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Old 08-06-2006, 10:14 AM   #1
Val Pfeiffer
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Location: Wisconsin
Posts: 159
What a great group!

This week I received a private message from Rhonda (Sassy)... she had noticed that I hadn't posted in awhile and she wanted to know if I was OK. That is one of the truly amazing things about this group. In some ways I don't feel worthy--I am not here often enough to notice when people haven't posted, and even if I was, I don't know if I would have the organizational thinking skills to notice someone's absence. Rhonda--thank you for checking in with me. Part of my problem has been lack of time due to learning a new industry since I changed jobs on March 31. My other problem was that I have struggled the last couple times I visited. Lyn's death, Linda's death, and the huge struggles that everyone is facing were tough on me, as I am sure they were on all of us.

But Rhonda's message was a reminder about the outstanding nature of this board and the people who contribute to it. It's not a board where people spend too much time on chit-chat or useless info (although we get to know each other quite well anyway); it's one where we exchange information about trials, treatments, symptoms, etc. -- VERY useful stuff. My treatment course was radically different because of this site (and my oncologist's willingness to allow me to recommend my own treatments).

I know that I need to be on this board and stop being a baby (although I know where to go when I need a good cry :-). I have ideas and experiences that I should be contributing for the benefit of others, just as I have received information that helped me. And I still need to stay on top of everything for my own sake. With a stage 3b case, I was so close to stage 4, that my journey probably isn't finished.

So I am still here--sometimes lurking, sometimes posting when I have time. Thank you Rhonda, and thank you to the rest of you too!

Gotta go...more posting to do!!!
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.

Last edited by Val Pfeiffer; 08-06-2006 at 06:09 PM..
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Old 08-06-2006, 04:46 PM   #2
sassy
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Good to see you back Val! Glad that your absence is for all the "good" reasons.
________
Colorado dispensary

Last edited by sassy; 08-22-2011 at 08:51 AM..
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Old 08-06-2006, 07:15 PM   #3
CLTann
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I remember well about your last picture and told you how lovely you looked. You corrected me in saying that you had a wig on. Regardless, you have been in my prayer and I am so glad to hear your status again. Welcome back and keep us informed.


Ann
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Old 08-07-2006, 12:53 PM   #4
RobinP
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Wink

Good to see you posting Val. You're right it's a great group here.
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 08-07-2006, 02:20 PM   #5
StephN
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Wink Facing fears

Dear Val -
You wrote that article on breast cancer with such bravery and aplomb! I hope it is still "findable" on this site for those who did not know Val is a writer.

Glad you have been at least lurking - you will see that there is a lot of good news here lately as well as hope for those on the list to get Tykerb.

Facing our fears is always easier said than done. Coming here is doing a lot for many of us who are isolated in our diagnosis and want to interact and find others to talk with about what is happening to us. Recent patient privacy rules tend to serve to isolate us further from those in our cancer centers who may be suffering the same as we. Nurses are not supposed to say anything about other patients and it is not encouraged to chat in waiting rooms.

A feeling of impending doom is not unusual with aggressive cancers. It takes a lot of work to put that aside and move forward in some meaningful way.

See you again soon.
__________________
"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 08-07-2006, 08:58 PM   #6
al from Canada
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Dear Val,

Great to see you are OK..........we care about our group.
Good luck with your new career.
Al
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Old 08-08-2006, 07:34 PM   #7
mamacze
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Posts: 638
Dear Val,
It was so nice to meet you in Atlanta and how nice to welcome you back. Don't you feel a shred guilty; we all have "other" lives ...but we are all grateful when you check in and let us know you are OK. You look fabulous...I don't remember your wig pix, but you look so healthy and well in this pix. Keep writing; you have so much to contribute.
Love Kim from CT
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Old 08-12-2006, 08:21 AM   #8
Val Pfeiffer
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Posts: 159
Thanks, everyone! And yes, Kim, meeting you and everyone else in person in Atlanta was so cool. I still tell people about how I was able to "crash" the ASCO convention with the help of Joe and Christine :-)

The story I wrote in October 2005 can be accessed by clicking on my blog and navigating to October 2005. I don't post to the blog all that much anymore, but if one wanted to go back to November 2004 they could see my BC "diary" from the beginning. I onl recommmend that if you are bored or have trouble sleeping...it's pretty lengthy!!

XXOO
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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