ones, and may your life just keep getting better after that.

[tousled1]

Flori,

What an inspiration you are! What you say is so true and said in a way that we all relate to. I'm glad you found on oncologist that you feel good about -- must have been a very difficult decision to switch after being with the same oncologist for 11 years. I admire you and pray that you have another 11 years to celebrate!

[Emelie]

I too, have a new oncologist, and with the knowledge I have attained from the website and my own snooping on the internet, we have intgelligent, and informed discussions about "My" cancer. She listen's to me and vice versa. We are in this fight together!
Stay the course Flori, and know you are never alone.
Happy Holidays,
Emelie

[Lolly]

Wow, Flori, your post brought tears to my eyes. You've put into words what I feel each time I visit this group, and your spirit exemplafies what this group is all about.
Together, we are all that much stronger!

<3 Lolly

[Believe51]

Your post teared me up and without tearing YOU up I must say again to you that "You are one of my greatest heros, and although that list is very long, each hero in my life all provide me with different things that add up to making me complete!! I love you, I admire your honesty with your feelings and I take pride knowing that YOU are there for Ed and myself. To be honest, my husband and I are honored to have such people in our lives and on this journey. Flori you are a lifeforce in itself; your spirit conquers and regains, you fall back and you get right up with fortitude, determination and strength. You are every woman Sweetheart!! (I love that poem)".

Dear Flori you are a Warrior, a Conqueror, a great inspiration. So go grab your weapons and assume the position. This is war and that cancer has no idea who they are fighting against. Show 'em how it is done Girl!! Prayers and much respect>>Believe51

[Believe51]

UNITED WE STAND>DIVIDED WE FALL!!>>Believe51

[Leslie's sister]

Flori:

You said it all. This site has given me more information that I could have possibly ever gathered on my own. I can not even begin the imagine what life would be like without it. Sending lots of prayers out that things go well with you!

Lisa

[tricia keegan]

Flori I wish you the very best with this, I don't have mets yet and hopefully never will as I was one of the first here to avail of herceptin three weeks after it was approved for early stage bc.
I'm the type that likes knowledge, even if the worst never happens but like to be prepared in case it ever does and am the only one I know (from Ireland )or have seen from this country here. I've learned so much from you and all the member's here, my onc just comments " oh, you've done your homework"! not sure if she's vexed or pleased about that but I wanted to be pro active with my healthcare and with this disease and have learned so much from you, and this site and basically evryone here!
I know I still have a lot to learn, but what I've learned so far is things seem to be different in Ireland..people either seem to bury their heads in the sand or are just not computer savvy! i want to thank you, and Joe,Christine , and evryone else through this site that is helping to change all this here as i recommend this site to everyone I meet who is her2+ including newcomer's on Komen.
My best to you all and thank you again

[Patb]

Flori and all
This is a wonderful site with wonderful women and men and together
we will suceed in this, with all the knowledge we have been provided.
When I found this site, I found gold at the end of the rainbow, I had
no knowlege of all the types of breast cancer much less Her2. What
a wealth of information I found and thanks to you all that came before
me to provide me with this. Knowledge is power. Thanks Flori and all.
patb

[Vanessa]

So glad you have a new oncologist with a new treatment plan. You are a very insprational lady. Thank you for the update and you will continue to be in my prayers. Hugs and blessings.

[Kim in CA]

You have said it all, and very eloquently I might add. Thank you for your post and of course, all my prayers that your treatment plan will yield great results.

We are certainly united in this fight and so very blessed that Christine and Joe have brought us all together.

Love Kim

[nancy dip]

I owe a great debt of thanks to Joe and Cristine for this site and for the knowledge that I have taken from the members of it. As far as I am aware, there is no site in the UK dedicated to HER2 and sometimes I think that I know as much(maybe more?) about it than my onc.The only advice that I have ever been given regarding diet, exercise or supplements is to"go and get on with my life"!! I have changed many things thanks to advice from this site.I do not post much but read almost every day.My thanks and best wishes to you all.
Nancy

[Andrea Barnett Budin]

Oh sweet Flori! You are a walking advertisement for this fabulous HER2 Support Group. Reminding us all how blessed we are to have found it. And one another!!Giving us access to more information about bc and HER2 than we ever wanted to know (before) -- and need to know (now). We each understand one anothers angst and fortitude and are keenly aware that we need to be informed, proactive and empowered! We must personally participate in our own wellness. We must accumulate a team of the best advisers, armed w/knowledge and our ability to hear our Inner Voice.

You, my 11 yr Survivor/Warrior Woman Friend and Sister, exemplify everything a Winner must possess. Attitude, medical awareness across the board (from power ports to clinical trials and cutting edge protocols to supplements and any and all integrative therapies). You epitomize a Winner's stubborn resolve, determination and clear, focused and passionate intention! Plus, you've got one great sense of humor to bring joy and laughter to your life, while entertaining all of us! That's a gift! And each of these attributes is essential in order to prevail.

I was dx in '95, met in '98, and am sticking w/my life-saving Herceptin -- in my 10 yr now. Vit H (thanks to Slamon an Pegram and the rest of their team who developed it) is helping me be a Survivor too -- for 12 yrs. I'm just ahead of you, Flori, my Sister! ANNOUNCEMENT: Had my every 6 mnth CT scans this AM -- and am here to report -- chest/abd/pelv are STABLE, STABLE, STABLE. Still NEMD. Thank God. Forgive me for sharing my good news. I expect your good news to soon be posted and I will cheer for you!

So Flori you just keep on being YOU, with your feisty Spirit and kick a** tenacity. You knew it was time to move to a highly aggressive onc for your aggressive, insistent bc, as difficult as that decision had to be. Well, it's met it's match -- w/the deadly duo (your new onc and YOU). There is no other possible outcome for you now but success!! May it come swiftly and w/the least amnt of side effects.

You know I love you.

What the heck is an IHC from T-Gen? I'm just asking... Educate me, please.

MAY BLESSINGS SURROUND YOU NOW AND ALWAYS, as you so artistically and poetically post from La La Land, Flori, Flori, morning glory! AMEN, indeed.
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

[Joe]

Flori I printed out your post, made copies and distributed them here in San Antonio. I explained to them that it exemplified what the HER2 Support Group was all about. In the last 6 years we have had over 1 million visitors, 100,000 posts and replies and our pages have been viewed over 5 million times.

The knowledge here is the combined efforts of all those who are on this site and for those who passed through.

December is an emotional month as it was here at San Antonio where we said our final farewell to Sandy and we lost our "love and light" later that month.

Joe

[hutchibk]

Flori's post could have been presented here at the SABCS as a poster session, or even a non-scientific general session - as much as the very proud Joe has shared it here the last few days! LOL. It is so powerful. It speaks directly to a very strong undercurrent (and maybe not so "under") that I have heard in every presentation I have sat in on, which is the tremendously strong trend and necessity in cancer treatment for personalized, individualized treatment... directed by more focused testing availability, more identified genetic markers and pathways, necessary multi-targeted pharma approaches depending on the individual's dx, and powerful patient involvement/voice/knowledge in the treatment protocol decision. It really sounds as if the oncology community is willing to embrace the research and knowledge that the patient brings to the table and that the research community is incredibly driven by the power of the patient advocacy community. This has been a powerful week for me, optimistic, reaffirming, and mind-boggling. Can I just say, WE ROCK here at Her2support!

[Andrea Barnett Budin]

THANK YOU, BRENDA. YOU ARE OUR EYES AND EARS. You are every woman w/bc and especially all of us HER2 Sisters.

Your every word is anxiously received and felt deeply. As you are feeling reaffirmed, so am I, so are we all I would imagine.

Mind boggling must be an understatement. You are involved in such a remarkable experience, head spinning though it has to be. Thank you for so readily sharing...

Living energy to you and all,
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

[Bill]

I'm damn near speechless after reading these wonderful posts. Flori, you're awesome and keep on rolling! Andi, I love your posts and your attitude. Joe and Christine, thanks for all you do. i wish I could have been here sooner, but Nikki was always here posting on different sites, but this was her favorite. This reminds me of a time several months ago when Nikki and I met with her onc. after we got the news about her brain mets and Nikki asked her "What do you recomend?" The doc said, knowing how Nikki was hands on in every aspect of her treatment, "Well, if it was up to me..., but I got a feeling it's not up to me is it?" We all laughed, knowing Nikki's reputation. She always had a list of questions and comments in her notebook, and like Joe said, the treatment system needs to be more of a partnership. Nikki's onc. said she liked us because we came informed and prepared and other patients just showed up and said,"well, do whatever you think is best". The doctors do their best, most of them, but as the warriors that you are, you must prepare for battle as best you can. I just wish I could be there to hug you all as you go to face it. Love, Bill

[Soccermom]

Each one of us has a "vested interest" in the survival of another. I think that is what makes this website so unique.
Thank you Joe and Christine for your vision. Thank you too, to all those who are blazing the path for the "others".
Marcia

[Ceesun]

You go Flori, BRAVO to you-yes, you are an inspiration. KEEP THE INFO COMING! Ceesun