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Her2Neu positive? Please raise your hand!

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Ok, after reading Chris' and others' posts, I am going to ask for happy stories about those of us who are Her2Neu positive.. seems we are in a rather... elite (?) group. If anyone is/knows of someone who is positive on Her2Neu and neg. on Estrogen/ Progesterone, please do tell me stories!
You see, it makes me nervous not hearing much about those in this odd group... *smiles*
Thank you so much in advance, you are all priceless!
~Marty

inkblot
Posts: 705
Joined: Jul 2001

Hi Marty:

Consider my hand raised! I was Her2neu positive and hormone negative at diagnosis.

I've done very well to date and after completing chemo (4 rounds A/C)in July '01 and the radiation in Oct. '01, I'm now full of energy and feeling great once again. I also feel blessed as do most of us here.

All my indicators demonstrated that my cancer was a very aggressive little beast but I remained positive and have taken excellent care of myself and feel confident that I have benefited from my physical routines (Yoga, walking and recently some light weight lifting)in addition to the few supplements I use daily. A lifelong vegetarian, I continue that same dietary practice.

I understand that in many other countries, Her2neu is not even tested for, as they aren't sure what it means, exactly. I didn't personally place any particular significance on that aspect of my cancer. Supposedly, as some doctors will state, one's risk of recurrence is slightly higher when Her2neu positive. But here, again, as with so many aspects of cancer, they're using statistics, which don't really translate to my body or yours!

Perhaps one reason we don't hear more details re Her2neu is because there aren't many to disclose? It's sort of like the tumor marker tests: by and large, unless they go up incredibly fast and very high, drs. don't honestly know how to utilise that test well yet. Most drs. just start some other tests in a search to find anything which may be hiding and often they turn up nothing. Which can mean that the tumor markers are not hugely reliable.

I'd try to relax and not worry about it. Just another "something" they test for with only a small chance of really being able to tell us exactly what it means for us.

Hope that helps some at least. Take care and be kind to yourself!

Love, light and laughter,
Inkblot

nocarb1
Posts: 99
Joined: Nov 2001

Hi Marty,
I was dxed in sept of 2001 with stage 2a, invasive ductal. I am 37 and had grade 3 2.2 cm tumor, er/pr pos and her-2 3+. I have had 6 rounds of AC and 40 rads and now I am alost done with 6 rounds of taxol. My onco seems to think I do not need herceptin. I am still wavering about that one. I was node neg. Could you tell me what you stage was. My onco and I have talked about this in length and he keeps reassuring me that they did not test for her-2 until the last few years so there are many women out there that have survived for a very long time with it and not even knew it. I was so focused on it when I found out so it freaked me out, but as time passes I am handling it better. I do know 2 ppl that have it and now have survived 2 and 3 years without a reoccurance. Email me anytime at nocarb1@yahoo.com
Carlye

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Hello Carlyle!
Thanks for responding... mine was a stage 2 but we've not taken lymph nodes yet.. that comes this next Monday after a month delay thanks very much to our incompetent insurance co... I am shooting for a 2a, of course! *grin*
Yes, my sister pointed out that Her2 is a new catch phrase, not to let it freak me out. *smiles*
I'll be in touch.. things are getting very hectic just now.. 4 days to do 4yrs worth of stuff! The house is falling apart. I'm working at making a comfortable little nest for myself to recover in, a hideaway with a/c and lots of good books and such!
Have a great day!
Marty
zenhound@cac.net

nancys
Posts: 336
Joined: Aug 2000

Marty, My Onco described the her-2 as not all bad. He thinks that the chemo works better because of the her-2 gene. Lets hope he is right and just quit thinking about it.love to you, Nancy

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

*laughing* Thank you Nancy! That is perfect and to the point! Consider it done!

Marty

lyn210
Posts: 10
Joined: Apr 2002

Hi Marty,
I am Her2Neu positive and Estrogen/Progesterone Neg. I had a rare form of breast cancer called Pagets Disease which manifested itself as a skin rash on the nipple. I had a mastectomy in February and I am almost finished with 4 rounds of chemo. From what I am understanding from my oncologist, this is just another cell characteristic that they look at. This particular indicator has to do with motility, which is the cancer's likelihood to travel in the body. The chemo is supposed to knock that out! That is the hope! Think positive and have faith in your recovery! Good luck to us!
Lyn

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Thanks Lyn! Yes, good luck to us! With our attitudes, we'll fly through this. *smiles*

Marty

banker
Posts: 321
Joined: May 2002

Hi there,my hand is raised. Been looking for someone like you. Yes we are an "elite" group. Docs can't tell us to much exept stats. I was DX in June 1998. Adenocarcinoma, mastectomy, 6 mo chemo CAF, Tram Flap reconstruction.Was doing fine. This year Feb.2002, routine mammogram , new cancer, other breast.Lumpectomy, 34 rads and now chemo 6 mo. After this thurs. I am half way through the chemo. Both cancers node neg. ER neg. Her 2 positive. With these stats, all I come up with is the cancer is more agressive, why, docs cannot say. In spite of it all, I am doing fine,have a couple of bad days here and there, but overall OK. I feel good, exept when I get chemo, but it will be over soon. I try to live my life as normal as possible.Went back to work part time for now, enjoy antiques and fleamarkets. For a "young" old lady that's not bad. I have more energy then some of the young ones at work.....ha ha. So that's about it , take care, if you want to e-mail and chat , let me know.... Take care, glad you brought up this subject. Love>>>> Emmi

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Wheee! Thank You Emmi! You are nearly done with your chemo.. congratulations!
One doesn't hear of the her2 showing up in the other breast as often as other areas in the body.. odd. Thank you for the positive energies you are throwing off! I'll catch up when things slow down after next week! Surgery Monday for mastectomy and tram flap. Now come on, Emmi... how old *is* old?!?!?
Have fun!!!
Marty

jmears
Posts: 270
Joined: Jul 2001

I'm Her2Neu 3+ but I am estrogen + as well ... however my neighbor had a very aggressive tumor at the age of 40 ... it popped up practically over nite ... She was estrogen neg. but Her2Neu was not being tested at the time ... assuming the agressive nature of the beast she and I assumed she would test Her2Neu +. She is now 48 ... and doing exceptionally well. She had a tram flap reconstruction and 4 rounds of AC and has not had any issues since!!! I had my tumor remove Nov. of 2000. I had 4 AC and 4 Taxotere 7 weeks radiation and my Onc Doc thinks I'm going to be fine. You'll be fine! Good luck .. keep on the summy side! Jamie

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Thank you Jamie! It is soo good to hear these stories. Better than any fairytale! *grin* Congratulations on your success! WE *will* be fine!
Marty

ldrunnrmom
Posts: 15
Joined: Jun 2002

HI all!

Dont know that I have a "story" yet about the HER2Neu- but I will say I asked this morning at my treatment- about how Herceptrin is prescribed -or not. Anyway what they said was that it is prescribed more when there is metastsis involved? Does that sound right? My sisters here that are on H- why did they suggest you take it? Inquiring minds want to know- is all :)

Third chemo today- ONE MORE TO GO. I am psyched.

My red blood count after taking the new drug (not Procrit) jumped from 10 to 12! That is terrific and validates how I had felt less tired the past couple of days.

Have a great day!

Chris

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