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Old 07-28-2006, 10:18 AM   #1
mts
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Johanna! Love that name!

It has been a while since you posted. I admire your bravery. I don't think I could pose naked even with 2 good boobs!

I hope you get through your treatments soon!

Maria (MTS)
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Old 07-28-2006, 11:04 AM   #2
StephN
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Talking "Private Club mentality"???

This part of Aquinas' post was disturbing to me.

A private club is the LAST thing Christine had in mind when she developed the idea of this web site.

Some of us are more active in responding to posts than others, but we do not consider ourselves clubbish, cliqueish or anything of the kind. We enjoy reaching out and encouraging newcomers is part of that - including to Aquinas.

The fact that many of us are even still alive to turn on our computers is remarkable. And for me I want to interact with others like me, as well as give hope to some poor soul who has just been blindsided with bad news that they can and will get through it.

Johanna, I think Sandy was concerned about you and was just reaching out in her own way. Glad you are so full of life and committment to educating other women in your country. We are here to support you in this effort.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-28-2006, 04:28 PM   #3
Berta
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Sandy: I agree with you. Don't let the response bother you. Someone probably just having a bad day. We all know that anger can be a reaction to this disease and sometimes it come out toward others. I would hate it if you or Ronda left.

BERTA
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Old 07-28-2006, 07:33 PM   #4
Jean
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Very sad

Dear Sandy and Rhonda,
I was very upset to read the reply that Sandy received. I have always enjoyed her warm and informative posts which are full of care and support.

Rhonda if we loose you from this site I would be VERY UPSET so please do not think that way.....your are a VERY important person to me.

I will say that in the time I have been on this site I have gained so much courage - knowledge - and support. I had a very unusual situation with my dx. and needed all the information I could gather in order to help myself.

I must say that the wonderful ladies on this site were extremely valuable to me and also (and this is the best part) helped me to help others in my OWN way.

But I must admist that lately there has been some comments that have been a bit biting and hurtful and I can't help but notice that it has a pattern and I truly hope that the persons who are applying this tone would re-consider and remember that we have some very strong women here who are FIGHTING
a very strong disease - so back off and try to rememeber we are not here to judge but to share and to assist is to assit with unconditional support - we could do without any additional pain and personal comments which are attacking another memember who by the way is fighting the battle of their life. I do not only mean the lady who responded to Sandy.
I have noticed after a scolding and belittling reply that one of our wonderful members has backed off and I do not see her on the site anymore....wonder why? I did not reply and had wanted to at the time and know I feel guilty that I did not do so - because that talented lady is not active on the site. I felt her pain in her reply to the sender. Everyone has something wonderful to contribute - but noone is top dog on this site and I have noticed in particular one person who does lash out when she is challlenged......it does not belong here.

Sandy I do agree with you and I do not think for a moment that you were rude....to the contrary - you have always displayed a loving nature on the site. (You too Rhonda)

Joe had requested back when that we must register and his reasons are clear
enough said.....Rhonda and Sandy I love you and appreciate you ever so much!

Fondly,
Jean

Last edited by Jean; 07-29-2006 at 02:08 PM..
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Old 07-28-2006, 10:22 PM   #5
jag
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hello..

sandy you said or did nothing to deserve the kind of reply you got from aquinus..all you ladies are inspirations...i learn so much about her2 from all of you...thank you all and God Bless you all...
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Old 07-29-2006, 01:40 PM   #6
sarah
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I also like names. I can understand some people's hesitation at first to use their name or even a fake name but this site seems to be a site where everyone trusts each other and bares their souls, their worries, their sorrow and seeks important, real advice. We are all very vulnerable and sick or we wouldn't be talking on this site. The posts I mainly see are very supportive and informative and I hope they will stay that way because it would be tragic if we lose good people because of unpleasantness. Speaking for myself, I've been helped a lot on this site and I'm sure I've sometimes asked stupid, obvious questions but I have always received serious and kind replies and I appreciate that greatly. I am upset to read that there have been more than a few instances of nasty comments on the site because I've seen other sites (luckily not health oriented) descend into chaos because of tiffs between members. This site is far too important. And yes, I've noticed some names are no longer posting and I've wondered why. When we disagree, let's remember to put on the kid gloves!
Let's all just concentrate on getting and staying healthy!
sarah
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Old 07-29-2006, 03:04 PM   #7
madubois63
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The one bad thing about the internet is that true sentiment does not come through. You can't see the smile or frown behind the words. It is easy to read the words and become defensive even when no ill will was meant. I JUST got a ton of e-mail about an astrinomical event that is happening on August 27. I kept getting the same e-mail over and over, and I was getting really tired of it for 2 reasons...first, repeat e-mails and second - it already happened 3 years ago. I very nicely (or so I thought) replied to all and asked that I be removed from the bulk mailing list. Several people including the original sender jumped ugly on me, and it really surprised me. I have to agree with Sandy - a name is nice...Maryann
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Old 07-29-2006, 08:26 PM   #8
mamacze
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Lightbulb

Sandy, you had a legitimate question that needed asking; as Joe so kindly pointed out.
And Aquinis, I have read your posts and see that you are a sensitive caring sister; perhaps you misread Sandy's intent ...
we all have some good to contribute; lets all keep focused on the good.
Love Kim from CT
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Old 07-30-2006, 10:13 AM   #9
sarah
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Kim I agree totally with you. S
Sometimes an email seems harsher than intended or was written in haste.
stay strong and well, fighting cancer is the only fight we should be involved with.
sarah
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