Hi New members!!

michele u · 10-25-2005, 05:50 AM

There has been alot of new people posting on here lately. That's awesome!! Let's start a thread here with all the new gals posting their stories!! I'm Micheleu. I was dx in 2003. Stage 3 with 34 pos nodes. er/pr neg Her2 3+ FISH 10. I took AC then 12 Taxol. Then i took Herceptin for a year. Now i'm taking the vaccine trial in Seattle. I was 39 at dx. Now i'm 41!!!! I have 3 children 1 husband 3 dogs. I live in Nebraska. I emailed Dr. Salazar from Seattle today with a question about maybe taking a second year of Herceptin. I will let everyone know when she emails me back

Joe · 10-25-2005, 07:53 AM

Michelle,

I am planning a "Newcomers Club" message board for newly diagnosed bc patients.

My only request is that only "newcomers" start new threads. The more experienced among us can answer posts, but not start new ones.

Looking for feedback. How does everyone feel about this.

Joe

Esther · 10-25-2005, 08:12 AM

That sounds like a good idea Joe. Newbies tend to have different questions and concerns to deal with.

kristen · 10-25-2005, 08:18 AM

I like it Joe. What I don't understand is why no one uses the chat room. Is there anyway you can flag here posting that you want someone to come to the chat room to talk? Thanks. Great idea.

RhondaH · 10-25-2005, 08:17 AM

I think that's a GREAT idea, but how would you define newcomers?

Rhonda Hoffman

PS, also a crazy question, but I found some flaxseed recipes I would like to share ( I know there was a discussion on this before) and I got to thinking if there could be (if this is even possible or if anyone would be interested) a recipe section for us to share "alternative" medicine recipes (ie, flax, fish, vegetables or de"sserts" for those days we just need to indulge...just a thought.

mamacze · 10-26-2005, 11:24 AM

Joe and Michele,
This is a great idea; it is such a nice way to welcome all the new folks who are interested and have questions. And Joe, I think your Newcomers Board is a great idea...go for it! You do such a nice job for us.
Love Kim from CT

10-26-2005, 12:52 PM

Hello All!

I have been visiting this site for several months since I first suspected that something wasn't quite "right". Unfortunately, I was right. *sigh, smiles*

First dx (at age 37) in May '02, Her2Neu 3+, ER/PR -. 2 tumours, 2.5 & 1.5cm.s, 3 pos. nodes, largest 1cm. Mast. & TramFlap followed by 6 hits FEC over 4 months.
Took loads of vitamins, herbs & homeopathy with Onc's approval.

Baby intermission (read incredible surprise!) after chemo-induced menopause. (Great, now I get to experience all those flashes and such... twice!!) Gave birth to fabulous baby girl on Oct. 27th, '04. Symptoms gaining as baby grew but I assumed they were related to the pregancy & breastfeeding hormones. *shakes head* Silly, silly me....

Aug. '05- Mets dx'd to both lungs (innumerable.. not a word to be found comforting in such diagnoses, is it? *grin* I shouldn't have complained about my "grossly unremarkable" left breast back in '02, should I? *wink*), multiple lymph nodes involved in thorax, 1 large "bar" shaped tumour on pulmonary vena cava & several lymph nodes involved in pelvis. Potential lumbar vertebra as well.
Turned out my former Onc. never tested to see if I showed tumour markers and so my blood tests were always clear and he pronounced me cured. *shrugs*
New Onc. tested and now we know that I need scans to see what is going on...
Next Tues. will be my half way point on weekly Taxol & Herceptin with monthly Zometa chasers. This new Onc. said no to any supplements other than my B-100 and any juicing that I want to do. Also doing meditation, breathing (good stuff! *wink, grin*) and some visualization- though I cannot "find" my cancer any longer. Guess I'll just have to work on visualizing my immune system getting stronger. *smiles*.

Am very excited about CAT & PET scans this coming Monday- I'll glow for Halloween! Making a "Radioactive Girl" costume for the occasion. *grin*
Feeling great, pain is gone, cough down to a few times a day, walking briskly at least every other day for 30-40min. Life is good!

Thank you for welcoming the "newbies".... I have found loads of comfort in reading this board. Am avoiding the negatives in life and seeking out the positives.

Sorry to be so long winded... guess it's good that I don't post much. *smiles*

Be well all and have fun!!
Marty Z in Michigan.

RhondaH · 10-26-2005, 01:00 PM

So sorry to hear of your dx, STAY POSITIVE and this is a great group to keep you there. Where in Michigan are you? I'm in Grand Rapids though I grew up in Coloma (by Benton Harbor/St. Joe). Take care and I'm sure you'll look adorable on Halloween.

Rhonda Hoffman

Marty Z · 10-26-2005, 01:38 PM

Oh, thank you Rhonda... don't be sorry, just send good energies/prayers and such if you like.

Everything is greatly appreciated!

We are in the Hartland/Howell area. We bought a run down farmette after my first round of chemo... now I am raising chooks and having a great time!

Staying positive and knowing all will be well is my main occupation now... I seek out positive stories and take frequent "news fasts".

Thanks again and have a lovely eve'!
Marty

Maryanne · 10-25-2005, 07:19 PM

Thats is so sweet of you , Micheleu,
I am relatively new to this site and am still finding my way around. My name is Maryanne, was diagnosed last December 04 with bc. ER/PR negative, Her2 +3, node negative. Had lumpectomy in January. Did 4 dose dense A/C followed by 4 dose dense Taxol with Herceptin, then 30 rads. Am in a trial at Sloane's here in N.Y. and will continue with Herceptin for a total of one year. ( I also asked if I could stay on longer since I am er/pr neg and was told herceptin is not a preventative drug????? why not????) I am divorced with 2 children, a daughter at UCLA and a son hoping to follow her next September.....if he ever gets his applications finished! New to breast cancer but not to cancer, my son had Hodgkins last year, doing great....finished his chemo and radiation just in time for my being diagnosed.
Thank you all for making this a great site!
p.s. forgot to mention our dear cocker spaniel who is no longer here....also was diagnosed last year with a melanoma. 2004 just wasnt my year!

jsattaw · 10-25-2005, 09:53 PM

Hi - new to Her2 as well. First diagnosed in '98 at 37 years old-- ER/PR+ but they weren't testing for Her2. Was node negative and did a lumpectomy followed by radiation. Diagnosed with a recurrence in May '05 -- no nodes (Yea!) but am Her2Neu+. I had a mastectomy with reconstruction in July, 4 treatments of Taxol and had my first Herceptin treatment 2 weeks ago. I am also scheduled for a hysterectomy on Nov. 3rd. I'm married with a son who will be 5 on Nov. 2nd. Great site!

Jill

Val Pfeiffer · 10-26-2005, 05:01 PM

hi maryanne--
I am taking Herceptin as a preventative drug--just started a couple weeks ago. It wasn't suggested by my oncologist--I made that call myself. There isn't anything else out there for ER/PR- Her2 patients, so what other option did I have??!?! As you can probably tell from the article I wrote (see BC article thread above), I have immersed myself in the science of all this and tend to call my own shots. I was stage 3 because of my tumor size and 5/8+ nodes, so it was pretty important to do SOMETHING after my regular treatments.

There is still a lot I don't know, and one of these days I will post some questions i have about treatment options...just haven't had time :-)

Val

10-25-2005, 09:58 PM

My name is, Karen and I live in California. I was diagnosed, January, 05 with a 1.3cm, er/pr+, node negative, grade3, Her2+++ tumor. I completed, dose dense, June 29th and rads in September. I started Herceptin in July and just had my 6th treatment on Monday. I will be on Herceptin for one year (treated every three weeks). I had asked for Herceptin back in May when I started Taxol, but my onc told me I didn't need it. I went and got 2nd and 3rd opinions and when I went back to talk to my onc about it, he had, had a change of heart.

Thanks for starting this thread, Michele!

Karen W.

jojo · 10-26-2005, 12:59 AM

Pardon me for going off-track -- I am not a newbie here, but I have noticed that there doesn't seem to be many Californians on the boards. I could name maybe 5 ladies, oh, and myself.

Karen W, would you mind telling which part of California you are from? I am located in SF Bay Area.

Welcome to all the newbies! :-) I hope that this site is a big help to you guys.

Alice · 10-26-2005, 08:44 AM

Hi,

Im a new member. Joined this month. I have been visiting here for a few months and I love this site and the layout. I always find encouragement and a wealth of information here.I have been on other sites and some of them tend to get a bit catty and negative. Not what I need right now!
To JOJO I am in southern california.Temecula area.

10-26-2005, 09:43 AM

Hi everyone, don't know if I'm still "new", but I am in So. California so thought I would post here. I was dx 10/04, ER/PR-, Her2+++(15.2 by FISH), Grade 3, 4/20 positive nodes (largest 4cm), Stage 3a. I had mastectomy, 4 A/C, 4 Taxotere, 1 year of Herceptin which will end in December. 33 rads. I was 38 at dx, I have 4 kids who are now 12, 10, 5 and 2. 2 Cats and a whole tub of stick bugs! I am in Ventura County.
Jen

10-26-2005, 10:11 AM

Hi Jojo,

I am from the Walnut Creek area. What part of the S.F. Bay area are you from?
We have a great organization over here (maybe you already know of it), called the Wellness Community. They offer cancer patients, support groups, meditation, visualization, etc. and it is all free. Last night an oncologist from UCSF came to update us on all the new treatments for BC. Dinner was also included, which is something I can never resist!

Take Care,

Karen

Berta · 10-26-2005, 06:05 PM

I was diagnosed in Nov 05. ER/PR negative Her+++. Node negative. I had a lumpectomy in November, began chemo (cytoxan and epirudicin) in December, finished in March. Then I had 33 rads + 5 boosts. "Completed" treatment in late April. Then I was called back in July to begin Herceptin. So far no problems with the Herceptin. I am 53 years old, live in Indiana, married, have 3 children( all grown but youngest 2 still at home) and two miniature dachsunds. I'm relatively new to this board although, I've been reading it for sometime before I actually joined. I've found this to be extremely helpful especially since I live in a rural area with no cancer support groups. BERTA

dee · 10-26-2005, 09:14 PM

I do not consider myself "new" to this site (although, yes, I AM her2NEU positive...). Some of us visit regularly - where ELSE can we get the quality info we CRAVE about our health situations - but I seldom post; for at least two reasons that I am prepared to share: I am shy, AND I work a lot; writing for a living leaves me less inclined to want to spend my personal time writing some more.

That said, this site is my super!!!! lifeline. Thanks, Joe, you know who I am. Thanks, everyone else, please keep writing! I need you.

dee

PatS · 10-27-2005, 12:01 PM

Hi - I don't know that I'm all that new, I've been coming here for a couple of years but mostly lurk. I was diag. on 07/2002 w/stage 3 bc (er/pr+, HER+++). I had neoadjuvant chemo (4A/C followed by 4 taxotere, each three weeks apart), Single mastectomy with expander/implant reconstruction, and 28 rads. I'm currently on Arimidex and NED so far. I'm currently considering starting herceptin.

Pat