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Old 09-22-2006, 07:13 AM   #1
Johanna Johannsdottir
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Location: Iceland
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Good news on brain mets

Hello all,

Had restults from CT-scan on abdomen and head yesterday. The mets in liver ar still all gone and mets in the brain are practicly gone, but not quite. My doctor said they have shrinked in this 2 months since radiation more than anyone could hope for or expect. They will continue shrinking, he said, because it takes longer time to deal with mets in the brain than in organs. Í also have regression in the bones. As he said: This is so good and there is hardly any cancer in your body. He himself was thrilled and I was like mummy and stared and had nothing to say in the beginning.
I´m of course thankful and humble and today I'm enjoying the beautiful autumn sun and colors.
I will continue on herceptin weekly at least till februar (one year). I just wanted to share with you this good news and thank you all for support and information. This site has done so much for me because one has to understand what one is facing and dealing with.

dx jan 2002 er+pr+ mastect. nodes 25/25
aug. 2005 dx in bones (navelbine, Femara), jan.2006 in liver (checked for HER then Taxotere, herceptin) and june dx 2006 in brain (Foculized radiation and again Femara, herceptin).

Again thanks for all support

Jóhanna in Iceland
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Old 09-22-2006, 12:08 PM   #2
Joy
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Thank YOU for the good news

This is so exciting and we are so glad that you shared this news. What a gift for you and us. Keep it up.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 09-22-2006, 12:58 PM   #3
StephN
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Smile Fantastic!

Good work, lady! You must be stronger than the "average bear." You are another good example of brain mets getting under control. Join the club!

Only thing that seems to be missing in your treatment regime is something to get tough with those bone mets. Are you on any kind of biphosphenate to discourage the cancer in bones??
I take Zometa, and have for over 3 years now, as a protection. With this long NED, I am cut down to one treatment of Zometa every 3 months.

Any bone building exercise is also good. I am sure you get some of that if I recall your previous posts correctly.
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"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 09-22-2006, 01:55 PM   #4
Johanna Johannsdottir
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Thank you girls,


I forgot to include Zometa in my regime plan. I have Zometa every four weeks. And there is something good happening in bones as the scanner showed. I will continue taking Zometa. By the way. I was told by another onc. on this conference that Tykerb was coming to Iceland in free use for the University hospital.

best regards

Jóhanna
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Old 09-22-2006, 08:26 PM   #5
Vanessa
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Congratulations on your good news!!
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Old 09-22-2006, 09:24 PM   #6
Lolly
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Yeahhh! And double Yeah on Tykerb "coming soon to a treatment center near you"

<3 Lolly
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Old 09-25-2006, 10:32 AM   #7
Jean
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Johanna,

So pleased to read your post! Congrads - and I wish you continued
improvment! Way to Go!

Will keep you in my prayers.

Jean
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Old 09-25-2006, 10:37 AM   #8
tousled1
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Johanna,

Great news!
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-25-2006, 06:40 PM   #9
SusanV
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So very Happy for You !
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Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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Old 10-01-2006, 04:36 AM   #10
Toril
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Congratulations on your good results. Enjoy!!!Toril
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Old 10-02-2006, 11:16 PM   #11
julie a
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fantastic news!
great to hear a winner!
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Old 10-03-2006, 07:37 AM   #12
Carol E
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Talking

Oh Johanna, what fabulous news!!! I'm so very happy for you, God Bless

Caro E
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Old 10-03-2006, 10:44 AM   #13
John21
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Smile

Great news !!!!!!



Very encouraging
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