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Old 12-19-2006, 03:10 AM   #1
Johanna Johannsdottir
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Join Date: Mar 2006
Location: Iceland
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More good news on brain mets

Hello my friends overseas,

I had a CT sscanner last week. Now I´m NED in the liver and the brain mets are getting smaller (vanishing). My onc. is so happy: Everything we do is working, he says.
My health is good and I feel good (except the typical regarding the age). I look good (people say) and I believe them. For last 3 months I have worked half time, writing interviews and articles of all sorts. I live 50 km outside Reykjavik-capital and try to find intresting people here near me so I don't have to drive to work (over a slippery and snowy moor and mountains). With phones, internet and e-mails one can work wherever.
In the beginning of new year I´m going to work full time.
My son is happy waiting for Christmas and presents, like any other 8 year. So we are just decorating and baking traditional cookies when he comes from school.

I wish you all merry christmas and a happy new year.
Jóhanna in Iceland

P.S.
I will continue Herceptin weekly, Femara daily and Zometa every 4 weeks.

P.S You think we will have white christmas here in Iceland?
No, like recent years it will surely rain with 10°C.
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Old 12-19-2006, 03:36 AM   #2
tousled1
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Location: Acworth, GA
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Congratulations Johanna! Seems like the chemo cocktail is working! Of course you'll have a white Christmas. Enjoy it with your son.
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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 12-19-2006, 06:35 AM   #3
mts
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Wonderful news Johanna- so good to hear you are doing so well.

Have a very, merry Christmas !!!

Warmly,

Maria (MTS)
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Old 12-19-2006, 10:42 AM   #4
heblaj01
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Jóhanna,
The latest good news on your progress in fighting back your cancer are indeed pleasant to read.
The most impressive part,in my view, is the regression of the brain mets with the regimen of Herceptin, Femara & Zometa.
In principle, Herceptin is not able to cross the blood brain barrier. So it is not likely to be the key to your successfull treatment.
I can't find definitive answers as to what Femara can do for the brain: one web site states that it is unknown if it reaches the brain. The Novartis web site (manufacturer of Femara) says that the drug is widely distributed in the body but does not mention specifically the brain. Even if it drastically reduces the circulating estrogens outside the brain, it is now known that large quantities of estrogens (estradiol alpha & beta) are secreted in the brain by nerves in the hippocampus.
I found only one definite mention of brain mets successfully treated with Femara:
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
Letrozole for brain and scalp metastases from breast cancer--a case report.
Al tried to find answers to the same questions from Forum members but the answers are inconclusive :
http://www.her2support.org/vbulletin...ad.php?t=19324
Brain mets and hormonal therapy

So your success calls for an explanation since, if you are not a special case, your onc may have found a combination treatment applicable to others.
Could you ask him for his thoughts?
Did you weaken the blood brain barrier in some way(without the help of radiotherapy)?

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Old 12-19-2006, 11:01 AM   #5
Becky
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Congratulations Johanna and Merry Christmas and a Happy New Year
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 12-19-2006, 11:18 AM   #6
tricia keegan
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Red face Congratulations

So nice to hear some good news,especially regarding the brain

mets as my friend has just found out her cancer has progressed
to her brain.
It gives such hope to all of us to share your good news,thank you.
Happy Christmas!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 12-19-2006, 12:44 PM   #7
DEBBIE S
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Location: ALEXANDRIA, VA
Posts: 40
Johanna, Glad to hear of your GOOD NEWS ..... What a great Christmas present both for you and your family ...... Merry Christmas and Happy New Year !!!!

Debbie
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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Old 12-19-2006, 12:53 PM   #8
Mary Anne in TX
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Location: San Antonio, TX
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Such wonderful holiday news, Johanna! Merry Christmas and happy baking!
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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